Tagged Cancer

Music Therapy: Why Doctors Use it to Help Patients Cope

Music therapy is increasingly used to help patients cope with stress and promote healing.

“Focus on the sound of the instrument,” Andrew Rossetti, a licensed music therapist and researcher said as he strummed hypnotic chords on a Spanish-style classical guitar. “Close your eyes. Think of a place where you feel safe and comfortable.”

Music therapy was the last thing that Julia Justo, a graphic artist who immigrated to New York from Argentina, expected when she went to Mount Sinai Beth Israel Union Square Clinic for treatment for cancer in 2016. But it quickly calmed her fears about the radiation therapy she needed to go through, which was causing her severe anxiety.

“I felt the difference right away, I was much more relaxed,” she said.

Ms. Justo, who has been free of cancer for over four years, continued to visit the hospital every week before the onset of the pandemic to work with Mr. Rossetti, whose gentle guitar riffs and visualization exercises helped her deal with ongoing challenges, like getting a good night’s sleep. Nowadays they keep in touch mostly by email.

The healing power of music — lauded by philosophers from Aristotle and Pythagoras to Pete Seeger — is now being validated by medical research. It is used in targeted treatments for asthma, autism, depression and more, including brain disorders such as Parkinson’s disease, Alzheimer’s disease, epilepsy and stroke.

Live music has made its way into some surprising venues, including oncology waiting rooms to calm patients as they wait for radiation and chemotherapy. It also greets newborns in some neonatal intensive care units and comforts the dying in hospice.

While musical therapies are rarely stand-alone treatments, they are increasingly used as adjuncts to other forms of medical treatment. They help people cope with their stress and mobilize their body’s own capacity to heal.

“Patients in hospitals are always having things done to them,” Mr. Rossetti explained. “With music therapy, we are giving them resources that they can use to self-regulate, to feel grounded and calmer. We are enabling them to actively participate in their own care.”

The Healing Power of Music

“A Song for Wayne,” performed by Edie Elkan and written as she played at the bedside of a student who was dying.

Even in the coronavirus pandemic, Mr. Rossetti has continued to perform live music for patients. He says that he’s seen increases in acute anxiety since the onset of the pandemic, making musical interventions, if anything, even more impactful than they were before the crisis.

Mount Sinai has also recently expanded its music therapy program to include work with the medical staff, many of whom are suffering from post-traumatic stress from months of dealing with Covid, with live performances offered during their lunch hour.

It’s not just a mood booster. A growing body of research suggests that music played in a therapeutic setting has measurable medical benefits.

“Those who undergo the therapy seem to need less anxiety medicine, and sometimes surprisingly get along without it,” said Dr. Jerry T. Liu, assistant professor of radiation oncology at the Icahn School of Medicine at Mount Sinai.

A review of 400 research papers conducted by Daniel J. Levitin at McGill University in 2013 concluded that “listening to music was more effective than prescription drugs in reducing anxiety prior to surgery.”

“Music takes patients to a familiar home base within themselves. It relaxes them without side effects,” said Dr. Manjeet Chadha, the director of radiation oncology at Mount Sinai Downtown in New York.

It can also help people deal with longstanding phobias. Mr. Rossetti remembers one patient who had been pinned under concrete rubble at Ground Zero on 9/11. The woman, who years later was being treated for breast cancer, was terrified by the thermoplastic restraining device placed over her chest during radiation and which reawakened her feelings of being entrapped.

“Daily music therapy helped her to process the trauma and her huge fear of claustrophobia and successfully complete the treatment,” Mr. Rossetti recalled.

Some hospitals have introduced prerecorded programs that patients can listen to with headphones. At Mount Sinai Beth Israel, the music is generally performed live using a wide array of instruments including drums, pianos and flutes, with the performers being careful to maintain appropriate social distance.

“We modify what we play according to the patient’s breath and heart rate,” said Joanne Loewy, the founding director of the hospital’s Louis Armstrong Center for Music & Medicine. “Our goal is to anchor the person, to keep their mind connected to the body as they go through these challenging treatments.”

Edie Elkan plays the harp as part of the music therapy program at Robert Wood Johnson Hospital in New Jersey.
Edie Elkan plays the harp as part of the music therapy program at Robert Wood Johnson Hospital in New Jersey.Edie Elkan

Dr. Loewy has pioneered techniques that use several unusual instruments like a Gato Box, which simulates the rhythms of the mother’s heartbeat, and an Ocean Disc, which mimics the whooshing sounds in the womb to help premature babies and their parents relax during their stay in noisy neonatal intensive care units.

Dr. Dave Bosanquet, a vascular surgeon at the Royal Gwent Hospital in Newport, Wales, says that music has become much more common in operating rooms in England in recent years with the spread of bluetooth speakers. Prerecorded music not only helps surgical patients relax, he says, it also helps surgeons focus on their task. He recommends classical music, which “evokes mental vigilance” and lacks distracting lyrics, but cautions that it “should only be played during low or average stress procedures” and not during complex operations, which demand a sharper focus.

Music has also been used successfully to support recovery after surgery. A study published in The Lancet in 2015 reported that music reduced postoperative pain and anxiety and lessened the need for anti-anxiety drugs. Curiously, they also found that music was effective even when patients were under general anesthesia.

None of this surprises Edie Elkan, a 75-year-old harpist who argues there are few places in the health care system that would not benefit from the addition of music. The first time she played her instrument in a hospital was for her husband when he was on life support after undergoing emergency surgery.

“The hospital said that I couldn’t go into the room with my harp, but I insisted,” she said. As she played the harp for him, his vital signs, which had been dangerously low, returned to normal. “The hospital staff swung the door open and said, ‘You need to play for everyone.’”

Ms. Elkan took these instructions to heart. After she searched for two years for a hospital that would pay for the program, the Robert Wood Johnson University Hospital in Hamilton, N.J., signed on, allowing her to set up a music school on their premises and play for patients at all stages in their hospitalization.

Ms. Elkan and her students have played for over a hundred thousand patients in 11 hospitals that have hosted them since her organization, Bedside Harp, was started in 2002.

In the months since the pandemic began, the harp players have been serenading patients at the entrance to the hospital, as well as holding special therapeutic sessions for the staff outdoors. They hope to resume playing indoors later this spring.

For some patients being greeted at the hospital door by ethereal harp music can be a shocking experience.

Recently, one woman in her mid-70s turned back questioningly to the driver when she stepped out of the van to a medley of familiar tunes like “Beauty and the Beast” and “Over the Rainbow” being played by a harpist, Susan Rosenstein. “That’s her job,” the driver responded, “to put a smile on your face.”

While Ms. Elkan says that it is hard to scientifically assess the impact — “How do you put a number on the value of someone smiling who has not smiled in six months?”— studies suggest that harp therapy helps calm stress and put both patients and hospital staff members at ease.

Ms. Elkan is quick to point out that she is not doing music therapy, whose practitioners need to complete a five-year course of study during which they are trained in psychology and aspects of medicine.

“Music therapists have specific clinical objectives,” she said. “We work intuitively — there’s no goal but to calm, soothe and give people hope.”

“When we come onto a unit, we remind people to exhale,” Ms. Elkan said. “Everyone is kind of holding their breath, especially in the E.R. and the I.C.U. When we come in, we dial down the stress level several decibels.”

Ms. Elkan’s harp can do more than just soothe emotions, says Ted Taylor, who directs pastoral care at the hospital. It can offer spiritual comfort to people who are at a uniquely vulnerable moment in their lives.

“There is something mysterious that we can’t quantify,” Mr. Taylor, a Quaker, said. “I call it soul medicine. Her harp can touch that deep place that connects all of us as human beings.”

Breast Cancer Centers Urge Annual Scans, Counter to U.S. Guidelines

A panel recommends biennial screenings, starting at 50, but a new study took issue with the way hundreds of centers are telling women 40 and up to come in yearly. Some experts contend that frequent mammograms can “do more harm than good.”

My last breast cancer screening was “b.c.” — before Covid — just a few weeks before the mysterious new disease was detected in China. The timing was perfect: Everything was normal, and by the time we went into lockdown, my to-do list no longer included a mammogram.

But by November 2020, exactly one year after that scan, I started getting barraged by phone calls and text messages telling me I was due for another one.

“MAMMO MATTERS,” screamed one in all capital letters. “Breast cancer does not take a break during pandemics, and neither should you.” I was well aware that national health guidelines recommend a mammogram only every other year for women at average risk for breast cancer. But there has been a cacophony of advice in recent years as different groups recast their recommendations, often contradicting one another. So the messages were unnerving.

It turns out my imaging center is not alone in badgering women to have mammograms more frequently than the U.S. Preventive Services Task Force deems optimal. A recent study found that hundreds of breast centers tell women who are not at elevated risk of cancer to have a routine scan every year, and to start at 40.

The task force, however, recommends regular mammograms every two years starting at 50. Its guidelines do recommend that women in their 40s discuss mammography with their doctors, evaluate the risks and benefits and come to an individual decision. (The panel’s recommendations extend to age 74; it has said there is not enough evidence to make recommendations past that age.)

The new study, published in JAMA Internal Medicine on March 15, was accompanied by a rather scathing editorial that said extra screening can do “more harm than good.”

“I don’t think breast cancer centers that have clear financial benefits from increasing mammography should be the ones that are giving out patient advice, particularly when it conflicts with the patient’s primary care provider’s advice and the task force’s advice,” said Dr. Rita F. Redberg, editor in chief of JAMA Internal Medicine, who co-wrote the editorial along with Dr. Anand R. Habib and Dr. Deborah Grady.

The American College of Radiology took umbrage, shooting back that it was “outrageous” to assert that breast cancer centers were promoting mammograms for financial reasons, and that the radiologists’ had a different set of guidelines.

When the pandemic started, both routine screenings and appointments triggered by troubling symptoms like the discovery of a lump were delayed as facilities shut down. Even when they reopened, many patients were reluctant to go in.

But Dr. Dana Smetherman, who chairs the American College of Radiology’s breast imaging commission, said the breast centers’ recommendations for more frequent screening predate the pandemic.

“What this study is telling us is that the experts in breast cancer in the U.S. do not support these recommendations,” Dr. Smetherman said in an interview, referring to the U.S. task force’s guidelines.

Indeed: Both the college of radiology and the American Society of Breast Surgeons recommend annual mammograms starting at age 40 (Dr. Redberg’s institution, the University of California, San Francisco, also recommends that schedule).

The American Cancer Society scaled back its recommendations recently, however, endorsing yearly scans starting at age 45, with the option of switching to every other year at age 54. The American College of Obstetricians and Gynecologists recommends women at average risk start mammography at 40, but “every one or two years.”

The debate over screening frequency for breast cancer — the second leading cause of cancer death for women after lung cancer — dates back to 2009. That is when the U.S. Preventive Services Task Force, an independent expert panel that reviews the evidence and provides guidance to doctors and insurers, rolled back its mammography recommendations for women who were deemed at average risk for breast cancer.

Screening can actually be harmful, especially for younger women, the panel found. False positive findings can trigger unnecessary procedures like biopsies, or lead to what experts call over-diagnosis — the aggressive treatment of slow-growing tumors that might never become life-threatening, but cannot be distinguished from fast-growing tumors.

When women had mammograms every other year, the harms of false positives and unnecessary treatment were reduced, the panel determined, while it found the life-saving benefits remained relatively unchanged.

But some experts believe the panel overstated the harms of more frequent screenings. The appropriate schedule for screenings can vary from doctor to doctor, and patient to patient, and has become quite confusing.

“Many women may not even be aware of the guidelines, or that there may be any downside to mammography, and that they have the option to begin screening at age 45 or 50,” Dr. Jennifer L. Marti, an assistant professor of surgery at Weill Cornell Medicine who led the new study, said in an interview. “In almost every other country, women start at 50.”

While many women might assume that “the pros of breast cancer screening outweigh the harms,” Dr. Marti said, that is not always the case for women who aren’t at elevated risk.

Dr. Marti and her co-authors, Mark Lee and Neal Patel, two Weill Cornell researchers, decided to examine the recommendations posted on the websites of some 606 breast cancer centers in the United States. They found that 376 centers — over half — made recommendations that differed from those of the U.S. task force, saying women at average risk for breast cancer should start imaging at age 40.

And 347 centers said women should not only start at 40, but continue annually.

More rigorous screening may be appropriate for some high risk groups, like Ashkenazi Jewish women, who are more likely to carry mutations that put them at risk for breast and ovarian cancer, and Black women, who were likely underrepresented in mammography screening trials, Dr. Marti said.

Women who want help assessing their individual risk to make screening decisions can use an online tool developed by Dr. Margaret Polaneczky, a gynecologist from Weill Cornell Medicine, and Elena Elkin, a research scientist at Memorial Sloan Kettering Cancer Center, Dr. Marti suggested.

As for myself, I’ve been on a two-year plan for a while. I do regular breast self-examinations, and have clinical breast exams too. So even though I felt a smidgen of irrational guilt after receiving the text messages, I politely asked a receptionist to please stop calling. I promised I’d be in touch.

Getting a Prescription to Die Remains Tricky Even as Aid-in-Dying Bills Gain Momentum

Linda Heim knew her dad didn’t plan to wait for the cancer to kill him. For decades, he’d lived in Montana, which they’d thought was one of the few places where terminally ill people could get a prescription to end their life.

After two years of being sick, Heim’s dad got the diagnosis in 2019: stage 4 kidney cancer. His physician offered treatments that might extend his life by months. Instead, the 81-year-old asked the doctor for help dying. Heim said her parents left the appointment in their hometown of Billings with two takeaways: The legality of medically assisted death was questionable in Montana, and her father’s physician didn’t seem willing to risk his career to put that question to the test.

“My parents knew when they left there that was the end of that conversation,” said Heim, now 54. “My dad was upset and mad.”

The day after the appointment, Heim’s mother went grocery shopping. While she was gone, Heim’s dad went to the backyard and fatally shot himself. (Heim asked that her father’s name not be published due to the lingering stigma of suicide.)

About a decade earlier, in 2009, the Montana Supreme Court had, in theory, cracked open the door to sanctioned medically assisted death. The court ruled physicians could use a dying patient’s consent as a defense if charged with homicide for prescribing life-ending medication.

However, the ruling sidestepped whether terminally ill patients have a constitutional right to that aid. Whether that case made aid in dying legal in Montana has been debated ever since. “There is just no right to medical aid in dying in Montana, at least no right a patient can rely on, like in the other states,” said former state Supreme Court Justice Jim Nelson. “Every time a physician does it, the physician rolls the dice.”

Every session of the biennial Montana state legislature since then, a lawmaker has proposed a bill to formally criminalize physician-assisted death. Those who back the bills say the aid is morally wrong while opponents say criminalizing the practice would be a backstep for patients’ rights. But so far, lawmakers haven’t gained enough support to pass any legislation on the issue, though it has been close. The latest effort stalled on March 1, on a split vote.

Even the terminology to describe the practice is disputed. Some say it’s “suicide” anytime someone intentionally ends their life. Others say it’s “death with dignity” when choosing to expedite a painful end. Such debates have gone on for decades. But Montana remains the sole state stuck in a legal gray zone, even if the practice can still seem taboo in many states with clear laws. Such continued uncertainty makes it especially hard for Montana patients like Heim’s dad and their doctors to navigate what’s allowed.

“Doctors are risk-averse,” said Dr. David Orentlicher, director of the health law program at the University of Nevada-Las Vegas, who helped write clinical aid-in-dying guidelines published in the Journal of Palliative Medicine in 2016. “The fear of being sued or prosecuted is still there.”

Despite that, access to medical aid in dying is gaining momentum across the U.S. Outside Montana, eight states and the District of Columbia allow the life-ending aid — six of them since 2014. So far in 2021, legislators in at least 19 states have pushed aid-in-dying bills, most seeking to legalize the practice and some seeking to drop barriers to existing aid such as expanding which medical professionals can offer it. Many are repeat legalization efforts with some, like in New York, dating as far back as 1995. Only the Montana bill this year specifically sought to criminalize it.

North Dakota considered legislation to legalize medically assisted death for the first time. Rep. Pamela Anderson, a Democrat from Fargo who proposed the measure after hearing from a cancer patient, said she wasn’t surprised when the bill failed in February in a 9-85 vote. The state’s medical association said it was “incompatible with the physician’s role as healer.” Angry voters called Anderson asking why she wanted to kill people.

“But I heard from just as many people that this was a good bill,” Anderson said. “There is momentum to not let this concept go away.”

Back in Montana, now retired state Supreme Court Justice Nelson said he has always regretted joining the majority in the case that allowed the practice because the narrow ruling focused on physicians’ legal defense, not patients’ rights. Having watched a friend die slowly from disease, Nelson, 77, wants the choice himself if ever needed.

Despite — or because of — the court decision, some Montana doctors do today feel that they can accommodate such patient decisions. For example, Dr. Colette Kirchhoff, a hospice and palliative care physician, said until she retired from private practice last year she considered patients’ requests for life-ending drugs.

Physicians who help in such cases follow well-established guidelines set by other states, Kirchhoff said. A patient must have six months or less to live — a fact corroborated by a second physician; can’t be clinically depressed; needs to ask for the aid; and be an adult capable of making health care decisions, which is determined by the attending physician. They must also administer the life-ending medication themselves.

“You’re obviously not going to do a case that is vague or nebulous or has family discord,” Kirchhoff said. “The doctors who are prescribing have felt comfortable and that they’re doing the right thing for their patient, alleviating their suffering.” Of her few patients who qualified for a prescription, she said, none actually took the drugs. Kirchhoff noted that, in some cases, getting the prescription seemed to provide comfort to her patients — it was enough knowing they had the option if their illness became unbearable.

For the past six legislative sessions — dating to 2011 — a Montana lawmaker has proposed a bill to clarify that state law doesn’t allow physician-assisted death. Republican Sen. Carl Glimm picked up that effort the past two sessions. Glimm said the current status, based on the more than decade-old court decision, sends a mixed message in a state that the Centers for Disease Control and Prevention ranks as having among the nation’s highest suicide rates. Glimm said allowing someone to end their life because of pain from a terminal illness could normalize suicide for people living with depression, which is also a form of pain.

“It’s really hard because I do sympathize with them,” Glimm said. “What it boils down to is, if you’re going to take your own life, then that’s suicide.”

Kim Callinan, president and CEO of national nonprofit Compassion & Choices, said the comparison to suicide is frustrating. “People who are seeking medical aid in dying want to live, but they are stricken with a life-ending illness,” she said.

Glimm and his bill’s supporters say that some patients could be pressured into it by family members with something to gain, and doctors could prescribe it more often than they should.

But Callinan, whose group advocates for aid in dying, said that since Oregon first legalized it in 1997, no data has shown any merit to the warnings about abuse and coercion. One study showed no evidence of heightened risk of abuse within the practice for vulnerable populations such as the elderly. But critics have said states aren’t doing enough to track the issue.

Leslie Mutchler’s son, TJ Mutchler, sought a medically assisted death after being diagnosed with terminal metastatic pancreatic cancer in 2016. He wanted the choice his grandfather, Bob Baxter, fought for but never got. Baxter died on the same day a Montana court initially ruled in his favor to allow medically assisted death. TJ Mutchler was ultimately able to get a prescription to end his life. (James Maya)

By now, Leslie Mutchler, 60, knows most of the people on all sides of the debate after years of testifying in support of protecting aid in dying. Her dad, Bob Baxter, was a plaintiff in the case that eventually led to the 2009 Montana Supreme Court decision on medically assisted death. After leukemia whittled his body for years, he died in 2008 without the option, the same day a lower court ruled in his favor.

Mutchler said she didn’t understand how complicated the Supreme Court’s ultimate ruling was until her son TJ was diagnosed with terminal metastatic pancreatic cancer in 2016.

He was 36 and lived in Billings, Montana. By then, the 6-foot-5 man had lost 125 pounds off what had been a 240-pound frame. He couldn’t keep food down and needed a feeding tube for medicine and water. TJ Mutchler wanted to have the choice his grandfather never got. But when he went to his physician and asked for aid in dying, the response was it wasn’t legal. Eventually, Mutchler found a doctor to evaluate her son and write the prescriptions for phenobarbital and amitriptyline. TJ took the drugs more than two months later and died.

“People contact me asking how to find someone and it’s difficult,” Mutchler said. “That’s why people end up taking matters into their own hands.” Research into terminally ill populations is limited, but one national study published in 2019 found the risk of someone with cancer taking their own life is four times higher than the general population.

Roberta King’s dad, Bob Baxter, was a plaintiff in the 2009 Montana Supreme Court case that opened the door to medically assisted death, which state legislators have since regularly tried to formally criminalize. King, shown testifying in favor of aid-in-dying protections on Feb. 26, 2021, hasn’t missed a hearing on such bills.(Screengrab via Montana Legislative Services Division)

For Roberta King, another one of Baxter’s daughters, the ongoing fight over aid in dying in Montana means she knows every other winter she’ll make the more than 200-mile round trip from her Missoula home to the state capital. King, 58, has testified against all six bills that sought to ban aid in dying following her dad’s case. She memorized a speech about how her dad became so thin after his medicine stopped working that it hurt for him to sit.

“It’s still terrible, you still have to get up there in front of everybody and they know what you’re going to say because it’s the same people doing the same thing,” King said. But skipping a hearing doesn’t feel like an option. “If something were to happen to this and I didn’t try, I would never forgive myself,” she said.

Virus Variants Likely Evolved Inside People With Weak Immune Systems

Virus Variants Likely Evolved Inside People With Weak Immune Systems

Growing evidence suggests that people with cancer and other conditions that challenge their immune systems may be incubators of mutant viruses.

A Covid patient in the I.C.U. of Sarasota Memorial Hospital in Florida last month.
A Covid patient in the I.C.U. of Sarasota Memorial Hospital in Florida last month.Credit…Shannon Stapleton/Reuters
Apoorva Mandavilli

  • March 15, 2021, 3:23 p.m. ET

The version of the coronavirus that surfaced in Britain late last year was shocking for many reasons. It came just as vaccines had offered a glimpse of the end of the pandemic, threatening to dash those hopes. It was far more contagious than earlier variants, leading to a swift increase in hospitalizations. And perhaps most surprising to scientists: It had amassed a large constellation of mutations seemingly overnight.

A coronavirus typically gains mutations on a slow-but-steady pace of about two per month. But this variant, called B.1.1.7, had acquired 23 mutations that were not on the virus first identified in China. And 17 of those had developed all at once, sometime after it diverged from its most recent ancestor.

Experts said there’s only one good hypothesis for how this happened: At some point the virus must have infected someone with a weak immune system, allowing it to adapt and evolve for months inside the person’s body before being transmitted to others. “It appears to be the most likely explanation,” said Dr. Ravindra Gupta, a virologist at the University of Cambridge.

If true, the idea has implications for vaccination programs, particularly in countries that have not yet begun to immunize their populations. People with compromised immune systems — such as cancer patients — should be among the first to be vaccinated, said Dr. Adam Lauring, a virologist and infectious disease physician at the University of Michigan. The faster that group is protected, the lower the risk that their bodies turn into incubators for the world’s next supercharged mutant.

“We should give the best shot we can, both literally and figuratively, to protect this population,” Dr. Lauring said.

That might be complicated, he added. For the same reason that these people don’t mount a strong immune response to the virus, vaccines might not work well in them. So they may need to be treated with cocktails of monoclonal antibodies as well, he said.

Like other viruses, the coronavirus collects mutations every time it replicates. The overwhelming majority of those genetic glitches are insignificant and transient. In most people, an active infection lasts only about a week, not long enough for the virus to acquire more than one noteworthy mutation, if any.

Mutations that make the coronavirus more contagious or enable it to dodge the immune system are extremely rare, researchers reported in a study published last week in the journal Science. “But if they do occur, and if they can get transmitted, then it’s open season,” said Katrina Lythgoe, an evolutionary biologist at the University of Oxford who led the study.

Over a period of months to years, the virus may string together several such mutations. Scientists can observe this slow evolution using a molecular “clock” that captures the changes over time. But in a person with a weak immune system, this timeline can be greatly accelerated.

Multiple studies have shown that in some people who are immunocompromised, the virus can persist for more than eight months, ample time and opportunity to keep evolving.

“If we look at several time points through that course of infection, and we look at the virus population in that patient, we see — every time — different variants popping up with a large turnover rate,” said Vincent Munster, a virologist at the National Institute of Allergy and Infectious Diseases who led one of the studies.

If one of these variants that has gained important mutations is transmitted to someone else, it may spread quickly through the population and seem to have emerged out of nowhere — as in the case of the variant that walloped Britain, and perhaps others identified in South Africa and Brazil.

“That’s a pretty decent hypothesis that they’ve come from people with persistent infection,” Dr. Lythgoe said of the variants. “By keeping infection rates low, you’re going to reduce the number of immunocompromised people who are infected and reduce the chance that they occur.”

“Immunocompromised” is a nebulous term encompassing a wide range of conditions — from diabetes and rheumatoid arthritis to leukemia and lymphoma — and experts disagreed on which conditions may lead to variants.

Some say the list should include older people, as well as those who take medications that suppress the immune system and anyone who does not produce a robust set of antibodies.

“We learned from the vaccines that antibodies matter,” said Paul Duprex, director of the Center for Vaccine Research at the University of Pittsburgh. “It’s very important to keep an eye on people who are immune-suppressed, who don’t have fully functional immune systems.”

Dr. Lauring said he was most worried about people with blood-related cancers like leukemia, but did not have strong concerns about those taking drugs like Humira or Enbrel, which are used to treat rheumatoid arthritis.

“It’s a different kind of immunosuppression that I’m not sure would lead to this, but no one knows for sure,” he said.

Some people with weak immune systems have been known to transmit other viruses over long periods, Dr. Lauring noted. One man in England has shed poliovirus for at least 28 years. Others have had persistent infections with norovirus or influenza.

“We’ve been dealing with this for a long time,” he said. “But just like everything with Covid, we’re dealing with it on a big scale.”

He and the other experts emphasized that regardless of the risks, it is important not to stigmatize or blame people who have compromised immune systems. Instead, they said, the focus should be on limiting their exposure to the virus.

“Let’s get the vaccines into people, let’s do good distancing, let’s do good masking,” Dr. Duprex said. “Everything that we can do to stop the virus spreading is really very important.”

Weekly Health Quiz: Runner's High, Vaccine Side Effects and Life After Vaccination

1 of 7

These brain chemicals appear to be the main reason that runners experience the euphoria known as “runner’s high”:





2 of 7

New recommendations from the Centers for Disease Control and Prevention allow adults who have been fully vaccinated against Covid-19 to:

Gather in small groups without social distancing

Allow grandparents to visit unvaccinated grandchildren

Have mask-free dinner parties with vaccinated friends

All of the above

3 of 7

This group is more likely to experience Covid vaccine side effects:



Women and men experience side effects more or less equally

4 of 7

Compared to people of a healthy weight, people who are underweight who develop Covid-19 are:

More likely to be hospitalized

Less likely to be hospitalized

More likely to die

Less likely to die

5 of 7

New guidelines for lung cancer, the leading cause of cancer deaths, advise annual screening starting at age 50 for those who have a smoking history of at least a pack a day for how many years?

10 years

20 years

30 years

Only current smokers should get screened

6 of 7

Symptoms of myasthenia gravis can include which of the following symptoms?

Progressive weakness

Drooping eyelid

Difficulty swallowing

All of the above

7 of 7

Myeloproliferative neoplasms are a type of cancer that affects these blood cells:

Red blood cells

White blood cells


All of the above

Nobody Wants Cancer. But a ‘Big C’ Label Has Surprising Upsides.


Nobody Wants Cancer. But a ‘Big C’ Label Has Surprising Upsides.

Classifying a rare blood disorder as a cancer opened new doors for disease investigation, treatment and hope for a cure.

Credit…Paper Illustration by Reina Takahashi, photographed by Tony Cenicola/The New York Times

  • March 11, 2021, 5:00 a.m. ET

I have a rare blood disorder. When it was diagnosed 25 years ago, it was called an “orphan disease,” meaning the small number of people affected didn’t justify research investments by major pharmaceutical companies.

Enter the World Health Organization and its 2008 decision to classify the condition as a blood “cancer.” This opened new doors for disease investigation and understanding. It prompted a growing number of super specialist practitioners, and most important, hope for some 300,000 people living in the United States with what are now called myeloproliferative neoplasms, or MPNs.

Nobody likes to hear a cancer diagnosis, particularly for a disease they thought was benign. In fact, when I first saw my blood disorder referred to as a cancer, I wrote to the MPN Research Foundation, a nonprofit research and advocacy group, and suggested they remove the “Big C” word from their website. How, I thought, could they be so misleading?

That’s when I discovered I was behind the times. MPNs were indeed reclassified as a malignant condition of the bone marrow, affecting sometimes one, two or all three types of blood cells: white cells, red cells and platelets.

The average age people are diagnosed with an MPN is 60-something. My diagnosis came at age 38. For the next 15 years, I was treated for essential thrombocythemia, a type of MPN that caused my bone marrow to produce significantly higher than normal numbers of platelets. The proliferation of platelets put me at risk for dangerous clots and ultimately led to complete blockages of two important veins of the portal system, which carries blood to the liver.

The Big C label began to look like good news.

Once MPNs were classified as blood cancers — including essential thrombocythemia, polycythemia vera and myelofibrosis — interest grew from research laboratories, major medical centers, and small and mega pharmaceutical companies, which now saw these rare and poorly understood conditions as an opportunity. Perhaps pieces to the MPN puzzle could shed light on more common blood cancers, like leukemia and lymphoma. And perhaps treatments for those widely studied cancers could be used to treat MPNs.

“The cancer designation did open up significant new funding opportunities, for example from the National Cancer Institute,” said Barbara Van Husen, board chair of the MPN Research Foundation. “It has definitely accelerated research.” There are more than 200 clinical trials underway for various MPNs, as well as ongoing research into stem cell transplantation, currently the only potential cure for these rare cancers.

In my case, for reasons researchers are working to understand, my bone marrow flipped a switch. I was no longer making excessive platelets. Instead I was producing too many red cells and was given a revised diagnosis of polycythemia vera, a distinctly different MPN. I went for regular phlebotomies, the modern version of bloodletting in which pints of my blood were drained into a collection bag to reduce blood volume. Think blood transfusion, reversed.

Doctors increased the dose of the 30-year-old chemotherapy drug I had been taking since my blood clots first appeared. The drug is still considered standard of care “if well tolerated.” It effectively adjusted my red counts. Unlike newer, more targeted drugs, however, it does not discriminate, potentially killing off not just red cells but white cells and platelets as well.

I continued to live a full and largely unaffected life, though I often suffered symptoms such as debilitating headaches and bone pain.

The hallmark fatigue of these blood disorders was not yet on my radar. I hiked. I cycled. I traveled. I was a night owl typically functioning “well” on five to six hours of sleep.

Then, in September of 2019, my summer bike rides became an exhausting effort. By October, I was so fatigued that walking up a slightly inclined sidewalk had me leaning on a lamppost to catch my breath. Doctors identified scarring (“fibrosis”) in my bone marrow, elevating my diagnosis once again, to the third evolution of my MPN journey, myelofibrosis.

“You’re a poster child for exploring new drug therapies for MPNs,” Dr. Ellen Ritchie, of Weill Cornell Medical Center in Manhattan, recently told me. Just seven months into my participation in a global phase 2 clinical trial for a new combination drug therapy, tests indicated significant, measurable improvement. It appears my disease is beginning to reverse.

More than two decades after my first of many bone marrow biopsies, I have more energy than many of the “healthy” people I know.

We tend to think of cancer as acute. Get it out quickly, go through treatments, prevent it from spreading. But for those with a chronic cancer like an MPN, there isn’t a distinctive beginning, middle and end. It can be overwhelming, emotionally exhausting, and even as we learn more about the disease, full of uncertainty.

“Often, individuals with a chronic illness, like cancer, are more challenged to be hopeful about their future, while also needing to be focused on thriving on a daily basis,” says Laura Kaplan, a licensed clinical social worker whose Connecticut practice helps people navigate serious illness. “It is important for their identity and quality of life to try to keep a good perspective about living with the process of their disease.”

For years, I chose not to let my condition define me. I chose not to identify myself as someone living with cancer. I would simply live my life fully, day to day. I would work hard and play hard, enjoy raising my two boys, deal with whatever challenged my health, and keep on moving. That approach continues to serve me well.

Ruth Fein Revell, a health and environment writer, serves on a patient advisory board of the MPN Research Foundation.

Weekly Health Quiz: Covid Vaccines, Side Effects and Exercise

1 of 7

Which statement about Covid vaccines is not true?

It takes several weeks to build up immunity after vaccination

Current vaccines are very effective in protecting against serious illness

Once you are vaccinated, you no longer need to wear a mask

Vaccine side effects may be more pronounced after a second shot

2 of 7

These animals at the San Diego Zoo were given an experimental coronavirus vaccine to protect against the virus:





3 of 7

The new Covid vaccine from Johnson & Johnson differs from earlier vaccines in that it requires:

One shot

Two shots

Three shots

It is given orally

4 of 7

This side effect of the Covid vaccine may be mistaken for cancer on a mammogram:

Arm pain

Skin redness

Swollen lymph nodes

Muscle inflammation

5 of 7

After the United States, this country has reported the highest number of Covid-related deaths:





6 of 7

Drinking alcohol has been tied to an increased risk of this form of cancer:

Mouth and throat cancer

Breast cancer

Colon cancer

All of the above

7 of 7

Older adults who attended twice-a-week aerobic dance classes showed enhancements in the medial temporal lobe, a part of the brain critical for:

Motor activities

Sound sleep


All of the above

Drinking Alcohol and Cancer: Should Your Cocktail Carry a Cancer Warning?

Should Your Cocktail Carry a Cancer Warning?

As pandemic disruptions lead many of us to drink more, experts underscore the link between alcohol and disease.

Credit…Getty Images
Anahad O’Connor

  • March 4, 2021, 5:00 a.m. ET

When the pandemic struck last year, many Americans rushed to stock up on alcohol, causing retail sales of wine, beer and liquor to surge across the country.

But the uptick in sales was a worrying sign for health experts focused on cancer prevention. In recent years, a growing number of medical and public health groups have introduced public awareness campaigns warning people to drink with caution, noting that alcohol is the third leading preventable cause of cancer, behind tobacco and obesity.

In October, the American Society for Clinical Oncology (ASCO), which represents many of the nation’s top cancer doctors, along with the American Institute for Cancer Research, the American Public Health Association and five other groups called on the federal government to add a cancer warning to alcohol labels, saying there was strong scientific consensus that alcohol can cause several types of cancer, including breast and colon cancers. While medical experts have long recognized alcohol as a risk factor for various cancers, including cancers of the mouth, throat, voice box, esophagus and liver, a survey conducted by ASCO in 2017 of 4,016 American adults found that fewer than a third recognized alcohol as a risk factor for cancer.

Other countries are stepping up public health efforts to rein in alcohol consumption as well. The European Union, which has some of the highest levels of drinking in the world, announced earlier this year that it planned to slap new health warnings on alcohol and explore new taxes and restrictions on the marketing of alcoholic beverages as part of a $4.8 billion plan to reduce cancer rates. In France, famous for its wine and champagne, the government announced that it would issue new warnings and policies to discourage heavy drinking as part of a 10-year plan to tackle cancer, which is the country’s leading cause of death.

The ongoing pandemic underscores the urgency of these efforts, as stress, lockdowns and economic uncertainty continue to take a toll. In the past year, hospitals across the United States have reported an increase in admissions for hepatitis, liver failure and other alcohol-related diseases. A study in the journal Psychiatry Research found that in the first six months of lockdowns, alcohol abuse rose most sharply among people who lost their jobs or who were confined to their homes because of shelter-in-place restrictions. The pandemic has also made it easier for people working from home to drink throughout the day without fear of colleagues noticing.

“Workers who would never consider consuming alcohol at the office are now free to drink to excess during work hours while at home,” the study found. “There are grave concerns over the long-term health implications of the rising level of alcohol dependence.”

In the United States, 41 percent of men and 39 percent of women will develop cancer at some point in their lifetimes, according to the American Cancer Society. The group estimates that around 42 percent of newly diagnosed cancers are potentially preventable, by avoiding such measures as cigarette smoking (accounting for some 19 percent of cancer cases), excess weight (7.8 percent of cases), drinking alcohol (5.6 percent of cases), ultraviolet radiation (5 percent of cases) and physical inactivity (2.9 percent of cases). While heavy drinking poses the greatest hazard, moderate drinking — generally defined as two drinks a day for men and one drink a day for women — can also imperil health. According to the cancer society, even small amounts of alcohol — less than one drink a day — can raise the risk of breast cancer in women and some other forms of the disease.

The link between alcohol and cancer was the focus of a recent large study that found that alcohol causes 75,000 new cases of cancer in America every year, as well as 19,000 deaths from the disease. The study, published in January in Cancer Epidemiology, concluded that alcohol accounted for more than one in eight cases of breast cancer in women and one in 10 cases of colorectal and liver cancers nationwide.

“It’s a substantial number of cancer cases and cancer deaths that could be prevented,” said Dr. Farhad Islami, the senior author of the study and the scientific director of the cancer disparity research team at the American Cancer Society. “The cancer burden is considerable.”

Scientists have known that alcohol promotes cancer for several decades. The World Health Organization first classified alcohol consumption as cancer-causing in 1987. Experts say that all types of alcoholic beverages can increase cancer risk because they all contain ethanol, which can cause DNA damage, oxidative stress and cell proliferation. Ethanol is metabolized by the body into another carcinogen, acetaldehyde, and it can influence breast cancer risk by elevating estrogen levels.

But surveys continue to show that most people remain unaware of the risks. When the American Institute for Cancer Research surveyed Americans two years ago to gauge their awareness of different cancer risk factors, the results were striking: fewer than half were aware of the alcohol-cancer link.

Experts say one reason for the lack of awareness is the popular idea that moderate alcohol intake, especially of red wine, is good for heart health, which has drowned out public health messages about alcohol’s impact on cancer risk. But while moderate drinking has long had a health halo, recent studies suggest it may not be beneficial at all. The American Heart Association states that “no research has established a cause-and-effect link between drinking alcohol and better heart health,” and that people who drink red wine may have lower rates of heart disease for other reasons, such as healthier lifestyles, better diets or higher socioeconomic status.

Other analyses have found that moderate drinking can appear to be beneficial in large population studies because the “nondrinkers” who are used for comparison often include people who don’t drink because they have serious health issues or because they are former heavy drinkers. When studies take these factors into account, the apparent cardiovascular benefits of moderate drinking disappear.

For that reason, the federal government’s Dietary Guidelines for Americans, which once promoted moderate drinking for heart health, no longer makes that claim. A panel of scientists that helped shape the most recent edition of the guidelines called for the government to lower the recommended daily limit for alcohol consumption to just one drink a day for both men and women, citing evidence that higher levels of alcohol intake increase the risk of early death.

But the alcohol industry lobbied fiercely against that change, and the latest guidelines, published in December, did not include the lowered drink recommendation. The guidelines, however, did for the first time include strong language about alcohol and cancer, warning that even moderate drinking can “increase the overall risk of death from various causes, such as from several types of cancer and some forms of cardiovascular disease.”

“For some types of cancer,” the new guidelines state, “the risk increases even at low levels of alcohol consumption (less than one drink in a day). Caution, therefore, is recommended.”

The American Cancer Society also issued new guidelines last year that for the first time took a tough stance on drinking, warning that for cancer prevention, “there is no safe level of consumption.” Dr. Timothy Naimi, a member of the government’s dietary guidelines advisory committee, said the new recommendations make clear that moderate drinking is not protective and that drinking less is always better than drinking more.

“The new guidelines are very strong in framing alcohol as a leading preventable health hazard,” said Dr. Naimi, the director of the Canadian Institute for Substance Use Research. “I think the relationship between alcohol and a number of the most important cancers is still not widely recognized. But I feel that’s changing.”

Nigel Brockton, the vice president of research at the American Institute for Cancer Research, said he worried that people who increased their alcohol intake in the past year to cope with the pandemic might continue their new habits into the future. But he advised people who drink to avoid making it a daily habit, and to take other steps to lower their risk, such as exercising and improving their diets.

“We’re not expecting everyone to become teetotalers,” he said. “But if you’re going to drink, then one is better than two, and not every day, because those are the behaviors that across all of these cancers increase your risk.”

Vaccine Hesitancy in Cancer Patients

Living With Cancer

Vaccine Hesitancy in Cancer Patients

“If I accept the vaccine,” one cancer patient says, “it will be with a strong feeling of guilt that at best I will be prolonging my life for a few months or years.”

Credit…Celia Jacobs

  • Feb. 25, 2021, 5:00 a.m. ET

Do the vaccines against the coronavirus offer cancer patients the same hope that they hold out to healthy people? The women in my cancer support group expressed hesitancy as the vaccines started to be administered to health care workers.

Lucy Cherbas, in chemotherapy for recurrent ovarian cancer and in the over-70 population slated to receive the vaccine next, described the moral impediment that some healthy people also confront in a different variant.

“If I accept the vaccine,” she said, “it will be with a strong feeling of guilt that at best I will be prolonging my life for a few months or years, while others behind me in line still have full lives to live if they don’t succumb to Covid-19.”

Lucy’s altruism reminds us how many people have responded to the pandemic with grace and grit. I talked about her guilt with Dr. Timothy Lahey, a medical ethicist and infectious disease specialist at the University of Vermont Medical Center. He pointed out that at a personal level, “Lucy has no duty to endanger herself for others.” As long as she meets vaccine eligibility criteria, he said, “she should feel no compunction about claiming her vaccine.”

According to Dr. Lahey, “altruism is admirable because it is not compulsory.”

Even at a population level, with vaccine prioritization designed to minimize death and suffering, Lucy has “every right to trust the system and receive the vaccine when her number is called.” Of course, she can give up her place, but, Dr. Lahey said, “such a decision would do little to improve the efficiency of the overall distribution system.”

Lucy was also concerned about the physical issues that play a more prominent role in medical conversations. Because she is on a chemo drug that kills dividing cells, Lucy worried that the vaccine would be ineffective. “The development of an immune response involves a lot of cell division, and that seems unlikely to happen in the presence of anti-mitotic chemo agents,” she said. (Before she retired, Lucy was a molecular geneticist.) Since her oncologist continued to advise her to take the vaccine, Lucy has overcome her misgivings and has made an appointment.

Like Lucy, cancer patients need to discuss their unique cases with their physicians. According to Dr. Otis Brawley, past medical and scientific officer of the American Cancer Society and currently a professor of oncology at Johns Hopkins University, “no guidance has come out from the usual nongovernmental groups.”

Lucy Cherbas, center, in a pre-pandemic trip to Fenway Park, with her daughter Katherine Cherbas and her grandson Orlando Shin.Credit…Katherine Cherbas

He added that authorities like the Food and Drug Administration, the Centers for Disease Control and Prevention and the Medical Research Council of Britain “leave it up to individual doctors, but suggest that it should be safe.”

Ideally, those cancer patients who want the shot could get it at their cancer centers rather than in a mass distribution site. But a bumpy rollout and age restrictions have frustrated many people with cancer. Still, if the shot is offered, Dr. Brawley recommends it to his patients in active therapy and to those in follow-up. Certainly, they may not have as strong a response as someone who has an intact immune system; however, they will get some protection and will not be harmed because the current vaccines from Moderna and Pfizer are not produced from live virus (as measles, rubella, mumps and smallpox had been). Live virus vaccines must be avoided by the highly immunocompromised.

The Moderna and Pfizer coronavirus vaccines, Dr. Brawley explains, are made from messenger ribonucleic acid, or mRNA, by means of a new technology. Its genetic material causes the vaccinated person to create the same proteins that are found in the spikes of the novel coronavirus.

“The vaccinated person’s immune system then recognizes these proteins as foreign and produces antibodies against them,” Dr. Brawley said. “Another immune cell called a dendritic cell also records the proteins as foreign.”

Dr. William Nelson, director of the Sidney Kimmel Comprehensive Cancer Center at Johns Hopkins, agreed that “the worst that could happen” to cancer patients inoculated with the coronavirus vaccine “is a poor response.” The poorest responses will probably occur with people in treatment for B-cell lymphomas and multiple myeloma, he explained, because regimens for these diseases often involve agents targeting antibody-producing cells in the body. “For folks undergoing bone marrow transplants,” Dr. Nelson advised, vaccinations should probably be timed at three to six months after the transplant to ensure that immune recovery has occurred.

As important as the vaccines are, Dr. Nelson urged people with cancer as well as their families and friends to “remain vigilant about mask-wearing, social distancing, hand washing, etc.” Because cancer patients often experience low white-blood cell counts, their symptoms — fever, muscle aches, headache, dry cough — can be indistinguishable from those of Covid-19. “Now these patients will also need to be rapidly tested for the coronavirus and isolated in a suitable facility to get their intravenous antibiotics infused.”

When the health authorities in my state, Indiana, announced they would inoculate people over 70, I had no problem signing up online for an appointment. When I went for my first shot at a small medical facility, it was abuzz with people buoyed by high hopes for widespread, so-called herd immunity. My own optimism was shadowed by periodic news stories this winter about mask-less receptions, rallies, protests, parties and raves, and by personal conversations with people scared of inoculation in general.

As Eula Biss explained in her brilliant pre-pandemic book “On Immunity,” fear of the government, of the medical establishment, and of public intrusions into the private body can inhibit the collective trust that achieving immunity requires. Because fearfulness often afflicts cancer patients, they might be especially susceptible to these sorts of trepidations.

In a period of rampant disinformation, anti-vaccine campaigners have emerged to decry what they call a “scamdemic.” They will feed and fuel vaccine anxiety unless they are vigilantly countered by scientific authorities in the media.

In the Vaccine Scramble, Cancer Patients Are Left Behind

In the Vaccine Scramble, Cancer Patients Are Left Behind

Those with compromised immune systems are often advised to get the shots under medical supervision, but their cancer centers can’t always provide them.

Credit…Lilli Carré
Dani Blum

  • Feb. 3, 2021, 9:52 a.m. ET

A doctor in Arizona says her cancer patients are so desperate to get vaccinated against Covid-19 that they plan to volunteer at a stadium vaccination site. A woman in New Jersey with colon cancer can’t sign up for a vaccine appointment because her cancer center, in New York, is authorized to vaccinate only state residents. A cancer patient in Maryland refreshes and refreshes her computer, but can’t find an available vaccination appointment.

Facing conflicting guidance and logistical chaos, many cancer patients are struggling to navigate the bumpy rollout of the Covid-19 vaccination campaign. Ideally, cancer patients who take immunosuppressant medications should receive vaccinations under the care of a doctor, or in a cancer center, where they can be closely monitored and encounter fewer people than they would at a mass distribution site. But the limited availability of the vaccine, plus the havoc and confusion surrounding the rollout, leaves patients grasping for answers.

“It’s really frustrating when you’re a stage four cancer patient and you can’t get on the list,” said Connie Johnson, 62. “Cancer is a life sentence. But Covid is a death sentence.”

Ideally, patients would receive the vaccines at cancer centers, said Dr. Steven Pergam, infection prevention director at Seattle Cancer Care Alliance and co-leader of the National Comprehensive Cancer Network’s Covid-19 vaccine committee. In addition to the potential of contracting Covid-19 and other pathogens at a mass vaccination site, cancer patients who suffer from fatigue may have trouble standing in line. But as vaccination efforts across the country shift to large-scale sites like stadiums, cancer centers may not have shots available.

“It becomes a really challenging experience for these patients to negotiate and navigate a complex system,” he said. He recommends that patients ask their doctors if there are any options, like a drive-through, at a vaccination site, and also encourage any eligible members of their household to get vaccinated.

Even when cancer centers do have vaccine doses available, the state-by-state nature of vaccination rules complicates patient care. Some major cancer centers cannot offer vaccines to patients from across state lines, said Dr. Tobias Hohl, chief of infectious disease service at Memorial Sloan Kettering Cancer Center in New York. He provides care to patients from throughout the tristate area, he said, and 10 percent of the center’s patients are international, but New York state rules authorize the center to treat only state residents. “It breaks our hearts,” he said. “It’s immensely frustrating to many providers.”

Ms. Johnson paused her chemotherapy treatment when she learned that vaccines were approved, hoping to optimize her immune response to the shot. She lives in Maricopa County, Ariz., which is currently vaccinating people in phase 1B. She’s in the next group, 1C. If she isn’t vaccinated in the next month, she said, she’ll have to resume chemotherapy, even though the treatment may weaken her immune system and potentially make the vaccine less effective for her. “I can’t wait that long,” she said. “I just have to hope it’s OK.”

Ms. Johnson is part of a Facebook group for cancer patients, many of whom express rage and frustration over the vaccine roll out. “It’s a full-time job just managing chemo and side effects,” she said. “To have to go through all of this confusion — I think a lot of them are going to throw up their hands.”

According to the American Cancer Society, initial studies testing the Covid-19 vaccines did not include people receiving treatments, like chemotherapy, that suppress the immune system. Of the people included in the Pfizer-BioNTech vaccine trials, 3.7 percent were identified to have a history of malignancy at the time of reporting, said Dr. Pergam, but the assumption is that they are patients with a history of cancer, like surgically cured melanoma, and not patients under active treatment. As a result, it’s not clear how cancer patients in active treatment will respond to the vaccine.

“This has been a complete — I won’t say disaster, but it’s been pretty close,” said Dr. Hanny Al-Samkari, hematologist and clinical investigator at the Massachusetts General Hospital and Harvard Medical School. Cancer patients are receiving “mixed messaging,” he said, and the guidance they get largely depends on their state. Every day he receives a deluge of messages from patients asking if they qualify to receive the vaccine yet (in his state, the answer is largely no). One drove four hours to find a vaccination site. “It’s the Wild West,” he said.

He urged cancer patients to consult with their doctors to coordinate the timing of the vaccine in line with their treatment, unless they are in remission, were treated a long time ago or are receiving only hormonal treatment for breast or prostate cancer, said Dr. Tomasz Beer, a professor at the Oregon Health and Science University’s School of Medicine and deputy director of the school’s Knight Cancer Institute.

Covid-19 Vaccines ›

Answers to Your Vaccine Questions

Currently more than 150 million people — almost half the population — are eligible to be vaccinated. But each state makes the final decision about who goes first. The nation’s 21 million health care workers and three million residents of long-term care facilities were the first to qualify. In mid-January, federal officials urged all states to open up eligibility to everyone 65 and older and to adults of any age with medical conditions that put them at high risk of becoming seriously ill or dying from Covid-19. Adults in the general population are at the back of the line. If federal and state health officials can clear up bottlenecks in vaccine distribution, everyone 16 and older will become eligible as early as this spring or early summer. The vaccine hasn’t been approved in children, although studies are underway. It may be months before a vaccine is available for anyone under the age of 16. Go to your state health website for up-to-date information on vaccination policies in your area

You should not have to pay anything out of pocket to get the vaccine, although you will be asked for insurance information. If you don’t have insurance, you should still be given the vaccine at no charge. Congress passed legislation this spring that bars insurers from applying any cost sharing, such as a co-payment or deductible. It layered on additional protections barring pharmacies, doctors and hospitals from billing patients, including those who are uninsured. Even so, health experts do worry that patients might stumble into loopholes that leave them vulnerable to surprise bills. This could happen to those who are charged a doctor visit fee along with their vaccine, or Americans who have certain types of health coverage that do not fall under the new rules. If you get your vaccine from a doctor’s office or urgent care clinic, talk to them about potential hidden charges. To be sure you won’t get a surprise bill, the best bet is to get your vaccine at a health department vaccination site or a local pharmacy once the shots become more widely available.

Probably not. The answer depends on a number of factors, including the supply in your area at the time you’re vaccinated. Check your state health department website for more information about the vaccines available in your state. The Pfizer and Moderna vaccines are the only two vaccines currently approved, although a third vaccine from Johnson & Johnson is on the way.

That is to be determined. It’s possible that Covid-19 vaccinations will become an annual event, just like the flu shot. Or it may be that the benefits of the vaccine last longer than a year. We have to wait to see how durable the protection from the vaccines is. To determine this, researchers are going to be tracking vaccinated people to look for “breakthrough cases” — those people who get sick with Covid-19 despite vaccination. That is a sign of weakening protection and will give researchers clues about how long the vaccine lasts. They will also be monitoring levels of antibodies and T cells in the blood of vaccinated people to determine whether and when a booster shot might be needed. It’s conceivable that people may need boosters every few months, once a year or only every few years. It’s just a matter of waiting for the data.

Employers do have the right to compel their workers to be vaccinated once a vaccine is formally approved. Many hospital systems, for example, require annual flu shots. But employees can seek exemptions based on medical reasons or religious beliefs. In such cases, employers are supposed to provide a “reasonable accommodation” — with a coronavirus vaccine, for example, a worker might be allowed to work if they wear a mask, or to work from home.

If you have other questions about the coronavirus vaccine, please read our full F.A.Q.

For instance, those who are on chemotherapy may have the best chances of mounting an immune response if the vaccine is given when their white blood cell counts are not at their lowest level, Dr. Beer said. Recommendations for patients with leukemia or lymphoma who are in treatment or had a recent bone marrow transplant are particularly complex and absolutely require consultation and coordination with an oncologist, he stressed.

While some may worry about the risks of encountering a crowd at a mass vaccination site, Dr. Al-Samkari advises patients to receive the doses wherever they are available, as long as they wear masks and keep their distance from other people in line. “Anxieties are clearly well-founded,” he said. “But we need to get shots in arms.”

In general, people with cancer should get the vaccine “as soon as they can, wherever they can,” said Dr. Carol Ann Huff, clinical director of the Sidney Kimmel Comprehensive Cancer Center at Johns Hopkins and one of the authors of the National Comprehensive Cancer Network guidelines on Covid-19 vaccines for cancer patients. There are some caveats: Patients who receive a bone-marrow transplant or CAR-T therapy should wait at least three months before receiving the vaccine, she said.

But, depending on the level of virus transmission in a patient’s community, it might be safer to wait to receive the vaccine. If there’s a high level of transmission in the community, “the risks might outweigh the benefits of waiting,” Dr. Beer said. Patients with active cancer should connect with their oncologist before receiving the vaccine, he advised, unless they are in remission, were treated a long time ago or are receiving only hormonal treatment for breast or prostate cancer.

Those participating in cancer clinical trials have murkier guidance on vaccination. Allyson Harkey, 46, of Maryland, has stage four renal cancer and is participating in an immunotherapy trial; she said her doctor isn’t sure whether she should get the vaccine. The National Comprehensive Cancer Network’s guidelines broadly recommend patients receiving immunotherapy should get the vaccine as it becomes available, but should consult with their doctors beforehand since there’s such a variety of trials. She feels as if she is in a state of limbo, waiting for more information — a process made more frustrating by what she feels is a ticking clock. “My prognosis isn’t great. I probably have a few years left,” she said. “It’s really hard to spend this time, knowing I don’t have a lot of time left, just in my house.”

A Living Legacy in Pediatric Cancer Research

Living With Cancer

Tyler Trent’s Living Legacy

Even as he was dying, he worked to raise awareness of pediatric cancer. Now scientists are using his cells to help others.

From left, Tyler Trent, Dr. Jamie L. Renbarger and Dr. Karen E. Pollok.
From left, Tyler Trent, Dr. Jamie L. Renbarger and Dr. Karen E. Pollok.Credit…Kelly Trent

  • Jan. 21, 2021, 5:00 a.m. ET

Approximately 85 percent of children with cancer are cured. However, about 15 percent confront the sort of aggressive disease that cut short the life of Tyler Trent at the age of 20 on Jan. 1, 2019. “One hundred years down the line, maybe my legacy could have an impact”: so Tyler said about his efforts to raise awareness of the need for further research in pediatric oncology. Two years after his death, Tyler’s physicians continue to help incurable as well as cured children lead longer and better lives.

Back in 2014, when Tyler was 15, he was found to have a rare form of osteosarcoma in his arm and underwent treatments at Riley Hospital for Children in Indianapolis. But two years later, at the end of his senior year of high school, the disease reappeared in his pelvis. Despite another surgery as well as chemotherapy, he resolved to start as a freshman at Purdue University.

Bald and on crutches, he entered Purdue with a presidential scholarship and soon became a Boilermaker football superfan as he coped with life-threatening complications caused by yet another recurrence in his spine. He was at death’s door a few days before he attended the Purdue football game against Ohio State that he correctly predicted would result in an upset Boilermaker victory and his being named honorary team captain for a game played in one of the holiday bowls. At Purdue today, an undergraduate scholarship and a student gate at the football stadium memorialize his name.

One of Tyler’s doctors, Dr. Jamie Renbarger, currently heads Riley’s Center for Cancer and Blood Disorders and the Pediatric Precision Genomics Program, which serves children with aggressive solid tumors, high risk leukemias, and relapsed cancers, all of which are associated with poor outcomes. In consultation with a child’s oncologist and with a team of scientists, Dr. Renbarger uses genetic testing to identify DNA, RNA and proteins in cancer cells that can be targeted with different treatment options specific to the child’s needs.

According to Dr. Renbarger, “in about 85 to 90 percent of cases, we’ve found something clinically relevant about the patient or the tumor as a result of testing to help further guide therapy.” Dr. Renbarger is drawn to targeted therapies because they “may have fewer side effects than previous treatments, helping the child have a better quality of life and improving survival rates.”

Her optimism has been buoyed by the breakthrough of a colleague, Karen E. Pollok, who has used the cancer cells donated by Tyler Trent — they are called TT2 — to find a combination of drugs that substantially retards tumor growth. The donors of tumor samples are generally kept anonymous, but Tyler’s parents wanted to continue honoring his activism.

Dr. Pollok, who along with Dr. Renbarger visited Tyler two weeks before he died, was inspired by the meeting: “He was busily answering texts, tweets and managing Facebook to fulfill his last mission: to raise awareness for pediatric cancer research.” Today, Dr. Pollok adds, “our lab-quote when we discuss the research using Tyler’s cells is, ‘We will never give up!’” At the start of the coronavirus pandemic, her work on Tyler’s tumor models was deemed essential. She and colleagues published research in August in the journal Cancers that demonstrated that a combination of drugs could block the growth of these aggressive cancers.

Even after Tyler suffered seizures, clogged kidney tubes, emergency operations, and fevers that landed him in hospice, he gave interviews and published essays that testified to his remarkable ability to continue expressing himself in his unique way. Though Tyler never entered full adulthood, he managed to sustain “his passion to do whatever he could, even in the midst of this crazy, horrible journey that he was on,” Dr. Renbarger says.

Children with cancer, whether or not they are cured, need to find ways to retain a sense of themselves while dealing with the deleterious side effects of cytotoxic treatments. Dr. Renbarger therefore helped to create the Karuna Precision Wellness Center, where she works with individuals during and after cancer treatments to optimize their long-term quality of life through personalized integrative and wellness plans. The areas of focus include physical functioning, mental health (cognitive and emotional), and nutrition.

Kids especially face post-therapy hurdles, Dr. Renbarger believes, for they may experience alienation from their peers, anxiety, attention deficits and cognitive disorders related to memory, mental processing and executive functioning. Reintegration into school can be challenging. Additionally, since children who have received treatment “age at a faster rate,” they can be “more susceptible to diseases associated with aging like strokes, diabetes, joint and heart problems.” In an outpatient clinic, Dr. Renbarger assembles multidisciplinary teams — specialists in cardiology, adolescent medicine and fertility as well as educational and vocational coaches — to see pediatric patients into the best possible adulthood.

A similar determination led Tyler to donate a portion of the proceeds from his book, “The Upset: Life (Sports), Death … and the Legacy We Leave in the Middle,” toward cancer research. Along with his co-author, John Driver, and others, he composed it when his entire body had surrendered to paralysis except for his right arm. The voices of his parents, brothers and spiritual advisers supplement his account and form a sort of chorus. What emerges is a multifaceted portrait of a deeply religious young man fully convinced that “There is always an opportunity to help heal others’ hurts.”

The Upset” underscores the conviction of Tyler’s parents that “when a child gets cancer, a family gets cancer” and extends his efforts to hasten that time when no family with cancer will be left behind.

When the Cancer Doctor Leaves


When the Cancer Doctor Leaves

I knew how difficult it would be to tell my colleagues I was leaving for a new job. I didn’t anticipate how hard it would be to tell my patients.

Credit…Aaron Josefczyk/Reuters

  • Jan. 14, 2021, 5:00 a.m. ET

“I’ve known you since 2003,” my patient reminded me, after I had entered the examination room and took my usual seat a few feet away from her. She was sitting next to her husband, just as she had been at her first visit 17 years earlier, and both wore winter jackets to withstand the sleet that Cleveland had decided to dump on us in late October. “That was when I first learned I had leukemia,” she added. He nodded dutifully, remembering the day.

I was freshly out of my fellowship training in hematology-oncology back then, and still nervous every time I wrote a prescription for chemotherapy on my own, without an attending’s co-signature. In her case, it was for the drug imatinib, which had been on the market only a couple of years.

At the time, a study had just reported that 95 percent of patients who had her type of leukemia and who were treated with the drug imatinib achieved a remission. But on average, patients in that study had been followed for just a year and a half, so I couldn’t predict for her how long the drug might work in her case.

Seventeen years later, she was still in a remission. During that time, she had retired from her job as a nurse, undergone a couple of knee replacements, and had a cardiac procedure to treat her atrial fibrillation.

“You had a toddler at home,” she reminded me. That son was now in college. “And then your daughter was born the next year. And you had another boy, right?”

I nodded, and in turn reminded her of the grandchildren she had welcomed into the world during the same time. We had grown older together. Then we sat quietly, staring at each other and enjoying the shared memories.

“I can’t believe you’re leaving me,” she said softly.

When I decided to take a new job in Miami, I knew how difficult it would be to tell the other doctors, nurses, pharmacists and social workers I work with, the team from whom I had learned so much and relied upon so heavily for years.

I didn’t anticipate how hard it would be to tell my patients.

For some with longstanding, chronic cancers, it was like saying goodbye to a beloved friend or a comrade-in-arms, as if we were reflecting on having faced down an unforgiving foe together, and had lived to tell about it.

For others, still receiving therapy for a leukemia that had not yet receded, I felt as if I were betraying them in medias res. I spent a lot of time reviewing their treatment plans and reinforcing how I would transition their care to another doctor, probably more to reassure myself than my patients, that they would be OK.

A few were angry. Unbeknownst to me, my hospital, ever efficient, had sent out a letter informing patients of my departure and offering the option to choose any one of eight other doctors who could assume their care — even before I had a chance to tell some of them in person. How were they expected to choose, and why hadn’t I told them I was leaving, they demanded indignantly.

I felt the same way as my patients, and quickly sent out my own follow-up letter offering to select a specialist for their specific types of cancer, and telling my patients I would miss them.

I then spent weeks apologizing, in person, for the first letter.

And though I always tell my patients the best gift I could ever hope for is their good health, many brought presents or cards.

One man in his 60s had just received another round of chemotherapy for a leukemia that kept coming back. I think we both knew that the next time the leukemia returned, it would be here to stay. When I entered his examination room, he greeted me where my other patient had left off.

“I can’t believe you’re leaving me.”

Before I could even take a seat, he handed me a plain brown bag with some white tissue paper poking out of the top and urged me to remove its contents.

Inside was a drawing of the steel truss arches of Cleveland’s I-90 Innerbelt bridge, with the city skyline rising above it.

“It’s beautiful,” I told him. “I don’t know what to say.”

“You can hang this on your office wall in Miami,” he suggested, starting to cry. “So you’ll always remember Cleveland.” And then, Covid-19 precautions be damned, he walked over and gave me a huge bear hug. After a few seconds we separated.

“No,” I said, tearing up. “I’ll hang up the picture and always remember you.”

Mikkael Sekeres (@mikkaelsekeres), formerly the director of the leukemia program at the Cleveland Clinic, is the chief of the Division of Hematology, Sylvester Comprehensive Cancer Center at the University of Miami Miller School of Medicine and author of When Blood Breaks Down: Life Lessons From Leukemia.”

How Our Sex Habits May Affect Our HPV and Cancer Risk

How Our Sex Habits May Affect Our HPV and Cancer Risk

Certain sex practices, at certain ages, increased the risk of throat cancers related to human papillomavirus.

Credit…Getty Images
Nicholas Bakalar

  • Jan. 12, 2021, 5:00 a.m. ET

Human papillomavirus, or HPV, is a leading cause of throat cancer, and it is sexually transmitted. But how the timing, number and types of sexual behaviors affect the risk, and why some people develop cancer and others don’t, are still open questions. Researchers are beginning to suggest some possible answers.

HPV causes about 70 percent of oropharyngeal cancers — tumors of the back of the throat, the base of the tongue and the tonsils. According to the Centers for Disease Control and Prevention, there are about 3,500 new cases of HPV-associated oropharyngeal cancers diagnosed in women and 16,200 in men every year in the United States. These cancers are more common among white people than among African-Americans, Asian-Americans, Hispanics, or American Indians and Native Alaskans.

There are many types of HPV, only some of which cause cancer. In addition to throat cancer, HPV is a cause of cervical, vaginal, vulvar, penile and anal cancers. It can take years, even decades, after infection for cancer to develop.

To try to sort out the risk factors for HPV-associated throat cancer, researchers compared 163 patients with cancer with 345 cancer-free controls. Patients and controls ranged in age from 18 to 89, but more than 95 percent of them were over 40. At the start of the study, all of the participants provided a blood sample, and the scientists obtained tumor samples from the patients with cancer. None of the participants had had the HPV vaccine, which was introduced in the United States in 2006 and recommended primarily for preadolescents, teenagers and young adults.

Using a self-interview administered on a computer, the participants also answered detailed questions on lifetime and recent sexual behavior, including number of partners, age of sexual initiation, types of sexual acts, extramarital sex and the use of alcohol and recreational drugs during sex. The scientists also had data on income, education, sexual orientation, and any history of sexually transmitted and other diseases. The study is in the journal Cancer.

Taken together, the various cancers caused by HPV are slightly more common in women, but HPV-associated oropharyngeal cancers are almost five times as common in men. Exactly why is unclear.

“There is some evidence that cunnilingus is more infective than fellatio,” said the senior author, Gypsyamber D’Souza, a professor of epidemiology at Johns Hopkins. “But that’s a surrogate for more nuanced behavior. Many patients have not engaged in high-risk sex behavior and are unlucky enough to still get this. It’s not just sexual partners, but the timing, the kind of practice, the nature of the partners and other factors, plus aspects of our own immunological response that are all involved in this.”

The cancer patients in the study were about 80 percent more likely than those without cancer to have ever performed oral sex on a partner. They were also younger when they first did so — 37 percent of patients were younger than 18 the first time they performed oral sex, compared with 23 percent of controls — and they were more likely to have performed oral sex at their sexual debut.

Why having oral sex at a first sexual encounter would raise the risk is unknown. Is there a different immune response if a person has had other forms of sex before having oral sex? Does the initial site of exposure affect your risk? “We don’t have good answers yet,” Dr. D’Souza said.

Almost 45 percent of patients had had more than 10 sexual partners during their lifetimes, compared with 19 percent of the cancer-free controls. People under 23 who had a sexual partner at least 10 years older were more likely to be infected, possibly because older people have had longer exposure to the virus.

Deep kissing was also associated with increased risk. Those who had 10 or more deep-kissing partners were more than twice as likely to have an HPV-related cancer as those who had none or one.

People who reported that their partners had extramarital affairs, and those who even suspected that their partners had had affairs, also had an increased risk of HPV-associated throat cancer. There was no association of HPV-related throat cancer with smoking, alcohol consumption or substance use.

The study had limitations. It depended on self-reports, which are not always reliable, and because more than 95 percent of the participants described themselves as heterosexual, there was not enough data to draw conclusions about the effects of sexual orientation on HPV and cancer risk. But the analysis had carefully matched controls, HPV tumor data, and a confidential questionnaire, all of which contribute to its strengths.

Dr. Jason D. Wright, an associate professor of gynecologic oncology at Columbia who was not involved in the research, believes the work could be useful in clinical practice. “This is one of the first studies to provide in-depth details for patients about how specific practices influence your long-term risk,” he said. “A higher exposure, more partners, oral sex early on — these are all risk factors. These are important things to think about in talking to patients.”

The lead author, Dr. Virginia E. Drake, a resident physician at Johns Hopkins, said that explaining the infection to patients can be difficult. “If people get this infection, they’re going to ask, ‘Why me?’” she said. “How this information will change things clinically, we don’t know. But we can give patients a better understanding of the disease process and how someone gets it.”

Still, she said, “It’s complex, more complex that just the number of sexual partners. We don’t have the exact answers on this, and we’re still figuring out the complete picture.”

The Covid Balancing Act for Doctors


The Covid Balancing Act

At the start of the pandemic, I was “Dr. No” to my in-laws and cancer patients, but my conversations have become more nuanced.

Credit…Getty Images

  • Jan. 7, 2021, 5:00 a.m. ET

My wife’s parents have led a relatively monastic existence since about mid-March.

Both are in their 80s and live independently in rural Pennsylvania, maintaining a three-acre property by themselves. My father-in-law, the older of the two, has skirted major medical problems despite a decades-long indiscriminate diet, a testimony to the triumph of genetics over lifestyle choices. My mother-in-law, on the other hand, has been ravaged by lupus, which flares regularly and requires medications that suppress her immune system.

So when Covid-19 hit, we feared for their health, given their ages and her compromised immunity, and begged that they place themselves on lockdown, so we wouldn’t lose them to the pandemic.

And they did.

Where they used to buy groceries at their local Giant Eagle supermarket (which they call the “Big Bird,”) they turned instead to Instacart for home delivery, shrugging off the random items their shopper would get wrong with good humor.

Where they used to attend church in person every Sunday, they caught the video highlights online when they became available on Monday morning.

We arranged weekly Zoom calls with them, to replace our frequent visits.

We used to say that their social life rivaled ours, as they got together with friends they have known since kindergarten (kindergarten!) several times each week for dinner, drinks or shows. Instead, during the pandemic, they’ve replaced those social events with going cruising together in their blue ’55 Chevy Bel Air, satisfying themselves with the feel of a car they first drove in their teens, the beautiful countryside and a wave at their friends, who sat at a safe distance on their front porches.

Our whole family has been proud of them to the point of bursting. But in September, after six months of this, my father-in-law got antsy and did the unthinkable: He went to the hardware store, ostensibly for a tool, but really to see his friends who tend to congregate there.

He caught hell for his modest indiscretion, first from his wife, and then from mine. They explained to him that he could have ordered the piece online. They reminded him that his actions can affect my mother-in-law, and her frail health, too. Finally, he had enough.

“I’m 85 years old,” he said. “Eighty-five! I’m careful, I wore a mask. What do you expect me to do, spend the rest of my days here in prison?”

That gave me pause — my wife, too. At 85, he had done the math. Despite his lucky genetics, he probably didn’t have many years left on this earth, and he didn’t want to spend one or two of them in isolation.

Understanding the risks and consequences of his actions, shouldn’t he be allowed to see his buddies at the hardware store, and maybe buy a tool while he’s there?

I thought about it from the perspective of my patients, many of whom also don’t have much time left on this earth, and the conversations we had been having in clinic.

At the beginning of the pandemic, I was “Dr. No,” prohibiting my patients, most of whom have devastated immune systems, from engaging in their usual social activities. Where much of what we had all been hearing from government authorities about Covid-19 transmission had often been contradictory, I wanted to give concrete advice.

Attending a family gathering to celebrate a birthday? No.

How about a high school graduation party for a granddaughter? No.

Visiting elderly parents in another state? Not safe for you or them.

A road trip to Montana with a friend (this from a man in his 80s with leukemia): Are you kidding me?

At the risk of sounding paternalistic, I feared for my patients’ health, as I did for my in-laws’ health, and wanted to protect them.

But perhaps because our understanding of Covid-19’s epidemiology has gotten better over time; or with our recognition that we may have to live with the pandemic for many months more; or given my father-in-law’s perspective that people at the end of life should make their own risk-benefit calculations, my conversations have now become more nuanced.

I’m more open to my patients not missing important life events, when there may not be much life for them left, provided they take precautions to avoid endangering themselves or those around them, particularly amid the most recent surge in Covid-19 cases.

One woman with leukemia was receiving chemotherapy early in 2020 when her daughter had a miscarriage. Now that her daughter is eight months pregnant again, can she hold the baby when it is born? Absolutely, let’s talk about how to do it safely.

Another patient’s mother died. Can she attend the funeral? Yes, with appropriate distancing, limited numbers, and personal protective equipment. But skip the reception.

The road trip to Montana? I still wasn’t comfortable with that, but my patient and his friend went anyway, took their own food, slept in their truck, and he returned without Covid-19.

And my father-in-law? He gets out of the house a little bit more than he used to, but not as much as he’d like. The rare times that he does nowadays, he is always masked and stays outdoors, and both he and my mother-in-law remain Covid-19-free.

Which strikes me as about the right balance.

Mikkael Sekeres (@mikkaelsekeres) is the chief of the Division of Hematology, Sylvester Comprehensive Cancer Center at the University of Miami Miller School of Medicine and author of When Blood Breaks Down: Life Lessons from Leukemia.”

Oral Contraceptives Tied to Lower Risk for Certain Cancers

Oral Contraceptives Tied to Lower Risk for Certain Cancers

The drugs may increase the risk of breast cancer, but may lower the risk of ovarian and endometrial cancers.

Nicholas Bakalar

  • Jan. 5, 2021, 5:00 a.m. ET

Women who have used oral contraceptives may be at lower risk for ovarian and endometrial cancer.

Oral contraceptives are known to be associated with a higher risk for breast cancer, but a new study in Cancer Research suggests the increased risk is small and of short duration. At the same time, researchers found that the lowered risk of ovarian and endometrial cancer is substantial and long-lasting.

The analysis included health data through 2019 on 256,661 women born between 1939 and 1970 in Britain. More than 80 percent of the women had used oral contraceptives.

After adjustment for many other health and behavioral characteristics, the scientists found that compared with women who had not used them, women who had used oral contraceptives had a 32 percent reduced risk for endometrial cancer and a 28 percent reduced risk for ovarian cancer. Those reduced risks persisted for life.

“Ovarian cancer is deadly and hard to treat,” said the senior author, Asa Johansson, an assistant professor at Uppsala University in Sweden. “The mortality rate for breast cancer is lower. If you have a close relative who died from ovarian cancer, you might make one decision about oral contraceptives. If you have one who died from breast cancer, you might make another.”

In any case, she said, “I don’t think we can offer advice. People should be informed about the risks and benefits and make their own decisions.”

A Wintry Tale of Deliverance

Living With Cancer

A Wintry Tale of Deliverance

The George Saunders story “Tenth of December” poses a question that absorbs many patients and caregivers: Can we save ourselves or each other from suffering?

Credit…Alexey Karamanov/Getty Images

  • Dec. 22, 2020, 5:00 a.m. ET

When I learn, as I did a few days ago, of a cherished member of my cancer support group going into hospice, I find myself alienated from holiday cheer, as many do this year. Rather than reading a holiday story like “A Christmas Carol,” I open instead George Saunders’ short story “Tenth of December.” In it, a man who dreads end-of-life cancer connects with a boy who has been bullied in school. Through their interaction, the tale poses a question that absorbs many patients and caregivers. Can we — how can we — save ourselves or each other from suffering?

People with late-stage disease or those loving people with late-stage disease may find this story especially heartening. It analyzes not only our anxieties about physical deterioration but also how we might lay them to rest.

Tenth of December” begins with the ostracized boy, Robin, trekking to a frozen pond to vanquish make-believe enemies who torture him with the sorts of barbs launched by his classmates: “Wow, we didn’t even know Robin could be a boy’s name.” Undaunted, Robin imagines rescuing a girl he admires from being kidnapped by his assailants, though he realizes “The twerpy thing was, you never really got to save anyone.” He had failed to save a dying raccoon and “He didn’t do well with sad. There had perchance been some pre-weeping, by him, in the woods.”

Robin’s fantasies are interrupted by the sight of a coat left on a bench and then, in the distance, of a skinny, bald man in pajamas who looked “Like an Auschwitz dude or sad confused grandpa.” The boy determines to deliver the coat because “had not Jesus said, Blessed are those who help those who cannot help themselves but are too mental, doddering, or have a disability?”

While Robin embarks on “a real rescue,” Don Eber is resolving to freeze to death in order to spare his wife and children his “future debasement.” Disease or chemotherapy has begun to scramble his words and Eber dreads the degeneration that reduced his beloved stepfather to a rail-thin, verbally abusive brute. Determined instead to do what a good father does — “Eases the burdens of those he loves” — Eber prays, “Let me do it cling. / Clean. / Cleanly.”

Both the boy and the man want to be heroic, though soon their roles reverse. After Robin falls through the ice and manages to pull himself only partly out, Eber drags him free. “The kid’s shivers made his shivers look like nothing. Kid seemed to be holding a jackhammer.” Noticing his coat on the ice, at the edge of the black water, Eber slides on his belly to snag it, strips off the boy’s freezing clothes, and then peels off his own pajamas, boots and socks to dress Robin, who slowly regains consciousness.

The exposed man and boy quaking in the killing cold bring to mind Lear and his fool on the stormy heath: unaccommodated, forked animals. With the exchange of the coat, their scene evokes William Butler Yeats’s definition of an aged man as “a paltry thing, / A tattered coat upon a stick.” On the brink of catastrophe, Robin and Eber are poised to expire, although Robin manages to gather Eber’s coat “like some sort of encumbering royal train” and high-tail it home where he will summon help.

Left alone and hallucinating, Eber remembers dressing his sleepy kids, recalls that because of insurance he has not left a note, and senses the misery he will inflict by “offing himself two weeks before Christmas,” his wife’s favorite holiday. “Tenth of December” opts for “Let me do it cling” over and against “Let me do it cleanly.” For abandoned in the snow, dying in his underwear, blue-skinned Eber comprehends the cruelty of his earlier attempt to commit suicide. Recognizing the interconnectedness of his life with others, he realizes that it is not his sole possession to give away.

Both Robin and Eber have botched their initial missions. However, they end up saving each other, not despite but because of their failures. When Eber is finally brought in from the cold, his response to Robin’s apology for fleeing the scene — “You did perfect. I’m here. Who did that?” — comforts them both: “Can’t console anyone if not around?” Eventually Eber remembers that in precious moments his dying stepfather preserved his identity through small acts of kindness: “I’ll try to be like him,” he decides.

Eber accepts the future deterioration dictated by his disease. “Why should those he loved not lift and bend and feed and wipe him, when he would gladly do the same for them. He’d been afraid to be lessened by the lifting and bending and feeding and wiping, and was still afraid of that, and yet, at the same time, now saw that there would be many drops of happy — of good fellowship — ahead, and those drops of fellowship were not — had never been — his to withheld. / Withhold.”

Sometimes we know — or a person we love knows — that a decline toward death has become inevitable. Under these circumstances, it is an acknowledgment of our reciprocity to be lifted or lift, to be fed or feed, to be wiped or wipe. Not our strengths but our weaknesses inspire and intensify the mutuality that sustain us. When we cannot save ourselves or each other from suffering, sharing it can become a saving grace. This is a poignant insight these days when the pandemic has limited our capacity to share suffering.

Like Charles Dickens, George Saunders illuminates the mystic deliverance of our dependence on each other and celebrates the generosity to which erring people cling. Like William Butler Yeats, he suggests that we become more than “A tattered coat upon a stick” only when “Soul claps its hands” and learns to “sing and louder sing / For every tatter in our mortal dress.” By instructing us to rejoice in every drop of affection bestowed upon our torn or sore mortal bodies, his story blesses its readers, each and every one.

New Scan Finds Prostate Cancer Cells Hiding in the Body

New Scan Finds Prostate Cancer Cells Hiding in the Body

The test seems likely to improve the diagnosis and treatment of a disease that kills 33,000 American men each year.

Dr. Mark Samberg, a retired urologist in Sacramento, learned his cancer had spread beyond his prostate with a new scan that finds radioactively tagged cancer cells in the body. 
Dr. Mark Samberg, a retired urologist in Sacramento, learned his cancer had spread beyond his prostate with a new scan that finds radioactively tagged cancer cells in the body. Credit…Max Whittaker for The New York Times
Gina Kolata

  • Dec. 16, 2020, 2:08 p.m. ET

After doctors found cancer in Dr. Mark Samberg’s prostate last spring, the 70-year-old retired urologist prepared to have his prostate removed. He knew that the surgery would cure him, assuming the cancer was confined to the organ.

But his doctors had a nagging concern — the cancer cells seen on the biopsy were aggressive and may already have escaped from his prostate. If so, the operation would not cure him. The problem for Dr. Samberg, and for many men with aggressive prostate cancer, was this: If there are cancer cells outside the prostate, how can they be found?

Now the Food and Drug Administration has approved a test that can locate prostate cancer cells wherever they are. Exuberant cancer specialists said the test would alter treatment for patients nationwide.

“It’s the most exciting thing in prostate cancer in my lifetime,” said Dr. Kirsten Greene, chair of the urology department at the University of Virginia School of Medicine.

The test relies on a radioactive tag attached to a molecule that homes in on prostate cancer cells that have spread to other locations in the body and may seed new tumors. Once tagged, the clusters of cells appear as bright spots on PET scans.

At the moment, the F.D.A.’s approval applies only to testing at the University of California, San Francisco, and the University of California, Los Angeles, which conducted clinical trials. But several companies hope to market similar tests soon.

“It’s absolutely fabulous,” said Dr. Oliver Sartor, professor of medicine at Tulane University School of Medicine. When he learned that the test had been approved, he said, he danced in his office “and had a toast of imaginary champagne.”

Now specialists are hoping to use the technique to kill cancer cells, not just find them. The idea is to attach a radioactive drug to the molecule that seeks out prostate cancer cells. The molecule will deliver the drug directly to those cells and, it is hoped, the radiation will destroy the cancer. Experiments already have begun at U.C.S.F. and U.C.L.A.

The road to the new test has been long. Nearly 30 years ago, researchers discovered that prostate cancer cells carry a unique protein on their surfaces called prostate specific membrane antigen, or P.S.M.A. More recently, researchers found small molecules that could home in on P.S.M.A.

Scientists theorized that radioactive tracers attached to those molecules could make prostate cancer cells visible on PET scans. In 2010, researchers at the University of Heidelberg in Germany published the first images of prostate cancer cells located in this way.

Over the past four years, studies involving about 1,000 patients by Dr. Jeremie Calais, a nuclear medicine physician at U.C.L.A., and Dr. Thomas Hope, a nuclear medicine physician at U.C.S.F., showed that the scan accurately detected prostate cancer cells anywhere in the body before treatment and even after treatment, when cancer may recur.

The research led to changes in treatment for most patients, including decisions to recommend targeted radiation, guided by the scans, rather than chemotherapy or androgen-blocking therapy, treatments that impact the entire body.

Dr. Hope described two situations in which the PET scans can transform treatment decisions.

Most men learn they have prostate cancer when a simple blood test finds high levels of prostate specific antigen, or P.S.A. The next step is a biopsy of the prostate and removal of cancer cells for examination to see how aggressive they appear.

Men often have MRI scans to see if the capsule surrounding the prostate has been breached — a sign the cancer has gotten out. And doctors consider how high P.S.A. levels are. The higher they are, the more cancer in the body and the more likely it has spread.

The second scenario occurs after a man has had his prostate removed or destroyed by radiation. If the patient’s P.S.A. levels start to rise months or years later, the cancer that doctors thought they had cured had already seeded itself elsewhere in the man’s body.

In both situations, “we know they have disease, but we don’t know where it is,” Dr. Hope said. The new scan seems able to show doctors where to look. The researchers are now conducting studies to see if these treatment revisions ultimately prolong patients’ lives.

Dr. Samberg, who lives in Sacramento, was one of the participants in the U.C.S.F. trial. Before his scheduled prostatectomy, the scan turned up cancerous cells in his bones and lymph nodes. “That was shocking,” he said.

Without the new test, the doctors would have removed Dr. Samberg’s prostate, and they would have realized he still had cancer when his P.S.A. levels began to rise. In such a case, doctors usually irradiate the area where the prostate used to be — the prostate bed, which is the site of remaining cancers a bit more than half the time.

For Dr. Samberg, that procedure, like the prostatectomy, would not have helped. “Standard therapy for me would fail,” he said. Instead, the discovery that his cancer was in his bones and lymph nodes pointed to targeted radiation therapy, hormonal therapy and, most recently, immunotherapy.

“I am in complete remission,” Dr. Samberg said. “I hope it makes a difference long term.”

NYT Health Quiz: Coronavirus, Caregiving and Erectile Dysfunction

1 of 7

About what percentage of American adults are caregivers, providing unpaid support for an adult or child who has special needs?

8.2 percent

12.8 percent

16.3 percent

21.3 percent

2 of 7

Men tended to have lower rates of erectile dysfunction when they ate diets high in all of the following foods except:



Red meat


3 of 7

To help counter the life-shortening effects of excessive sitting, researchers calculated that you’d need to do at least how many minutes of brisk walking or other moderate exercise a day?

11 minutes

35 minutes

52 minutes

74 minutes

4 of 7

Wernicke’s encephalopathy, marked by an unsteady gait, seeing double and confusion, is caused by a deficiency of this vitamin, found in whole grains, meats, nuts and beans:

Vitamin A

Vitamin B1 (thiamine)

Vitamin C

Vitamin D

5 of 7

Who will get the coronavirus vaccine first? Probably not this group, according to recommendations from a C.D.C. advisory panel:

Residents of long-term care facilities

Health care workers

Essential workers

Men and women 65 and over

6 of 7

The C.D.C. outlined ways to shorten the quarantine period for coronavirus from 14 days to as little as:

3 days

5 days

7 days

10 days

7 of 7

During the pandemic, many people are missing screenings and treatments for cancer. With a four-week delay in surgery for breast cancer, the death rate increases by:

2 percent

5 percent

8 percent

A four-week delay in surgery has little impact on overall survival

Despite Pandemic Shutdowns, Cancer Doesn’t Take a Break

While a raging pandemic continues to force shutdowns and slowdowns throughout the country, another major risk to human health is not taking a sabbatical: cancer.

In the early months of the pandemic, millions of people heeded warnings and fears about contracting the coronavirus and avoided, or couldn’t even get, in-person medical visits and cancer screenings, allowing newly developed cancers to escape detection and perhaps progress unimpeded.

During this time, there was a steep decline in screenings for cancer, as well as a reluctance of patients with cancer to participate in clinical trials for cancer treatments. Many mammography centers, dermatology offices and other venues for cancer screenings remained closed for months, and routine colonoscopies, which should be done in hospitals or surgical centers, were actively discouraged to minimize strain on medical personnel and equipment and reduce the risk of contagion.

Still, Dr. Norman E. Sharpless, director of the National Cancer Institute, warned in June that missed routine screenings could lead to 10,000 or more excess deaths from breast and colorectal cancers within the next decade.

Cancers cannot be treated unless they’re detected, and a review of 34 studies published in October in the BMJ reported that for every four-week delay in cancer detection and treatment, the risk of death from cancer rises nearly 10 percent, on average. The study found increased mortality following delays in treatment for 13 of 17 cancer types. Following a four-week delay in surgery for breast cancer, the death rate increased by 8 percent; for colorectal cancer, it rose 6 percent.

The hazard of delayed screenings is greatest for people with known risk factors for cancer: a family or personal history of the disease, a previous abnormal Pap smear, prior findings of polyps in the colon or rectum, or, in the case of breast and certain other cancers, having genetic mutations that seriously increase cancer risk.

Most screening facilities have since put safety procedures in place that greatly reduce the chance of contracting the coronavirus, both for staff and patients. Although I had postponed my annual mammogram for four months, when I did go in September I was impressed with how well the facility was run — no one else in the waiting room, everyone masked and hand sanitizer everywhere.

Dr. Barry P. Sleckman, director of the O’Neal Comprehensive Cancer Center at the University of Alabama at Birmingham, said in an interview, “When it comes to screening for cancer, people should balance the possibility of contracting the virus with their potential cancer risk. People should do everything possible to keep up with cancer screenings.”

However, Dr. Sleckman added, “If a woman is young and has no family history of breast cancer, she can probably wait six months for her next screening mammogram.” He also suggested discussing the matter with one’s personal physician, who probably also knows the safest facilities for screening.

If someone is found to have cancer, he emphasized, “There’s no reason to delay treatment. If a woman has cancer in a breast, it needs to be removed, and she should go to a hospital where she can be treated safely.”

Dr. David E. Cohn, chief medical officer at The Ohio State University Comprehensive Cancer Center, said that in the early months of the pandemic “we experienced a significant decline in new patients. Even some patients with symptoms were afraid to come in or couldn’t even see their doctors because the offices were closed. This could result in a delayed diagnosis, more complex care and potentially a worse outcome.”

But he said his center has since returned to baseline, suggesting that, despite the fall’s surge in Covid-19 cases, few cancer patients now remain undiagnosed and untreated.

“We made creative adaptations to Covid” to maximize patient safety, Dr. Cohn said in an interview. “For certain cancers, instead of doing surgery upfront, we treated patients with radiation and chemotherapy first, then did surgery later” when there was less stress on hospital facilities and personnel and patients could be better protected against the virus.

Dr. Cohn said that certain kinds of supportive care can be delivered remotely to cancer patients and their families — even genetic counseling, if a DNA sample is sent in. However, he added, “the majority of cancer treatment has to be administered in person, and surveillance of cancer patients is best done in face-to-face visits.”

Now with the virus surging around the country, many medical centers may be forced to again limit elective procedures, those not deemed urgent. But, Dr. Sleckman said, “Cancer treatment is not elective — it’s urgent and should not be delayed.”

Learning that one has cancer, even when it is early and potentially highly curable, is likely to strain a person’s ability to cope with adversity, all the more so when the diagnosis occurs in the midst of an already highly stressful and frightening pandemic.

Kristen Carpenter, a psychologist at the Ohio cancer center, said the constraints of the pandemic are “using up a lot of people’s reserve for dealing with adversity.” Adding a cancer diagnosis on top of that may initially cause people to fear they can’t deal with it, she said in an interview.

But it is nearly always possible to make more room in a person’s “bucket of reserve,” she said, for example, by identifying things that bring joy or a sense of accomplishment. Even though the pandemic may preclude great joys, Dr. Carpenter said, “people can create a constellation of smaller joys, for example, by reading a book, taking a walk or even a long shower. A little goes a long way to relieve the stresses of the day and build up the reserve needed to help you deal with the cancer.”

Noting that many people have found new ways to interact with others during the pandemic, “this is all the more important to do in the face of cancer,” Dr. Carpenter said. “Remember, you’re not just your cancer. You’re a whole person experiencing something. Take time to identify your needs and tell people what they are — don’t wait for them to ask.”

This advice is especially critical to cancer patients whose disease or treatment has compromised their immunity, leaving them especially vulnerable to infection by the coronavirus. A friend with chronic lymphoma who must avoid in-person contact with her five young grandchildren visits them through a glass door and observes their delight in retrieving the little treats she leaves for them on her porch.

Think, too, of how you’ve faced difficulties in the past, “how you’ve adapted to things you previously believed to be unimaginably difficult,” Dr. Carpenter suggested. Resiliency in the face of cancer during Covid need not have a limit, she said.

Cancer in the Family: Compliments on Being Thin


Credit The author with her daughter, Devon.

“I’m so jealous. You’ve lost so much weight, you look amazing,” a friend says to me. “I’d love to catch the stomach bug this year and lose a few pounds myself.”

I smile. I don’t know what to say.

Since January, one of my 12-year-old twin daughters, Devon, has been in isolation in a Boise, Idaho, pediatric oncology unit receiving chemotherapy for acute myeloid leukemia. Her sister, Gracie, remains behind, in a little town south of Sun Valley. To cope, she has assigned herself as captain of Devo’s Fight Club, a band of peer supporters started with a sweatshirt she designed in the first 36 hours of her sister’s diagnosis.

Their dad and I have been driving the two and a half hours between home and hospital, splitting the week between our daughters, our jobs, middle school’s demands, puberty’s capriciousness, sports, music and running a household that includes cats, dogs, horses, cows and fish.

Devon’s cancer was as random as a dice roll. She had swollen gums for a week and then, a simple blood test to rule out mono instead declared that this sleek, athletic, freckle-faced cowgirl had a rare and often fatal leukemia.

My husband says he has gained weight since Devon’s diagnosis. I have lost weight. A lot. Neither one of us notices the other because we relate over phone or email mostly, and offer a country-style, four-finger half wave from the steering wheel as we blow past each other on the highway between towns.

Over the next 120-mile drive I am perplexed and obsessive.

“I’m so jealous. You look amazing.”

I’m nearly 51 years old and was prepared for the idea that menopause would keep me round despite my best efforts. How much weight have I lost? Was I really that fat before? Should I eat before I get to the hospital or after? The smell of food makes Devon sick. Eating in front of her seems torturous and unfair.

After I arrived at the hospital, a friend stopped by to visit. Before acknowledging Devon, she looked at me. With purrs of envy, she commented on how thin I looked. Again, I was at a loss for words. My daughter was not.

“My mom is not skinny because she worked at it,” Devon told our visitor. “It’s because I’m sick.”

The friend waved it off in the way that one deflects praise of a nice outfit with “this old thing,” and we all moved on. But every time someone notices my weight loss with a tinge of envy it makes me cringe.

Please, I want to tell them, do not admire how thin I have become since my daughter’s diagnosis — unless you are suggesting I look undernourished and want to give me a cupcake. My weight loss is not a goal you should aspire to, nor should it be confused with health and well-being. I was perfectly happy and fit in my pre-cancer-kid size, and a little hurt to hear that this shrinkage that could cost me a lot more than new pants makes me more beautiful than ever.

But what is most painful for me is the collateral damage to my daughters. When they hear that Mom is enviably thin, they hear that this is a reward, a take away for the suffering. That thin is best no matter the circumstances.

Gracie, a minute ahead of her twin, but always an inch and a pound behind, is now getting stretch marks from growing so fast. When her peers note how she “swims” in her choir dress, her mind begins the dance with body consciousness. Weight fluctuations are somewhat inevitable in adolescence and during menopause, but certainly magnified under the circumstances.

Devon’s physical changes are pushed to the bottom of most people’s thoughts now, because in this setting of a hospital room, she’s supposed to look wan and pale. Instead, her inner beauty and sense of humor are noted.

I’ve been sick and thin enough times to know I don’t want to be either. But my girls are facing this for the first time, and the ripple effects of this entire traumatic episode will surface the farther we get from the cancer. Hospital social workers are preparing us to watch for anxiety, regression, depression, eating disorders, apathy and sleeping issues. And signs of cancer returning, of course. And survivor’s guilt in Gracie, which could carve out a whole new emotional journey.

Devon, thankfully, is home now. But I’ve just been told that five months in the hospital have cost Devon nearly a third of her body mass. That her overall strength is that of a 90-year-old, and that after the chemo, her heart, which once pounded fearlessly, is in danger of failing. Her brain is wobbly from the lack of nutrition and her skin is translucent and cold where it once was earthy and warm.

When she returns to school next year, navigating the social riddle of middle school — now half a year behind her peers — and still mostly bald, and undoubtedly still thin, she will return with a self-consciousness she has never known.

Do not covet her thinness. Admire her resilience, and tenacity, and sheer will to live.

And, if you look into her eyes and you can see they are dim from the struggle, a happy-to-see-you smile or just saying nothing at all will do more than you know to help her find her way to loving herself as life has created her in this moment.

If you want to know how someone is, look in their eyes, because their size is not where the information is.

Keeping the Disruption of a Move in Perspective


Credit Camilla Engman

At midnight, the ice cube dispenser on the refrigerator is not merely dripping. Water pours onto the floor. I drop down towels, empty the accumulated cubes from their plastic container and pop it back inside the freezer.

“Was that the right thing to do?” I ask my husband, who is trying to sleep. “For goodness sakes,” Don says, getting out of bed. We must leave for my monthly cancer blood test at 8 a.m. tomorrow.

Don pulls out the tray, puts it in the sink, and props up a little stick in the freezer, pushing up the ice maker’s metal wand in an attempt to stop the leak. Might work, might not… I’ll stay awake to see whether the deluge stops. When an unexpected disaster arises, I diminish its significance by comparing it to the worst of my cancer treatments a few years ago. I can do this because my current condition remains stable with an experimental drug.

Yet as I contemplate all the chairs and sofas and rugs that have to be donated to Goodwill, the mattresses and box springs to be given to the St. Vincent de Paul society, my late mother’s files and cabinets, Don’s late wife’s luggage and papers, his massive collection of 78 r.p.m. records, the yards of books on the shelves in the studies, our daughters’ stored memorabilia and their children’s baby equipment, the sheer volume of stuff seems daunting.

We are moving from a house of 4,000 square feet to an apartment less than half that size. One reason for our relocation: Don and I want to release our girls from the responsibility of dealing with the detritus accumulated over decades. We also have to leave because he cannot negotiate the stairs and both of us together cannot manage the upkeep.

Throughout the weeks and then the months when our beloved but aging house has to be repaired so we can sell it, workers arrive to shore up the porch, to fix the bowed ceiling supports in the garage, the cracks over the foyer doorway, a foundation that needs to be anchored to keep the structure from shifting, broken screen doors, mold in basement closets, chipped kitchen cabinets, and (oh!) a tree appears to be growing out of the chimney, and (yup!) an inspector found clogged drains — which suggest there might be trouble with the septic tank.

People tell me that moving ranks high up there on the stress index. But the commotion comes nowhere close to the terrifying havoc of cancer and its traditional treatments. Throughout the weeks and then the months of removals and renovations, the rhythms seem downright soothing, if measured against the ghastly tempos of surgeries, radiological interventions and chemotherapies.

The magnitude of cancer provides a scale against which everything else falls happily short. Cancer can be so bad that it imparts a sense of proportion. The poet Jane Kenyon once said that leukemia and a bone marrow transplant dispelled her fear of flying.

In the midst of all this chaos, I will postpone treating my recently diagnosed osteoporosis — I’m not clear yet about the efficacy of various remedies — but what about the cataract surgery? With or without glasses, I cannot see clearly and I have become the designated driver. Given the boxes mounting everywhere as well as the appointments of various people who are coming to take away the piano and the records and some paintings we won’t have room for, should I cancel? No way, I decide: a piece of cake, in contrast to cancer.

Ever shifting, the cancer terrain is treacherous to negotiate, its perilous landscape always unstable. There are roadmaps, but they often seem indecipherable. With surgeons, radiologists, and oncologists, I advance without a clear sense of how I will end up where and when.

As a cancer patient, I feel like an immigrant in a strange land. The customs of the country bewilder me. Dazed by unfamiliar sounds, sights, tastes, and touches, I had to learn a whole new language quite distinct from the idioms of every day discourse. I will never master it.

I speak of genetic mutations, chemicals and my anatomy in a grammar so simple that it resembles a 2-year-old’s. Terms must be adopted — debulking, PICC, port, PARP inhibitor — for processes I cannot really conceptualize. Frequently, physicians and nurses have to write down or spell out their prescriptions or directions. I mispronounce or stumble over words — anastomosis, extravasation, Gastrografin — that seem foreign.

So even this unsettling removal from a country house to an apartment strikes me as a change I can take in stride. After all, I know the address of my destination, the date of my prospective arrival, the route the truck will take and the neighbors speak my native tongue.

I’m staying up very late and can attest to the fact that the kitchen floor has remained dry. Don and I will travel to the hospital tomorrow and return. I will have cataract surgery and we will reside in a town whose byways may be easier to navigate with improved vision.

When you have cancer, you don’t just have cancer: You might have a broken refrigerator and cataracts and osteoporosis and loads of other issues. But you also have a unique perspective which, in a curious way, helps me keep on moving on.

Susan Gubar is the author of the new book “Reading and Writing Cancer: How Words Heal.”

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Credit Karsten Moran for The New York Times

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Parenting Our Children After We Die



Accounts of the grief children suffer after the deaths of their mothers or fathers reinforced my desire to use the time granted by treatment to help my adult children cope with my demise. We always parent our offspring to survive us, but cancer intensifies the urgency to do so.

I am not a fan of “anticipatory grieving,” the term psychologists use to describe how some people with chronic disease mourn their expected death with their partners and kids. While I am alive, I do not want to subject my daughters to a long sojourn in the stony valley of the shadow. The idea of converting our present into a prelude of my absence distresses me.

Nor am I thinking of the medical and legal forms — advance directives, living wills, medical powers of attorney — that too many of us leave to the last minute, for those papers are in my husband’s keeping. I am also not considering the words dying people are advised to speak to their beloveds. On my deathbed, I hope I will express my gratitude and love. Given the drugs I will probably need for pain management, however, I cannot count on being coherent then.

Following the lead of other patients with cancer, I have composed two different documents to buffer my girls from the misery that ensues when a parent dies: letters my daughters will receive before and probably after my demise. Though I may never find out if these words ease their loneliness, I like to think they will. And they have certainly afforded me a respite from anxiety.


A page from “When David Lost His Voice.” <a href="https://static01.nyt.com/images/2016/06/30/health/well_gubar1/well_gubar1-articleLarge.jpg">See a larger version.</a>

A page from “When David Lost His Voice.” See a larger version.Credit

The first is called “What’s Where.” In it, I provide the locations of my lawyer, financial adviser, bank account, will, computer passwords, the girls’ juvenilia, and my personal effects. This one-page sheet of paper concludes with the name of the funeral home that will oversee the cremation of my remains and the site of the cemetery plot for the ashes. If nothing else, I hope that the existence of such a document demonstrates to my kids that I have reconciled myself to my fate.

The second, “Letters to My Daughters,” I began a year after diagnosis and extend periodically. Here, I relate specific memories I have of my two daughters and two step-daughters and more recently of their families. Each time I write a new section, I date it. It has the look of a journal, but consists of a succession of missives, some addressed to all of them, others to one of them.

In this computer file, I recount jokes, recall musical or sports performances during their school years, thank them for material and nonmaterial gifts, characterize their temperaments at birth or what I made of them when I first met them, embarrass them with stories about gaffes they and I have committed, regale them with cooking adventures and vacation misadventures, remind them of celebrations we relished together. Periodically thickening “Letters to My Daughters” inspires me to treasure our shared past. At some point I will print it out and put it in addressed envelopes.

Recently I encountered a short story and a graphic novel that crystalized my obligations and clarified what a terminal patient with younger children can do to help them.

In “Pretending the Bed Is a Raft,” a story by Nanci Kincaid that was made into the movie “My Life Without Me,” 23-year-old Belinda realizes that she will soon die from a gynecological cancer. In a list of things to do before death, she jots down: “tape-record birthday messages for my kids up until they turn 21. Tell them I love you every day.” For her 6-, 4-, and almost 2-year-old, she spends weeks recording instructions and assurances “until she had them all legally grown.”


A page from “When David Lost His Voice.” <a href="https://static01.nyt.com/images/2016/06/30/health/well_gubar2/well_gubar2-articleLarge.jpg">See a larger version.</a>

A page from “When David Lost His Voice.” See a larger version.Credit

Belinda suspects that if she gave the tapes to her husband, “he would listen to all of them the first night and after that he might lose them altogether.” So she determines to give them to a lawyer “who could dole them out one message at a time on the proper dates.”

About a father with larynx cancer, the graphic novel “When David Lost His Voice” considers what happens to a family when a reticent man becomes more silent during treatments for larynx cancer. In especially poignant pictorial sequences, the Belgian author and illustrator Judith Vanistendael focuses on David’s 9-year-old daughter, Tamar.

Pictures abound of Tamar’s last boat trip with her father, her swimming with the mermaid friend she encounters in the sea and sending a letter to a real friend via a balloon, her later conversations with this boy about how to preserve her father’s soul in a jar, her lying with David in his sickbed. These beautiful images convey the young girl’s fear of abandonment and her imaginative means of sustaining her attachment.

In the hospital, when Tamar hugs David’s emaciated body after his larynx has been removed, she wants her father to stay with her. Unable to speak, he writes her a note: “My darling, I am with you.”

Amid Ms. Vanistendael’s experiments with all sorts of visual forms — anatomical diagrams and scans, traditional comics, impressionist watercolors, pen and ink sketches, children’s book illustrations, surrealistic dreamscapes — I am especially moved by the small frames of David penning his note and of Tamar putting it into a vial she then strings around her neck, to remind herself that her dying father’s undying love will sustain her for as long as needed.

Susan Gubar is the author of the new book “Reading and Writing Cancer: How Words Heal.”

Putting Breast Cancer on a Diet


Linda Guinee, 60, a survivor of breast cancer, particpated in an earlier trial to see if weight-loss could improve her outcome. She lost 15 pounds and increase her physical activity.

Linda Guinee, 60, a survivor of breast cancer, particpated in an earlier trial to see if weight-loss could improve her outcome. She lost 15 pounds and increase her physical activity.Credit Shiho Fukada for The New York Times

Should weight loss be prescribed as a treatment for breast cancer?

Scientists are recruiting thousands of women for a large clinical trial to find out. The plan is to put heavy women age 18 and older who were recently given diagnoses of breast cancer on diets to see if losing weight will keep their cancer from coming back.

“We have been telling women to do this for years, but we don’t really have definitive proof,” said Dr. Jennifer Ligibel, the principal investigator of the Breast Cancer Weight Loss study, who is a breast oncologist in the Susan F. Smith Center for Women’s Cancers at Dana-Farber Cancer Institute in Boston.

“If it shows that losing weight by increasing physical activity and reducing calories improves survival, weight loss and physical activity could become a standard part of treatment for millions of breast cancer patients around the world,” Dr. Ligibel said.

In a sense, the clinical trial is long overdue. Once a woman is given a breast cancer diagnosis, obesity is associated with a higher risk for recurrence and lower likelihood of survival in women of all ages, Dr. Ligibel said.

Studies showing that obese and overweight women are more likely to die of their breast cancer date back decades. Just two years ago, a meta-analysis crunched the numbers from more than 80 studies involving more than 200,000 women with breast cancer, and reported that women who were obese when diagnosed had a 41 percent greater risk of death, while women who were overweight but whose body mass index was under 30 had a 7 percent greater risk.

But while those studies showed an association between weight and breast cancer mortality, they weren’t designed to find out if weight loss after diagnosis improves survival or reduces the chance of a recurrence.

“Nobody understands biologically why that is,” Dr. Ligibel said, adding that researchers will be collecting blood samples throughout the trial to track metabolic changes that occur with weight loss. Exercise is also part of the program, and participants will work with health coaches. Fitbit is donating all the products that will be used to track their activity and weight.

The researchers will look at markers of inflammation and metabolism, including levels of insulin, insulinlike growth factor and hormones that regulate fat storage.

“There’s a physiology of obesity that happens in everybody, but many of the changes we see in obesity actually are factors that influence the growth of cancer,” said Dr. Pamela Goodwin, one of the study’s investigators and a professor of medicine at Mount Sinai Hospital in Toronto.

These changes include higher insulin and glucose levels, inflammation and an increase in certain proteins, all of which appear to fuel cancer growth, Dr. Goodwin said.

Obesity “makes a great environment for cancer to get a foothold and progress,” said Barbara Gower, a professor of nutrition at the University of Alabama at Birmingham, who is running a small short-term trial to see what happens when women with ovarian cancer remove all sugar and starches from their diet. “The hormonal messages getting through to cancer cells are that it’s a good time to grow, and the nutrition they need is there, too.”

While a drug may target one of the factors, Dr. Ligibel said, weight loss and exercise may be a more powerful intervention because they lead to a combination of changes. “You have something that can potentially change all of them to a metabolically healthy low inflammatory state,” Dr. Ligibel said.

The trial, which will get underway this summer, will cost an estimated $15 million to $20 million. It’s sponsored by the National Cancer Institute and the Alliance for Clinical Trials in Oncology.

Researchers are recruiting 3,200 women from across the United States and Canada who have a recent diagnosis of Stage 2 or Stage 3 breast cancer. Participants must be overweight, with a body mass index of at least 27, and have hormone receptor positive or triple negative tumors. (Women with another type of breast cancer, known as HER2-positive, will not be included because their prognosis does not appear to be associated with weight, researchers said.)

Participants must be 18 but there is no upper age limit, though they must be able to walk “a couple of city blocks and have a life expectancy of at least five years for other causes,” Dr. Ligibel said.

Volunteers will be randomly assigned to either a telephone-based weight loss program or to a control group for comparison. The goal for those in the intervention is to lose 10 percent of their body weight over two years. Participants will continue to be followed for 10 years to see whether their cancer progresses or not.

Weight loss is challenging, and some cancer treatments cause weight gain. But an earlier trial that tested a similar telephone-based weight loss intervention on a smaller scale found that women with breast cancer lost 4 to 5 percent of their body weight, Dr. Goodwin said.

“Breast cancer is a teachable moment,” she added.

The new trial might help doctors identify which patients will benefit most from losing weight, and whether even moderate weight loss is helpful, said Dr. Clifford Hudis, the new chief executive officer of the American Society of Clinical Oncology and former chief of Memorial Sloan Kettering Cancer Center’s breast medicine service, who was involved in the design of the Breast Cancer Weight Loss trial.

“If I tell patients they need to lose 20 pounds, they just roll their eyes and say it’s impossible,” Dr. Hudis said. “But if we could say they only need to lose 3 percent of their body weight, that wouldn’t be so scary. That’s more manageable.”