Tagged Cancer

Cancer in the Family: Compliments on Being Thin

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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

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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.”

Ask Well: Is Watermelon Good for You?

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Credit Karsten Moran for The New York Times

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Parenting Our Children After We Die

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Credit

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.

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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.”

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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

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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.”

No Such Thing as a Healthy Smoker

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Credit Paul Rogers

Smokers who think they are escaping the lung-damaging effects of inhaled tobacco smoke may have to think again, according to the findings of two major new studies, one of which the author originally titled “Myth of the Healthy Smoker.”

Chronic obstructive pulmonary disease, or C.O.P.D., may be among the best known dangers of smoking, and current and former smokers can be checked for that with a test called spirometry that measures how much air they can inhale and how much and how quickly they can exhale. Unfortunately, this simple test is often skipped during routine medical checkups of people with a history of smoking. But more important, even when spirometry is done, the new studies prove that the test often fails to detect serious lung abnormalities that cause chronic cough and sputum production and compromise a person’s breathing, energy level, risk of serious infections and quality of life.

“Current or former smokers without airflow obstruction may assume that they are disease-free,” but that’s not necessarily the case, one of the research teams pointed out. These researchers projected that there are 35 million current or former smokers older than 55 in the United States with unrecognized smoking-caused lung disease or impairments. Many, if not most, of these people could get worse with time, even if they have quit smoking. They are also unlikely to be referred for pulmonary rehabilitation, a treatment that can head off encroaching disability.

Perhaps most important, those currently smoking may be inclined to think they’ve dodged the bullet and so can continue to smoke with impunity. Doctors, who are often reluctant to urge patients with symptoms to quit smoking, may be even less likely to recommend smoking cessation to those with normal spirometry results.

Referring to C.O.P.D., one of the researchers, Dr. Elizabeth A. Regan, said, “Smoking is really taking a terrible toll on our society.” Dr. Regan, a clinical researcher at National Jewish Health in Denver, is the lead author of one of the new studies, published last year in JAMA Internal Medicine. “We live happily in the world thinking that only a small percentage of people who smoke get this devastating disease,” she said. “However, the lungs of millions of people in the United States are negatively impacted by smoking, and our methods for identifying their lung disease are relatively insensitive.”

Even when the results of spirometry are normal, Dr. Regan added, “a lot of smokers have respiratory symptoms. They get sick often, are more likely to be hospitalized with bronchitis or pneumonia, and have evidence on CT scans of thickened airway walls or emphysema that impair breathing.”

Dr. Prescott G. Woodruff, lead author of the other study, published May 12 in The New England Journal of Medicine, said in an interview, “Smokers have much more lung disease than we previously thought. The 15 to 20 percent who get C.O.P.D. is a gross underestimate.” Too often, Dr. Regan’s team pointed out, symptoms like shortness of breath and limits on exercise are “dismissed as normal aging.”

The multicenter study headed by Dr. Woodruff, a pulmonologist at the University of California, San Francisco, found that smokers with normal findings on spirometry nonetheless are likely to have chronic respiratory symptoms like cough, phlegm, wheezing, shortness of breath and chest tightness; lower than normal exercise tolerance; and evidence on a CT scan of chronically inflamed airways in the lungs. They also use more antibiotics to control respiratory infections and drugs called glucocorticoids to alleviate breathing difficulty. They pay more visits to doctors and emergency rooms and have more hospital admissions because of a flare-up of respiratory symptoms.

In other words, they are far more prone than nonsmokers to experiencing terrifying episodes of troubled breathing.

Of course, while lung disease is most prevalent, it is hardly the only adverse health effect of smoking, a source of noxious substances that can damage almost every organ system in the body. The list of smoking-related diseases has grown exponentially since smoking was labeled a probable cause of lung cancer 52 years ago in the first Surgeon General’s report on smoking and health. The decades since have added many other deadly cancers, heart disease, stroke, high blood pressure, blood clots, peripheral artery disease, Type 2 diabetes, rheumatoid arthritis, cataracts and macular degeneration, as well as C.O.P.D.

The new findings by the two investigative teams prompted Dr. Leonardo M. Fabbri of the University of Modena and Reggio Emilia in Italy to write an editorial accompanying the New England Journal study titled “Smoking, Not C.O.P.D., as the Disease.” He explained that the results of the two studies “suggest that smoking itself should be considered the disease and should be approached in all its complexity.”

The challenge ahead, Dr. Fabbri wrote, is to identify patients with smoking-related lung damage who do not yet have obstructive disease and devise ways to treat them to reduce their symptoms and prevent flare-ups.

A clinical trial to begin later this year, sponsored by the National Heart, Lung and Blood Institute, will examine whether treatments like use of a bronchodilator will help to alleviate symptoms in those without obstructive disease. Unfortunately, “the cost of bronchodilator medication has gone through the roof,” Dr. Woodruff said. Decades ago, people with breathing problems like asthma used aerosol bronchodilators that included chemicals called fluorocarbons. But these were banned for environmental reasons in the mid-1970s, and the replacements that drug manufacturers came up with are still not available in generic form, keeping prices high.

Dr. Woodruff said that rehabilitative exercise, one of the best treatments for C.O.P.D., should also help people with lung damage short of obstruction because it improves the ability of muscles to use available oxygen more efficiently.

To improve exercise tolerance, patients are encouraged to walk as fast as they can for as long as they can, rest, then walk some more. Most patients find this easiest to do on a treadmill, where speed and incline can be precisely regulated and the results measured. But if such equipment is unavailable or too costly to access, walking indoors or outdoors can be helpful if geared to a specific distance and speed that are gradually increased.

Most critical, of course, is for smokers with or without symptoms of lung disease to quit smoking, which can reduce the severity of respiratory symptoms and slow the decline in lung function, Dr. Regan’s team wrote. However, the team added, quitting smoking “does not eliminate the risk of progressive lung disease,” which means that the lungs of former smokers may need to be examined periodically.

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Churchgoers May Live Longer

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St. Patrick’s Cathedral in Manhattan.

St. Patrick’s Cathedral in Manhattan.Credit Chang W. Lee/The New York Times

Going to church may lower the risk for premature death, a new study suggests.

Researchers used data from a long-term study of 75,534 women that tracked their health and lifestyle, including their attendance at religious services, over 16 years through 2012. The report is in JAMA Internal Medicine.

After controlling for more than two dozen factors, they found that compared with those who never went to church, going more than once a week was associated with a 33 percent lower risk for death from any cause, attending once a week with a 26 percent lower risk, and going less than once a week a 13 percent lowered risk. Risks for mortality from cardiovascular disease and cancer followed a similar pattern.

The researchers statistically eliminated the possibility of reverse causation — that is, that healthy people go to church more than unhealthy ones. And they found that some variables, such as social support and a tendency not to smoke, contributed to the effect. But no matter how they analyzed the data, the effect of church attendance alone seemed to have benefits.

“This suggests that there is something powerful about the communal religious experience,” said the senior author, Tyler J. VanderWeele, a professor of epidemiology at Harvard. “These are systems of thought and practice shaped over millennia, and they are powerful.”

An Artist Takes On Cancer

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Susan Gubar

Susan GubarCredit Vivienne Flesher

In 2010, at age 29, the songwriter and performer Benjamin Scheuer was given a diagnosis of stage 4 Hodgkin lymphoma, a cancer of the lymph nodes. He recounted his experience, along with other family perplexities, when he played himself in his one-man autobiographical musical, “The Lion,” which opened Off Broadway last year. In the new video “Cure,” directed by Peter Baynton and premiered here on Well, Mr. Scheuer conveys the dread that brands cancer patients, whether or not their type of disease is treatable.

As sung by a self-proclaimed optimist who has been given the good odds of an 85 percent chance of full remission, “Cure” begins with a defenseless Mr. Scheuer, supine on a bed. The camera fragments him into body parts: a mouth, a limb, a trembling torso. From an area near his heart, where a port would have been implanted, rivulets of ink streak down his arms to the tip of his fingers, down his legs to cover the soles of his feet, branching over his quivering or convulsing midriff.

The chemotherapy Mr. Scheuer received was called A-B-V-D: Adriamycin, Bleomycin, Vinblastine and Dacarbazine. “Cure” depicts the chemicals striking like lightning, as if to shock the body or map it with bombed roadways, tracking a jagged terrain. The speed of the tattooing brings to mind the words “invasive” and “systemic.” We are looking at a representation of cancer treatment, but the video evokes terror at the disease’s malevolent capacity to spread quickly.

For viewers familiar with Franz Kafka’s story “In the Penal Colony,” the calligraphy on Mr. Scheuer’s skin may recall the sentences, etched by torture machinery, on a condemned prisoner’s body during the 12 hours it takes for him to die. Remarkably, though, the tone of the singer remains less shocked or shocking, more ruefully contemplative.

In a quiet voice, Mr. Scheuer sings about learning the results of testing done after 12 treatments. Although throughout the ordeal he has been fighting panic and fear, they threaten to engulf him as he worries about ending up like his father, with cancer in his brain and his spinal cord. Clothing starts to grow over him, covering his marked body. Does his being passively clothed mean that he is being costumed for a coffin?

After the doctor informs him that the treatment has worked, after his jacket is buttoned, Mr. Scheuer finally sits up, hearing the words “You’re cured.” But the sad final tones of his voice and guitar reflect his isolation in a room with bed sheets that remain indelibly imprinted with the sinister designs.

Although “Cure” seems quite distinct from the more amiable and upbeat folk tunes in his album, “Songs from the Lion,” its hermetic room with its isolated inmate raises issues that Mr. Scheuer addressed with the photographer Riya Lerner in their book, “Between Two Spaces,” namely the alienating landscapes of treatment. (Some of their collaborative work will be on exhibit at the Leslie-Lohman Prince Street Project Space on June 7.)

Cancer patients, who must shuttle between their homes and hospitals, frequently experience the clash between familiar, comfortable environments and strange, anxiety-producing settings. Mr. Lerner explores the disparity but also the blurring of these worlds in a book composed of portraits of Mr. Scheuer interspersed with snippets of texts from his journals. For me, as for Mr. Lerner and Mr. Scheuer, the contrast involves clothing: One of the humiliations of the hospital entails my flesh being exposed in cubicles where doctors, nurses and technicians are fully clothed.

“Between Two Spaces” opens with a picture of a suited but barefooted Mr. Scheuer bending over to choose between two pairs of shoes. It concludes with him sporting a coat and hat in a snowy park. Inside his recording studio or at home he appears blanketed or costumed: “I could control, to the tiniest detail, what I wore,” he explains in a reprinted journal entry, “so the worse I felt the more care I put into the shine of my shoes, the knot of my tie.” But in a PET scan or undergoing chemotherapy, he is only partly robed or completely undressed beneath or entering massive machinery.

The cover of “Between Two Spaces” features what looks to be a soothing picture of a naked Mr. Scheuer partly submerged in a bathtub. At least in my experience, bathing in a tub occurs only in the security of home, not in the hospital. Yet the journal entry, appended to this image within the book, mentions his watching a frightening video of Japan’s tsunami: “The land is now the sea, the churning, angry ocean. Black, filled with unwilling passengers, debris, creating clouds of mist, blindness, dust dirt smoke all grey and brown, all the houses and their red roofs are squeaking clean of their foundations like boats unmoored.”

What had at first seemed a serene portrait of the artist with his eyes closed, floating on the surface of the water, now portends drowning and death. Out of the hospital, as inside it, the patient endures an inexplicable natural disaster.

To my aging eyes, the youthful vulnerability of Benjamin Scheuer makes both the video and the photographs moving. Although, unlike me, he deals with a curable disease, he resembles all cancer patients who must come to terms with the term remission. The poignancy of Mr. Scheuer’s and Mr. Lerner’s images arises from the implacable effect that estranging clinical spaces impose on previously secure domestic places.

Even the cured must take their cancer experiences home with them where, paradoxically, remission — untrustworthy as a safe haven — continues to unmoor us.

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How Much Do You Want to Know About Your Cancer?

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Credit Stuart Bradford

Your appointment is at 2:00 on a Tuesday afternoon. It’s your first visit to the cancer center. You’re probably wondering what we are going to say to you. A tumor was recently detected in your left lung and has spread to your bones and liver. A biopsy was performed.

We’re meeting you for the first time, soon after your primary care doctor, or surgeon, has sat down with you, or called, to tell you some terrible news: You have cancer.

We are the oncologists, and we want to help. We want to discuss your diagnosis, what it means and what the options are for treatment. We’d like to give you a clear map of what your life might look like over the next few months as we fight along with you to minimize the amount of this awfulness, even if temporarily, from your body. We want to answer all of your questions.

But one of the biggest problems we face is that we often can’t figure out what our patients would like to know about their prognosis.

Even when we ask.

Spoiler alert: Despite all the exciting stories about progress against cancer that you’ve heard about in the news, there is no cure for most types of cancer once they have spread to other organs. On average, people with lung cancer like yours that has metastasized live another 18 months.

How much of this do you want to know?

It’s a lot to take in. Two months ago you felt fine, and now you have a life expectancy of one to two years. It’s probably the worst news you’ve ever been told. Next year is your 20th wedding anniversary, and your two teenage children don’t even know yet that you are sick. So in many ways, our lament is completely unfair – it’s on us to determine the right time to discuss prognosis.

What can we do to help?

We have all the facts at our fingertips: average survival; likelihood of being alive in five or 10 years; likelihood that chemotherapy will work; and even how long it might work. We will try to put the information in context, adjusting it for your particular situation, and be sure to emphasize that the data were developed in a specific population of patients and may not apply to you as an individual.

Oh, did you not want to hear numbers?

We can roll with that.

We can speak in generalities. We can use phrases such as “likely to be effective” or “most of the time.” We can say, “some people” or “live for years.” Or months.

If that’s what you’d like. But what we don’t want is to be one of “those” doctors.

You know what we mean. The doctors who never talk to their patients about likely outcomes, or life expectancy, and who don’t prepare them for the inevitable. One of us conducted a study in 348 patients with bone marrow cancers in which 35 percent of those patients reported never having discussed prognosis with their doctors. In another study, 74 percent of a similar group of patients estimated their chance for cure to be greater than 50 percent, while their doctors estimated the chance for cure in that same set of patients to be less than 10 percent.

We will do anything to avoid your returning to us with the regret, “I didn’t have time to plan.” Or your widow writing a letter to castigate us with “You never warned me.”

We want to give you time. We want to warn you. Sometimes we advise you to talk to your children’s teachers so that they know there is a crisis at home. Or to put your affairs in order. But often, we just can’t figure out what you want to hear.

And we get it. We would be just as blown away at a cancer diagnosis, and would have just as much difficulty processing all of the information. When we look into your face and really try to connect with you, to read your emotions, we often see fear. And sadness. And regret. And disbelief. And sometimes hopelessness.

We want to give you hope.

At the very least, we don’t want to dash your hopes. We’ll focus on the positives, the best-case scenarios. We’ll tell stories about some of our superstar patients, the poster children for cancer survival, the ones who ignored the statistics and have lived to brag about it.

But we need to place that hope in the staid court of likelihoods. After all, we aren’t hucksters. This balance, between hope and honesty, remains an uneasy truce in medicine. We want you to believe us, to trust us. We recognize that, in some ways, you are placing that most precious of possessions, your own life, in our hands. And we view this as a sacred bond: We will earn your trust by always speaking the truth, though not necessarily all of it.

The inescapable fact is that a tragedy is unfolding and we’re the bearer of the news. A life will be cut down prematurely, young children will be left without one of their parents, a spouse will be left on his or her own. It’s unfair and we can’t stop it. We wish we had more to offer and believe us, the enormity of the tragedy often makes us weep. And yet, our sadness probably doesn’t help you.

So please tell us. How much would you like to know?

Dr. Mikkael Sekeres is director of the leukemia program at the Cleveland Clinic. Follow him on Twitter @MikkaelSekeres.

Dr. Timothy Gilligan is the director of coaching, Center for Excellence in Healthcare Communication, at the Cleveland Clinic.

After a Cancer Diagnosis, Reversing Roles With My Mother

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Steven Petrow (left) with his siblings, Jay and Julie, and mother, Margot Petrow, on her 84th birthday in February.

Steven Petrow (left) with his siblings, Jay and Julie, and mother, Margot Petrow, on her 84th birthday in February.Credit Caroline Petrow-Cohen

If anything about my mother was conventional, it was the smoking. Like many of her generation she smoked early and often, and I swear she waited to light up until we were hermetically sealed in our family’s Ford Country Squire. My brother, sister and I hated it — we tried over and over to get her to quit. She made some attempts: Patches and gum, even hypnosis by a Russian. She had some short-term successes, but soon enough I could smell the smoke on her breath or see the burnt-out butts hidden in her desk drawer ashtray.

The last time I begged Mom to quit, she shot back with a stern rebuke: “I very much appreciate your concern,” followed by an expletive. The message was clear: Mind my own business. Indeed, Mom has always been “spirited.”

From both ends, ours was not an easy relationship.

Four years ago, at 80, Mom wound up in the emergency room after she passed out in bed; her carotid artery was 90 percent blocked. The doctor ordered a routine pre-op chest X-ray and found a mass that turned out to be lung cancer. “Did my smoking have anything to do with this?” Mom asked the handsome cancer surgeon, almost flirtatiously. “Yes,” he told her. “Then I’ll quit,” she said. And that, finally, made her stop, once and for all.

A few weeks later “Dr. Handsome,” as the family began referring to him, took out part of her left lung at the very same New York cancer hospital where I’d had cancer surgery three decades before. I’d wound up there only because Mom had insisted that I get a second opinion after my first operation, an orchiectomy to remove my cancerous testicle, at a hospital on the opposite coast. While I’d been overjoyed when the oncologist told me I was a candidate for “watchful waiting” and that he’d “never lost a patient,” Mom thought the latter comment quite odd for a doctor who treated cancer patients. I caved, flew east, and learned I needed more treatment, stat. Score one for Mom.

During Mom’s first hospitalization for her cancer our roles flipped. I became her caregiver, and she became my charge. With nurses busy elsewhere, I made sure her bedpan got changed, or contacted the surgeon to boost her pain medications when needed. On a no less important matter, I made sure she got a chocolate, not vanilla, milkshake daily. After my own stays in the hospital, I had learned how to “work” the hospital staff, using genuine praise, patience and small gifts of candy.

I also had that firsthand knowledge of what it meant to suddenly become a cancer patient, dependent on the kindness of strangers and family alike. I knew what it was like to face the mechanical roar of the CT scanners, not to mention the anxiety and fear that your book of life may be coming to an end sooner than you’d expected.

Some days I held Mom’s hand, her Jungle Red manicure always perfect, as the nurses pricked her repeatedly to get a good line. Other times I’d just sit with Mom and let her talk. About my father. My sibs. And herself.

Increasingly, she asked me about my cancer travails, which included multiple surgeries and four rounds of chemo. “I can’t believe you went through all this,” she said time and again. Still, I’d been in my 20s; mom was now in her 80s. As different as our cancers were, not to mention our ages, I’d become her travel guide in this new country of illness.

Then one day she piped up, her voice an octave or two higher than usual: “I’m afraid.”

“Afraid of what?” I asked.

“Of the pain of dying. And leaving you kids.”

I told her we’d make sure she didn’t suffer. And as for the three kids, I told her not to worry about us. “We’re all in our 50s now,” I reminded her.

As I had decades ago, Mom recovered from her first operation. And also like me, she moved into a netherworld I knew all too well: The “after” stage, during which you struggle to believe it’s over, all the while dreading its return.

Last year I moved her semi-annual scan from late December to mid-January. With bad news always a possibility, why risk ruining the holiday? I was glad I’d done that when the scan showed a new mass. Although the doctor was the official bearer of the bad news, it was left to my brother, sister and me to explain what that meant, all the while reassuring her we’d be there to help.

As it turned out, one of the most important decisions she’d have to make was what treatment, if any, she should soldier through to combat this new malignancy. Dr. Handsome recommended radiation, but he didn’t sound very optimistic. I decided Mom needed a second opinion, maybe even a third, and with some cajoling — just as she had urged me on so many years before — she sat down with a radiation oncologist. He was much more encouraging about what to expect, and she took his advice.

And so it was not too many months ago, after helping her back into her street clothes and into the Uber after her daily radiation, that we were headed home from the hospital. She grasped my hand tightly and told me how glad she was that I was with her. “Whatever our problems were,” she said, “I’m happy they’re behind us.” I squeezed her hand back.

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Lawsuits Over Baby Powder Raise Questions About Cancer Risk

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Credit Tony Cenicola/The New York Times

Deane Berg thought she was going to die, and she wanted to know why. She was 49, way too young, she thought, to have advanced cancer in her ovaries.

As she scrolled through websites that listed possible causes of ovarian cancer, one jumped out at her: talcum powder. She did not have risk factors like infertility or endometriosis, but she had dusted baby powder between her legs every day for 30 years.

“I went into the bathroom, I grabbed my Johnson’s Baby Powder and threw it in the wastebasket,” recalled Ms. Berg, now 59, a physician assistant in Sioux Falls, S.D. “I said, ‘What else could it be?’”

Ms. Berg was the first of thousands of women with ovarian cancer to file a lawsuit against the consumer products giant Johnson & Johnson, claiming that Baby Powder caused their disease and pointing to a long trail of studies linking talc to the cancer. The research dates to 1971, when scientists in Wales discovered particles of talc embedded in ovarian and cervical tumors.

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Deane Berg with her husband, Jim. She blamed Johnson’s Baby Powder for her ovarian cancer.

Deane Berg with her husband, Jim. She blamed Johnson’s Baby Powder for her ovarian cancer.Credit David Eggen for The New York Times

Since then, numerous studies have linked genital talc use to ovarian cancer, including a report earlier this month that among African-American women, genital use of powder is linked with a 44 percent increased risk for invasive epithelial ovarian cancer.

Johnson & Johnson says its trademark Baby Powder is safe, and it plans to appeal two multimillion dollar jury awards, including $55 million in damages awarded to a cancer survivor earlier this month and a $72 million award in February.

The International Agency for Research on Cancer in 2006 classified talcum powder as a possible human carcinogen if used in the female genital area. But the agency, part of the World Health Organization, has also said pickled vegetables and coffee are possible carcinogens and that hot dogs cause cancer.

Johnson & Johnson says research implicating talcum powder is flawed and points to studies that absolve talc of any cancer risk.

“We have children ourselves,” said Tara Glasgow, the research and development lead for the company’s baby products franchise worldwide. “We would never sell a product we didn’t believe was safe.”

So did the juries get it right or wrong? Is it plausible that Johnson’s Baby Powder — that clean-smelling soft stuff that’s a medicine cabinet staple, packaged in milky-white containers and supposedly mild enough for babies’ bottom — can cause cancer?

It’s not an easy question to answer.

“There is no way we’re ever going to know for certain that any exposure is necessarily causal to a disease,” said Dr. Shelley Tworoger, an associate professor of medicine and epidemiology at Brigham and Women’s Hospital and Harvard. “We might be 99 percent sure,” in some cases, she said, “but there’s usually no way to guarantee that what you see is actually the truth.”

Cancer is hard to study because it develops over a long period of time and is influenced by many factors, including genes, behaviors and environmental exposures. The best we can do, Dr. Tworoger said, “is look at the preponderance of the evidence.”

Talc is a naturally occurring clay mineral composed of magnesium and silicon. Known for its softness, it is used in cosmetic products like blush because it absorbs moisture and prevents caking. It is also an additive in tablets, chewing gum and some rice. It’s often mined in proximity to asbestos, a known carcinogen, and manufacturers have to take steps to avoid contamination. Many women use the powder on their inner thighs to prevent chafing, while others sprinkle it on their perineum, sanitary pads or underwear to stay “fresh” and dry. A 1980s ad campaign for a once-popular powder promised with a catchy jingle that “a sprinkle a day helps keep odor away.”

There has never been an experiment to see what happens when you deliberately expose women to talcum powder — for practical and ethical reasons, there never will be — so scientists must rely on observational studies that can link an exposure to a disease but cannot determine a cause-and-effect relationship.

In 1982, a Harvard professor, Dr. Daniel W. Cramer, and his colleagues compared 215 women with ovarian cancer and 215 healthy women who served as a control group. Compared with nonusers, women who used talcum powder were at nearly twice the risk for having ovarian cancer, and those who used it regularly on their genitals and sanitary pads were at more than three times the relative risk.

At least 10 subsequent studies echoed the results, with varying degrees of increased risk. But a small number of studies did not find a heightened risk for talc users.

When researchers pooled the results of similar studies involving nearly 20,000 women, they found powder use was associated with a 24 percent increased risk for ovarian cancer, an uncommon disease but one that is often fatal. If the finding is true, it means that for every five or six talcum powder users who develop ovarian cancer, one may be a result of talcum powder use, Dr. Steven A. Narod, an expert in cancer genetics from Toronto, said.

But critics say such studies can get it wrong, because they quiz women about their risk factors after a cancer diagnosis, and people, by nature, have selective memories.

“A patient is looking for reasons, and wondering, Why did this happen to me?” said Dr. Larry Copeland, a gynecologic oncologist from Ohio State University Wexner Medical Center and paid expert for Johnson & Johnson. If a researcher asks a patient about talc use, he said, “The answer is going to be ‘Aha, yeah — maybe that was it.’”

Dr. Copeland points to a large government-funded study, the Women’s Health Initiative. Researchers asked 61,576 women at the beginning of the study whether they had ever used perineal powder (although they did not specify talcum powder) and tracked their health over time. After 12 years, the study investigators found no relationship between powder use and cancer.

But that paper has critics, too. Dr. Narod said that the Women’s Health Initiative cohort was not large enough and did not track women long enough to find differences in ovarian cancer. The findings, he said, do not invalidate the earlier observational research that showed a link between talc and cancer.

Why talc use might lead to cancer is not clear. Studies have shown that talc crystals can move up the urinary tract into the peritoneal cavity, where the ovaries are. Indeed, a pathology report on Ms. Berg’s tumor found talc particles embedded in the tissue.

There is also a plausible mechanism, Dr. Tworoger said, because talc particles can set off inflammation, and inflammation is believed to play an important role in the development of ovarian cancer

Since the research began showing a link between talc and cancer in the 1990s, federal officials have not acted to remove the powders or add warning labels. The nonprofit Cancer Prevention Coalition petitioned the Food and Drug Administration in 1994 and again in 2008 for talc warning labels. In a 2014 denial letter, the agency said there was “no conclusive evidence” to establish causality, though it is plausible that talc “may elicit a foreign-body-type reaction and inflammatory response that, in some exposed women, may progress to epithelial cancers.”

Nevertheless, Johnson & Johnson made plans to “grow the franchise” by targeting African-American and Hispanic customers, according to internal company documents obtained by the plaintiff’s lawyer, Allen Smith. “Negative publicity from the health community on talc (inhalation, dust, negative doctor endorsement, cancer linkage) continues,” a 1992 memo said.

Although Johnson & Johnson’s talc supplier added warning labels in 2006, J&J did not add similar warnings to its products, according to litigation documents. Baby powder does carry a warning to keep it out of the reach of children and many pediatricians discourage its use on babies, who can become ill or die after breathing in the particles. Inhalation studies in female rats demonstrated carcinogenicity, according to the National Toxicology Program. Condom and surgical glove makers have stopped dusting their products with talc.

“Talcum powder is an interesting case, because it’s not something that’s necessary,” said Dr. Anne McTiernan, an epidemiologist with the Fred Hutchinson Cancer Research Center in Seattle. “If there’s any doubt, why should anyone use it?”

As for Ms. Berg — the Sioux Falls woman with advanced ovarian cancer — she won her lawsuit against Johnson & Johnson, but the jury did not award damages. She hopes other talc lawsuits will raise awareness.

“I knew nothing about this before,” she said. “I figured baby powder is for babies, it must be safe.”

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Bad News Delivered Badly

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Susan Gubar

Susan GubarCredit Vivienne Flesher

My friend Dana had become alarmed at a canker sore under her tongue: “a white patch, the size of my pinkie fingernail.” Canker might be cancer, she immediately suspected, possibly signaling a recurrence of her endometrial disease. She called an ear, nose and throat practice and made an appointment for what turned out to be a biopsy.

A week later, a nurse phoned to read the pathology report: “Superficial fragment of moderate to severe dysplastic squamous epithelium, cannot rule out invasive squamous cell carcinoma.” Although Dana urged her to define these terms or explain their significance in this particular case, the nurse resisted, stating that the doctor would explain them in a follow-up appointment the next week.

Needless to say, Dana immediately went online where the definitions did not comfort her. At bedtime, she wept herself to sleep, worrying that she would again lose 15 pounds in radiation, imagining her tongue cut out, brooding over a recurrence and her father’s earlier vocal cord cancer, grieving over putting her children and husband through yet another round of treatment. Finally at the appointed consultation, the doctor said the patch was “probably not cancer.” The pathologists were just “covering themselves” by saying they could not it rule out. She was incensed at having been put through unnecessary distress.

As any medical practitioner knows, uttering the words “severe,” “invasive” and “carcinoma” to a patient in remission cannot but escalate terror. Why couldn’t the nurse or the doctor find the ways and means immediately — in a brief phone call or email — to put those fears in perspective?

Given the paperwork, the patient load, and the long hours of medical professionals, we all understand the constraints within which physicians and nurses operate. Surely neither the nurse nor the doctor was willfully unfeeling. However, their tardy and cryptic announcements resulted in callous care. Whether a medical judgment is optimistic or pessimistic, its inept conveyance can upset or infuriate already anxious patients.

Some of the women in my support group were alone, groggy from anesthesia, and in pain when a poorly articulated diagnosis of gynecological cancer unhinged them. After a debulking operation, Julia recalls, a resident involved in the surgery stood near the door, avoided eye contact, and declared, “Stage 3 — we’re not talking cure now, we’re talking treatment.” When I heard similar words, I was in a crowded emergency room with only a privacy curtain between me and other patients.

Julia, a practicing therapist, believes that “these events are so traumatic that medical professionals need to look out for our emotional welfare . . . to reduce the possibility of PTSD. The person in a life-threatening emergency needs specialized mental health care.” Upon hearing a diagnosis of cancer, patients can plummet into the depressing supposition that their life is effectively over and their rapidly impending death will be painful.

Another very private member of our group — I will use her initials, I.M. — suffered through a delay between intimations of bad news and a diagnosis. After a CT scan, a hospital technician warned I.M. that she might have cancer, but he did not have the authority to discuss the matter with her. She would have to wait until her gynecologist could meet with her — the longest and most harrowing period in her life, she said with a shiver.

None of us were eased by communication strategies that have evolved since 2000 when Dr. Walter F. Baile and his associates published their paradigm for delivering bad news in The Oncologist. This article advocates a program called Spikes: S stands for finding the appropriate setting; P for gauging the perceptions of the patient; I for obtaining the patient’s invitation to hear bad news; K for providing the knowledge that the patient needs to receive; E for dealing with the emotional reactions of the patient with empathy; S for concluding with a needed summary.

Despite such a thoughtful template, miscommunication does not taint only diagnosis, as I.M. realized when she went on to confide about a more recent exchange. At her last meeting with her oncologist, they had discussed the sorry fact that the current cycle of chemotherapy had not inhibited tumor growth. The doctor gave her three choices: returning to the drug used in her first cycle, trying a clinical trial or “opting to do nothing.” Alarmed and shaken by this last proposal, she felt as if he were throwing up his hands or she had somehow been fired.

Because the members of our group had visited a hospice facility, we could assure her that she need never choose “opting to do nothing.” Even when patients decide that the struggle to combat cancer will be ineffective, they can gain access to palliative specialists who will alleviate pain and anxiety while rescuing them from pointlessly aggressive, time-consuming, expensive and debilitating treatments.

It cannot be easy for oncologists to deliver bad news so frequently, but it must be worse for them when they deliver bad news badly. The manners of patients erode as we become maddened by confusion and dread. Injurious words should never add insult to the injuries medical professionals witness and patients suffer daily.

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Diet High in Saturated Fats May Be Linked to Dense Breasts

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Teenage girls who eat a diet high in saturated fat are at increased risk of developing dense breasts, a study concludes. Dense breasts contain more fibrous and connective tissue than normal and are a risk factor for breast cancer.

Researchers studied 177 girls, ages 10 to 18 at the start of the study, who periodically filled out dietary recall questionnaires. The scientists measured breast density by M.R.I. when the members of the group were 25 to 29 years old. The study is in Cancer Epidemiology, Biomarkers & Prevention.

Average dense breast volume in those in the lowest quarter for saturated fat intake was 16.4 percent, compared with 21.5 percent for those in the highest quarter.

Consumption of unsaturated fats had the opposite associations — the higher the consumption of unsaturated fats, the lower the average dense breast volume.

“We looked only at the associations of breast density with fat intake,” said the senior author, Joanne F. Dorgan, an epidemiologist at the University of Maryland School of Medicine. “Whether this will then be related to an increase in breast cancer later in life, we don’t know. But breast density itself is associated with increased risk.”

The authors controlled for many health factors, but they acknowledge that unknown variables could have affected their results.

“This is all observational data,” Dr. Dorgan said, “and needs to be confirmed before we can make health recommendations.”

Exercise Tied to Lower Risk for 13 Types of Cancer

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Credit Getty Images

Anyone who still needs motivation to move more may find it in a new study showing that, in addition to its other health benefits, exercise appears to substantially reduce the risk of developing 13 different varieties of cancer. That is far more types than scientists previously thought might be impacted by exercise. The comprehensive study also suggests that the potential cancer-fighting benefits of exercise seem to hold true even if someone is overweight.

The idea that exercise might change someone’s susceptibility to cancer is, of course, not new. Many studies have found that people who are physically active, either through exercise or while on the job, tend to be less likely to develop certain types of cancer than people who are sedentary.

But those studies primarily looked at associations between exercise and a few common malignancies, such as breast cancer in women, and colon and lung cancers in both women and men.

Whether physical activity, and more precisely, regular exercise, would also lower our risk for other cancers has remained an open question.

So for the new study, which was published this week in JAMA Internal Medicine, scientists with the division of cancer epidemiology and genetics at the National Cancer Institute, as well as Harvard Medical School, and a number of other institutions around the world turned to a large trove of epidemiological health studies conducted in the United States or Europe.

In these earlier studies, researchers directly measured volunteers’ body mass and other health markers and also asked about their diets and exercise habits. The researchers then tracked the participants for a decade or more, noting disease diagnoses or, in some instances, deaths.

Such studies help to establish links between lifestyles and disease risk. But the number of people involved must be hefty if the associations are to be persuasive.

To gain sufficient numbers now, the Cancer Institute researchers gathered data from 12 large-scale studies that, pooled together, involved 1.44 million men and women.

The researchers focused on specific information for each of those 1.44 million people about whether they exercised, and how vigorously and how often. They also zeroed in on whether and when, after each study’s start, the participant had been diagnosed with any type of cancer.

Then, using elaborate statistical methods, they computed the role that exercise, and in particular, moderate or vigorous exercise such as brisk walking or jogging, seemed to be playing in people’s risks for cancer.

It turned out to be considerable. For most cancers, people who reported exercising moderately, even if the time that they spent exercising was slight, had significantly less risk of developing 13 different types of cancer than people who were sedentary.

The researchers found a reduced risk of breast, lung and colon cancers, which had been reported in earlier research. But they also found a lower risk of tumors in the liver, esophagus, kidney, stomach, endometrium, blood, bone marrow, head and neck, rectum and bladder.

And the reductions in risk for any of these 13 cancers rose steeply as people exercised more. When the researchers compared the top 10 percent of exercisers, meaning those who spent the most time each week engaging in moderate or vigorous workouts, to the 10 percent who were the least active, the exercisers were as much as 20 percent less likely to develop most of the cancers in the study.

On the other hand, they found an increased risk of two types of malignancies — melanoma and slow-growing prostate tumors — among people who exercised the most. Those findings can most likely be explained, in large part, by certain characteristics of active people, said Steven Moore, an investigator at the National Cancer Institute who led the study.

“People who exercise generally go in for more checkups” than sedentary people, he said, resulting in more screenings for conditions such as so-called indolent prostate cancers. (There was no discernible association, positive or negative, between exercise and aggressive prostate tumors.) “They also often exercise outside,” he continued, “and are more prone to sunburns” than people who rarely work out, potentially contributing to a greater risk for melanoma.

Encouragingly, the associations between exercise and reduced cancer risks held true even when the researchers factored in body mass. People who were overweight or obese but exercised had a much lower risk of developing most cancers than overweight people who did not move much.

Just how physical activity may be undercutting the risk for so many disparate types of cancers is not yet fully understood, Dr. Moore said, although he and his colleagues suspect that changes in exercisers’ hormone levels, degree of inflammation, digestion and overall energy balance most likely contribute.

Bear in mind, though, that this was an observational study, so it cannot directly prove that exercise reduces cancer risks, only that there is an association between more exercise and less disease. It also relied on participants’ memories of exercise, which can be unreliable.

But even with those limitations, the findings sturdily suggest that exercise may help to reduce the risk of many types of cancer, “and it has few side effects and doesn’t cost much,” said Dr. Moore, who runs almost every day.

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Pricing a Year of Life

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Credit Stuart Bradford

A radio producer investigating cancer costs once asked me, “What is another year of your life worth?” During my flummoxed silence, she informed me that experts mention the figure $50,000. Can patients like me — older people with recurrent disease — estimate the expense of a future year of cancer treatment to decide whether it’s worth it?

I began to understand the origin of the number when my nephew sent me an article in The New England Journal of Medicine, “Updating Cost Effectiveness.” Its authors explain: “For more than two decades, the ratio of $50,000 per quality-adjusted life-year (QALY) gained by using a given health care intervention has played an important if enigmatic role in health policy circles as a benchmark for the value of care.”

Used by economists, the QALY calculates quality and quantity of life to judge the monetary worth of medical inventions. Since my cancer was diagnosed in 2008, I have wondered how to make this reckoning within our for-profit health system. So with misgivings I set aside the plight of the uninsured and began considering not generic measurements of cost-effectiveness but how much I — as an insured patient — had paid for one year of cancer treatment.

It turned out to be impossible. Never — during four years of operations, radiological interventions, and cycles of chemotherapy — had I been informed beforehand about the cost of any consultation, procedure, equipment or drug. Nor did I understand what would be covered by insurers and (when I got older) Medicare or what would have to be paid out-of-pocket.

After the consultation or procedure, I received impenetrable statements from providers, stamped in large letters, “This Is Not a Bill.” They were followed by cryptic printouts from the hospital that clearly were bills, although next to many entries the word “pending” appeared.

Now, given my erratic bookkeeping, I cannot calculate what I ended up spending.

The camouflaging of cancer costs poses an unprecedented problem. There is no analogue in life — including the approach of death — in which I remain so ignorant of expenditures. Although I have ascertained what cremation, a grave site, and a marker cost, I have no idea what the costs of my treatments amounted to.

During those same years, I could not predict treatment complications that required subsequent procedures and outlays. When an operation necessitated another, the bills multiplied. Humbled by my own unknowingness, I took to heart Kierkegaard’s insight that we must live life forward, even though it can only be understood backward.

Obviously, I was in neither the physical nor the psychological state needed to adjudicate the paperwork. Dazed, frightened and depleted by the alarming threat to my mortality and the debilitation of treatment, I demoted the bills to a nasty irritant. An excellent job with good benefits buffeted me from facing what less lucky people confront: a financial crisis triggered by cancer treatment.

Stints in the hospital enlighten many patients about prohibitive co-pays and costs above coverage ceilings for the large sums charged by surgeons, anesthesiologists, radiologists and oncologists; for operating and hospital rooms, tests and scans, medicine and equipment as well as a box of tissues. The title of an article in The Oncologist about the financial distress of insured patients speaks volumes: “The Financial Toxicity of Cancer Treatments.”

Add to these expenditures exorbitant out-of-network fees, the loss of wages resulting from treatment-related appointments and disabilities, the cost of travel to and from the hospital, and the need to hire child care or housekeeping or elder care assistance. All these combined payments can be staggering.

As for the new cancer drugs, pharmaceutical companies apparently charge whatever the market will bear. A new type of medication, a PARP inhibitor similar to the one I receive in a clinical trial, has been approved by the Food and Drug Administration for recurrent ovarian cancer patients. Lynparza, produced by AstraZeneca, costs about $11,000 a month. That would come to $132,000 a year. After a media flap a few years ago over Zaltrap — doctors at Memorial Sloan Kettering boycotted it, saying it was no more effective than a less expensive drug — its producers cut the price in half.

No wonder, then, that people with cancer are more likely to go bankrupt than other Americans. The authors of The New England Journal of Medicine article conclude that the QALY has been underestimated. For a single threshold now, they would suggest either $100,000 or $150,000 per QALY.

Whatever the estimate, a crude ratio of cost effectiveness, like the QALY, seems presumptuous. How can qualitative factors (nausea, fatigue) be converted into quantitative numbers? How can general calculations account for individual variations (my preference for fatigue over nausea) or overriding personal beliefs and principles about what constitutes a valuable existence?

Yet it would help patients like me to participate in sober public conversations on these issues since many of us are aware that individual decisions about medical costs sidestep vexing social questions of why they are inflated and how they will tax our children and grandchildren. At the least, more transparent communications would alleviate widespread fears that living life forward could trip us backward into penury.

For the past three years, the clinical trial in which I participate has covered most cancer-related expenses. When the drug in my trial fails, I want to have some say about whether another year of my life is worth the cost of treatment. But it will take a change in the current way of doing medical business to make that possible.

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Ovary Removal Tied to Colon Cancer Risk

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Removal of the ovaries — a procedure known as oophorectomy — may increase the risk for colorectal cancer, a new study concludes.

In some cases, such as cancer, the ovaries must be removed. They are commonly also removed electively during surgery for hysterectomy to avoid the risk of ovarian cancer.

The study, in the British Journal of Surgery, included 195,973 women in a Swedish health registry who had undergone oophorectomy either prophylactically or for benign conditions between 1965 and 2011. After an average follow-up of 18 years, 3,150 had been diagnosed with colorectal cancer. That rate — 1.6 percent — is about 30 percent higher than the rate in the general population.

The scientists found that the rate of colorectal cancer was lower in younger women and highest in the first four years after oophorectomy.

Oophorectomy has other risks too, said the study’s lead author, Dr. Josefin Segelman, a surgeon at the Karolinska Institute in Stockholm. Androgen levels drop after the operation, and this is tied to osteoporosis, decreased sexual desire and other problems.

Still, she said, “If you find abnormal ovaries at the time of surgery, they should be removed. But prophylactic oophorectomy should not be performed where there is no clear risk of ovarian cancer.”

Notifications About Dense Breasts Can Be Hard to Interpret

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Dr. Dorothy Lam explains the results of a mammogram to a patient at Swedish Covenant Hospital in Chicago in 2015.

Dr. Dorothy Lam explains the results of a mammogram to a patient at Swedish Covenant Hospital in Chicago in 2015.Credit Taylor Glascock for The New York Times

About 40 percent of women who have mammograms are found to have dense breast tissue, a normal finding that can make it harder to detect cancer. But many of these women receive letters in the mail about the finding that can be hard to decipher, a new study found.

“Twenty percent of the population only reads at an eighth-grade level, and many more don’t read at a much higher level than that,” said Nancy R. Kressin, one of the study’s authors who is a professor at Boston University School of Medicine and a senior researcher at the Veterans Affairs Boston Healthcare System.

“For many women, these notifications are not going to be easy to read” and might even be alarming, she said. “We’ve talked to some women who received these letters, and their reaction was ‘Oh my God, I have cancer.’ ”

Dense breast tissue means that a woman’s breasts have more connective and fibrous tissue than usual. Dense breasts both increase the risk of breast cancer and make it less likely that tumors will be seen on a mammogram, but having dense breasts does not mean a woman has cancer.

The study, published as a letter in JAMA, analyzed the notification letters sent out in 23 states and found that many use such complex language that patients need a college degree to understand them. The letters sent out in New Jersey and Connecticut were written at a postgraduate degree level, the report found. Yet only 12 percent of American adults have proficient health literacy, according to the National Assessment of Adult Literacy.

For years women were not routinely informed of the finding. Now, 26 states have laws on the books that require mammography testing facilities to tell women who have the breast cancer imaging scans if they have dense breast tissue as part of their results, according to Nancy Cappello, who founded Are You Dense?, a nonprofit organization that educates the public about the risks of dense breast tissue.

She acknowledged that the notification letters, which are crafted during the legislative process and are different in every state, may be complex but said they are meant to trigger a discussion between the patient and her doctor.

The notifications were “never intended to replace conversations, but to enhance them,” said Dr. Cappello, who was given a diagnosis of advanced breast cancer in early 2004, weeks after receiving a “normal” result from a mammogram. After her diagnosis, she learned that she had dense breast tissue. But although she had been having mammograms every year for over a decade, she was never informed she had dense breasts and that the scans were less reliable as a result.

She called the study “shortsighted” because it evaluated several sentences of a letter in isolation, “without assessing the readability of the entire report.”

“Why don’t the authors question the readability levels of all medical reporting results that patients receive?” Dr. Cappello asked.

The new analysis in JAMA measured the readability and understandability of notification letters and found that most were written at a level higher than the recommended seventh- or eighth-grade readability level, and many were at a high school or college readability level.

All of the letters informed women that dense breasts can mask cancer on mammography. Most also informed women that dense breasts are associated with an increased cancer risk and mentioned the option of getting screened by another method, suggesting the woman talk to her doctor.

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When ‘Having It All’ Includes Having Cancer

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Credit

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Mary Elizabeth Williams’s latest book, “A Series of Catastrophes and Miracles,” starts with the spoiler: This is a cancer memoir with a happy ending, where one of those post-scan phone calls comes, at last, with good news.

But the “miracles” of the book’s title go beyond that phone call, just as the catastrophes come on both a grand and small scale. At the core of the book is the story of learning to live a mundane daily life while steeped in the knowledge that that it may not go on much longer. It’s a story of being a family in crisis, and how that is exactly like being a family the rest of time, even when it feels very different.

“You can’t stop living your life,” Ms. Williams said in an interview. “You can’t stop taking kids to school.”

Ms. Williams’s daughters were 6 and 10 when her cancer was diagnosed, and they are 12 and 16 now. “What are you going to do, sit around all day and contemplate being dead?” she asked.

Every parent will relate to the daily parenting demands Ms. Williams must juggle, even as she is mulling life and death decisions. When the doctor tries to schedule her first surgery, Ms. Williams is hesitant — that’s the day her daughters come home from camp.

And she has to be at work on Monday. They have basketball tickets.

“You’re going to miss your basketball game,” the doctor tells her kindly. but that doesn’t mean she won’t have to decide whether the children go without her, or what’s for dinner that night.

“A Series of Catastrophes and Miracles” chronicles the way ordinary life goes on as the cancer recurs, steadily progressing until she’s invited to join an immunotherapy trial that’s successful for her, but also brings about the unexpected challenges that come with winning a treatment lottery that so many others lose.

It’s clear what the marquee miracle and catastrophe are, but in the book’s smaller moments, the good and the bad blend. One old friend disappears at the news of her cancer. But she tells the story of new friends who send their children to her door bearing a cake. It has a distinctly profane anti-cancer message spelled out in candy.

“Our moms made you something,” the 6-year-old explains. “It has a bad word on it.”

“Sometimes in life you need a bad word,” Ms. Williams responds.

Family life, treatment plans and biopsies become inseparable. First, a birthday party, next, a call announcing the return of the cancer. She walks in the door with that news, but her daughters have news of their own: They have lice.

It all comes together. “I never imagined that having it all would include having cancer,” she writes.

What’s also inseparable from her life as a cancer patient, even one whose treatment is ultimately successful, is the other side — the people in the cancer support group who do not get the phone call with the good news, the father-in-law whose remission does not last. Ms. Williams survives her cancer; others whose stories she tells alongside hers do not, and as best as she can in her role as the one who lives to tell the story, she balances life and death, and their different catastrophes and miracles.

“I want it to be really, really clear that this is not some happy, peppy, one woman’s triumph story,” she said. She was one success from the early trials of immunotherapy, a promising treatment that’s been widely heralded. But progress on the treatment has been slow, and the approach isn’t always successful.

“Immunotherapy is drastically changing the odds for a lot of people, and that’s amazing and exciting and I’m so happy to be a part of that story,” Ms. Williams said. “But all of us are still going to die, and many of us are still going to die of cancer. I want to keep my narrative in context.”

A Bittersweet Passover: Cancer, Remission and Change

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Credit Camila Engman

Despite good news about my cancer treatment, it has been a hard winter, so I am looking forward to Passover. By retelling the story of the Jewish people’s escape from slavery in Egypt, the Haggadah — the text recited at the annual Seder — celebrates deliverance and springtime renewal. How would its rituals and prayers resonate for me this year, when cancer concerns were unexpectedly supplanted by other tribulations?

Alesha, the research nurse of my clinical trial, informed me in February that she and my oncologist were requesting an amendment of the Phase 1 study rules on my behalf. Since August 2012, I have driven up to Indianapolis every month for tests that have charted my vital signs and the CA-125 blood marker of ovarian cancer. The signs remained good, the marker stayed low, and each month Alesha passed over another bag of the experimental pills. Soon the leash tying me to the hospital will loosen. Maybe I will get two or even three months of pills all at once.

My jubilation was tempered by the difficult circumstances with which I currently contend. Over the past year, my husband, Don, has suffered a series of debilitating accidents, surgeries and infections. Just when I was priding myself on caring for Don as devotedly as he had cared for me, I slipped and fractured my pelvis. Once energetic seniors, Don and I now hobble around on canes, a geriatric duo. Grounded, we realize that we must move out of a country house we love but cannot maintain.

As I turn over the pages of the Haggadah in preparation for the last of some 22 Passovers we have commemorated here, I find myself startled by its images of the inextricable collocation of joy and sorrow. On the Seder plate, parsley, celery and scallions represent nature’s regeneration; however, they are dipped into salt water, signifying the tears of oppression. We read that the lettuce on the plate starts out sweet, but it becomes bitter if left in the ground too long, just as people do in bondage.

The Hillel sandwich best exemplifies the discord of elation and distress. It consists of matzo eaten with charoset (often a mixture of apples, honey, cinnamon and wine) and maror (horseradish). The horseradish, if strong enough, can elicit yowls from guests simultaneously savoring the honeyed fruit which, oddly, represents the mortar used in making bricks for the pharaohs.

Dissonance resounds throughout the Seder story. The sustaining matzo we are enjoined to offer all who are hungry and needy is the bread of affliction, baked hastily by migrants fleeing for their lives. Although the story says that the Angel of Death passed over the houses of Jews, the first-born babies of the Egyptians died. Liberation from slavery occurred centuries ago, yet the Haggadah states that in every generation, all participants should regard themselves as if they have personally come out of slavery. We are each and every one of us strangers in a strange land, but the Jews arrived at their promised destination.

The state of cancer survivorship has everything to do with this weird sort of discordance, or so it seems to me. Life-saving protocols produce injurious side effects, impairments or mutilations. The relief of remission is shadowed by fear of recurrence. While I profit from a targeted drug, two members of my support group report the failure of their chemotherapies. Those in the group who exult at being cancer-free mourn the three participants whose lives have been cut short by the disease.

According to the essayist David Rakoff, living with cancer may also blur “the borders between the micro and the macro,” leading people to conflate private with public woes: “The world seems lethally friable.” As the political becomes personal, the incivility and violence of presidential contests in this country scare me. Then there are the bombings overseas. That politicians recurrently refer to terrorist cells as cancers rightly suggests that cancer terrorizes its hosts, but the victims of terrorism have no recourse to treatments.

This year, the narrative of the Seder will remind me that we all remain in captivity while millions of refugees suffer in exile and populations across the globe struggle with anti-Semitism, racism and sexual slavery. To symbolize the need for a renewal of faith in forces that can right these grievous wrongs, after the meal we will open the door for the stranger and sing a hymn to the prophet Elijah, who heralds harmony and redemption.

Considering cancer research, I rejoice that the clinical trial in which I participate means a little bit of redemption for women who test positive for the BRCA1 or BRCA2 mutations. Drugs called PARP inhibitors, like the one I take, will extend the progression-free survival — the length of time during and after treatment of a disease that does not worsen — of women whose ovarian cancer was caused by these genetic mutations. But I grieve over the majority of ovarian cancer patients besieged by a miserable prognosis.

For me, living longer means getting old — which, my mother always told me, is not for sissies. As I welcome Elijah this April, I will be hoping that Don and I garner the strength to open another door next year — not in our spacious country home, rich in the memories of Seders past, but in the promised land of a one-story, in-town apartment we can manage to negotiate. It is a bittersweet prospect for which Passover will prepare us.

Susan Gubar is the author of “Reading and Writing Cancer: How Words Heal,” which will be published May 17.

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Wondering What Caused the Cancer

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Credit Stuart Bradford

“But what caused it?” my patient asked, referring to the failure of her bone marrow to make the blood cells the rest of her organs craved. She was profoundly anemic and seemed to tire from even asking the question.

Dozens of my patients have asked the same thing. Even a dozen dozen.

I think the question reflects a human desire to revisit events that occurred over a lifetime, and speculate whether a change in course could have avoided an untoward outcome.

In truth, though, except in very rare cases, it is almost impossible to say that a specific environmental exposure triggered a given person’s cancer. The majority of cancers arise randomly, as if thumbing their nose at our collective need to find a cause.

But that doesn’t stop me from trying, during the part of the clinic visit when it’s my turn to ask the questions. And sometimes, I even convince myself that I have uncovered that nugget of truth that explains disease.

One patient, a man in his 70s, told me he served in the military.

“Which branch?” I inquired.

“Navy,” he said proudly.

“Did you see any action?” I asked.

He glanced at his wife briefly, as if checking in with her that it was all right to tell this story she had probably heard hundreds of times before. She nodded slightly, giving her permission.

“I was on one of the ships that was active during the Cuban Missile Crisis,” he said.

“Wow!” I said, incredulous. “What was that like?”

“Hot,” he answered, laughing. “And humid. It was like a living hell.”

I shook my head in disbelief, not saying anything, encouraging him to go on.

“Yeah, in fact, the only way my buddy and I could escape the heat was at night. Instead of lying in our bunks, we put a mattress on the ground in the hull, in between these two metal cases. The metal was cool at night. They kept the nuclear weapons in those cases.”

A nuclear arsenal a foot from his bone marrow. Perhaps, more than 50 years ago, that was the culprit. Though I’ll never really know for sure.

Another patient, a few years ago, told me she used to live in Nevada.

“Any exposures to chemicals or radiation you’re aware of?” I asked her, as I ask all of my patients.

“Not that I can think of,” she answered, and then chewed on her lip as she thought about it. I stayed quiet.

“Well,” she started chuckling to herself. “I used to live in Nevada in the 1950s. And I remember a couple of times that fliers would be posted on the telephone poles inviting the entire town outside to watch the huge mushroom cloud that would follow the nuclear bomb testing nearby. So we’d all stand outside and watch, and then the hot winds from the explosion would pass through the town, almost knocking us over.”

I pictured the radioactive breeze, encircling her impressionable bone marrow stem cells when she was just a girl.

I’ve had patients who describe working in shoe stores where they would take an X-ray of a customer’s foot as a gimmick to measure them for the perfect-fitting shoe, without a lead vest for protection. Or of being employed by a tire manufacturer and soaking, day in and day out, in a vat of benzene, a chemical we now know to be a potent carcinogen. Even my uncle once revealed to me that the acne on his back was treated with radiation in the late 1940s. He died of leukemia a few years ago.

Is it possible that these exposures, which occurred decades earlier, could have initiated the cancer that reared its head in my septuagenarians and octogenarians?

Investigators at the Atomic Bomb Disease Institute, established in 1962 in Nagasaki, Japan, have followed survivors of the bomb we dropped in 1945 to study late effects of radiation on the human body. They even have information on precisely where each person was, in relation to the bomb’s epicenter, to measure how much radiation that person was exposed to. In one study, they examined the incidence of myelodysplastic syndrome, a type of bone marrow cancer, in people given the diagnosis between 1985 and 2004. Those who were closest to the explosion, who received higher doses of radiation and who were younger when the bombs were dropped were at highest risk of developing the cancer. The median age at the time of exposure to radiation was 9, and at the time of the myelodysplastic syndrome diagnosis was 71.

It isn’t entirely crazy, then, to think that toxic events that occurred when my patients were young could have induced damage to their bone marrow that remained quiescent until they were well past retirement age.

Or maybe I’m being just as eager as my patients in grasping for any etiology for their cancer other than “dumb luck.” As if identifying a cause would enable me somehow to control it better.

Dr. Mikkael Sekeres is director of the leukemia program at the Cleveland Clinic. Follow him on Twitter @MikkaelSekeres.

Social Support of Marriage May Improve Cancer Survival

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Credit Stuart Bradford

Several studies have found that being married improves survival in cancer patients. Now a new study suggests that it may largely be the social and emotional support of marriage, rather than any economic advantages, that produces the effect.

Using the California cancer registry, the scientists identified 783,167 cancer patients, and 386,607 deaths. They used health insurance data and neighborhood socioeconomic levels to assess economic resources.

The risk of death among unmarried men was 27 percent higher, and among unmarried women 19 percent higher, than among the married. But even after adjusting for socioeconomic factors, unmarried men still had a 22 percent higher mortality risk and unmarried women a 15 percent higher risk than the married.

“Across different racial and ethnic groups we were able to analyze whether economic resources played a role,” said the lead author, Scarlett Lin Gomez, a research scientist at the Cancer Prevention Institute in Fremont, Calif. “In fact, they play a very minimal role. It points more to social support as the defining factor.”

The study, in Cancer, found the marital advantage held for all types of cancer, with some variations. For example, compared with married men, mortality was 33 percent higher for unmarried men with prostate cancer, but only 12 percent higher for men with stomach cancer. In women, uterine, breast and non-Hodgkin’s lymphoma showed the greatest differences in mortality rates between the married and unmarried.

A Teachable Moment on the Need for Colon Cancer Screening

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Credit Paul Rogers

As an alumna of Cornell who had been thrilled by the selection of the university’s first female president, Elizabeth Garrett, last fall, I was deeply pained to learn of her untimely deathfrom colon cancer at age 52 last month. May it be a teachable moment that could save many from a disease that will be diagnosed in an estimated 134,000 people and claim 49,000 lives in the United States this year.

Although colorectal cancer is the third most common cancer, it is the second leading cause of cancer deaths, after lung cancer. Detection guidelines call for screening to begin at 50 for most people, but colon cancer is now increasing in people under 50, and everyone should be aware of the risks and early warning signs.

While the circumstances that led to President Garrett’s diagnosis have not been publicly revealed, I do know that colon cancer can nearly always be prevented through detection and removal of its precursor lesions, commonly called adenomas or adenomatous polyps. I also know that it can most often be cured if one of several screening tests leads to early detection, before the cancer has spread beyond its point of origin.

Currently, a joint effort of the American Cancer Society and the Centers for Disease Control and Prevention is trying to make these screening methods available to the 40 percent of Americans who have yet to be tested. The goal of this National Colorectal Cancer Roundtable, as it is called, is to get 80 percent of Americans screened for colorectal cancer by 2018.

More than 690 organizations have joined the effort to remove barriers to screening that can include cost, transportation and resistance to what most people view as an unpleasant experience. Colonoscopy, the gold standard for detecting cancer and removing precancerous polyps, has the dubious distinction of being the least pleasant of all the available screening tests. But the other options, which involve collecting a sample of one’s stool for detection of possible cancer, are no one’s favorites either.

I’ve done both — in fact, I’ve had three colonoscopies, at ages 50, 60 and 70. The test itself is done under mild sedation, and I’ve never felt any pain, only slight pressure, while being scoped.

It’s the preparation for a colonoscopy — the need to clean out the contents of the colon to make its lining clearly visible — that I and many others find most taxing. The prep is not a walk in the park, but then again, neither is cancer.

The fact remains that being screened for colon cancer can save your life. Since 1975, death rates from colorectal cancer have dropped significantly and screening is responsible for slightly more than half that decline, the cancer society reports. The decline in deaths has accelerated in the last decade, dropping nearly 3 percent a year. This is primarily attributed to more people getting colonoscopies at appropriate ages.

For most people without a family history or symptoms, colonoscopy is generally recommended starting at age 50, then every 10 years if nothing untoward is found.

One adult in 20 in this country will develop colon cancer sooner or later, 85 percent of them after age 50. Among the remaining 15 percent whose cancers develop before 50, many have a family history of cancer that suggests it may be wise to start screening at 40. (There remain a heart-rending few in whom this cancer develops at an especially early age, say, at age 20 or 30, in people who had no indication that they needed to be screened.)

In the March 17 issue of The New England Journal of Medicine, Dr. Williamson B. Strum, a gastroenterologist at the Scripps Clinic Medical Group in La Jolla, Calif., points out between 20 percent and 50 percent of the American population has adenomas of the colon, the benign growths from which most colorectal cancers arise.

Screening with a traditional colonoscopy can find these growths and, at the same time, the doctor can remove them and head off a possible cancer.

A newer technique called computed tomographic colonography, or virtual colonoscopy, uses a CT scan instead of a scope to pick up these lesions. It, too, requires cleaning out the colon before the scan. And if polyps are detected, a traditional colonoscopy is needed to remove them.

The other tests that check the stool for signs of cancer are less invasive, safer and easier to do, but they are also less definitive and less likely to detect signs of hazardous polyps before a cancer arises in them. They involve stool samples enclosed in kits that are sent to a lab for analysis. If the test result is positive, a follow-up colonoscopy is then needed to find the reason.

One, called the guaiac-based fecal occult blood test, is based on a chemical reaction that can find hidden blood in the stool. Before doing the test, certain foods and drugs must be avoided. If blood is found, it could come from a source other than a colon cancer, like ulcers, hemorrhoids or diverticulitis, so a colonoscopy would then be needed.

Another option, the fecal immunological test, involves fewer pretest conditions but may require collecting stool samples from more than one bowel movement. A third, the stool DNA test, looks for telltale genetic material (mutations from a cancer or precancerous polyp) in the stool. The test currently available, Cologuard, also checks for blood in the stool and may prove to be the most effective of these noninvasive tests, Dr. Strum said.

Traditional colonoscopy is unequivocally best at finding cancer and precancer, but the best screening test is one that you will do as often as is recommended. So the message here is doing something is always better than doing nothing to avoid death from colon cancer.

Equally important is attending to known risk factors — and preventives — for colon cancer. Age is one: The prevalence of potentially dangerous polyps rises sharply after age 50, studies of tens of thousands of people have shown. However, colorectal cancer is now rising among people in their 40s, prompting Dr. Strum to suggest a thorough evaluation of any suspicious symptoms among people younger than 50.

Other known risk factors are smoking, excessive alcohol consumption, obesity and a diet rich in red meat. Protective factors include eating lots of fruits and vegetables, getting regular physical exercise, using menopausal hormone-replacement therapy, and taking a nonsteroidal anti-inflammatory drug (NSAID) at least twice a week for a year or longer. Drinking coffee, too, has been linked to a reduced risk — 54 percent lower among those who consume two-and-a-half cups a day or more.

Most promising, Dr. Strum wrote, is daily use of a baby aspirin (81 milligrams) for 10 or more years, which also helps protect against cardiovascular disease. However, the benefit of any NSAID must be balanced against an increased risk of gastrointestinal bleeding, he cautioned.

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No Regrets After Double Mastectomy, but Questions Remain

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Vivien Foldes is one of a growing number of women with breast cancer who are having a double mastectomy.

Vivien Foldes is one of a growing number of women with breast cancer who are having a double mastectomy.Credit Uli Seit for The New York Times

Vivien Foldes says she does not regret having her breasts removed five years ago after she was found to have an early-stage cancer.

But there are things Ms. Foldes, a 58-year-old accountant from Woodmere, N.Y., wishes she had known when she chose a double mastectomy, like the fact that the process of reconstruction would drag on for five months and leave her forever unable to sleep on her stomach. Or that it would leave her with no sensation “from the front all the way to the back in the entire bra area,” she said. “Nothing. Zero. Zip.”

Ms. Foldes says there are days that she asks herself, “Should I have done it?” But, she said, her mother had two types of cancer, and she wanted to be proactive: “I didn’t want to be waiting for the other shoe to drop.”

Ms. Foldes is one of a growing number of women opting to have both breasts removed after a diagnosis of breast cancer, even though doctors say the operation does not improve the chances of survival. Now a new study, based on surveys of thousands of women, suggests women who have double mastectomies also do not benefit from a big improvement in quality of life, either. The study was published online in the Journal of Clinical Oncology earlier this month

“Quite a few studies have shown that in patients who don’t have a genetic mutation that increases breast cancer risk, the benefit from removing the healthy breast — purely from a cancer perspective — is zero to tiny at best,” said Dr. E. Shelley Hwang, the chief of breast surgery at Duke Cancer Institute, who led the study.

What she wanted to find out was, “If it doesn’t extend longevity, does it at least improve their quality of life?”

Dr. Hwang concluded that the benefits were marginal. “I don’t want to sound terribly negative; some women had very good results and are happy they made the decision,” she said. But, she added, “You’re not better off, you’re not happier, you don’t feel better about yourself sexually by having the healthy breast removed.”

The number of women opting to remove the cancerous breast and the healthy breast – a procedure known as contralateral prophylactic mastectomy or C.P.M. — has surged in recent years. In 2011, about 11 percent of women who were having a mastectomy for cancer chose C.P.M., compared with less than 2 percent in 1998.

Many breast cancer doctors are concerned by the trend, which they expect to increase. Women with early-stage breast cancer have the same odds of survival whether they have a lumpectomy or a mastectomy, and research suggests the risk of a cancer in the contralateral breast is low. But patients say they want to eliminate even the most negligible risk of a recurrence or cancer in their healthy breast.

“Nine times out of 10, the women are the ones who decide,” Dr. Hwang said. “They have cancer, they never want to deal with it again, they just want both breasts off, and they can’t rest until the other breast is done.”

But Dr. Hwang says she has seen the downside of double mastectomies. Surgical complications can occur during reconstruction, which is often a protracted process, and many women have unrealistic expectations about what the new breasts will look and feel like after reconstruction.

Surgery usually leaves the patient with no sensation in the breast area, and the extensive operations can also result in chronic pain.

“One patient said she couldn’t feel hugs anymore when she snuggled up to her kids,” Dr. Hwang said. “That really affected me.”

Many women are influenced by family history. Valerie Garguilo, 54, of Bellport, N.Y., watched her sister die in 2008 after a seven-year bout with breast cancer that was treated with a lumpectomy followed by two recurrences and two more lumpectomies, and then metastasis to her bones and brain. When Ms. Garguilo was found to have a stage-zero cancer herself four years ago, she opted for a double mastectomy, even though she tested negative for harmful genetic mutations.

“I wanted to do whatever I could to cut my chances of a recurrence; I wasn’t going to keep going in for lumpectomies,” she said.

Some women say they do not believe studies that report no difference in survival rates. “I feel like a lumpectomy can’t possibly get everything out,” said Maria Sawicki, 67, of Massapequa, N.Y., who needed a mastectomy on her affected breast but removed her other breast as well. “The littlest thing can be missed.”

For the study, 3,977 volunteers who had had mastectomies — including 1,598 who had had both breasts removed — completed an extensive survey, called BREAST-Q. The survey measured physical well-being, which asks about neck, arm and upper back pain, mobility and the ability to lift the arms; psychosocial well-being, which focuses on body image and confidence in social settings; sexual well-being, including sexual confidence and feelings of attractiveness and comfort level during sex; and breast satisfaction. The last question asks whether bras and clothes fit well, whether the breasts are symmetrical and whether one is comfortable with one’s appearance, clothed and unclothed.

After adjusting for differences between the groups, the researchers found that women who had had double mastectomies had slightly higher scores on psychosocial well-being and breast satisfaction — the differences were only about a point higher on a scale of 100. But scores on the other domains of physical and sexual well-being did not differ from those of women who did not have double mastectomies.

The most important factor in a woman’s overall well-being, the new study found, was whether she had had reconstructive surgery. Most women who had had such surgery reported substantially higher quality of life scores, whether they had single or double mastectomies.

“That’s a much more powerful intervention to improve quality of life than a contralateral prophylactic mastectomy,” Dr. Hwang said.

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Living With Cancer: Being Erased

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While I recover from a fractured pelvis, I have time to remember the day after a less ruinous fall two years ago. No bones broken then, but I quickly developed a shiner and then slowly an insight into the color of cancer.

A bluish-purple humdinger bloomed beneath my right eye, spreading its tendrils down my cheek. Leaning over or a deep breath hurt. With too many cancer-related hospitalizations, I was determined to avoid the emergency room. Learn from the pain, I instructed myself, and prepare your dish for the potluck: The word tugged me back to the 1970s.

I had slipped on the way to the bathroom at 4 a.m. A thud — my body hitting the hardwood floor — woke my husband who immediately supplied towels to sop up the bleeding from my forehead. Was that fall a consequence of the targeted medication of a clinical trial, a sliver of Ambien, the neuropathy in my feet from past chemotherapies, or all the above?

Still, food needed to be prepared for the gathering I was supposed to attend that evening of retired faculty women from Indiana University. The company would consist of compatriots on all sorts of committees over the course of some 40 years. We were the ones who arrived at the university to integrate the mostly male faculty. Many of these people had consoled me when cancer treatments necessitated my retirement.

I had already blanched the asparagus and started a dressing. As I assembled the dish, I rehearsed parries to the concerned comments my black eye was sure to elicit. “You should see the other guy,” I would tell my former colleagues. Or “It’s a counter-irritant; it takes my mind off cancer.”

After finding my way to the dinner, I joined some 25 variously frail and hale retired faculty women who had brought quiches and salads for a communal meal. They were filling their plates and sitting in small groups.

With only a spasm of pain, I settled on a couch next to a friend and started to launch into one of my usual shticks: that she should participate in the oral history project to document her work establishing gender studies and African-American studies at our university. But she interrupted me.

“Do you realize that I am the first black woman to retire here since I don’t know many years ago?”

Then we were off and running down memory lane: recalling E.S., a pioneering scholar, and C.M., a brilliant teacher. Careers blindsided, people lost to us. What had happened to them? Gone without a trace. Did their isolation in a Midwestern college town depress them and had their depression further isolated them? Were they pigeonholed as representative African-Americans and erased as unique human beings? Although the administration tried various retention strategies, somehow the environment remained inhospitable.

“It’s still a hard place to be a black woman,” my friend sighed.

While driving home I had worried and wondered why E.S. and C.M. did not, could not navigate their way to that evening’s event and whether newly hired African-American women would find the path as hazardous now as it had been then. At my front door, though, a more self-regarding thought stopped me in my tracks.

How odd that not one person had mentioned my black eye! “You look great,” one and all had volubly exclaimed at my coming and then at my going.

Did my friends assume that oncologists routinely punch their patients in the face? Or were they exhibiting some version of Midwestern niceness? Or are cancer patients invisible as individuals, visible only as cancer patients who must be perpetually bolstered and boosted? My colleagues had seen Susan with cancer, not Susan who arrived in their midst with a black eye.

“People who have had cancer are treated as a kind of minority group,” the prostate cancer survivor Michael Korda believes, “as if the most important thing about them is their cancer, much as many people still treat African-Americans, as if the only thing that matters about them (or to them) is that they are black.”

During the following months, I mulled over the hyper-visibility of categorized cancer patients and African-Americans, on one hand, and their invisibility as individuals, on the other.

Only this year, since it takes me quite a bit of muddling to learn anything, did Michael Korda’s insight make me realize how very few cancer memoirs we have from people of color, despite exceptions like those produced by Audre Lorde and Robin Roberts.

The experiences of minorities remain strikingly marginal in cancer literature: not only in memoirs but also in blogs, diaries, essays, stories, plays, novels, movies and television series. Since these genres generally express the perspectives of individuals, we are impoverished in our understanding when what we read and see excludes the reactions of patients from various economic and ethnic and racial backgrounds. Mortality statistics and drug advertisements notwithstanding, the cancer patients many of us imagine — as individuals enmeshed in their own stories – are white.

In the prize-winning book “Citizen: An American Lyric,” Claudia Rankine describes taking a few steps back when someone with multiple degrees said to her, “I didn’t know black women could get cancer.”

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Aspirin May Reduce Cancer Risk

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Many people take a daily low-dose aspirin to lower the risk of heart disease, and several studies have shown that regular aspirin use reduces the risk for some cancers. Now a long-term analysis has found that its population-wide benefits against cancer may be even greater than previously believed.

Researchers studied aspirin use in 135,965 health care professionals, men and women, tracking their health for as long as 32 years. Over the course of the study, published in JAMA Oncology, there were 27,985 cases of cancer.

Regular aspirin use reduced the risk for all cancers by about 3 percent, though it had no impact on the risk for breast, lung or prostate cancer.

But regular aspirin use reduced the risk for all gastrointestinal cancers by 15 percent, and for cancers of the colon and rectum by 19 percent.

The senior author, Dr. Andrew T. Chan, an associate professor of medicine at Harvard, pointed out that even people who undergo regular colorectal screening can develop cancers, and aspirin could help prevent some of those cancers as well.

“Based on our estimates,” Dr. Chan said, “we think that regular aspirin use could prevent almost 30,000 cases of gastrointestinal cancers a year, which account for almost 25 percent of all cancer deaths. So I think that’s pretty substantial.”