Tag: Cancer

Racial Disparities in Lung Cancer Start With Research

During a routine visit to the Good Samaritan Clinic in Morganton, North Carolina, in 2018, Herbert Buff casually mentioned that he sometimes had trouble breathing.

He was 55 years old and a decades-long smoker. So the doctor recommended that Buff schedule time on a 35-foot-long bus operated by the Levine Cancer Institute that would roll through town later that week offering free lung-cancer screenings.

Buff found the “lung bus” concept odd, but he’s glad he hopped on.

“I learned that you can have lung cancer and not even know it,” said Buff, who was diagnosed at stage 1 by doctors in the rolling clinic. “The early screening might have saved my life. It might’ve given me quite a few more years.”

The lung bus is a big draw in this rural area of western North Carolina because some people aren’t comfortable going — and in many cases have no access — to a hospital or doctor’s office, said Darcy Doege, coordinator for the screening program. 

“Our team makes people feel welcome,” she said. “We can see up to 30 patients a day who get referred by their primary care doctor or their pulmonologist, but we also accommodate walk-ups.”

A photo shows the outside of a green bus with the Atrium Health logo and text that reads, "Mobile screening unit."
A bus operated by Atrium Health’s Levine Cancer Institute offers free lung-cancer screenings to people in 19 counties in North and South Carolina. The effort launched in 2017 to make screening more accessible to underserved communities and vulnerable populations.(Melba Newsome for KHN)

Lung cancer is the deadliest of all cancers. It grows quietly and is usually not detected until it has spread to other parts of the body. Early detection is key to survival, especially for someone at high risk like Buff, who is African American and has a history of smoking.

Although it is well documented that Black smokers develop lung cancer at younger ages than white smokers even when they smoke fewer cigarettes, the guidelines that doctors use to recommend patients for screening have been slow to reflect the disparity. If Buff had the same conversation with his doctor one year earlier, he would not have qualified for the CT scan that detected a nickel-sized growth on his left lung.

But screening is only part of the issue, said experts who evaluate what happens both before and after a person is checked for signs of cancer.

Researchers are concerned about the lack of diverse representation in the clinical studies on which the screening recommendations are based. For example, about 13% of the U.S population is Black, but Black people made up just 4.4% of participants in the National Lung Screening Trial, a large, multiyear study in the early 2000s that looked at whether screening with low-dose CT scans could reduce mortality from lung cancer. 

Basing guidelines on trials with so little diversity can lead to delayed disease detection and higher mortality rates, said Dr. Carol Mangione, chair of the U.S. Preventive Services Task Force, a panel of national experts who make recommendations about services such as screenings, behavioral counseling, and preventive medications. Its recommendations play a major role in determining which tests and procedures health insurance companies will agree to pay for.

“We know that Black people get diagnosed with and tend to die more from colon cancer, for example,” Mangione said. “But we don’t have sufficient evidence to say that there should be a different recommendation for Black people, because Black people have not historically been well represented in the clinical trials.”

When Buff was diagnosed with lung cancer, the U.S. Preventive Services Task Force recommended screening for people who were 55 and older and had a smoking history of 30 “pack years,” which means the person smoked an average of one pack of cigarettes a day for three decades. Buff made the cut.

But a 2019 study published in JAMA Oncology found that under those parameters, 68% of Black smokers would have been ineligible for screening at the time of their lung cancer diagnosis, compared with 44 percent of white smokers. In 2021, the U.S. Preventive Services Task Force lowered the recommended screening age for lung cancer to 50 and reduced the number of pack years to 20.

The new guidelines make 8 million more Americans eligible to be screened. But that’s not the only problem that needs to be addressed, said Dr. Gerard Silvestri, a lung cancer pulmonologist at the Medical University of South Carolina.

“It doesn’t matter if a bunch more African Americans are eligible if they have no coverage, distrust the medical system, and have no access,” Silvestri said.

“You might exacerbate this disparity,” he said, “because more whites will also become eligible and are likely to have more access.” 

Silvestri co-leads the Medical University of South Carolina’s portion of a $3 million, four-year Stand Up to Cancer grant-funded project focused on addressing lung cancer disparities. Researchers in the multicenter collaboration — which also includes the Lineberger Comprehensive Cancer Center at the University of North Carolina-Chapel Hill and the Massey Cancer Center at Virginia Commonwealth University — said better screening rates will improve outcomes in underserved communities.

“Patients of color, particularly Black patients, tend to have less access to care, less timely follow-up when there’s an abnormal finding, and later stages of diagnosis,” said epidemiologist Louise Henderson, principal investigator for the study at the Lineberger center.

It takes concerted community efforts to contend with the suite of health disparities that result in poor outcomes for communities of color, experts said. The lung bus that Buff visited is just one example of how cancer researchers are rolling out programs in rural communities. The Atrium Health Levine Cancer Institute in Charlotte, North Carolina, launched the effort in March 2017 to make screening more accessible to underserved people in vulnerable communities who are either uninsured or underinsured.

The bus operates in 19 counties in North and South Carolina. In an analysis published in the journal The Oncologist in 2020, the Levine Cancer Institute said the project had identified 12 cancers in 550 patients and called the results “policy changing.”

By September 2021, the researchers said, the bus had identified 30 cancers in 1,200 screened patients. “Of which 21 were at the potentially curable stage,” said Dr. Derek Raghavan, president of the Levine Cancer Institute and lead author of the analysis. About 78% of the people screened were poor and from rural areas, he said, and 20% were Black Americans.

“You can overcome disparities of care if you really want to,” Raghavan said.

The Lineberger center also partnered with federally qualified health centers in the Raleigh-Durham area and recruited community health advisers to educate patients about the risks of lung cancer and the ease of being screened. It also trained patient and financial navigators to assist with the often-overwhelming aftermath of a diagnosis.

A photo shows two women sitting on stools inside of a medical bus.
Stephanie Deputy (left) and Holly Croom sit in the “lung bus,” a mobile clinic operated by Atrium Health’s Levine Cancer Institute that offers free lung-cancer screenings in 19 rural counties in the Carolinas. On Aug. 10, the bus screened patients at the Gaston County Health Department in North Carolina.(Melba Newsome for KHN)

Recent studies in JAMA Oncology and the Journal of the National Cancer Institute have found that Medicaid expansion under the Affordable Care Act improves overall cancer survival among all racial and ethnic groups and reduces racial disparities in cancer survival. Among the three research sites participating in the lung cancer disparities project, the Massey Cancer Center in Virginia is the only one in a state that expanded Medicaid.

Vanessa Sheppard, associate director of community outreach engagement and health disparities at the center, said she has seen anecdotal evidence that expanding health care coverage improves cancer screening rates.

Nonetheless, awareness about screening remains low in the Black community. Sheppard believes that may be because general health care providers are not educating patients on the available screening tools.

A low-dose CT scan, for example, is one of the most powerful tools available for detecting lung cancer early and reducing deaths. But according to the 2022 Lung Health Barometer from the American Lung Association, nearly 70% of people don’t even know that type of screening is available. And according to Silvestri, only a small percentage of those who are eligible actually get screened.

Perhaps the final hurdle is erasing disparities in who gets follow-up care after screening. A study published in 2020 in the journal BMC Cancer found that Black patients who had been referred to a lung cancer screening program were still less likely than white patients to get screened and that they had longer delays in seeking follow-up care when they did get screened.

Henderson said some patients may mistakenly believe lung cancer is untreatable and simply don’t want to hear bad news.

Sheppard said screening can be used to educate and build trust with patients.

“Once we get people in the system, it’s up to us to make sure they know what’s expected, that it’s not a one-time thing, and that we are embedding them within the system of care,” she said. “I think that’s going to help a lot.”

Readers and Tweeters Decry Medical Billing Errors, Price-Gouging, and Barriers to Benefits

Letters to the Editor is a periodic feature. We welcome all comments and will publish a selection. We edit for length and clarity and require full names.


— Dr. Raghu Venugopal, Toronto


A Plea for Sane Prices

I just read your story about the emergency room billing for a procedure that was not done (“A Billing Expert Saved Big After Finding an Incorrect Charge in Her Husband’s ER Bill,” Oct. 25). We too had a similar experience with an emergency room and a broken arm that was coded at a Level 5, and it was a simple break. No surgery needed, and it took them only 10 minutes to set and wrap the broken arm but charged us over $9,000. I disputed the charges, and it took six months to get them to reduce the bill but they never admitted that they coded a simple break incorrectly to jack up the price of the bill. If it had been a Level 5 issue, we would not have sat in the waiting room for six hours before being seen. It was a horrible experience, and I think ERs all over the nation are doing this to make up for the non-payers they treat every day. It is robbery.

— Terrence Campbell, Pocatello, Idaho



— Ed Gaines, Greensboro, North Carolina


As you said, CPT codes should always be examined. This case is probably more than “just an error.” As a retired orthopedic surgeon, chief of surgery, and chief of staff at a North Carolina hospital, I have seen care such as this coded exactly like this with the rationale that, “Hey, this was a fractured humerus and it was manipulated and splinted.” 24505 is correct IF that is the definitive treatment, which it was not here. Even code 24500 would indicate definitive treatment without manipulation. This was just temporary care until definitive care could be done later. It should be billed as a visit and a splint. The visit for this, if it was an isolated problem (no other injury or problems), would qualify only as a Level 2 visit. That frequently gets upcoded as well by adding a lot of non-pertinent family, medical, and social history and a complete physical exam (seven systems at least) and a whole lot of non-pertinent “medical decision making.” All of that should be documented in the medical records even if the hospital stonewalls on the CPT codes.

Look closely at medical records and you will find frequent upcoding, if you are familiar with the requirements for different levels of treatment.

— Dr. Charles Beemer, Arvada, Colorado


— Shashank Bhat, San Francisco


A number of years ago, I was billed using a code that described a treatment that was not carried out. In similar fashion, I talked with my insurance company, which basically said it did not care whether the treatment took place or not as all it required was for a valid code to appear. I also contacted the Virginia Bureau of Insurance, which approves the various policies, and it said it had no jurisdiction over claims. I decided to let the hospital sue me for the disputed amount and defended myself in district court. Despite their attorney and four “witnesses,” the case was thrown out because the hospital was both unwilling and unable to justify the charges to the satisfaction of the judge. They did not want anybody in power to testify because of the questions they would have been asked, so they left it to people who were completely clueless. The takeaways from this were:

  • Hospitals make up the numbers and leave them grossly inflated so they can claim that they are giving away care when they give discounts on the made-up numbers.
  • Hospitals turn employees into separate billing entities so they can double-charge.
  • Hospitals open facilities such as physical therapy in hospital locations because insurance companies will pay higher amounts when treatment is carried out in a hospital environment.
  • Insurance companies and state insurance agencies do not act as gatekeepers to protect their clients/taxpayers.
  • The insurance companies and the providers have a shared interest in the highest possible ticket prices and outrageous charges because the providers get to claim how generous they are with “unremunerated care,” and if the prices were affordable then they could not justify the high prices for insurance premiums and the allowed administration/profit share of 20% would be based on a far smaller amount.

In any other industry, this would have resulted in multiple antitrust suits. U.S. health care is a sad example of government, health care industry, and insurers all coming together against the interests of consumers. After this court case, I wanted to form a nonprofit to systematically challenge every outrageous charge against people who, unlike myself, did not believe or know how to defend themselves. If hospitals and other providers were forced to go to court to justify their charges on a systematic basis, pricing sanity would eventually prevail.

— Philip Solomon, Richmond, Virginia


— Barry Ritholtz, New York City


Patients as Watchdogs

Thank you for the article on Lupron Depot injections (Bill of the Month: “$38,398 for a Single Shot of a Very Old Cancer Drug,” Oct. 26). Last year, I was diagnosed with prostate cancer, though my case is not anywhere as severe as that experienced by Mr. Hinds.

Last month my urologist scheduled an MRI update for me at a facility owned by Northside Hospital Atlanta. At the suggestion of my beloved wife, I called my insurance company, UnitedHealthcare, to make sure the procedure was covered. Fortunately, it was. That being said, the agent from UnitedHealthcare mentioned that Northside Hospital’s fee was “quite a bit higher than the average for your area.” It was. Before insurance, the charge for an MRI at Northside was $6,291. I canceled the appointment at Northside and had the MRI done by a free-standing facility. Their charge, before insurance, was $1,234.

Every single encounter that I have with the health care system involves constant vigilance against price-gouging. When I have a procedure, I have to make sure that the facility is in-network,. that each physician is in-network, that any attending specialist such as an anesthesiologist or radiologist is in-network (and their base-facility as well). If I have a blood test, I have to double-check if the cost is included in a procedure or if it is separate. If it is a separate fee, I have to ensure that the analysis is also covered, and, if it is not, that it is not done through a hospital-owned facility but instead through a free-standing operation.

I have several ongoing conditions in addition to my prostate cancer — Dupuytren’s contracture, a rare bleeding disorder similar to thrombocytopenia, and arthritis. Needless to say, navigating our byzantine, inefficient, and profit-driven health care system is a total nightmare.

Health care in the United States has become so exceedingly outrageous. I cannot understand why it is not an issue that surfaces during election years or something that Congress is willing to address.

Again, thank you for your excellent reporting.

— Karl D. Lehman, Atlanta


— Brian Murphy, Austin, Texas


I was a medical stop-loss underwriter and marketer for over 30 years. Most larger (company plans for 100-plus employees) are self-funded, meaning the carrier — as in this case, UnitedHealthcare — is supplying the administrative functions and network access for a fee, while using the employer’s money to pay claims.

Every administrator out there charges a case management fee, either as a stand-alone charge or buried in their fees. Either way, they all tout how they are looking out for both the employer and the patient.

Even if this plan was fully insured, wouldn’t it have been in the best interest of all parties when they became aware of the patient’s treatment (maybe after the first payment) to reach out to the patient and let them know there are other alternatives?

The question in these cases is who is minding the store for both the patient and the employer. The employer, the insurer, and the patient could have all saved a lot of money and pain, if someone from case management had actually questioned the first set of charges.

— Fred Burkacki, Sarasota, Florida 


— Amanda Oglesby, Neptune, New Jersey


‘Bill of the Month’ Pays Off

I received a $1,075 refund on a colonoscopy bill I paid months earlier after listening to the KHN-NPR “Bill of the Month” segment “Her First Colonoscopy Cost Her $0. Her Second Cost $2,185. Why?” (May 31) and finding out the procedure should be covered under routine health care coverage. Thank you!

— Cynthia McBride, University Place, Washington


— Erica Warner, Boston


Removing Barriers to Benefits

In the story “People With Long Covid Face Barriers to Government Disability Benefits” (Nov. 9), you stated: “Many people with long covid don’t have the financial resources to hire a lawyer.” This is incorrect. When applying for disability, you don’t need financial resources. There are law firms that specialize in disability claims and will not charge you until you win your claim. And, according to federal law, those law firms can charge only a certain percentage of the back pay you would get once the claim has been won. Also, if you lose the claim, and the law firm has appealed as many times as possible, you don’t owe anything. Please don’t make it more difficult for those who are disabled with misinformation.

— Lorrie Crabtree, Los Angeles


— Ron Chusid, Muskegon, Michigan


Vaccine Injuries Deserve Attention, Too

I read your long-covid article with interest because many of the barriers and some of the symptoms faced by people with long covid are similar to those experienced by people with vaccine injuries. I’m really concerned about how there is even less attention and support for people who suffered adverse vaccine reactions.

Long covid and vaccine injuries are both issues of justice, mercy, and human rights as much as they are a range of complex medical conditions.

It’s nearly 20 months since someone I know sustained a serious adverse reaction, and it is heartbreaking how hard it has been for her to find doctors who will acknowledge what happened and try to help. There’s no medical or financial support from our government, and the Countermeasures Injury Compensation Program is truly a dead end, even as other countries such as Thailand, Australia, and the United Kingdom have begun to acknowledge and financially support people who sustained vaccine injuries.

I’ve contacted my congressional representatives dozens of times asking for help and sharing research papers about vaccine injuries, but they have declined to respond in meaningful ways. Similarly, my state-level representatives ignore questions about our vaccine mandate, which remains in place for state employees, despite at least one confirmed vaccine-caused fatality in a young mother who fell under the state mandate in order to volunteer at school.

There have been a few articles, such as …

… but no new ones have come to my attention recently, and it is concerning that the media and our political and public health leaders seem OK with leaving people behind as collateral damage.

Please consider writing a companion piece to highlight this need and the lack of a functional safety net or merciful response. My hope is that if long covid and vaccine injuries were both studied vigorously, new understanding would lead to therapeutics and treatments to help these people.

— Kathy Zelenka, Port Angeles, Washington


— Matthew Guldin, West Chester, Pennsylvania


More on Mammograms

The article “Despite Katie Couric’s Advice, Doctors Say Ultrasound Breast Exams May Not Be Needed” (Oct. 28) does a disservice to women and can cause harm. An ultrasound is saving my life. I had two mammograms with ultrasounds this year. Although the first mammogram showed one cyst that was diagnosed as “maybe benign,” I knew it wasn’t. Why? Because I could feel the difference. I insisted on a second, and sure enough a large-enough cyst that’s definitely malignant was found. I had breast surgery on Oct. 31, followed by radiation treatment and, if needed, chemotherapy later. This article will deprive other, less aggressive and experienced women who do not have health care credentials or a radiologist for a husband to be harmed by being lulled into complacency.

— Digna Irizarry Cassens, Yucca Valley, California


— Patricia Clark, Scottsdale, Arizona


Your article on breast cancer screening neglected to present the supplemental option of Abbreviated Breast MRI (AB-MRI). The out-of-pocket cost at many clinics ranges from $250 to $500. For a national listing of clinics that offer this supplemental screening option, please go to https://timetobeseen.org/self-pay-ab-mri. For benefits, just Google “Abbreviated Breast MRI.”

— Elsie Spry, Wexford, Pennsylvania


— Donald H. Polite, Milwaukee


Preparation Plans for Seniors: All for One and One for All

At least 120 people died from Hurricane Ian, two-thirds of whom were 60 or older. This is a tragedy among our most vulnerable population that should have been prevented (“Hurricane Ian’s Deadly Impact on Florida Seniors Exposes Need for New Preparation Strategies,” Nov. 2).

Yes, coming together and developing preparedness plans is one way to protect seniors and avoid these kinds of tragedies in the future, but since this is not a one-size-fits-all situation, organizations that help seniors across the country must first look internally and be held accountable by making sure their teams always have a plan in place and are prepared to activate them at a moment’s notice.

During Hurricane Ian, I saw firsthand what can happen when teamwork and effective planning come together successfully to protect and prepare seniors with chronic health conditions like chronic obstructive pulmonary disease who require supplemental oxygen to breathe.

Home respiratory care providers and home oxygen suppliers worked tirelessly to ensure our patients received plenty of supplies to sustain them throughout the storm, and when some patients faced situations where their oxygen equipment wasn’t working properly inside their homes, staff members were readily available to calmly talk the patient through fixing the problem. After the winds receded, mobile vans were quickly stationed in safe spaces for patients or their family members to access the oxygen tanks and supplies they needed. If patients were unable to make it to these locations, staff members were dispatched to deliver tanks to their homes personally and check in on the patient.

Patients were also tracked down at shelters, and a team of volunteers was formed around the country to find patients who could not be reached by calling their emergency backup contacts, a friend, or family member. Through these established systems, we were able to remain in contact with all of our patients in Ian’s path to ensure their care was not impeded by the storm.

Organizations should always be ready and held accountable for the seniors they care for in times of disaster. I know my team will be ready. Will yours?

— Crispin Teufel, CEO of Lincare, Clearwater, Florida


— Ashley Moore, San Francisco


The Tall and the Short of BMI

I am amazed that in your article about BMI (“BMI: The Mismeasure of Weight and the Mistreatment of Obesity,” Oct. 12) you never mentioned anything about the loss of height. If a person goes from 5-foot-2 to 4-foot-10, the BMI changes significantly.

— Sue Robinson, Hanover, Pennsylvania


— Steve Clark, Lee’s Summit, Missouri


Caring for Nurses’ Mental Health

During the pandemic, when I read stories about how brave and selfless health care heroes were fighting covid-19, I wondered who was taking care of them and how they were processing those events. They put their own lives on the line treating patients and serving their communities, but how were these experiences affecting them? I am a mother of a nurse who was on the front lines. I constantly worried about her as well as her mental and physical well-being (“Employers Are Concerned About Covering Workers’ Mental Health Needs, Survey Finds,” Oct. 27). I was determined to find a way to honor and support her and her colleagues around the country.

I created a large collaborative art project called “The Together While Apart Project” that included the artwork of 18 other artists from around the United States. It originated during the lockdown phase of the pandemic, a time when we were all physically separated yet joined by a collective mission to create one amazing art installation to honor front-line workers, especially nurses. Upon its completion, this collaboration was recognized by the Smithsonian Institute, Channel Kindness (a nonprofit co-founded by Lady Gaga) and NOAH (National Organization of Arts in Medicine). After traveling around the Southeast to various hospitals for the past year on temporary exhibit, the artwork now hangs permanently in the main lobby at the University of Virginia Medical Center in Charlottesville, Virginia.

I wanted to do something philanthropic with this art project to honor and thank health care heroes for their dedication over the past two years. It was important to find a way to help support them and to ensure they are not being forgotten. Using art project as my platform, I partnered with the American Nurses Association and created a fundraiser. This campaign raises money for the ANA’s Well-Being Initiative programs, which support nurses struggling from burnout and post-traumatic stress disorder and who desperately need mental and physical wellness care. Fighting covid has taken a major toll on too many nurses. Some feel dehumanized and are not receiving the time off or the mental and physical resources needed to sustain them. Many are suffering in silence and have to choose between caring for themselves or their patients. They should not have to make this choice. Nurses are the lifeline in our communities and the backbone of the health care industry. When they suffer, we all suffer. Whether they work in hospitals, doctors’ offices, assisted living facilities, clinics or schools, every nurse has been negatively impacted in some way by the pandemic. They are being asked to do so much more than their jobs require in addition to experiencing greater health risks, less pay, and longer hours. Nurses under 35 and those of color are struggling in larger numbers.

The American Nurses Foundation offers many forms of wellness care at no charge. They rely heavily on donations to maintain the quality of their offerings as well as the ability to provide services to a growing number of nurses. I am an artist, not a professional fundraiser, and I have never raised money before. But I feel so strongly about ensuring that nurses receive the support and care they deserve, that I am willing to do whatever it takes to advocate and elevate these health care heroes.

The Together While Apart Project’s “Thank You Nurses Campaign” goal is $20,200, an amount chosen to reflect the numbers 2020, the year nurses became daily heroes. So far, I have raised over $15,500 through gifts in all amounts. For example, a $20 donation provides a nurse with a free one-hour call with a mental health specialist. That $20 alone makes a big difference and can change the life of one nurse for the better. The campaign has provided enough funding (year to date) to enable 940 nurses to receive free one-hour wellness calls with mental health specialists.

The online fundraiser can be found at https://givetonursing.networkforgood.com/projects/159204-together-while-apart-fundraiser.

— Deane Bowers, Seabrook Island, South Carolina


— Employee Assistance Professionals Association, Arlington, Virginia


Pese al consejo de Katie Couric, médicos dicen que las ecografías de seno pueden no ser necesarias

Cuando Katie Couric compartió la noticia de su diagnóstico de cáncer de mama, la ex presentadora del programa Today de NBC dijo que veía este nuevo reto de salud como un momento para animar a la gente a hacerse pruebas de detección de cáncer. 

“Por favor, háganse su mamografía anual”, escribió en su página web el mes pasado. “Pero igual de importante, averigüen si necesitan pruebas adicionales”.

En el ensayo, Couric, de 65 años, explicaba que, como tiene senos densos, se hace una prueba de ultrasonido además de la mamografía todos los años para detectar el cáncer de seno. La ecografía mamaria, también llamada sonograma, utiliza ondas sonoras para tomar imágenes del tejido mamario.

A veces puede identificar tumores malignos que son difíciles de detectar en una mamografía en mujeres con pechos densos, que significa tener una alta proporción de tejido fibroso y glándulas, y menos tejido graso.

Couric, que se sometió a una colonoscopía en vivo en televisión después de que su primer esposo muriera de cáncer de colon, y que perdió a una hermana por cáncer de páncreas, lleva mucho tiempo abogando por mejores opciones de detección.

Expertos en cáncer de seno aplaudieron a Couric por llamar la atención sobre la densidad mamaria como factor de riesgo de cáncer. Pero no coinciden con su defensa de las pruebas complementarias.

“No tenemos pruebas de que la revisión auxiliar reduzca la mortalidad por cáncer de mama o mejore la calidad de vida”, dijo la doctora Carol Mangione, profesora de medicina y salud pública de UCLA que preside el Grupo de Trabajo de Servicios Preventivos de Estados Unidos, un grupo de expertos médicos que hace recomendaciones sobre servicios preventivos tras sopesar beneficios y daños.

Couric no respondió al pedido de comentarios.

Además de la mamografía anual, algunas mujeres con mamas densas se hacen una ecografía o una resonancia magnética para tratar de identificar las células cancerosas que no se detectan en la mamografía. En la mamografía, el tejido fibroso denso aparece de color blanco y hace más difícil ver un cáncer, que también se ve blanco. El tejido mamario graso, que aparece oscuro en la mamografía, no oculta los cánceres de mama.

Dado que la tomosíntesis digital de las mamas, o mamografía en 3D, está cada vez más extendida, un número creciente de mujeres se hace esta prueba de chequeo en lugar de la mamografía estándar en 2D.

La mamografía 3D reduce el número de falsos positivos y parece identificar más cánceres en algunas mujeres con mamas densas, aunque se desconoce el impacto en la mortalidad. 

El grupo de trabajo da una calificación de “I” a la ecografía para las mujeres con mamas densas cuyos resultados de la mamografía no indican ningún problema. Esto significa que la evidencia actual es insuficiente para evaluar si los beneficios superan los daños del examen adicional.

Uno de los principales efectos nocivos que preocupa a los investigadores son los falsos positivos.

Las imágenes complementarias en mujeres que no tienen un riesgo elevado de padecer cáncer de mama pueden identificar posibles puntos problemáticos, lo que puede dar lugar a pruebas de seguimiento, como biopsias, que son invasivas y suelen aumentar el temor de las pacientes al cáncer. Pero la investigación ha descubierto que muy a menudo estos resultados resultan ser falsas alarmas.

Si 1,000 mujeres con senos densos se someten a una ecografía tras una mamografía negativa, la ecografía identificará entre dos y tres cánceres, según los estudios. Pero las imágenes adicionales también identificarán hasta 117 problemas potenciales que llevan a visitas y pruebas de seguimiento, pero que finalmente se determinan como falsos positivos.

“Por un lado, queremos hacer todo lo posible para mejorar la detección”, dijo la doctora Sharon Mass, ginecóloga y obstetra en Morristown, New Jersey, y ex presidenta de la sección de New Jersey del Colegio Americano de Obstetras y Ginecólogos. “Pero, por otro lado, hay muchos costos y angustia emocional” asociados a los resultados falsos positivos.

El grupo profesional no recomienda la revisión suplementaria para las mujeres con senos densos que no tienen ningún factor de riesgo adicional de cáncer.

Muchos otros grupos profesionales tienen una posición similar.

“Recomendamos tener una conversación con un proveedor de atención médica, y que las pacientes entiendan si sus senos son densos”, dijo Mass. “Pero no recomendamos que todo el mundo se haga la prueba”.

En particular, para aproximadamente el 8% de las mujeres que tienen senos extremadamente densos, vale la pena tener una conversación con un médico sobre la detección adicional, dijo Mass.

Del mismo modo, para las mujeres con senos densos que tienen factores de riesgo adicionales para el cáncer de mama, como antecedentes familiares de la enfermedad o un historial personal de biopsias de mama para comprobar los cánceres sospechosos, la ecografía puede tener sentido, dijo.

Las mamas densas son relativamente comunes. En Estados Unidos, se calcula que el 43% de las mujeres mayores de 40 años tiene mamas consideradas densas o extremadamente densas. Además de dificultar la interpretación de las mamografías, las mujeres con mamas densas tienen hasta el doble de probabilidades de desarrollar cáncer de mama que las mujeres con senos de densidad media, según las investigaciones.

Estudios han demostrado que las mamografías reducen la mortalidad por cáncer de seno. Sin embargo, aunque parece intuitivo que un mayor número de pruebas mejore las probabilidades de vencer al cáncer, las investigaciones no han demostrado que las mujeres tengan menos probabilidades de morir de cáncer de mama si se hacen una ecografía o una resonancia magnética suplementaria tras un resultado negativo de la mamografía.

Treinta y ocho estados y el Distrito de Columbia tienen leyes que exigen que se notifique a las pacientes sobre la densidad mamaria después de una mamografía, aunque no todas ordenan que se informe a las mujeres sobre su propia situación. Algunos estados exigen que las aseguradoras cubran las pruebas complementarias.

En 2019, la Administración de Alimentos y Medicamentos (FDA) propuso que la información sobre la densidad mamaria se incorporara a las cartas que reciben las pacientes después de una mamografía. Esa regla aún no se ha concretado, pero la agencia indicó a los legisladores que espera emitirla a más tardar a principios de 2023.

Las pruebas de imagen complementarias pueden ser caras si el plan de salud no las cubre. Una ecografía puede costar $250, mientras que un MRI puede salir $1,084 si se paga del propio bolsillo, según la Brem Foundation to Defeat Breast Cancer.

La diputada Rosa DeLauro (demócrata de Connecticut) tuiteó que está trabajando en un proyecto de ley con Couric que cubriría los MRI  y las ecografías para las mujeres con mamas densas.

Algunos médicos recomiendan otras medidas que pueden ser más eficaces que las pruebas adicionales para las mujeres con senos densos que quieren reducir su riesgo de cáncer de mama.

“Si realmente quieres ayudarte a tí misma, pierde peso”, dijo la doctora Karla Kerlikowske, profesora de medicina y epidemiología/bioestadística de la Universidad de California-San Francisco, que ha desarrollado calculadoras para ayudar a las personas a evaluar su riesgo de cáncer de mama. “Modera su consumo de alcohol y evita la sustitución hormonal a largo plazo. Son cosas que puedes controlar”.

Pruebas genéticas crean oportunidades de tratamiento, pero también confusión, entre las pacientes de cáncer de mama

La última década ha sido testigo de una rápida expansión de las pruebas genéticas, que incluyen nuevos instrumentos para informar a las pacientes, a las que se les ha diagnosticado cáncer de mama, sobre el riesgo de recurrencia y para orientar su tratamiento.

Pero la relevancia clínica de muchas de las mutaciones hereditarias que ahora pueden identificarse sigue sin estar clara, y los expertos no se ponen de acuerdo sobre cuándo y cómo desplegar las nuevas pruebas disponibles. A veces, los pacientes tienen que pagar de su bolsillo por exámenes que todavía no son el estándar de atención, e incluso los oncólogos más actualizados pueden no estar seguros de cómo incorporar la avalancha de nueva información a lo que solían ser los protocolos de tratamiento estándar.

Hace un cuarto de siglo, Myriad Genetics introdujo la primera prueba genética del cáncer de mama para las mutaciones BRCA, dos genes asociados a un riesgo elevado de padecer cáncer de mama, abriendo la puerta a una nueva era en las pruebas genéticas.

Las mutaciones en los genes BRCA1 y BRCA2 son responsables de hasta la mitad de los cánceres de mama hereditarios, y las personas con una mutación problemática en uno de esos genes tienen entre un 45% y un 72% de probabilidades de desarrollar cáncer de mama a lo largo de su vida. También pueden tener un mayor riesgo de padecer cáncer de ovario, y otros tipos de cáncer, que las personas sin mutaciones dañinas en el BRCA.

Pero el significado clínico es menos claro para muchas otras pruebas genéticas.

Las pruebas de los genes BRCA1 y BRCA2 solían costar miles de dólares. Ahora, por una fracción de ese precio, los médicos pueden pedir a los laboratorios comerciales paneles de pruebas multigénicas que buscan mutaciones en docenas de genes. Algunas empresas de venta directa al consumidor ofrecen paneles de detección por unos pocos cientos de dólares, aunque su fiabilidad varía.

Cuando Jen Carbary fue diagnosticada con cáncer de mama en 2017 a la edad de 44 años, las pruebas genéticas identificaron una mutación en un gen llamado PALB2 que aumenta significativamente el riesgo de desarrollar cáncer de mama. Las directrices sugieren que las pacientes con cáncer de mama con una mutación PALB2, al igual que las que tienen mutaciones BRCA1 y BRCA2, consideren someterse a una mastectomía para reducir la posibilidad de una recurrencia del cáncer.

“Ojalá las pruebas genéticas fueran el estándar de atención médica”, dijo Carbary, que no debía nada por la prueba porque su aseguradora la cubrió.

Carbary, que vive en Sterling Heights (Michigan), contó que los resultados de las pruebas la reafirmaron en su decisión de someterse a una doble mastectomía y proporcionaron información importante a los miembros de su familia, entre ellos a su hija de 21 años y su hijo de 18, que probablemente se someterán a las pruebas a mediados de los 20 años o al iniciar los 30.

Pero a algunos expertos en cáncer de mama les preocupa que la generalización de las pruebas pueda identificar también mutaciones genéticas cuyo impacto no esté claro, lo que crearía ansiedad y llevaría a realizar más pruebas y tratamientos de dudoso valor que podrían aumentar los costos para el sistema sanitario.

También puede confundir al paciente.

“Ocurre a menudo que las pacientes acuden a nosotros después de obtener resultados confusos en otros lugares”, indicó el doctor Mark Robson, jefe del servicio de medicina mamaria del Memorial Sloan Kettering Cancer Center de Nueva York. Robson explicó que el centro oncológico cuenta con un servicio de genética clínica, formado por médicos y asesores genéticos, que ayuda a las personas a tomar decisiones sobre cómo gestionar los resultados de este tipo de pruebas.

Para las personas diagnosticadas con cáncer de mama, muchos grupos profesionales, incluida la influyente National Comprehensive Cancer Network (NCCN), recomiendan limitar las pruebas a ciertas personas, incluidas las que tienen factores de alto riesgo, como antecedentes familiares de cáncer de mama; las que tienen 45 años o menos cuando son diagnosticadas; y las que tienen ascendencia judía asquenazí.

Pero en 2019, la Sociedad Americana de Cirujanos de Mama (ASBrS) recomendó un enfoque diferente: Ofrecer pruebas genéticas a todas las pacientes que sean diagnosticadas o tengan antecedentes personales de cáncer de mama. La recomendación fue controvertida.

“Las directrices de la NCCN cubren a la mayoría de las mujeres que necesitan pruebas, pero nosotros queríamos hacerlas a todas”, señaló el doctor Eric Manahan, cirujano general en Dalton, Georgia, y miembro de la junta directiva de la ASBrS.

Las mutaciones en otros genes que se asocian al cáncer de mama son mucho menos comunes que las mutaciones en el BRCA1 y el BRCA2 y, por lo general, no aumentan tanto el riesgo de desarrollar cáncer de mama. El impacto de estos genes en el cáncer puede ser menos claro que el de los genes BRCA, cuya detección se lleva a cabo desde mediados de los años noventa.

Y la respuesta adecuada a las mutaciones menos comunes —ya sea una mastectomía para reducir el riesgo o un cribado intensivo— a menudo no está clara.

“Las cosas se vuelven cada vez más confusas cuando se examinan otros genes”, afirmó el doctor Steven Katz, profesor de medicina y políticas sanitarias de la Universidad de Michigan. “Los riesgos tienden a ser menores para diferentes tipos de cáncer, y menos seguros y más variables. Puede que llegues a preguntarte: ‘¿Por qué tengo que saber esto?”.

Una vez diagnosticado el cáncer de mama, las pruebas genéticas pueden ayudar a tomar decisiones sobre el tipo de cirugía que se debe realizar; por ejemplo, un alto riesgo de recurrencia o un nuevo cáncer de mama puede hacer que algunas personas opten por una cirugía más extensa, como una doble mastectomía. Las pruebas también pueden proporcionar información importante a los miembros de la familia sobre su posible riesgo de cáncer.

(Este tipo de pruebas genéticas, llamadas “de línea germinal”, examina las mutaciones en los genes que las personas heredan de sus padres. Es diferente de las pruebas genómicas de los tumores, que examinan genes o proteínas específicos de las células cancerosas y pueden ayudar a los médicos a entender el ritmo de división de las células cancerosas, por ejemplo, y la probabilidad de que el cáncer reaparezca).

Cada vez más, las pruebas genéticas de la línea germinal también pueden ayudar a orientar otras decisiones de tratamiento. Algunas pacientes con cáncer de mama metastásico que presentan mutaciones en los genes BRCA1 o BRCA2 pueden ser buenas candidatas para los inhibidores de PARP, fármacos contra el cáncer que atacan a los tumores con mutaciones en esos genes.

Pero las pruebas genéticas que descubren mutaciones heredadas en muchos otros genes arrojan una información menos clara, aunque los resultados positivos pueden alarmar a las personas.

En el Memorial Sloan Kettering, los especialistas en cáncer se centran en la “capacidad de acción terapéutica”, afirmó Robson. ¿Ayudarán las pruebas a alguien a decidir si debe someterse a una doble mastectomía o le proporcionarán otra orientación importante? “Una política de pruebas para todo el mundo identificará muy pocas mutaciones mamarias BRCA adicionales, pero costará mucho”, añadió.

En consecuencia, los médicos debaten cuál es la mejor manera de desplegar e incorporar los nuevos conocimientos genéticos. Y las aseguradoras tratan de averiguar qué es lo que deben pagar.

Hay una subutilización de las pruebas que la ciencia dice que son relevantes y una sobreutilización de las pruebas que, según los expertos, proporcionan información que no puede interpretarse con ninguna certeza científica.

El resultado puede ser la confusión de las pacientes a las que se les acaba de diagnosticar un cáncer de mama, ya que se enfrentan a los gastos de las pruebas genéticas y, en ocasiones, a una escasa orientación sobre el tratamiento adecuado.

Algunos médicos afirman que el primer paso es asegurarse de que el pequeño grupo de personas que se beneficiaría claramente se someta a las pruebas genéticas cuyo significado se entiende con claridad. Solo el 15% de las pacientes con cáncer de mama que cumplían con las directrices de pruebas selectas de la NCCN para el cáncer hereditario recibieron pruebas genéticas, según un estudio de 2017 que examinó los datos de una encuesta nacional de salud entre 2005 y 2015.

“Yo diría que nuestro enfoque debe estar en las personas con alto riesgo de cáncer de mama que ni siquiera están identificadas todavía”, expresó la doctora Tuya Pal, directora para las disparidades de salud del cáncer en el Centro de Cáncer Vanderbilt-Ingram y vicepresidenta del panel de directrices de la NCCN para la evaluación genética/familiar de alto riesgo de cáncer de mama, ovario y páncreas.

Los pacientes pueden caer en el olvido porque nadie les dice que deben hacerse la prueba. En un análisis, el 56% de las pacientes con cáncer de mama de alto riesgo que no se sometieron a pruebas genéticas afirmaron que sus médicos no se lo recomendaron.

Incluso si los médicos recomiendan las pruebas genéticas, pueden carecer de la experiencia necesaria para determinar qué pruebas se necesitan y cómo interpretar los resultados. Esa es la función de los asesores genéticos, pero no hay muchos disponibles.

Las consecuencias pueden ser graves. En un estudio de 666 pacientes con cáncer de mama que se sometieron a pruebas genéticas, la mitad de las que tenían un riesgo medio de padecer un cáncer hereditario se sometieron a una doble mastectomía por haber encontrado “variantes de significado incierto“, que no requieren acción clínica. Hasta la mitad de los cirujanos informaron de que trataban a estas pacientes del mismo modo que a las que tenían mutaciones cancerígenas.

“El grueso de nuestra investigación diría que aún hay margen de mejora en lo que respecta a que los médicos obtengan la formación que necesitan”, afirmó la doctora Allison Kurian, directora del programa de genética clínica del cáncer femenino de la Universidad de Stanford y coautora del estudio.