Missed opportunities: celebrities are not doctors.

One of the most challenging parts of my job is the misinformation that surrounds hereditary cancer and the celebrities who add to the problem.

Celebrities have a large platform from which they can loudly and publicly share their views.  Often times fans and the general public take celebrity views as scientific, medical truth.  Case in point is Jenny McCarthy and her personal contribution to bringing back preventable diseases like measles and mumps, even though she now admits her son was misdiagnosed, doesn’t have autism and does not believe the vaccinations he received were harmful.  The CDC has gone so far as to call her a “Menace to Public Health.”

Everyday I am behind the scenes helping patients and families at risk for hereditary cancer. I am witness to young patients diagnosed with aggressive disease. I am witness to patients that are not offered hereditary cancer testing after a first cancer diagnosis and who are back again with a second cancer.  My goal is to do whatever I can to prevent that second cancer from happening and provide answers for these families.

Recently AARP published an article titled, “Sheryl Crow and Melissa Ethridge Beat Cancer and Heartbreak: Lessons for all of us.”   This article appeared in the Health and Healthy Living section of the magazine and had a short picture infograph containing each woman’s belief on why she got cancer, how she could have prevented it, how she believes she got rid of it, and her mantra for going forward with life. The full article depicts two truly incredible women having overcome personal challenges, medical challenges and rising to the top to continue their successful careers.  To me, that’s inspiring.  I find their ability to overcome adversity really powerful. Unfortunately, the article was somewhat of a miss, as well.

Melissa Ethridge is a BRCA carrier, which means she had hereditary breast cancer. While we are all entitled to their own opinions, this article claimed to include “lessons for all of us,” and I would have anticipated better scientific fact checking and editing by AARP before publishing. Opinion does not equal fact.

The picture at the end of the article was so full of misinformation that fellow BRCA carriers and other breast cancer patients were outraged and took to social media to let their voices be heard. In healthcare, misinformation is hurtful and dangerous.  It makes patients confused and upset.  It makes physician’s jobs even harder.  In this case, it means more patients may miss the opportunity to make informed decisions.

Let’s look at some of the false information in this article.

Ethridge: “I have the BRCA2 gene, but don’t encourage women to get tested. Genes can be turned on or off.  I turned mine on with very poor diet.”

FALSE. Ethridge’s statement is wrong on many levels. 1) Everyone has two copies of the BRCA2 gene.  One from mom and one from dad. In fact, everyone has two copies of the BRCA1 gene, too.  2) If her BRCA2 gene was theoretically “turned on” it would actually be protective against cancer. 3) When a patient has an inherited BRCA mutation it is present in every cell of the body and puts patients at dramatically increased risk for cancer.  Cancer in these patients does not occur because a patient ate gluten, sugar, red meat and dairy, as Ethridge later implies.

BRCA1/2 are tumor supressor genes that when working properly (turned on), act to protect your body against developing cancer. When a patient receives BRCA genetic testing we are looking for changes in the genetic code on BRCA1 or BRCA2. These changes are called mutations. Germline mutations are passed on at birth and can be passed on from either mom or dad.  Mutations in either gene cause it to stop functioning properly and confer an elevated risk for primary and secondary cancers over the general population, including up to 87% lifetime risk for breast cancer and 44% lifetime risk for ovarian cancer.

When we talk about BRCA, the syndrome is called Hereditary Breast and Ovarian Cancer Syndrome (HBOC), and it also includes increased risk for pancreatic, prostate and melanoma cancers. Keep in mind, harboring a mutation does not mean a guaranteed diagnosis of cancer during one’s life.  It does, however, mean risk is greatly elevated.  Inherited germline mutations from mom or dad are generally the cause for cancer in these families and the only way to diagnose a patient with Hereditary Breast and Ovarian Cancer Syndrome is to offer risk assessment and hereditary cancer genetic testing. (It is possible for patients from families with known mutations to develop cancer but test negative for the family’s mutation.)  In Ethridge’s case, she has a known mutation.  We know what’s causing her cancer and it’s not diet.

Certainly testing is a personal decision, some patients will not pursue it and some may regret finding out the information afterwards. That’s what genetic counselors and physicians are for. They are there to help patients through the informed consent process and to understand the ramifications of testing. When patients are given accurate information they learn that a diagnosis of HBOC means they have an elevated risk for cancer and most importantly: they can do something about it.

Hereditary cancer is different. Standard of care guidelines published by the National Comprehensive Cancer Network clearly state that management of patients with hereditary cancer syndromes should be different and more aggressive through increased screening and/or surgery. For HBOC patients, studies have shown that the risk of a second primary breast cancer in their lifetime is up to 64% and developing breast cancer first does not rule out the ovarian or other cancer risks associated with this syndrome. Diet doesn’t cause cancer in these patients.  Diet doesn’t turn a BRCA gene on or off.

As a patient, wouldn’t you want the most appropriate care for your cancer diagnosis? Unless Melissa Ethridge has received a medical degree, telling patients they shouldn’t test and that eating healthy will prevent/cure hereditary cancer is irresponsible.  I’m not suggesting that eating healthy is not a great idea.  It is! However, when it comes to preventing BRCA related cancers, all the kale in the world cannot change the fact a patient has an inherited germline mutation that puts them at a dramatically higher risk for cancer than the general population.  Period.

There are great resources for patients and families who want to learn more about Hereditary Breast and Ovarian Cancer Syndrome.  Here are a few to consider:

  • My Support 360: Comprehensive information about Hereditary Cancer Syndromes and testing process written for patients.
  • Bright Pink: The only national nonprofit dedicated to early detection and prevention of breast and ovarian cancer in young women.
  • FORCE: The only national nonprofit dedicated to HBOC patients.
  • #BRCA Bi-weekly Tweet Chat, Thursdays 6 PM PT/9 PM ET.

I see this article as a missed opportunity. The fault is not solely with the celebrities, but also with AARP choosing to ignore that opinion is not fact. It is a missed opportunity for AARP to use two well known celebrities to share factual, valuable information about hereditary cancer and risk assessment.  If Melissa Ethridge truly believes that her alkaline, sugar free diet cured her cancer that is her opinion to have.  Perhaps it gives her comfort and peace of mind to believe she is controlling her risk that way, and if so, that’s great. I believe that feeling empowered is important for all patients and that empowerment comes in different forms.

However, it is irresponsible to publish articles that claim unscientifically supported statements are lessons for all. Furthermore, I am reminded of how much work we have to do in educating the general public about hereditary cancer. Patients who have BRCA mutations have them whether or not they are tested. They carry elevated cancer risks whether or not they are tested. Patients deserve to know the facts, the REAL facts, and that’s why I’m reminded that our work will never be done.

 

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