Followup: prophylactic mastectomy for average women

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I wanted to followup on my previous post about Peggy Orenstein’s article on prophylactic mastectomy for average women with breast cancer because I’m seeing some chat about it in BRCA+ communities that disturbs me.

First of all, some BRCA+ women are getting really defensive about the article, posting things like “PBM saved my life!” or “when I was diagnosed with breast cancer in my right breast, I had a double mastectomy and they found cancer in my left breast too!”

This makes me wonder if these women have actually read Orenstein’s article, which focuses on mastectomies for newly diagnosed women who don’t have a BRCA mutation. There have been many scientific studies about average women without BRCA mutations removing their healthy breast along with their cancerous breast after diagnosis. The scientific evidence shows that bilateral mastectomy does not improve survival rates for breast cancer patients who not have a BRCA mutation–repeat, in patients who do not have a BRCA mutation.

I don’t know why some BRCA+ women are getting so riled up about this. The circumstances of BRCA+ women are quite different from those of BRCA- women, and Orenstein’s argument does not apply to us. She makes it perfectly clear that she’s writing about “CPM” (contra-lateral prophylactic mastectomy for average women), not “PBM” (prophylactic bilateral mastectomy for BRCA+ women).

Secondly, I’ve seen women respond to Orenstein’s article by saying they feel psychologically better having had their healthy breast removed. I’ve written about the psychological reasons for PBM before, and I think psychological well-being is a perfectly valid reason for BRCA+ or BRCA- women alike to choose mastectomy. However, like Orenstein, I’m concerned that average women who are choosing CPM may be doing so without getting all the facts about it.

To me, the problems with CPM are manifold. On the one hand, many women are not familiar with issues surrounding breast cancer treatment and they have to quickly get up to speed right when the clock starts ticking after diagnosis, a moment when they may not be in the best mental state to gain literacy in medical discourses. On the other hand, doctors are not doing a good job of communicating to patients the facts about their risk of recurrence with and without CPM, nor are they doing a good job of communicating options for treatment and reconstruction.

Finally, some women seem angry at Orenstein because they simply don’t want to hear to the facts about CPM.  In Cancer Vixen, Marisa Acocella Marchetto’s friends try to get her to see a top oncologist at Sloan-Kettering, but she keeps avoiding it. Finally, she admits that she doesn’t want to see the specialist because doing so would force her to admit that she has “real” cancer, the kind that requires an expert. In other words, going to a world-class cancer hospital like Sloan-Kettering would force her to acknowledge that her life is in danger.

I wonder if something similar is at play with the backlash against Orenstein’s article. As a lifelong feminist killjoy, I know how pissed off people can get at those of us who speak hard truths. NPR recently ran a segment about a study that showed a surprising number of people don’t even want to know if they have a bad medical condition. This morning I saw one woman declare that Orenstein had a lot of nerve telling her to be well informed when she was such a wreck after her diagnosis, that she had a right to put her head in the sand. How common is this sentiment? Is it the case that some newly diagnosed women don’t want to know all the facts about CPM? Is it mentally easier for some women to just remove both breasts and move on?

The choice to have a unilateral or bilateral mastectomy, whether for prevention or treatment, is highly personal, and I have no interest in telling individual women whether or not they should keep or remove their breasts. But both patients and BRCA+ patients need to make well-informed decisions based on sound medical evidence. For this to happen, the medical industry needs to do a better job of communicating risk and treatment options to women, and women need to be willing to face the facts before choosing whatever option they deem best for their health and well being.

 

I want BRCA1/2 testing available on demand.

90% of BRCA+ women don’t know that they carry a mutation and under the new preventive guidelines issued by the U.S. Preventive Services Task Force, many women will never know they’re BRCA+.

This kerfuffle brings to mind the recent 23andme debacle in which the FDA shut down direct-to-consumer testing by claiming that there was a chance of false positives that might led misinformed people to take drastic action. The example they used is that a woman using 23andme’s services might test positive for a BRCA mutation and then get an unnecessary prophylactic mastectomy. It’s a ridiculous example, since women can’t waltz into a surgeon’s office and cavalierly get a mastectomy. Doctors do not accept 23andme’s testing. In cases where women have tested positive for a BRCA mutation through 23andme, their doctors ordered genetic testing to confirm the results. There are many stories of this floating around the online BRCA+ community and no stories of false positives leading to unnecessarily prophylactic mastectomies.

I can’t help but notice how few women these new guidelines will actually serve. Just 10% of women will qualify for genetic testing. These women are deemed “high risk” because they have a number of close family members with breast or ovarian cancer. Under these guidelines, I would not have been tested for a BRCA mutation. I did not have a strong family of breast and ovarian cancer–or so I thought. Just a few years ago, I believed that there were only two cases of breast cancer on my father’s side of the family. Over the course of 15 years of annual gynecological visits and breast exams, my doctors repeatedly reassured me that these two cases were probably sporadic and that my risk was normal because breast cancer risk is inherited matrilineally. They were, obviously, wrong: breast cancer risk is inheritable patrilineally, as well as matrilineally.

Even if my doctors had been better informed, even if they had been aware that women can inherit their breast cancer risk from their fathers, they still would not have recommended BRCA testing for me under these new guidelines. As one doctor comments: “There is a very clear-cut algorithm for whether or not to test someone for a BRCA mutation […] Simply having breast cancer in the family is not sufficient.” Certainly, two cases of postmenopausal breast cancer in my family did not appear to present a pattern of hereditary cancer to my doctors. And yet, here I am, BRCA+.

All these years, I believed myself to be among the 90% of women with an “average” risk of breast cancer. I don’t think my former ignorance is unique. Women may not always know their family medical histories. This is particularly true of breast and ovarian cancer, which until the 1990s were considered shameful and inappropriate to talk about. The only reason I received genetic testing at all is because one of my father’s relatives fought hard to get herself tested despite the reluctance of her doctors, who dragged their feet for months. She tested positive for a mutation and so did I. It wasn’t until that point that I discovered my family’s extensive history of breast cancer and other BRCA-related cancers.

So now I’m wondering: if 90% of BRCA+ women don’t know they have a genetic mutation that puts them at risk, and if many women don’t know their family medical histories, then how are genetic counselors going to correctly identify that 10% of high risk women who should be tested? After all, to even talk to a genetic counselor, a woman needs to be referred by her doctors. And doctors are notoriously ignorant about BRCA+ issues (see Teri Smieja’s book on this). Still, the “USPSTF recommends against routine genetic counseling or BRCA testing for women whose family history is not associated with an increased risk for mutations in the BRCA1 or BRCA2 genes.”

Genetic testing for BRCA mutations should be widely offered and available on demand.

Here are some arguments against this (and why those reasons are stupid):

1. It doesn’t make sense to screen widely for a mutation that so few women actually have. BRCA+ women make up less than 1% of the population, but we already screen people for other rare diseases. For instance, only .66% percent of women get cervical cancer, yet we screen for that annually as soon as girls become sexually active. At the same time, 1% is a huge number of people when you consider that the population of the U.S. is over 300 million people.

2. It would cost too much. Many people have complained about the cost of genetic testing. However, now that Myriad’s patents have been invalidated by the Supreme Court, other genetic laboratories are now offering BRCA testing and this competition is driving the price of tests down. What’s more, BRCA testing is (usually) a one time event and that means a one time cost. If testing were available on demand, then insurance companies would have to cover it the way they cover cholesterol tests and pap smears.

Returning to the example of cervical cancer screening, surely it’s cheaper to test for a BRCA mutation once than it is to test all sexually active women and girls annually for cervical cancer. Nor is it cost-effective to do annual mammograms for women over 40, yet we still do even though it isn’t beneficial as BRCA testing. U.S. medicine is not cost-effective in general. That’s a genuine problem that needs to be solved, but in the meantime I doubt widely available BRCA testing would be the straw that broke the camel’s back.

3. Genetic testing should not be taken lightly and many women may not be ready to deal with deleterious results.  I don’t actually think that most women undertake genetic testing lightly and I doubt that most women would even do BRCA testing if it were offered by their doctors–a lot of people simply don’t want to know and that is a valid choice. Even if some small minority of women were to blithely rush into testing, you cannot protect people from their own stupidity. Nor can you deny well-informed women access to their data because of an infinitesimal number of idiots.

As for women not being ready to deal with the news that they are BRCA+: is anyone? It’s bad news, no matter how you parse it. This is why the profession of genetic counseling has emerged over the last two decades to help people deal with bad news about their genes. While I have had very bad experiences and would personally like to avoid it in the future (that’s a whole ‘nother post), freely available BRCA testing would still have to involve professional genetic counseling. And again, hand-wringing paternalism has no place in modern medicine.

The USPTF has “warned that unnecessary BRCA testing could potentially cause harm.” I don’t buy it. Now that we’ve won the skirmish over genetic patenting, “BRCA TESTING ON DEMAND!” should be the next BRCA+ battlecry.

On a related note, FORCE has identified some other problems with the new guidelines. Go sign their petition here.

Go sign this FORCE letter

FORCE is currently advocating for better preventive care guidelines for BRCA+ women. More information here. Please email Sue Friedman to have your name added to the letter demanding better policies for the HBOC community:

“We have prepared a counter-response to the USPSTF. We are asking all stakeholders to read and sign on to this letter. If you would like us to add your name to this letter, please email us at: suefriedman@facingourrisk.org with your name, city, and state. We plan to submit this letter to the USPSTF by December 10. We will request a written response from the USPSTF and will share their response with the community.”