Oophorectomy Sucks

I get it: risk-reducing bilateral salpingo-oophorectomy (RRBSO) is the only proven way to protect high risk women from ovarian cancer, a disease that is particularly hard to detect, psychologically and physically devastating, and usually deadly. There are currently no accurate ways to screen for it in symptomless women and by the time symptoms do arise the cancer has almost always already spread beyond the pelvis and it is too late to save the patient’s life. Moreover, the only way to make a diagnosis for ovarian cancer in women with symptoms is surgery, which is at best unpleasant (as I can attest) and at worse can lead to life-threatening complications (as a friend of mine who nearly died during her seemingly routine RRBSO can attest). RRBSO is the only scientifically proven way to prevent ovarian cancer and, as a bonus, also reduces the risk of breast cancer. It’s absolutely clear that oophorectomy saves women’s lives.

HOWEVER.

Oophorectomy brings its own horrors. Surgical menopause is no joke. A recent UPenn study found that the vast majority of women who undergo RRBSO experience some form of “sexual dysfunction, menopausal symptoms, cognitive and stress issues, and poor sleep” after surgery. I couldn’t help but roll my eyes when I saw this study: after all, thousands upon thousands of women in the BRCA+ community have been griping about surgical menopause for decades. Did we really need a study to tell us premature menopause is bad? Apparently so, if we want doctors and researchers to take us whiny hysterical ladyfolk seriously.

Despite the fact that oophorectomy is a surgery with serious repercussions, BRCA+ women are pressured (by other BRCA+ women, by doctors, by researchers, by genetic counselors, etc.) to undergo RRBSO after child-bearing is completed and by the age of 35. The pressure to get an oophorectomy by 35 is even more intense than the pressure to have a mastectomy, since removal of the ovaries also reduces the risk of developing breast cancer. From my (very, very pre-menopausal) perspective, oophorectomy is a far more radical surgery than mastectomy, as difficult as that procedure undoubtedly is, because removing the ovaries throws women into instantaneous surgical menopause. The ovaries continue to help regulate hormonal function in women even after natural menopause and oophorectomy has a range of often unpredictable side effects and not well-studied medical repercussions.

When women do not live by the commandment to remove their ovaries by 35, they are often explicitly or implicitly blamed for their own cancers. Take this otherwise sympathetic article entitled “Cancer sufferer Elisha Neave, who chose to delay preventative surgery dies aged 36.” The headline suggests that if only Elisha had followed HBOC recommendations and removed her ovaries by 35, then she would be alive today. After Elisha passed away, many BRCA+ women responded to this particular headline by expressing empathy for her and her family, but also by asserting the importance of early oophorectomy for high risk women. As I’ve written before, there’s a huge flaw in this logic: Elisha’s choice to delay oophorectomy was well within the guidelines for BRCA+ women. Her ovarian cancer struck unusually early, even for a BRCA+ cancer, and official guidelines cannot account for cases like hers. In other words, the oophorectomy by 35 commandment wouldn’t have saved her. (Incidentally, it’s funny/infuriating how BRCA+ women are censured by the general public and mass media for both choosing and not choosing to have prophylactic surgery. We just can’t win.)

The often repeated deadline to have an oophorectomy by 35 is misleading, for a variety of reasons. For starters, BRCA1 and BRCA2 mutations carry significantly different risks for ovarian cancer, which require somewhat different surgical management. What’s more, ovarian cancer in BRCA1 and BRCA2 women tend to develop at different points in their lives. BRCA1 women are more likely get ovarian cancer after the age of 40, while BRCA2 women are more likely to get it after the age of 50. Again, this means that BRCA1 and BRCA2 require different surgical management strategies. Few things bother me more in the BRCA+ community than hearing “oophorectomy by 35” get bandied about as a set-in-stone commandment when in fact the timing of oophorectomy might differ significantly according to which genetic mutation you have.

Speaking of commandments, who gave us this one? At the Joining FORCEs conference a few weeks ago, Dr. Noah Kauff noted that the “oophorectomy by 35” deadline actually originated in a misreading of his own research. In his study, he and his co-researchers observed that RRBSO after 35 is reasonable for BRCA+ women. Somewhere in the telephone game of media reportage and social media that recommendation got turned into a hard and fast rule, but it’s not. To my surprise, Dr. Kauff said that because BRCA2 women are less likely to develop ovarian cancer than BRCA1 women and that when they do it usually emerges after the age of 50, he doesn’t even recommend screening BRCA2 women for ovarian cancer until the age of 40 and may even counsel a BRCA2 patient to delay oophorectomy until her early-to-mid-40s (depending on the patient, of course).

What was so refreshing about Dr. Kauff’s presentation is his acknowledgement that BRCA+ women should have individualized prevention plans based upon their particular situations, family histories, and mutations. This was not the sort of attitude I saw among many male doctors at the Joining FORCEs conference, most of whom were clearly on TEAM OOPH. For instance, during his presentation on testing for founders mutations abroad, Dr. Steven Narod commented that “The benchmark for success is the number of oophoretomies performed on healthy women.” His reasoning is that oophorectomies are the only proven way to prevent ovarian cancer in high risk women. He’s not wrong, but the issue is far more complicated than a unilateral approach suggests.

And yes, TEAM OOPH is a boys’ club. Women doctors and researchers are far more likely to acknowledge that surgical menopause comes with an array of negative psychological, cognitive, and other effects, some of which are temporary and simply unpleasant and others that may be chronic and serious (at the same conference, Dr. Karen Hurley remarked that BRCA+ women face an “avalanche” of imperfect choices–truer words have never been said).

History tells us that patriarchal medicine has long removed female organs with little regard for women’s desires, agency, and quality of life. The prevalence of unnecessary hysterectomies even today is just one example of the ways in which this cavalier attitude towards women’s bodies continues in modern medicine. The truth is that the female reproductive track has not been well studied and there’s a lot that remains a mystery about such quotidian biological processes as menstruation and hormonal cycles. Considering this context, it’s little surprise that ovarian cancer in particular is poorly understood. The solution to such widespread ignorance about female organs should not be removal. It should be more research.

But research takes time and although important work is currently underway, it won’t be done in time for many BRCA+ women who need to decide how to lower their risk of ovarian cancer. For now, oophorectomy will remain an important option for risk reduction for BRCA+ women.

While we wait, the BRCA+ community–patients, doctors, researchers, genetic counselors, groupies, etc.–need to make some attitudinal changes.

  • We need to keep in mind at all times that BRCA1 and BRCA2 are very similar but not identical.
  • We must demand prevention management strategies that take into account these differences.
  • We need to demand more research on the risks associated with particular mutations within BRCA1 and BRCA2.
  • We need to demand personalized risk estimates based on our individual mutations, family histories, situations, and values.
  • We need to acknowledge that ovarian function is important for a woman’s psychological and physical health even after her childbearing years and even a woman who does not want to have (more or any) children may have valid reasons for ovary conservation.
  • We need to demand surgical alternatives to oophorectomy.
  • We need to demand alternatives to surgical risk reduction altogether.
  • We need to demand better ways to manage surgical menopause.
  • We need to remember that surgery is just one strategy for risk reduction and not a mandate, and that there are good reasons for choosing surveillance or chemoprevention.
  • We need to stop implicitly blaming women for not doing “enough” to prevent their own cancers, whether that be not exercising more or delaying oophorectomy.
  • We need to acknowledge that quality of life is incredibly important.
  • We need to understand that not all doctors agree about timing oophorectomy and we need to familiarize ourselves with these medical debates.
  • We need to reject one-size-fits-all approaches to risk reduction and need to make well-informed, medically sound decisions for ourselves.
  • We need to stop being so matter-of-fact about tearing out healthy ovaries and sending women into surgical menopause. It is, at best, the lesser of two evils.

 

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Joining FORCEs Conference Philadelphia 2014

There’s so much I have to say about this conference that I don’t know where to start. I am overwhelmed by the whole experience and I’m going to need some time to let it all percolate.

For now though I will say that I am truly impressed by this conference and by the FORCE leadership. It’s a huge event and from a participant’s perspective it went off without a hitch. I know how much work goes into making an undertaking of this size go smoothly and Sue Friedman, Diane Rose, Sandra Cohen, Lisa Schlager, FORCE Philly, and no doubt a lot of people whose names I don’t even know deserve massive props for making it look so effortless. They have created an enjoyable, informative, and important event for BRCA+ women. Bravo!

Some miscellaneous pictures and comments:

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Before the conference, I tried to figure out a loose schedule of events that I wanted to attend by reading session descriptions and googling presenters. This didn’t work out so well, as you can see in the picture above, since there were so many sessions to choose from and often great sessions running simultaneously. I went to sessions in every time slot and came away exhausted and excited. Out of the many sessions that I saw only one was disappointing (mostly because the speaker was visibly nervous–it’s a lot of pressure to talk to these big crowds of BRCA+ people). The others far exceeded my expectations.

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The exhibition area had booths for genetic testing companies, breast cancer nonprofits, surgical offices, and various odds and ends. I came away with tons of free swag and useful pamphlets. I was pleased to see two tables focused on African American women and breast cancer.

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The Basser Research Center for BRCA had several booths set up with information on various studies seeking participants. The biggest one was for a BRCA+ registry. In return for spitting in a test tube and going over your family medical history, participants got this t-shirt. I am more than happy to spit for BRCA+ science and would eagerly do it for any legitimate researcher who asked me to. I’m also thrilled to get a Basser Center shirt and will gladly shill for them whenever I can.

However, there’s no way in hell I’m wearing a shirt that says “Spit for Science” outside my house and this one has quickly been relegated to sleepwear. Y’all, next year please can you give us something a little less gross? I would love one with just a big Basser logo or DNA or something science related on it that I can wear to yoga.

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There were film crews in nearly every session for the upcoming documentary on BRCA+ men, Pink&Blue.

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I know this panoramic view is fuzzy and I tried at least seven times to get a better one with no luck. Still, look at all those people! There’s something wonderful about sitting in a packed room of people who know exactly what you’re dealing with. I’m not usually prone to the warm and fuzzies, but this conference left me feeling optimistic and happy.

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The conference was held in the Downtown Marriott right next to Reading Terminal Market–a fantastic location. I popped in to get lunch and found some cliche pink breast cancer awareness stuff at Carmen’s cheesesteaks. If the line wasn’t so long I would’ve harangued the guy behind the register about where they send the money raised from t-shirt sales. You got away from me this time, Carmen Dude.

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This is a picture of Tara Friebel explaining the cycle of information for medical research during her session on understanding research, risk, and statistics. I have more comments on this that I’ll save for another post. At this point, I will say how great it was to have direct access to BRCA researchers and clinicians like Tara. The sessions sometimes ran long and often there wasn’t much time for Q&A, but most of the time presenters stayed long after to answer questions about individual attendee’s particular situations. Most presenters were remarkably patient and friendly.

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Here’s Andrea from Brave Bosom asking a question of Dr. Steven Narod after his presentation on genetic testing for BRCA founder mutations.  I know it’s a cliche by this point to wax poetic about the potential of the internet to forge connections, but social media has been such an important resource for me while working through BRCA+ issues. It was really cool to finally meet Andrea and other BRCA+ women like Caroline from BRCAumbrella who I’ve been talking to on Facebook, twitter, and blogs. These women are just as awesome in person as they are online–nay, more awesome.

In sum, I have very few complaints about the FORCE conference. There are a few things I’d like to see more of in the future–greater representation for GLBTQ and non-white women and more on the politics of BRCA/HBOC, for instance–but I think FORCE is doing a truly fantastic job with this event. I hope to make it to #FORCE15 next year, which will be held in Philly once again. I thought that I was well informed about BRCA+ issues, but it’s clear to me that there’s even more to learn.