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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In Memory of Elisha Neave

Elisha Neave passed away yesterday. I wrote about her and her sisters recently here.

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I have been thinking about Elisha a lot lately. I did not know her personally, but her story struck a cord with me. I’ve been sitting in doctors’ offices waiting to find out if I have ovarian cancer, and I’ve been thinking about Elisha all the way down there in Australia struggling to survive a rare and aggressive form of it that she was diagnosed with at just 33 years old. Every time I’ve told a friend that I’m being screened for ovarian cancer, I’ve told them about Elisha.

Because it’s not supposed to be like this. Even BRCA+ women, as unlucky as we are, are supposed to have more time than Elisha got. In the United States, the standard of care for BRCA1 women is oopherectomy by 35 years of age. Women with a BRCA2 mutation, like the Neave sisters, are supposed to have even more time before removing their ovaries and facing surgical menopause. BRCA2 mutations have a lower risk of ovarian cancer, and it typically strikes BRCA2 women at a later age than BRCA1 women. In fact, I’ve heard doctors comment that they’ve never even seen a case of BRCA2 ovarian cancer before the age of 50 in their practices.

So Elisha Neave delayed oopherectomy in her early 30s because she wanted to have more children. It was an emotional decision, but it was also a rational one based on solid medical evidence. She ought to have been safe; she wasn’t. BRCA+ women are never truly safe from hereditary cancers and almost everyone in the HBOC community knows at least one BRCA2 woman who has had ovarian cancer before the age of 35.

I am struck, once again, by the great injustice of all things BRCA. We should not have to watch our loved ones die of these cancers. We should have better choices for managing the risks of these cancers. We should be able to prevent these cancers. We should have more effective ways of detecting these cancers. We should have better ways of treating and curing these cancers. Twenty years after the discovery of BRCA2, we don’t have any of these things.

Every time I hear about the death of a BRCA+ woman from breast or ovarian cancer, I am forced to relearn these lessons. That I am not safe from my own body. That I cannot protect my loved ones from the genes we share. That life with a BRCA mutation is hatefully unfair. That all the things that I viscerally feel “should be” or “ought to be” are not, in fact, assured.

 

The Neave Sisters

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I recently purchased Veronica Neave’s Pieces of Me, a documentary companion film  to her autobiography about her family’s experiences with BRCA2. Unfortunately, the DVD is coded for a different region and won’t work on my American DVD player (digression: DVD regions are a total scam). I found part of the film on YouTube, so you can watch about a segment in which the BRCA+ sisters grapple with how to manage their risk. At one point in the film, Veronica Neave says “knowledge is a gift–or so I thought” and notes how difficult it is to figure out to what to do with the knowledge of being BRCA+ when the options for managing high risk are so “barbaric.” I couldn’t agree more.

I am really disappointed that I can’t watched the entire movie, because Veronica Neave and her sisters Chrissy Keepence and Elisha Neave have such an amazing rapport and they instantly won me over (incidentally, Chrissy is wicked stylish). But in my quest to find the film online, I fell down a YouTube rabbit hole. It turns out that the Neave sisters often appear in the Australian media to discuss BRCA+ issues. You can find a really great interview with them here and here that was filmed some time after Angelina Jolie announced her mastectomy.

The interview reveals that Neave’s mother Claudette is fighting a recurrence of breast cancer, her youngest sister Elisha (who in the film put off prophylactic surgery because she felt that she had more time) was diagnosed with ovarian cancer at 33, and her father has also recently passed away. This is what it’s like to be in a cancer family: there is no reprieve.

The account of Elisha’s experiences with ovarian cancer is particularly gut wrenching (follow up on her here and here). It seems noteworthy that in the two BRCA1/2 documentaries that have been made–Pieces of Me and Joanna Rudnick’s In the Family–women in their 30s delayed prophylactic surgery and then faced cancer diagnoses a few years latter (in Elisha’s case ovarian cancer and in Rudnick’s case breast cancer). Mastectomy and oopherectomy are obviously very difficult, very personal decisions and not everyone chooses to go those routes. However, these films suggest that if you have chosen surgical risk reduction, then you should act sooner rather than later at the same time that they show that actually following through with surgery can be easier said than done.

Adding to the complexity of this issue is the fact that prophylactic mastectomy is considered “elective surgery” in Australia and not covered by the healthcare system there. This situation puts an appalling financial burden on BRCA+ Australian women to pay for their own risk-reducing surgeries if they can. In worst case scenarios, it makes risk-reducing surgery unavailable to those who can’t afford it.

UPDATE: I just discovered that you can rent the entire film on Amazon. Woot!