So ok, this is going to be a long, rambling one. . .
I didn't start this blog in order to document a Lorenzo's Oil-esque medical quest. It was supposed to be about my "feelings". (Yes, even mutants occasionally have "feelings".)
When I first "found out", my initial reaction was "I want these ovaries out NOW." The boobs could wait. This was the approach suggested by the genetics counselor and more obviously advanced by doctors at the major cancer center where I have been seen. It is certainly obvious and rational. Consider:
1. I perceive ovarian cancer as a much greater threat to my life than breast cancer. My beloved auntie died of ovarian cancer in her early 50s so personal experience definitely colors my perception of risk.
2. I worry about ovarian cancer actually killing me much more than breast cancer even though my odds of developing breast cancer are actually much much higher (about 85%) than my odds of developing ovarian cancer (about 45% for my mutation, but I get a deep discount on that because I used birth control for many years so my personal risk is about 25%). For one thing, unlike breast cancer, there really is no effective early detection for ovarian cancer. Dr. Statistics told me that in BRCA women following close surveillance, 90% of breast cancer is detected in a "curable stage". In contrast, at least 50%, and perhaps 75% of ovarian cancer is found "too late", despite surveillance.
3. Bilateral salpingo-oophorectomy (BSO), especially if done before age 40, has been shown to dramatically reduce the risk of breast cancer in BRCA women - by about 50%, thereby further obviating the absolute necessity for prophylactic mastectomy.
These are all very legitimate arguments in favor of BSO in accordance with the prevailing medical orthodoxy which for BRCA1 mutants like me is "upon age 35 or the completion of childbearing". I'm 40. If the three little maniacs that occupy my home are any indication, I've "completed childbearing". So there you go. And in fact, my initial game plan was to arrange for BSO this fall (it is surprisingly minor surgery), take HRT thereafter, and get on with my life. I'd give further thought to prophylactic mastectomy thereafter. It seemed pretty straightforward.
But the more I've thought about this, the more obstreperous I've become about the whole thing. Before I renovated my kitchen, I spent hours comparing the relative merits of granite vs. corian vs. poured concrete vs. butcher block. (I went with the granite and I've never regretted it.) Didn't I owe myself far more due diligence with respect to a decision that would have an irreversible impact on my life?
And so I began spending lots of time with Dr. Google along with frequent trips to the FORCE message boards. The point of all of this, at least in my mind, was not to find a way out of the BSO per se. I WILL have my ovaries surgically removed from my body at some point, probably before I am 45 - 46 or so. However, the real question for me became about TIMING. WHEN? Did I really have to do this TODAY?
As I began to sift through all of the information I could get my hands on and I began to consult with doctors, other facets of BSO and in particular, the TIMING of it, began to emerge that I felt I had to consider. Here they are for your perusal, in no particular order:
1. Oophorectomy at a young age (say prior to age 45) does in fact shorten a woman's life expectancy, especially if HRT is not used. This is not even medically controversial. This study, of course, was not of BRCA women who are basically already fucked anyway in terms of life expectancy. But the fact remains that even though I am a mutant, my heart, my brain and my bones work just like everyone else's. Even in a mutant, these physical systems will not work as well by being hormonally deprived at a young age. This leads us to my second conclusion:
2. The optimal timing of prophylactic oophorectomy in BRCA1+ women has never been established. The age of 35 is chosen because that is youngest age that a BRCA1 mutant has a reasonable risk of ovarian cancer, although it is still very, very low at that point. It seems to me that the objective of picking 35 is to insure that just about nobody gets ovarian cancer. Good. That would be the correct objective if there weren't significant collateral damage from these surgeries. However, there are significant drawbacks to this surgery at such a young age, both in terms of quality of life issues and in terms of long term life expectancy and health.
3. At least in my experience so far, doctors consistently downplay the impact of surgical menopause on a woman's overall quality of life, and in particular on her sex life. In my personal experience, the doctors have make it sound like the biggest problem I'm ever going to have after the surgery is picking out a favorite vaginal lubricant. There really isn't much out there on the whole quality of life after BSO issue and the little that exists is really "survey" research that stands for the proposition that the answer that you get depends upon the question that you ask.
Google "prophylactic oophorectomy and quality of life" and what you will find is that all of the studies, without exception, concede that women who have this surgery are significantly sexually compromised. And let's understand what loss of libido means. In my experience, for example when I was breastfeeding (which is a good example of what happens to me when my ovaries go on vacation), I had no interest in having sex. ZERO. In fact, I had an active desire NOT to have sex. So more like zero Kelvin in terms of actual temperature. I think I would rather have renewed my driver's license at the New York City DMV than have sex. (At least at the DMV no one is going to get offended if you read a book while you wait.) Yeah, my vagina was still there so I could lay there making a mental grocery list or deciding upon the color I wanted for next Thursday's manicure (mauve? peach? magenta?) but I wouldn't describe that as sexually functional.
4. My odds of actually getting ovarian cancer within the next five years, say before I'm 45, are still very very low, maybe 5% maximum. But again I get a deep discount on that because I used birth control pills for many years. Any risk at all is still terrifying but let us not forget that (i) the majority of women who get ovarian cancer are NOT BRCA carriers, (ii) all women have a lifetime risk of getting ovarian cancer of 1.5%. There is no getting around that and nobody is advocating oophorectomies for everybody (at least not anymore), and (iii) BRCA carriers who do have BSO still have a lifetime risk of 1 - 3% of getting primary peritoneal cancer which is basically the same thing as ovarian cancer but it arises in the abdominal lining and no one is advocating omnectomies (removing the abdominal lining) for BRCA carriers. The point of this discourse is to say that once you get your risk factors down to the low single digits (or, I should say, while your risk factors are still in the low single digits because there is no question that my personal risk is rising as I age), it is entirely rational to take a "just live with it for now" stance rather than rushing into irreversible surgery.
5. The most recent research on BRCA ovarian cancer shows that many of these "ovarian" cancers, if not most of them, originate in the fallopian tubes, not in the ovaries.
I think this point is important enough to quote directly:
This recognition that fallopian tube cancers represent the majority of clinically occult malignancies identified in RRSO [risk-reducing salping-oophorectomy] specimens led to a novel hypothesis of pelvic serous cancer pathogenesis, which posits that a substantial proportion of what has previously been classified as "ovarian cancer" may, in fact, be carcinoma of fallopian tube origin (8), an observation that may profoundly alter the paradigms related to ovarian cancer etiology and management.
Therefore, it stands to reason that the already low risk that I have (for the next five years) can be reduced even further by salpingectomy alone (having just my fallopian tubes removed now and the ovaries removed when I am 45.)
As I synthesized these considerations, I started to think that the decision set really boiled down to three alternatives:
1. Hold Em: Do nothing now and sweat it out for five years with the "surveillance", i.e., ultrasounds and CA-125 levels every six months;
2. Fold Em: Have the BSO now, use HRT to deal with the worst side effects of the surgical menopause, and hope for the best with respect to all of the unknowns; and
3. Bluff: Go with a salpingectomy now and take the ovaries in five years.
Option 1 maintains me intact but offers me zero risk reduction. Option 2 maximizes my risk reduction to the fullest degree possible but may compromise my life in many ways that are difficult to quantify. Option 3 splits the difference - no quality of life impact, but it may or may not reduce risk.
Of course what is so appealing about Option 3 is that it seems to offer some sort of a hedge. In my view, whether salpingectomy actually reduces risk or not, it still provides an opportunity for the surgeon to go in there with the laparascopic camera, which is infinitely superior to the dildocam, and get a good look around. If anything suspicious is seen or found on the pathology of the tubes, I can have the BSO. If it looks good, I probably will have bought myself some time.
In fact, it seems so plainly obvious to me that salpingectomy made sense that I realized that someone in the BRCA community must have already thought of this. So I posted an inquiry on the FORCE message boards asking that very question. Sue Friedman, the founder of FORCE, and a stalwart pillar of support to all of us mutants, posted the following reply:
I specifically asked this question of noted
gynecologic-oncologist Dr. Elizabeth Swisher from University of
Washington who presented at our conference. She was generous in her
willingness to address the topic. She comments that she has done the
procedure for high-risk women who were unwilling to remove their
ovaries; however she also says the following cautions about it:
"I do not recommend this approach and
BSO (removal of ovaries and tubes) is the standard of care. It is also
a more difficult procedure than straight BSO and I would make sure any
woman contemplating this has an excellent laparoscopic surgeon to do
it. I tell women to ask their surgeon how many operative (non tubal
ligation) laparascopies they do monthly. They should find a surgeon who
does more than one/month. And the same careful pathology should be done
on any salpingectomy pathology."
The research is very preliminary but I'm glad that there are
researchers looking more closely at this (including Dr. Swisher) and
that there are gynecologic-oncologists willing to do this. It is
important for anyone considering this surgery to be aware that not all
BRCA ovarian cancers are thought to arise from the tubes and that the
surgery is more complicated than a BSO.
Hugs and love,
Sue
Thus, what initially seemed like a straightforward decision turned into a morass.
But suffice it to say that I would love to be able to stick with my pair.
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