Fall woods

Fall woods

Friday, March 27, 2015

No-Brainer

I'd be the first to tell you that Angelina Jolie is just that little bit (or a lot, sometimes--that whole vial of blood necklace thing) too weird for me.  Staggeringly beautiful woman and all (although she desperately needs to eat a hamburger or twenty) but about as relatable to me as an alien.  That said, I've been taken aback by the criticism she's received for her decisions to prophylactically remove her breasts (two years ago) and ovaries (recently) because of her discovery that she carries a mutation in the BRCA1 gene.

Breast cancer research was my professional field for years.  The BRCA1 gene (a massive one, by the way) is considered a tumor suppressor gene and its protein product helps to repair damaged DNA or trigger self-destruct pathways in cells with DNA that cannot be repaired.  Hundreds of distinct DNA mutations in this gene have been identified, many of which are associated with an increased risk of cancer.  Logical: some DNA damage is inevitable, and failures in any part of the repair/cell death pathways are never a good thing.   A mutated BRCA1 gene generally results in a protein that is either abnormally truncated (shortened) or full-length but non- or only partially-functional.  It's worth noting that there is another similar gene called BRCA2, the protein product of which performs a similar function and is often also associated with failures in DNA repair and therefore cancer development.  Certain variations in BRCA1 and BRCA2 gene sequences are associated with absolutely staggering risk increases for breast and ovarian cancer in particular: depending on the mutations in question, over 80% risk of developing breast cancer and 55% risk of developing ovarian cancer.  These mutations are typically hereditary, which is why doctors ask about family history for these cancers (and other cancers in general) and why people with strong family histories of breast and ovarian cancer should strongly consider being tested for the presence of these mutations.

Ms. Jolie's mother, aunt and grandmother were all lost to ovarian cancer.  She had herself tested for BRCA1 mutations, and the test came back positive.  That put her at a huge risk for developing one or both of these cancers, and probably at a relatively young age (her mother died of ovarian cancer at 56) but at least she knew that.  Information is power.  Breasts are relatively easy to monitor through imaging, and they are conveniently located on the exterior of the chest wall, where they can be palpated.  Ovaries, on the other hand, are not conveniently located.  What's more, there are currently no truly reliable markers for ovarian cancer in blood testing.  CA-125, the most commonly used one, is especially poor at identifying the presence of early-stage ovarian cancers, which are the only kind that are really curable or even treatable.  Ovarian cancers generally are asymptomatic until very advanced, so watching for symptoms is pretty much useless and that blood test isn't much better.

Nobody wants to have to make decisions to have what appear to be normal, functional body parts removed.  I can't even begin to imagine all the body image and sexuality and gender associations there would have to be with choosing to have a good chunk of your female reproductive system removed, never mind all the practical aftereffects (hormone replacement, etc) that come into play post-surgery, since ovariectomy catapults you into menopause.

That said??  If it were me, I'd have those suckers off/out in a heartbeat.  I'd be on the phone scheduling the surgery the day the DNA test results came in.  And I'm pretty sure I wouldn't have waited the two years between the mastectomies and the ovariectomies if I were her, either, knowing that my mom had died of ovarian cancer and that ovarian cancer is both terrible and hard to detect.  Why live with the knowledge that there is a ticking time bomb inside you with a high-percentage chance of explosion when you don't have to?  She made some tough decisions, but I'd have done the same damn thing, and I applaud her courage and also her decision to make the surgeries public information.

I am, in general, notoriously ANTI-celebrities delivering any kind of health message whatsoever (see e.g. that dipshit Jenny McCarthy and all the damage she has done to legitimate autism research and vaccination percentages) but in this case, I think her message is measured, scientifically legitimate, and a genuine public service.  If so much as a single person read one of her NY Times articles and said, "You know, there have been a lot of breast and ovarian cancer deaths in my family: maybe I should go get screened," that's a victory regardless of what decisions they make after they receive the DNA test results.  In the end, health information is power, and sometimes what you don't know can have devastating consequences.




    

4 comments:

  1. Very well said!

    To me she's not so alien - she's a normal human being with passions and flaws, quirky and makes mistakes but I think has a good heart as demonstrated with the massive amounts of volunteering she does for good causes and her love of her kids.

    I would have struggled with the decision much more than you. A few years ago I had a massive fibroid but doctors could not figure out what it was and they wanted to cut me open and remove my uterus and anything else around to get rid of this strange thing. It took a lot of visits to find a doctor who would be more conservative - open me up, look around, test me for cancer, act accordingly. She said, "If it is cancerous, I will remove everything that it could have spread to," and that was our compromise. (She also saw that I have pretty serious endometriosis and asked how i was not regularly crippled with pain. She also upon my request took lots of polaroids of it all, which is so bizarre to see and sure used to freak people out when I'd show them.)

    But the point is, removing organs from my body that I have "no use" for, including a uterus when I have no plans to get pregnant - yes. I didn't want that. And you recognize the complexity of that decision. I don't know what I would do if I were Angelina in large part because I don't have children and I'm not responsible to be alive as long as possible. I mean, I would like to live long and prosper, but I don't have moral imperative for that which comes with parenthood.

    I haven't followed the Jolie backlash at all this time 'round, but I think that what really bothers me is that people think they can police her body. She's a celebrity so they own her? Of course it goes much further than that, with the public thinking they should get to make all sorts of health choices for all sorts of women.

    I believe that she made a reasoned decision that was best for her, and I applaud her for doing that and potentially helping other people.

    Thanks for your research-based perspective to show how really significant this genetic aberration is.

    I got tested some time back - I was mostly interested in my ethnic heritage but they also do lots of other tests. I'm negative for so many things like this, which is really a nice weight off my mind. I think the worst thing that I show a proclivity to is kidney stone. Of course I can still get cancer or any number of other things, but they're more within my range of prevention and less pre-destined ... and to tell the truth the tests made me get much more serious about retirement planning and the like, realizing that I'll likely be around for a good long while.

    The more you know! Information is a very good thing indeed.

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    1. Also, I lost a dear friend to ovarian cancer almost ten years ago. I often feel her with me. If I had tested positive for that mutation, I have no sense that her spirit or whatever it is would have mercilessly scolded me until I had removal surgery. She was that kind of friend. I really miss her.

      And one other thing - when I had my surgery in 2008, it took me two full years to recover. I don't know if it was reaction to anesthesia or what, but my brain was so foggy and my body didn't work right for two years. I never would have agreed to another surgery before I felt recovered from the first if I could avoid it. I can't imagine how much energy it takes to parent six young children, but it's more energy than I have even at my peak much less post-surgery.

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  2. I'm glad it came across that my major concern is that people have the information they need to make the best medical decisions they can for themselves, based on their own individual level of comfort with risk and medical intervention. The fact that my own personal tolerance level for medical risk is low and that I would have done the same things she did (the "watchful waiting" approach wouldn't and doesn't sit well with me) doesn't mean that it isn't ok for others to make different decisions for themselves. You'd never want to have to make the decisions she faced, but I think some of the critics just don't understand the science and others feel like they have the right to criticize because she chose to make her decisions public and she's a public figure.

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    1. Yes - I completely agree! Well reasoned! Honestly, I don't fully understand the science because it doesn't directly affect me - and that's why I keep my mouth shut on the issue.

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