Angie’s Choice

I know, I know, we don’t need yet another blog post about Angelina Jolie’s decision to undergo a prophylactic bilateral mastectomy. She doesn’t need any more attention.

But that’s exactly what drew me to write this–she doesn’t need any more attention. She didn’t have to write that graceful and lovely piece for the New York Times. She could have gone on being one of the world’s most famous women without sharing her secret. But she chose to tell us about her medical choice, in the hope it would help other women.

As usual, people who know absolutely nothing about what it’s like to lose a loved one too young to cancer, who know absolutely nothing about being told you have a genetic time bomb ready to go off–87 percent chance, anyone?–decided to judge her choice.

I have a message for people of the judgmental persuasion. Until you know what it’s like to hear the words “You have cancer,” or to lose your mother or sister or daughter to it, you don’t get a vote. (Even then, you don’t get a vote; but you’re far less likely to want one.) Check the beam in your own eye, if you tend toward the Biblical. If you don’t, let me put it in language you’ll understand. Shut. The. Fuck. Up.

I said it in my 10 Commandments of Breast Cancer and I’ll say it again: Thou shalt not judge someone else’s treatment or reconstruction choices.

My own choice: I had no family history when I was diagnosed five years ago so I opted not to get genetic testing. I also opted for a single mastectomy for DCIS. I know of many young women who opted for the bilateral in that situation. They did what was right for their specific situation and risk tolerance; I did what was right for mine.

One thing I wish I’d seen covered more: Ms. Jolie mentioned how expensive the BRCA test is, more than $3,000; so did a couple of TV stories I caught, but didn’t mention why.

The reason it’s so expensive is because Myriad Genetics owns the patent to the gene, effectively preventing researchers from coming up with other, possibly less expensive alternatives. The case is before the U.S. Supreme Court right now, and I’ve read that the Supreme Court is skeptical of Myriad’s argument. I hope their skepticism translates to a ruling against Myriad.

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25 thoughts on “Angie’s Choice

  1. Whoa, Jackster….. I Love This… Especially the F bomb which I don’t think I’ve ever heard cross your finger tips…

    Myriad is going down. There was a mention of the Supreme Court case in a CNN piece I saw. I wish Angie had stepped out on to the stage in advance of April 15th. Now THAT would have created quite a ruckus on the steps of the high court!!!

    Giant Hugs…

    AnneMarie

  2. Like the 10 commandments. Feeling like a freak lately for getting just a lumpectomy after chemo shrunk my bigass stage 3 lump down to teeny weeny. Everyone else gets mastectomy it seems.

  3. Like AnneMarie, I loved your use of the F bomb. Very appropriate. This is truly a wonderful post. I agree that it’s a personal decision whether to get a mastectomy or any kind of surgery. People should not judge a person’s choices. We have heard the words “You have cancer.” We know what it’s like to live with a haunting sense of the unknown. And you’re right about Myriad. It’s downright unethical.

  4. Amen is right! And I so applaud Angelina Jolie. She has proven herself more than a pretty face and accomplished actress; she has risen to the role of ‘dialogue maker’ which is pretty hard to do in this over-stimulated Fox News stupid world.

    One ‘Commandment’ I would like to add to your list; that a LOT of doctors have no clue what they are talking about, they believe quite possibly statistically skewed, mis-interpreted or faulty studies are the be-all and end-all, they think alternative therapies are junk science when they may indeed not be (it’d be nice if as much money was given to research the nonpatentables as the money-makers) and many doctors are sadists and worse. I’m not kidding.

    As someone who was just told by an Oncologist that having bilateral prophylactic mastectomies after a cancer diagnosis on one side would be ‘like having your foot amputated for a splinter in your toe’, I told him in no uncertain terms that unlike my 60 year old breasts, I was USING my foot thank you, and a splinter doesn’t kill. I then told him he was a consummate asshole and to NEVER, EVER, talk to a patient that way again and his understanding of analogies was, well, quite faulty to say the least. I then fired his sorry ass.

    Sorry, I’m venting. 🙂

    Since my insurance won’t pay for BPM (only on the side that has already had a lumpectomy and I’m surprised they said okay to that); I’ve adopted a ‘wait and see’ attitude for now. If there’s ANY occurrence on the contralateral side or recurrence on the lumpectomy side, I’m going to go full-on for bilaterals. Damned if I’m gonna worry on a daily basis that some fatty tissue that I’m not using is going to try to kill me or that I should ‘save’ it cuz of some jackass like Hugh Hefner’s overwhelmingly sexist impact on society.

    Would we be having this incredibly emotionally heated conversation if one out of eight women had the chance of having gallbladder or appendix cancer and opted to have it removed prophylactically????

    • Wow, good vent! I agree we would not be having this emotionally heated conversation if it were a gallbladder. Funny you should mention that because I also have used the gallbladder analogy. I had my gallbladder out a year after my mastectomy and the decision making process was so different. I had some angst around the mastectomy because I couldn’t get my mind around something that seemed so drastic for a stage 0 cancer. No thanks to Hugh Hefner 🙂 I think that’s another aspect of Angelina Jolie’s story that has gone largely unremarked. I initially referenced it and then deleted it. She has been named one of the world’s sexiest women, and for her to choose the best shot at a long life by removing body parts society defines as part of a woman’s sex appeal, that’s a powerfully positive if subliminal message too. Clearly she is not defined by her breasts. And if she’s not, we don’t have to be either.

      I like your 11th commandment too. A little respect from a doc goes a long way. My oncologist told me he would support me if I opted for radiation and lumpectomy, even though he recommended a mastectomy. My first oncology consult was all about what I “must” and “should” do. I didn’t fire her to her face but I voted with my feet and found a new oncologist.

      Thank you so much for stopping by and commenting.

  5. Thanks Jackie! It’s been an interesting last couple of months doing the research on a topic I had until then given very little thought to (no cancer history at all in the family, I guess I thought I was relatively immune…). I *have* had numerous surgeries from tonsils as a child to gallbladder to Crohn’s surgery to a hysterectomy for fibroids and I don’t fear surgery at all anymore. I actually kinda like it, in a weird sort of way. Maybe it’s because of all the attention and the altered state of consciousness that is anesthesia and hospital routine (and Toradol! 🙂 But I learn something about myself and ‘western ways’ each time. I find them and me, lacking. There’s so much more to life and the universe than we pay attention to in this society.

    Once I got past the !!!! reaction to bilateral mastectomies, and saw some brave people’s pictures of aftermath posted, and realized that it probably wouldn’t be too much different then back when I was nine years old and could sleep on my stomach without two 44DDs in the way, well, it didn’t seem like such a bad option… I just don’t want to be lopsided, thank you very much, and still have the worry associated with one side waiting to bite me, the mammogram radiation exposure still, all of it. F’ It!

    And oh, by the way, that evil moron Oncologist also made a point of telling me that since I was eschewing his beloved multi-hundred thousand dollar toxic chemo and radiation that ‘well y’know, there’s a morbidity rate with surgery…’ I told him that the morbidity rate of surgery is in the first few hours of the procedure, not a real issue with someone as otherwise healthy as myself, I’m not an anesthesia risk at all, and ‘oh by the way, the ‘morbidity risk’ is more for the reconstruction procedure, which I’m not asking for’… (the you asshole! was unspoken but implied). There was quite obviously no discussion whatsoever of the ‘morbidity risk’ of chemo and radiation. I saw a lot of it out in the waiting room, however.

    Thanks for letting me vent, this is very therapeutic! 🙂

    May we all have long, happy, healthy and joyful lives.

  6. Well said Jackie!!! No one knows what they will do until they ate faced with those 3 words….you have cancer. It is scary. I am a survivor and I had that test done. 50% chance that it will reoccur in the next 10 years. I hope and pray every day that o don’t have to hear those 3 words again.

  7. Love it. Its amazing the stupit things people say. And yes it is nobody buisness what anyone does and nobody has the right to judge what we do. It is a huge, huge dicesion to make and we should be supporting each other. Cancer comes in all forms and nobody is immune to it, whether they are rich, poor, famous ….. Another girl who has chosen the same path is Michelle Heaton. What really jumped out at me was the support they got from their partners. Jackie you have no idea how many times I have wanted to use the F bomb but have smiled and said nothing especially when someone says ” sure your alright now” I wander how many times this will be said to Angelina? its not the flu we had. thanks for writing this

  8. OUTSTANDING, Jackie!!! One of the best uses of the F*Bomb, ever (and I am also a public/media relations professional … well … when I have a job).

    I knew the idiots would come out on this. I’ve heard everything from “she’s only defending a high priced boob job” to some nincompoop referring to it as (wait for it …) “The Angie Gene”. Seriously? GAH!!!

    I do applaud her for speaking out and not exploiting it on a reality show (hello, Giuliana Rancic) and then launching a fashion line and “giving back” 1% of sales. However, I wish she would have pushed the envelope just a tiny bit more on the cost of BRCA testing to let the world know about Myriad’s patent. (FYI, just today, Peggy Orenstein googled “Myriad Genetics and Komen” and was shocked to find a connection there). Brinker showed up on Piers Morgan Tues night lamenting that genetic testing “should be more accessible to women”. #DontGetMeStarted

    Three other issues that have NOT been articulated well in my opinion:

    1) A mastectomy, whether single or double, severs the nerves of the chest and leaves the breast and surrounding areas without feeling. Permanently. Imagine having your foot fall asleep in the shape of a tennis ball strapped to your chest — that hardly does it justice. SOMEONE NEEDS TO TALK ABOUT THIS (and yes, that includes your nipples; even if you spare them, the Will Not Work).

    2) To borrow a line from our lovely AnneMarie, when it comes to BRCA testing, “Positive is bad and negative is just useless”. I have lived this. Strong family history (mother had BC at 45), her sister had it in her early 60s, and my father had prostate. Other relatives had related cancers. Ironically my BRCA test was scheduled for the Friday of the week I was diagnosed with BC (that’s a long and surreal story) so I was set the minute I was diagnosed and I was strongly encouraged to get tested.

    I tested negative (and as it turns out, my mother had secretly gotten tested to surprise me a few weeks prior and she was also negative). Ken Offitt, MSKCC’s Genetics Chief explained, “there is something causing all this cancer in your family; we simply haven’t identified the mutation yet”. BRCA 3, 4, 5, etc may or may not ever be identified.

    Hence, the dilemma of “BRCA Inconclusive” as we prefer to call it. Such women are faced with a horrible choice if and when they are diagnosed with breast cancer — almost as bad as testing positive before even having it. The only choices are bad and worse. Unlike a BRCA positive patient, you don’t know for certain what caused your BC and you have to roll the dice in the dark to decide if you might have an as-yet unidentified mutation. And for most, “watchful waiting” isn’t an option psychologically. I’m not a doctor, but I dislike that choice because once you have cancer, there is ALWAYS a chance it can spread and/or metastasize years later, despite how “early” it is caught and treated. But few talk about this and this MUST be better communicated. Bilaterals (may) offer some women peace of mind, but they DO NOT protect anyone from metastasis. I’ve actually met women who have no idea what metastasis is, despite having had breast cancer. Which brings me to my final issue …

    3) Despite the wall-to-wall media coverage, nothing that I’ve seen or read connects the dots to the diagnosis and death statistics. Yes, Real Housewives and Honey Boo Boo have dumbed us down, but there is a HUGE disconnect here. Women aren’t dying of Stage 1, 2, or 3 BC. They are successfully treated and live their lives until one day, they’re not. Unless they are diagnosed at Stage 4, they are dying from an earlier BC that has metastasized. Some will benefit from treatments to keep the inevitable at bay as long as possible. But we all know to well how the story eventually ends. #FearlessFriends

    By and large, the women (and men) I’ve met through social media crave knowledge and information. They WANT to know everything about their disease. Maybe some don’t … and I am not judging that; it’s frightening and I know it still keeps me up at night at times. But when the media speaks of risks in generalities and cites women dying from BC, the details need to be made more clear. We don’t simply “lose” 40,000 people a year. There has to be a better way to articulate this biology and paint a clearer public picture because something is completely absent from the conversation.

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