Sheryl Kraft

freelance health writer

Why I Chose to Have a Prophylactic Mastectomy

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Angelina Jolie was not the only one to choose a prophylactic mastectomy.

I did, too. – but for different reasons. (Thank you, Angelina, for making it public. You’ve given me the courage to write about it for the very first time. And now, I can’t imagine why I was silent for so long).

When I was diagnosed with breast cancer almost 25 years ago, the words “prophylactic mastectomy” were not commonly uttered. Breasts that were diseased were removed; otherwise healthy tissue was left intact.

Since then, a lot has transpired. Some (though not all) physicians advise women who have had cancer in one breast to have the opposite one removed, just to be “safe.”  Many women choose to have prophylactic mastectomies on the opposite breast for psychological reasons: the anxiety that cancer will occur again (though not scientifically based in all cases) is so high to render them unable to deal with the heightened ongoing stress. And we all know what a huge health risk stress can be. The last thing a woman with cancer wants is any more health risks.

Other women opt to have their opposite breast removed so that their bodies feel more symmetrical, or “even.” If they opt for reconstructive surgery, the results will be more esthetically pleasing.

Empowered to make a tough decision. (Photos.com)
Empowered to make a tough decision.
(Photos.com)

And of course, having the BRCA gene mutation, which makes the odds of developing breast cancer climb to dizzying heights, warrants a prophylactic mastectomy, along with other choices like watchful surveillance and/or hormonal therapy.

My decision to have my healthy breast removed came easily to me: I went for my first mammogram after having a mastectomy on my left breast and completing a 6-month course of chemotherapy. Just driving into the parking lot for my appointment filled me with overwhelming weakness and dread.

Words and feelings crowded my mind I entered the double doors of the medical building, as clear as it was happening all over again. (“We need to take more views.”  “Cancer.” “Biopsy.” “Odds.” “Surgery.” “Malignancy.”)

When the technician placed my right breast into the machine and slowly compressed it, I felt faint and numb. When she left the room and came back in a few minutes later to take more views, bile rose in my throat.  “Oh, no,” I thought “I can’t go through this again.” My children’s young faces invaded my sight. The poison words surfaced again.

I waited. I paced. I tore at my ragged cuticles with my teeth. Twenty minutes felt like a full day. It turned out that there was not cancer in my opposite breast, but by the time I found that out I had already decided.

It took a lot of searching to find a doctor who would understand. One doctor dismissively looked me square in the eye and said, “I DON’T remove healthy tissue.” I felt ashamed. Another told me there was no scientific basis for my request. I felt disappointed. Others wouldn’t even see me. I felt angry.

In case you’re wondering, I got tested for the BRCA gene mutation shortly after my diagnosis. I was young when I developed breast cancer (34) and I was searching for a reason. I am of Ashkenazi descent (the mutation occurs more commonly in certain populations, and this is one of them). It turns out I did not have the defect. But that would not change my decision.

A few months later, I found an empathic, experienced reconstructive surgeon who understood how I felt. He did not judge. He did not question. He got it. He would reconstruct my lost breast. He would prophylactically remove my other breast and reconstruct it too.

The healthy tissue was biopsied. There were no cancer cells present.

Peace of mind is priceless.

 

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Comments

  1. Jennifer Wagner says

    I can’t stand when male doctors try to take decisions away from us because they don’t approve. I found a lump that turned out to be benign about 25 years ago. But it got me thinking about breast cancer and I’ve always said to myself that if I ever got breast cancer, regardless of severity, I would have a double mastectomy. Keeping my breasts isn’t worth the worrying.

    • SherylK says

      Jennifer, While I tend toward using female doctors, I”m not sure male doctors are all to blame (although I must admit that I do think a female might be able to empathize a bit better with a situation like this).

    • Sherry says

      Don’t be so high on female surgeons. I had one thinking it would be best she refused me a mastecomy and rushed me into a lumpectomy and radiation therapy. I already had very small breast and had had a lump removed 14 years early. Needless to say the outcome was not pleasant to look at. One year later found a lump in my other breast and again she refused to remove my breast, she did another lumpectomy and that breast was then deformed. The lump ended up being B9 but I found a wonderful male plastic surgeon who got it and understood me and understood why I did not want to wait around and go through cancer again in 15 years when I would be 65. We removed my breast and he built be beautiful new breast. I do not regret my decision at all

  2. Anne Louise Bannon says

    I’m glad Ms. Jolie gave you the courage to write about such a difficult decision. When I first heard about her surgery, I winced because, frankly, I don’t really want to know about celebrities’ private lives. But sometimes, it is good when a celebrity uses the bully pulpit of her fame to bring a real issue to our attention.

    • SherylK says

      I agree. Celebrities, after all, do get the spotlight and have a unique opportunity to voice their opinions to people who are anxious to listen.

  3. Sharon Greenthal says

    I applaud your choice to do what made you feel safe and comfortable. People have all kinds of plastic surgery to fix physical problems, and if removing your breast is what you needed to do, then so be it.

    I don’t think insensitive doctors are only male, by the way. I know plenty of good, caring male physicians.

    • SherylK says

      Thanks, Sharon, and I agree that there are good, caring male physicians around (like the doc I found to help me). But I can’t help but feel that in a situation like this, a female might just be able to better relate.

  4. Walker Thornton says

    Sheryl,
    Good for you for taking the steps to assure your own safety and continued health. I’ve never had breast cancer but I did have one ‘bad’ mammogram that led to several more, including them sending for a Dr. to look at the films…scared me to death!
    I think we have to do what we know, on an intuitive level, what is right for us. No doctor can understand that…and I’ve learned that their training often leaves them a little inflexible and narrowly focused.
    And, thank you for sharing this story–you will give courage to other women, I have no doubt.

    • SherylK says

      Thanks, Walker. A ‘bad’ mammogram is so, so frightening and that fear stays with you for a long time, doesn’t it?

  5. audrey says

    You have really moved me. I can’t even begin to imagine the turmoil you must have felt. And you have motivated me to get a mammogram! Thank you!!

  9. Ellen Dolgen says

    Sheryl – It took such courage it took for you to do this and SHAME on that doctor who made you feel ashamed to have asked him to do what you thought was best for your physical – and mental – well-being. Thank god you found a dr who not only would do the procedures you needed but who didn’t make you feel negative about your decision. I have heard similar stories from women who had subpar experiences with doctors as they seek help for menopause and perimenopause – we women know our bodies better than anyone else. Ladies: it’s SO important to find the right doctor for YOU; please don’t settle for anything less – this is your HEALTH we’re talking about! Sheryl – thank you so much for sharing your wonderful story with us.

    • SherylK says

      Yes, Ellen, finding the right doctor that you can communicate with makes all the difference. Sometimes you have to kiss a lot of frogs…

  10. Cathy Chester says

    I am so proud of you, Sheryl, on so many levels. First, that you made the difficult decision to have the mastectomy done, and to keep advocating for yourself until you found someone who understood your needs. I am also proud of you for writing this post, putting it out there for others about your very personal experience. In the end, it will help women who are going down the same path you did. Last, for the warm, kind person you are, in sharing a piece of yourself for us to have. And for letting us know, once again, what a wonderful woman you are. Kudos.

  11. Amanda Fox says

    You are so right – peace of mind is priceless. And since stress can cause all sorts of things to happen, I say do what you can to get rid of it. Thanks for sharing your story. It is so important.

  13. Marcia Cronin says

    Sheryl, I know a lot of women can identify with your experience in facing breast cancer and will appreciate you sharing your feelings and will draw strength from your courage. It is such a tough and personal issue, and every woman has to do what feels right to them, with the advice of health care professionals that they trust. My mother died of breast cancer at 64, and I once had an uncertain mammogram (which had me crying for two days until it was resolved), so I live with some degree of fear, too — though nothing like what someone experiences when they’ve actually been diagnosed with breast cancer or tested positive for the genetic mutation. I’m sure the decision to have a prophylactic mastectomy is not easy, but a life of stress and fear is not easy or healthful either, as you so poignantly express. Thanks for sharing.

    • SherylK says

      Marcia, So sorry about losing your mother at such a young age. And I agree, there is no one-size-fits-all decision; we all have our own personal feelings to consider when making a decision like this.

  16. merr says

    I read the article on the front page of HuffPo. What a great piece about something I have thought about.

  17. Rosalba Gordon says

    We need more women like you to encourage us to take hard decisions! Thanks for this post that is going to help many sisters that are in the same situation.

  18. Kerry Dexter says

    Your example and Angelina’s will help people in areas beyond breast health too. I’ve a friend who, like you, was in her thirties when diagnosed with breast cancer. I recalled things she’d said about living with fear and uncertainty and finding her way years later when I was faced with a very different sort of health situation. Your words will reach farther than you know.

    • SherylK says

      Kerry, Thanks for sharing that. I do hope my words will help other people when they’re faced with having to make a very important health decision.

  20. Vera Marie Badertscher says

    How courageous you were to insist on what you knew in your heart was right. I have caved on important decisions about my health in the past, and need a good example like yours to give me courage. Thanks.

    • SherylK says

      Thanks, Vera. Hopefully next time there will be no caving. Your health is too important not to stand up for it.

  21. ruth pennebaker says

    Thank you for being gutsy enough to write this, Sheryl. I hadn’t realized our situations were so similar. Knowing I’d have a total breakdown if I ever had to have another mammogram, I opted for an immediate bilateral mastectomy — and have never regretted it.

  22. Rob K. says

    Seems I am the only male to comment…As the husband of a wife who recently survived a difficult bout with stage 3 lung cancer, and whose family is full of breast cancer on both sides, getting the BRCA test has recently come to the forefront, on advice of her (female) doc. I cannot imagine having to make the choice to have the test, and the courage to take the next step if that’s what she chooses. Perhaps the only silver lining may be that our insurer will pay for the test….our hearts and prayers go out to the 45 million americans who don’t have that option….to our “friends’ on the Repub side of the aisle….” why would we possibly need Universal health insurance in
    america….?????

    • SherylK says

      And thanks, once again, for being our male voice. So sorry to hear about your wife’s struggles, Rob. Glad your wife has the option for the test; my best wishes go to both of you, whatever you end up deciding.

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