On ‘Preventive’ Double Mastectomy

Posted on: May 30th, 2013 by
16

Yes, it’s true –

Too many women are opting for prophylactic double mastectomies, even when unnecessary. Breast-cancer hysteria dominates our landscape and is often prompted by unfounded fears rather than sound medical advice.

But it’s also true that many women are making informed, educated choices about getting prophylactic double mastectomies and seizing the reins of their medical care.

I am one of these women.

Although I had a history of breast cancer, I was NED (No Evidence of Disease) at the time of my surgery. In addition, I tested negative for the BRCA1 and BRCA2 mutations.

Yet, in my case, the decision to undergo this surgery was still medically sound.

(I am not trying to persuade others to get double mastectomies. This is a deeply personal choice, and each woman must consult her doctor and make the best medical decision possible.)

I do understand medical professionals’ concerns that too many get this extreme surgery for no good reason. And I understand that there’s no such thing, really, as a preventive double mastectomy because we cannot prevent breast cancer.

I get it.

And I got it. Breast cancer, that is. The only kind I, as a patient, know.

The killing kind.

My First Choice: Breast Conservation

In 2001, I was diagnosed with cancer in my right breast a few months after a mammogram missed my tumor, thanks to my highly dense breasts. I found the tumor during a routine monthly breast self-exam.

My stellar surgeon presented me with choices: a single or double mastectomy, or lumpectomy with radiation. He was a breast conservationist, and so was I. We were on the same page: he explained that studies showed that a lumpectomy with radiation was just as effective a treatment as a mastectomy.

I wanted desperately to minimize surgery and keep my breasts. I made a sound decision: lumpectomy with radiation.

My surgeon tried to get clean margins, but my margins were dirty. A few weeks later, I had to get a re-excision, and he got clean margins. But the second major scoop taken out of my right breast left it quite deformed. Yet, I didn’t want any more surgery than I had to have, so I accepted this deformity – though I wasn’t happy about it. When my misshapen breast healed, I started my regimen of radiation and chemotherapy simultaneously.

I got followup mammograms and, because of my dense breast tissue, MRIs. As my oncologist said, “We don’t want you slipping through the cracks.” I thought I was done with surgery.

I was wrong.

The Road to a Prophylactic Double Mastectomy

It was 2006 when my oncologist called me with the MRI results that would change the course of my medical journey. When I first heard his voice, I expected him to tell me – as he always told me – that the MRI was negative. Instead, he sounded awkward and uncomfortable. He told me that the MRI picked up a significant mass in my right breast.

I can’t explain the terror. So I won’t.

My oncologist ordered an ultrasound of my right breast. I asked the doctor who evaluated the ultrasound what he thought this mass could be. His answer was telling. He said, “Your breasts are so dense, it’s impossible to see what’s going on there.” He pointed out that the lumpectomies made it even more difficult to assess what was going on in my right breast.

My surgeon ordered removal of the mass and a biopsy. The doctor performing the biopsy also remarked that my breasts were so dense, it was difficult to see what was going on.

The good news: the mass was scar tissue from a previous lumpectomy. The bad news: I felt I had time bombs attached to my chest. I already had breast cancer that a mammogram missed. And other test results and doctors couldn’t see what was going on in my breasts.

Scary, scary.

Oh, and the third “lumpectomy” gave my breast freak-show status.

My surgeon and I stopped seeing eye-to-eye. He seemed to think it was acceptable for me to live with a terribly deformed breast that was getting more and more difficult to read, even though that breast had a history of cancer. He thought it was acceptable for me to constantly live with a real risk of “slipping through the cracks” because of my unbelievably dense breasts.

So I thought it was acceptable to part ways with him.

I found surgeons who believed my decision for a prophylactic double mastectomy with reconstruction was, in their words, “medically sound.” So on December 1, 2006, I had my breasts removed with a DIEP flap reconstruction.

It was no walk in the park, and one of the most difficult things I’ve endured.
But the right decision for me: biopsy results on my supposed healthy left breast revealed, according to my oncologist, that my “left breast was filled with cells that like to become cancer.” He was ebullient, saying we had “done the right thing!”

I knew the risks going into the surgery. I knew that a double mastectomy was not 100 percent preventive, that I might have a recurrence. I knew that my right breast would turn out somewhat smaller than my left breast.

A few years and a prosthesis later, I’m doing as well as I can. I know breast cancer can metastasize, and I can still get cancer in my breasts. In addition, I have residual pain that acupuncture has been relieving. My torso has many numb areas. I can no longer run, but I swim and walk. I have body image issues, although they are no worse than the body image issues resulting from three separate lumpectomies – just different.

Breast cancer is complex, as is any surgical decision. There’s no such thing as a preventive double mastectomy, as breast cancer cannot be prevented. All we can do as patients is make the best medically sound decisions we can.

Feel free to share any surgical (or non-surgical) experiences – the good, bad, the ugly, and the beautiful.

Have you had trouble seeing eye-to-eye with any of your doctors? Did a good patient-doctor relationship go awry?


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16 Responses to On ‘Preventive’ Double Mastectomy

  1. Julie Goodale had this to say about that:

    Thanks, Beth. I do not come down in either the pro or con side of the double mast. debate – I come down solidly in favor of each individual making her/his own well-informed, painful decision. You are a good example of this. Thanks for sharing your experience.

    Julie

    • Beth L. Gainer had this to say about that:

      Julie, I’m also not pro or con in this debate. Like you say, each person must make the best, “well-informed” decision. It’s no easy thing to do, and all my decisions have been filled with some degree of pain and purpose.

  2. Scorchy Barrington had this to say about that:

    Beth,

    Thank you for providing this window through which we could understand the deeply personal decision-making process of prophylactic bilateral mastectomy. Women need to take charge of their health–and it is not such as easy as it sounds. The consequences are epic.

    xoxo
    Scorch

    • Beth L. Gainer had this to say about that:

      Scorchy,

      Yes, it is so deeply personal, isn’t it? I am a firm believer that women need to be proactive in their own health. Men, too, for that matter. It is a very, very difficult thing to do, and I deliberated every single medical “choice” that I had.

  3. Nancy's Point had this to say about that:

    Beth,
    This is such an important post. It’s a perfect example of how very complex and personal this decision is. What bothers me most about all this is how some feel they have the right to judge decisions others make. Every woman’s situation is unique and every woman’s decision(s) should be respected. Of course it goes without saying that decisions must be well-informed decisions based on sound medical information. Thank you so much for writing about this.

    • Beth L. Gainer had this to say about that:

      Nancy,

      Thank you for reading and commenting! I don’t like it when people judge; no one has the right to judge someone’s medical decisions. As you say, each situation is unique to the individual. There’s no “right” or “wrong” here — unless there are no medically sound reasons for taking such action.

  4. Elizabeth MacKenzie had this to say about that:

    In my psychology practice, I often tell kids, “There’s more than one good solution to most problems.” Your decision making process describes this perfectly. You made well-reasoned choices at each stage based on risk as well as your own comfort in dealing with the risk. Someone else may have made another reasonable set of choices. Also, I have been avoiding describing my own decision process on my blog out of fear of either being negatively judged or giving the impression that I am questioning the choices of others. You may have inspired me to finally write the post I have been planning for months.

    • Beth L. Gainer had this to say about that:

      Elizabeth,

      Thank you for reading and commenting on my post! Each decision I made weighed heavily on my mind because we patients always want to make the best decisions possible. You’re right about there generally being more than one solution to problems.

      It’s your choice whether to write the post you’ve been wanting to for quite awhile. I would love to read it! I was a little nervous about being judged when I wrote this post, but I figured, all I can do is be honest about my decision and tell readers that this may not be the right decision for them.

  5. Susan Zager had this to say about that:

    This procedure is deeply personal and there is so much that goes in to the decision on top of the fact that the surgery usually comes with complications for so many reasons. There are also so many problems and alarming tests with dense breasts. I am so glad you posted this. Thanks you!

    • Beth L. Gainer had this to say about that:

      Susan, I so agree that this is a personal decision. I am physically and emotionally not the same after the surgery, but for me, to me, there were no better alternatives. The problem of dense breasts needs to be better addressed. I almost slipped through the cracks several times.

  6. Fran Thibadeau had this to say about that:

    I have a somewhat different reason for thinking about an additional mastectomy. My quality of life is absolutely nil due to an early hysterectomy,which was TOTAL, no ovaries, no cervix, nothing left. I was 25 years old when this surgery was performed and I was placed on Premarin 3 days following the hysterectomy., and was on it for 29 years before being diagnosed with breast cancer on February 14, 2006, then I was taken off the medication cold turkey the day of diagnosis. I had a radical right mastectomy less than two weeks after being diagnosed, which was a little too fast for me, but I had NO INFORMATION given to me about how much my life would change after surgery, which was in EVERY WAY POSSIBLE !! I have HOT FLASHES that should be re-named HOT TSUNAMI’S because I am drenched every day, all day long, I am MISERABLE, my sex life is completely over, my skin has changes in epic proportions, my mood swings are ridiculous. My reason for considering an additional mastectomy is this: After being free of HRT’s for over 7 years, my problem gets worse as each day passes. I have no reason to fear cervical cancer if I am to return to Premarin, and if I were to have a prophylactic mastectomy on the left side, I would also have no reason to fear breast cancer, either. This may seem to be a snap and emotional decision on my part, but it is not, because I want some sort of quality of life back in the worst way. I have talked to women who never were never placed on HRT and are still going through menopause after 13, 15 years, with no end in sight for them and I just cannot bear to think of going through this much longer. I used to take a lot of pride in my appearance, but I am beginning to look like my GRANDMOTHER, not my Mother, and saw a photograph of me today, which if you were to place two photographs side by side, My grandmother and me, you would have a very difficult time telling us apart. The discomfort is disabling, and the future doesn’t look very bright for me right now. I know that those of you who are suffering Stage 4 Breast Cancer may believe I am being hysterical over “small issues” but believe me, they are not small to me and they are also not just cosmetic — they are life-altering changes in my body which could perhaps be corrected by going back on HRT. Am I re-acting in a way that seems ridiculous to you? I am desperate, and have tried every known holistic type of relief, been placed on Cymbalta, Remifemin, Estroven, you name it, with no relief at all. I have even purchased multiple “cold objects” to try to get some relief, but have yet to be successful. I see my oncologist in 11 days, and I am going to ask him if this is a viable alternative for me to go ahead and have the left mastectomy, and be returned to Premarin. I had absolutely NO issues the entire time I was on it before, and do not expect any in the future. My biggest question, if I have no breasts and have no reproductive organs, what are the risks for my cancer to return? I believe you can feel my desperation — I am at the end of my rope. Quality of life is important to me, and I believe I am willing to take the risk, if my odds are in my favor of not having a recurrence of breast cancer looming over my head. I thank you for your comments, and am still somewhat open-minded about this issue — With sincere gratitude, Scarlet 2304

    • Beth L. Gainer had this to say about that:

      Scarlet,

      I read your heartfelt comment, and my heart goes out to you. You have suffered way too much, and I can see that you are understandably upset. I’m hoping your visit with your oncologist leads you to the decision that is in your best interest.

      Hang in there, one day at a time. I believe prophylactic mastectomies are a deeply personal decision, and no one can judge the reason why someone opts for one.

      Good luck and please feel free to let me know how everything turns out.

  7. Facing Cancer Together had this to say about that:

    Good for you advocating for yourself, Beth.

    • Beth L. Gainer had this to say about that:

      Thank you so much! I strongly believe if we don’t advocate for ourselves, we can get lost in the medical shuffle.

  8. Eve Harris had this to say about that:

    I just stumbled on this smart, touching read. Thank you, Beth, for contributing something so personal to the discussion.

    • Beth L. Gainer had this to say about that:

      Eve, I’m glad you stumbled onto my blog! Thank you for your kind words and your readership.

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