Do You Need a Double Mastectomy for Stage Zero Cancer?

Talk about the devil’s choice. When they discover cancer in your breast, not only do you get to choose from among such not-fun items as surgery, radiation and chemotherapy, but you get to decide whether you want to remove the healthy breast as a precaution.

I’ve talked before about how much I like The New York Times “Well” blog. On March 8, they posted an excellent story on this provocative topic, citing several recent studies. All of the research was interesting, but what held my attention was the jump in the number of women with Stage 0 cancer or precancer who chose the bilateral mastectomy. While the percentage is low (5.2 percent), it more than doubled in six years.

I was one of 219 people who commented, and our comments were as individual as snowflakes. Many women, like me, had stage 0 ductal carcinoma in situ, or DCIS. Each of us made her choice for her own reasons. In my case, I was really hanging my hat on breast-conserving surgery and radiation until two attempts at breast-conserving surgery didn’t clear out all the bad cells. (And darned if my breast tissue wasn’t still harboring some stubborn DCIS after the mastectomy. I have no doubt I made the right choice.)

Many of the women who commented chose the bilateral mastectomy and have no regrets. For them, the peace of mind was worth it. For me, the bilateral mastectomy was never a consideration, although as I mentioned in an earlier post my husband Bruce asked if I would think about it so I’d never have to go through this again. But the way I see it, I”m basically back at square one and I’m perfectly comfortable there. Others see it differently, and it’s up to each of us to decide what our individual risk tolerance and comfort level is. No one else can make that choice for you, and no one should pass judgment on your decision. If you’re facing that choice as you read this, you have my best regards.

11 thoughts on “Do You Need a Double Mastectomy for Stage Zero Cancer?

  1. Hi,
    I am scheduled for preventative BM Monday March 29. I have LCIS with a really awful family history of BC. You are correct. It is a choice made by the patient for the patient. I jumped through all the hoops, lumpectomy, talked with an oncologist and a genetic counselor, had an MRI the whole nine yards.
    I finally decided I did not want to spend the rest of my life with an axe hanging over my head, Wish me luck and thanks for your article,

    • Judy,
      I do wish you luck with your procedure Monday, and all the best going forward. The women I’ve talked to who made the same choice were like you, their family history was awful and they told me they didn’t want to spend their lives waiting for the bad news. Thank you so much for commenting.

  2. Jackie,
    I lost my mom to breast cancer in 2004. I often wonder what would have happened had she had both breasts taken. But, I know that I can’t “what if” for the rest of my life. Just like I can’t be mad at the boobs….(sounds silly I know). But seriously, sometimes I get really upset at the fact that we have them even though they were meant to be a beautiful thing. Recently, I found a lump and last Friday after having an MRI, ultrasound, and mammo. My Dr. informed me that they found two more. Now, I am only 25. And as far as he can tell they are benign. I am having the BRCA test done and if it turns out to be positive then he wants to do a preventative mastectomy with reconstruction and implants. This is going to be a huge decision to make, but thanks for your article because it reminds me that the choice is ultimately mine. It’s nice to research and see what other people went through before I make any decisions.

    • Hillary,
      Thank you for your comments. I wish you the very best whatever you decide.

      P.S. It’s not silly at all to be mad at the boobs. I think anger is healthy as long as we don’t let it consume us and don’t take it out on others. It certainly is no fun to realize a body part can turn on us. I even saw a T-shirt that said something like “Yeah, these boobs are new–the old ones tried to kill me.”

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  4. I will never second guess having a bilateral at age 64 when diagnosed with stage 0 DCIS. My mom had breast cancer at age 79 years old and had a mastectomy on breast with cancer…..she lived into her 90s. I was fortunate as I was under diagnostic mammogram for almost 12 years and this is the reason this disease was found at stage 0!

  5. Hi my name is Mind made up or Peace be still. These were some great articles and very helpful with my decision to have a double mastectomy. Diagnosed with stage zero,already had one lumpectomy only to be told today that she did not clear the margins. Can’t keep doing this. I love my Dr. But I love me more. The choice is mines to make and I’m making it. I am liking forward to one day hold a grandchild in my arms. Can’t take the risk of not having that chance. Thanks ladies your stories were very inspiring. Signing off. MIND MADE UP

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  7. Pingback: Should We Rename DCIS? - Breast Cancer Consortium

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