More Women Opting for Double Mastectomy: Is It Justified?

Hi there,

I totally understand your predicament.  I was diagnosed at 44 with DCIS in my left breast, though mine was not invasive (yet), and I, too, had to make the decision of whether to have a single mastectomy or a double.  My mother had had breast cancer (also in her early 40s, also caught early), and I was negative for the BRCA genes.  From the moment of my diagnosis when it was clear that I had to have one mastectomy (two areas of DCIS made lumpectomy/radiation not an option) I felt certain that I would have the double -- to make reconstruction easier, and mostly for piece of mind.

You can debate the statistics all you want -- look around the site for some excellent fact-filled posts by P.J. Hamel on this exact topic -- but at the end of the day it is your decision and your decision only.  After all the numbers, and the fractions of numbers, and all the probabilities and possibilities -- after trying to parse out family history information and genetic testing results and diagnosis information -- it all comes down to what you -- you -- feel is the best decision for you.  There usually are no absolute answers -- doctors and researchers disagree on almost all of these questions -- so the only answer that is right is the one that is best for you.  That makes you feel the safest and most comfortable. 

I posted a piece here a few months ago about how no matter what decision we make when faced with breast cancer, we are seen as failures.  If we opt for lumpectomies instead of mastectomies, we run the risk of being seen as shallow and unwilling to do "whatever it takes" to fight the disease.  If we have mastectomies instead of lumpectomies, we run the risk of being seen as overzealous. But the big one is if we choose double mastectomies when we only really need a single - well, then, that's the craziest one of all.  Except that it's not crazy.  It's a legitimate option and you should feel free to choose it.

I chose it, and I never regretted it.  I especially didn't regret it when I was lying in bed recuperating from my double/TRAM flap reconstruction and my breast surgeon called with the final pathology report:  DCIS had been found in my right breast as well.  The one I "didn't have to have removed."  The one which had escaped detection in a mammogram and an MRI.  Who knows when it would have been found.  

If it makes you feel any better, I would definitely and absolutely have a double mastectomy.  I think you are right to be leaning in that direction and I hope you will follow your gut and ignore the comments -- even though they might be well-meaning.

Please feel free to write back and thanks for writing.

Laura Zigman

Thank you Laura!

I am going into the hospital in December to have a double mastectomy and a tram flap reconstruction.  I had cancer two years ago in my left breast, a lumpectomy and radiation.  Even on Tamoxifen I am getting more and more "suspicious" lumps in both breasts.  Too much time has already been spent worrying about these breasts - they are my enemies.  I appreciate your candor in your article and feel a little braver having known you went through it too.

Good luck, Debbie.  I hope the surgery gives you some much-needed piece of mind. Keep us all posted on your experience and your progress and don't hesitate to email with any questions you might have about the procedure (I had the same).  Stay in touch.

--Laura

I am 44 yrs w/ a 13 yrs daughter, I was diagnosed with Inflammatory Breast Cancer in my left breast in March 2007.  I requested my surgeon do a dble masectomy in 8/07 when I was schedule for my masectomy.  She refused, told be she would do it later on down the road if I still wanted to remove it.  In February, 2008 during my follow up mammogram on the right side the circus started again, there is something there, we are not sure, we just want to be cautious.  Extra veiws, ultrasound, breast MRI, and then its turns out to be nothing.  I opted to have the right breast removed this past June followed by dble tram flap reconstruction.  I do not regret my decision.  I am a realist, I know that the cancer can return in some other part of my body.  But I also know that I could not spend the rest of my life in a state of panic every time I had to go for mammograms on my remaining breast. I also know that after chemo, surgery and radition, I will do what ever it takes to minimize my chances of reoccurance.  My mantra has been " I don't have time for this"  through out my journey and will continue to be.  Good luck to you and God bless

And God bless you, too, Donna - you made the exact right choice for YOU. You need to be there for your daughter; you're right, you don't have time for cancer! Take care- PJH

I am 44, single, never married and with one neice. I have a different situation in many ways. I probably---well it's pretty much a sure thing that I will never have a birth child of my own. Having that choice taken from you in a moments test results is one thing...versus a choice of adoption.

***I am glad you fought for what your gut told you was the right thing to do. I fought for my double mastectomy. I fought my doctor in a room with my sister, x-ray tec's, PA's, RN's. It was a debate and I was very decisive about what I wanted. My gut told me this from the minute I was told that my biopsy was positive for cancer.

The cancer was in my left breast 10 o'clock, very close to the chest wall, 2+ cm (stage 2-3), HER2+. I had chemo first. I really believed in my gut that the double mastectomy was the way to go for me. I was firm with this.

After the surgery, the pathology results showed that I had pre-cancer in the other quadrants of my left breast. I had nothing in my right breast. If I had NOT trusted "my gut" I would have had a lumpectomy as recommended by my doctors. Who knows if they would have gotten all the margins.

Regardless, I may--or may not have had to have that left breast removed---when---a ticking time-bomb in my mind. I don't think that my doctors were wrong in their recommendation. I have looked at the medical guidelines...they were in total alignment. At 43 the medical guidelines may lean heavier toward the side that a younger patient can't part with her breast (for her life).

I know this sounds harsh. It is only MY opinion and my decision was confusing. I made the best decision for myself! I have absolutely no regrets! I do not question this decision in any way. -------I pray for those who have to make these decisions. Do what is right for youl Listen to your heart, your gut.....don't discount your intuition!

Exactly right, SS: since we must live the rest of our lives with whatever's decided, we might as well be the one deciding!! Glad it worked out for you. Stay strong AND smiling... PJH

Luckily, this is a free society and we can all make our own decisions about our own bodies. No way would I take off a perfectly good breast, not showing any signs of cancer. And it's not because I have any feelings about being "less" of a woman. Removing a breast is aggressive surgery; it can leave you (as it's left me) with permanent nerve and shoulder damage. I thank God I chose to have only one, as the mastectomy side is still uncomfortable, 8 years later. And I just don't fear cancer that much, I really don't.

I was trying to present the facts - the fact is, a bilateral mastectomy doesn't lower your risk of dying of breast cancer. That's a fact, backed by data. It DOES lower your risk of breast cancer in the breast; not your risk of metastasis. I'd hoped I was presenting women with the facts, so tht they could make a decision based on them, not on pure fear.

As I said, to each his own - I'm very glad you did what was good for you, and hope every woman feels entitled to make that choice - what her heart tells her to do, not what society (or her family or spouse) expects of her.

Hope you do well with any continuing treatment. Thanks for weighing in here- PJH