Failing As Usual: Double Mastectomies and "Choices" In Breast Cancer Treatment

Laura, your point is well taken - and makes me want to amend my post to include it. TO EACH HER OWN. How much and what kind of surgery to pursue is a very personal decision, and shouldn't be open to judgement by others... We all need to do what feels best to us... because each of us lives with our own decision. Forever. - PJH
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I'm with Laura and PJ.  I would go further: I think that knowing the treatment you're having is your decision, not someone else's, is crucial to helping you get through it.  I say this halfway through chemo, which I submitted to with the greatest reluctance after talking to as many people and getting as much information as possible and concluding that as my choices went, it was the best of a bad lot.  An astonishing thing is that more than one person asked me, "Don't you wish someone else could make the decision for you?  To which I replied without hesitation, "No!"
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With so much of cancer out of our control, it's comforting, somehow, to haave SOMETHING—a treatment decision—that we can say "yes" or "no" to. Because we certainly can't say "yes, please" or "no, thank you" to a recurrence! - PJH
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I, too, opted for a double mastectomy after diagnosis of stage0 DCIS in the right breast.  I heard a lot of opposition which mostly died when the pathology report on the left breast showed a stage 1 in the left.  I do wish that I had asked for an MRI of the second side.  If the second cancer had been discovered, I might have had them check the sentinel nodes on the "clean" side. 

 

Mary Koss

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When I raised the question, my surgeon said he would refuse to do anything but a lumpectomy. And I had trust enough in his many years of experience not to question that.
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Beautifully put Laura,  I think if you got more individual in a room together you would find out that the reason that we come to this decision is because we can't trust what we are being told..  the discussion between one breast surgeon and another, one oncologist and another one pcp and another - they all think they know but they are all contraditing themselves so we are left to make the difficult - no almost impossible - decision that amputation seem to work with so many other cancer perhaps we will be lucky and it will work for us too! 

 

I'm sorry you too had to make such a horrendous choice!

 

Best

Deirdre

 

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This is a beautiful piece and one I can completely appreciate!  I too made the exact same choice of the bi-lateral mastectomy (with immediate reconstruction).. the only thing I see being left out of this article is the incredible confussion on the part of the doctors as they continue to treat patients.  I went to 3 breast surgeons and their own confussion on how best to handle this situation was what helped me decide.  If we as the patient are making the decision and the information coming from the medical establishment is, at best, mixed then I have to take matter into my own hands and frankly amputation is one of the only ways that cancer was removed 50 years ago and we have to ask how much farther has medicine come?

 

Also,  my DCIS was found on an MRI that I had to pay for out of pocket and then push to get some payment from my medical insurance.. the medical system that we are suppose to trust is broken - I don't intend being a statistic while (medical areana) cleans up their act!

 

We have come a way in detection but when it comes to the treatment too many of my friends have died of this disease - I want to live and although I would have liked to live with my own breasts I'll take the next best thing!

 

 

 

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I agree with Ms. Zigman's thoughtful decision.  At this time I am faced with a similar circumstance. My left breast diagnosis (after biopsy and lumpectomy) is one of DCIS in multi-focal sites, with ADH and no clean margins.  I am definitely having a mastectomy of the left breast and to quote Laura Zigman's article:

    

" As it turned out, that choice made the most medical sense, too. Because when the final pathology report came back a week after surgery, my surgeon called to tell me the results: there was DCIS is the "healthy" breast, too: DCIS that the MRI hadn't caught, even though it caught the DCIS in the left breast. "

 

I know removing the healthy breast is considered "agressive" - however, I also know I would regret not removing it in the years to come... and in Laura's case even sooner than that.   

 

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