prophylactic mastectomy

Sig,

I remember watching the t.v. special that Dr. Marla Shapiro did about her breast cancer diagnosis and treatment.  She had the same surgeon and PS that I did in Toronto.  She said that her surgeon did not feel that a bilateral was necessary for her and recommended against it, but she decided that this was what she wanted and he of course did the surgery.  

Based on stats I've seen, a higher percent of women in the U.S. have bilaterals than elsewhere.  In cases where this is not considered medically necessary or advisable (i.e. BC in both breasts or a previous BC in the other breast or BRCA+ or LCIS, etc.), it's unclear why this is.  It's been speculated that many doctors may not clearly explain risk levels to their patients and as a result, patients assume that their risk (of recurrence or a new BC) is higher than it really it. It's also been speculated that in some areas of the U.S., a mastectomy and/or bilateral is seen as a being the standard treatment after a diagnosis of BC and therefore is more often presented to the patient as a good option.  Simply based on the fact that more mastectomies and bilaterals are done in the U.S., I would guess (just a guess, mind you) that more doctors in the U.S. are more quickly agreeable to a bilateral, if the patients asks for one.  I think in Canada our surgeons are more likely to resist and explain that a bilateral is not necessary medically (whether this is protocol or not, I don't know) but in the end, if it's what the patient wants, my understanding is that there is no reason within our health care system why it can't be done.  The Canadian health care system pays for any breast surgery and reconstruction necessary due to breast cancer, and any surgery required on the other breast in order to achieve symmetry.  If the patient's choice for the other breast is a prophylactic mastectomy with reconstruction, all costs would be covered.  You just might have to insist forcefully to get your doctor to agree to do it.

While I think this is an individual choice, I do want to add one comment to Vinessa's post.  Symmetry is not always good for those who have a bilateral, if you have reconstruction.  I read so often about women choosing to have a bilateral in part because they want to have both sides reconstructed at the same time in order to achieve symmetry.  But in the end, there is no guarantee of symmetry with any reconstruction because each side reacts differently to the surgery.  So in my mind while there are lots of good reasons to have a prophylactic mastectomy, reconstructive symmetry is not one of them.

I got a BM and haven't regretted it one second. I asked my surgeon what he would do if I was his daughter/wife/mother. Then you get a true answer.

Perhaps they see no need for you to go back into surgery. Perhaps if you had requested it at the same time....

Hi Sig,  I had bilateral prophylactic mastectomies three years ago and am now on the wait list for diep reconstruction.  I didn't have breast cancer.  I think the doc was put on the spot because both my sister and I wanted the surgery 15 years ago after our mother died of BC.  Our grandmother, and two aunts all survived the disease.  Anyway, 15 years ago we were both denied, her in Ottawa and myself in Winnipeg.  Two and a half years ago, my sister, who had moved to WInnipeg and was just shy of 50, was diagnosed.  I scheduled an appointment with her surgeon to again request a BPM.  Unwittingly, my appointment was scheduled for the exact time as my sister, who was having her drains removed post surgery.  Given the strong family history she really couldn't say no.  I had the surgery and have never, not once, regretted it.  I am going to have reconstruction because I haven't been able to find a decent prosthesis, even after having a set custom made.  My sister, Frances, died in November 2007.  I wish she would have had the opportunity to make the choice I was able to.  Since Fran's death, another sister has had BPM with TUG-Flap reconstruction.  I still have two sisters who have chosen to wait.  We got the genetic testing results back last year and we are not carriers of the BRAC1 or BRAC2 genes.  Unfortunately that doesn't change the fact that our family gets breast cancer.  A 45 year old cousin is now undergoing treatment for Breast Cancer. 

I don't understand the logic in the surgeons not wanting to do the surgery.  This is not something a woman would do on a whim.  I wish you luck.

      I asked for a prophylactic mastectomy, neither my plastic nor my bc surgeon wanted to do that. ''we do not take away sane parts of the body''. My mom is a nurse. When I told her that I wanted the ''good'' breast to be removed, she said I was nuts and argued the same thing as my surgeons. Beesy is right (as always): my plastic surgeon told me that bilat does not garanty symmetry. He told me that he had just done one and the right side did not react at all like the left side (and he is a very good surgeon...)

I had BM. I'm BRCA2+

I too had a bilat mast.  My surgeon did not think it was an unreasonable request due to multifocal cancer in the 'bad boob'.  No recon for me and I have never regretted  that  choice.  

I think that some people tend to underestimate the possible problems that can result from any surgery, both physical and psychological.  A doctor is well aware of and always considering what could happen.  They take an oath to do no harm, and that can mean different things to different docs.  That is probably why so many are hesitant to do a proph mast.  

I would  suggest that if you are sure that this is what you want you fight for it, but listen to the docs reasons for not wanting to do it.  And if necessary, find a doc that will consider doing it.  If you just take your docs original refusal, he will believe that he made the right choice for you because you seemed to accepted it without question.