Prophylactic Mastectomy - Worth it?

Hi clperry.  I am 37 and was diagnosed with stage 1B IDC and DCIS in late Sept of 2013, which was 2 months after my younger sister was 32 was also diagnosed with DCIS.  My cancer was on the right side...2 small tumors of 6mm and 7mm which was the IDC and the whole lower half of my breast was DCIS.  After several biopsies and careful thought, I opted for a bilateral nipple sparing mastectomy with tissue expander reconstruction.  My sister also had a bilateral mastectomy with the tissue expanders, but she did not qualify for the nipple sparing.  After gradual expansion of the breast tissue, the expanders come out and breast implants go in.  It is a process of doing the expansion SLOWLY,  letting tissue heal correctly, and trying to end up with the best result possible.  you want it to last for 20 years+ so patience is key.  A great doctor will do this gradually over 6 months to a year, depending on your treatment and how that effects the plan.  My doctor says that the patients are their own worst enemy because they try to push the steps to happen fast b/c of work, family, etc. and it backfires in the end.  Believe me it is worth the wait to do it gradually to get the best result.  My surgery was 2 days before Thanksgiving of 2013, and we are trying for April of 2014 for my "exchange" surgery--if I am ready, if not we'll wait.  Mastectomy was a no brainer for me, but I also did my homework to make an informed decision.  #1 reason for me was that it gave me the best prognosis and not the CONSTANT worry about recurrence in my breast.  At least it's about a 99% chance.  Also I am young and strong enough to endure the surgery now.....radiation greatly effects the process of reconstruction as well so I know lumpectomy was not for me.  I look at it is as a chance to have a "rebirth"...eliminate the cancer and with the reconstruction, I am "upgrading" my figure .  I am an A cup girl, so why not reward myself with some new curves!  I did not need Chemo and will start Tamoxifen soon, b/c my cancer is 97% positive for Estrogen and Progesterone.  I will also investigate removing my ovaries as part of my treatment, once I have had children.  I underwent fertility treatment to freeze embryos before I start the Tam b/c I have to take it for 2 years before I can try for a baby.  My family does not have a history of breast cancer and my sister and I do not carry the gene...doctor's don't understand how it happened.  My sister's cancer was hormonal too, and the surgery was her only treatment.  As far as risks, mastectomy with reconstruction is a major surgery, but most risks occur in people who are older, smoke, and are overweight.  I definitely say that the benefits outweigh the risks, b/c point blank the cancer is more threatening than the surgery itself.  Believe it or not my recovery went very well and was very manageable.  I was more upset that I couldn't have coffee for over 12 hours before my surgery than I was nervous about the surgery.  I went in on a Tues morning and was home by Wed afternoon.  You do much better in your own home.  That night after surgery I was up and walking around in the hallway.  I can describe the discomfort as a deep, dull, ache/ throbbing.  It was manageable and not severe as I thought, b/c you have to also remember that when the breast tissue is removed, the nerve endings come out too.  You will not have any more feeling on the skin surface of your breast, only internal muscle ache and things like that.  Over time I had some nerve regeneration that felt like a bee sting, but that was random and not often.  I was sent home with Percocet for pain, Diazepam for nighttime muscle spasms and Skelaxin for daytime muscle spasms. I would like to tell you more, but my computer says my post is too big already.  Let me know if you would like more info.  Good luck, you'll do great.

Hi Littlecalico,

I was wondering why you were advised to wait until 30 to consider a prophylactic mastectomy? 

Thanks!

Hello, 

kitpencil, sorry for the late answer. The doctors' argument was this: usually women who carry the BRCA1 or BRCA2 gene do not get a prophylactic mastectomy before 30, so why should I, who doesn't carry (that they know of) any faulty gene, should do it before? 

But it turns out medicine is changing as the world is changing: the average age at first diagnosis decreases, the proportion of women in their 20s and 30s w breast cancer increases, and perspectives change. 

So today I'm happy to tell you all that the doctors accepted my request and did the prophylactic mastectomy. After many uncertainties on their side, and many on mine too (I didn't know the night before if I was taking the right decision), I realized just after the surgery how relief and peace of mine were sweet feelings, that I had not experienced for way too long. 

All my love and strength to you all, 

LC