The prophylactic masectomy club

I had shoulder pain after my DTI reconstruction so I don't think it's only reserved for those who have DIEP. BN said the shoulder pain is from the position you are in when in surgery. My surgery was 7.5 hours and after confirming my breasts were gone, I apparently asked this question dozens of times while in recovery, my first grumble was that my right shoulder was really painful. It is still uncomfortable now and especially when I wake in the morning, guess it doesn't like being in one position for very long.

I had nipple sparing BMX and I have sensation in one nipple and BOTH react to cold, in fact my left nipple is hypersensitive. My right nipple has some collected blood in it at the moment so she's being stubborn but I'm sure she will join the party soon.

Welcome to the Prophylactic Mastectomy Club!

My mother was diagnosed with DCIS at age 62. She had a lumpectomy, followed by radiation and Tamaxofin. All was fine.

At age 79, she was diagnosed with ILC, Stage III. She had a lumpectomy and SNB. Her tumor was 5.3 cm, and a total of 11 nodes were positive. Mom was not a candidate for chemo. She was treated with radiation. Her doctors refer to keeping her cancer in check.

Only after the second diagnosis did I learn that mom is BRCA2 positive. She forgot to tell me. I live in another state, 300 miles away from my mother and siblings. My sister is BRCA negative.

My grandmother died of ovarian cancer at age 48. She was an only child. My mother has two sisters, who are younger than her by a few years, but there is no cancer in them. My uncle is getting tested for BRCA because he has a daughter. All my other cousins are male.

I tested positive for the BRCA2 mutation. (I also have a Variation of Unknown Significance on STK11.) According to my genetic counselor, I have between 60 to 87% risk of breast cancer and 40 to 44% risk of ovarian cancer. Considering the amount of cancer in just my mother and grandmother, I decided to have the prophylactic mastectomies and prophylactic Salpingo-oophorectomy (Fallopian tubes and ovaries).

My surgery was November 11, 2015. I got my pathology report. Everything removed was benign. However, there were many areas of hyperplasia in both my breasts. I feel that I had surgery before my breasts had a chance to turn cancerous.

I have a son and two daughters. Eventually we will need to test them. I especially worry about my daughters.

I had a lumpectomy in Aug 2015, which revealed IDC. Only after the LX did we find out that I have not one, but two gene mutations which probably caused my cancer (PALB2 & Chek2.) There are 32 cases of cancer in my 1st & 2nd generation relatives, including 5 just in my family of origin! And two of those are BC!!

Although my breast surgeon now considers me "cured" because she cut out the tumor, my MO doesn't feel that I'm in the clear just yet. I'm finishing up chemo now and I'll be having BMX sometime late Jan-Feb, followed by oophorectomy, possible hysterectomy later in the year.

I'm really glad that my doctor ordered the genetic testing. I don't know why it never occurred to me to look into it. My 20-something adult children are being tested now, since they have a 50% chance of inheriting one or both (or neither) of the aberrant genes. Of my 4 siblings, only one has sought testing and she is negative. I dearly hope that my children are, as well.

I had my sentinel nodes mapped before surgery and they took 3 from each side without additional incisions. The tested negative..I felt that if I am being proactive with prophylactic mastectomies I should have my nodes checked also.