Prophylactic mastectomy yes or no ...

It is feeling a bit more flexible now but for months it was stiff and had phantom pains. I massage under the scars every day, particularly where I had all the under arm lymph nodes removed as don't want lymphedema returning. I imagine they will do a bit of an ultra sound there soon and a mammogram on the other breast to make sure its all A OK. I am on Tamoxifen too and I will make sure they check my uterus and stuff and see how its going as I had large fibroids they checked before. Once everything is checked I will breath easier as the nodes under my jaw never really went down after chemo so I am a little suspicious but it could be those nodes have taken over from my arm which has no nodes. Nice part is no more periods yay! Draw back is hot flushes sometimes every 3/4 hour if I am excited.

Hi Micha,. Sending lots of hugs.i am a newcomer to all this so I can only wish you all the best in your future treatment. I also have been told I will be on tamoxifen also after my right breast mastectomy in a few weeks time.pretty scary and can only cope with one step at a time. Great about your clear margins. X

Hi Brenda, how are you going now after your left mastectomy. I am coming up for a mastectomy on my right breast after two surgeries to try to get the clear margins. Tumour removed and margins clear but a second component dcis which wasn't clear. Pretty scared about this next step but I have to think breast gone cancer gone. 

Hi Brenda5... whilst I don't  think for most woman keeping their unaffected breast is the wrong decision. It isn't  a preventative for secondary breast cancer spread from our original site breast cancer.  It would just be a potential  area for a new primary breast cancer. Doesn't  mean it will be.

This link briefly explains the  way secondary breast cancer is spread.

https://www.bcna.org.au/secondary-breast-cancer/what-is-secondary-breast-cancer/

I have no family history of bc so mine isn't gene oriented. I only had the left mastectomy and at the time I did ask should we get both off at the same time but the surgeon said it was unnecessary.

My thinking is that if cancer is going to return I would sooner it come back in the remaining breast and not in other areas of my body. At least in the breast its curable. I would sooner leave that breast as bait for the cancer atm.

Hi Micha,

I was diagnosed with DCIS (HR Negative) in my left breast 15 years ago and had a lumpectomy and radiation. Back then it was about breast preserving surgery and prophylactic mastectomy was not mentioned even though I had lost my mother to BC.

Last month I was diagnosed with invasive BC in both breasts. HR Positive in my left and HR Negative in my right. I had yearly mammograms and saw my surgeon 6 monthly for checkups. Both tumours were not palpable. I have had a bi-lateral mastectomy and start chemo next week.

At the time of my surgery my surgeon also had a patient with a BC diagnosis 19 years after her initial diagnosis.

Wishing you all the best with a difficult decision.

Janette xo

Hi Micha,

Have you tested positive for breast cancer gene or have a strong family history?

Usually removal of the other breast is to prevent a new primary breast cancer as apposed to metastatic breast cancer spread throughout the body from the original cancer. They of course would be monitoring for both. 

I chose a bilateral mastectomy due to a strong family history of breast and ovarian cancer affecting multiple members. My primary cancer was undetectable by mammogram even when you could feel it due to dense breast tissue. I knew I would always be fearful of another primary growing and not be found and that was why I made my decision.

I guess you need all the reasons why they recommend which future treatment to help make the decision. Talking with a breast care nurse may help.

Goodluck. Kath x