Advice on single or elected double mastectomy

unruly_julie

Hi everyone,

I’m 49, a mum of two young kids, and have been diagnosed with ER-positive, HER2-negative breast cancer in my right breast. It’s quite extensive, so I’m scheduled for a full mastectomy soon.

My surgeon has recommended a single mastectomy, but has said they would support a bilateral mastectomy if that’s what I choose.

I’m trying to make the best decision for me and my family, and would really value hearing from people who have had either:

• a single mastectomy, or
• a bilateral (double) mastectomy

I will have reconstruction using a DIEP flap (stomach tissue), so I’d be especially interested in hearing from anyone who has had this—but I’d really appreciate all perspectives.

If you’re willing to share, I’d be so grateful for your thoughts on any of the below:

• What did you choose (single or bilateral), and what influenced your decision?
• If you had a single mastectomy, how have you felt about symmetry? Did you go on to have further surgery?
• If you had a bilateral mastectomy, how was the longer surgery and recovery?
• How has loss of sensation been for you, and does it affect daily life?
• Looking back, is there anything you wish you had known or considered differently?

Thank you so much for reading—this feels like a big decision and hearing real experiences would really help.

katg

I started out with a single. I had a large tumor, HER2+, Brca2. I did not have large breast so the chemo only shrunk the tumor half. A mastectomy was needed to get margins. I had an expander put in as i was supposed to have radiation. Radiologist Dr said if i was his family he would say do not do it. The side effects may just offset the 2% extra longevity i may get from radiation. Then i got covid, then a blood clot. What? I had nearly 11 months with one real breast and one with the expander. For me, I did not want to think " what happens if the cancer comes in the other breast?'. I also did not keep my nipple on the removed breast and the cancer was too close.

Breast tissue. December of 2022, I had the final surgery and removed the other breast. My first surgery was when i learned about drains. I had great surgeons and plastic team. I had a nerve blocker and with 3 sentinel nodes removed, no real pain. The bruising was crazy. I thought for sure my skin was dead. Alas, it was not. My amazing body healed.

In Dec 2022, i ended up with a hematoma that developed and grew from my surgery to my 1st check- up 7 days later. I had put pictures in my patient portal, so i saw my breast surgeon 1st, who called my plastics and that 7th day the breast was opened, cleaned out and my implant was put back in. Brusing again, but oh my, the drains were a bit bigger and easier to care for. I did not wear a compression bra as i was told, and over the next month fluid developed behind my breast. I had 2 aspirations and with a thread to have the drains put back in, I stuffed my bra and no more fluid was produced.

I am single so sensation has not been a problem. I know any relationship i have will be something requiring acceptance. My Dr had said he could try to connect nerves and possibly get me sensation. At 62, I said no. I do not regret for a 2nd. I look at my barbie boobs and remember I did have cancer. I am grateful.