Mastectomy at Stage 4

I don't know if you've seen this thread but there is discussion of surgery for stage IV De Novo in it , including my own recent post:

https://community.breastcancer.org/forum/8/topics/876918?page=6

I am also HER2+ and three years in. After my initial six months of Taxol plus H&P my breast tumor was no longer showing up on PET scans and still doesn't. I've been continually NED since last May after I had one spine lesion radiated.

When my original MO originally discussed the possibility of breast surgery , it would have been just a lumpectomy at my tumor site, because I only ever had the one solid tumor. But the current MO doesn't want to consider referring me unless something turns up on imaging.

Interestingly, I just discovered a study that was done with early stage HER2+ women. The purpose was to determine if people who have complete clinical response to neoadjuvant chemo-Herceptin-Perjeta can go without surgery. They would do core biopsies after the neoadjuvant therapy to test for complete response. Since Herceptin is so effective they are thinking certain early stage women may be able to forego breast surgery.

https://ascopost.com/issues/august-25-2019/can-some-women-with-her2-positive-breast-cancer-forgo-surgery/

Residual DCIS would disqualify them, if I am reading that correctly.

If you look at the de novo ladies with surgery, I would say the majority of them are also HER 2+, so there must be considered benefit somewhere along the line for those ladies that enough MOs would suggest it. HER2-, unless the mets were missed initially and you went through surgery and then they were picked up through imaging for rads or whatever reason, I've yet to see someone who has had it taken out as de novo. Most of the arguments for leaving it are as a way to see early if the cancer is returning/ mutating (I believe? someone do correct me if I am wrong!).

I was diagnosed de novo in May of 2019, although the cancer had been there since 2013. Long story that I’ve written about. Since it was still Stage IV in 2013, I don’t think it would have mattered, but I was told a mastectomy is to keep the cancer from spreading, which makes sense. Since mine had already spread, they said there wasn’t a need. I was okay with that answer.

I’m also occult. There has never been a primary found in my breast.

I was diagnosed stage 4 de novo, also HER2+. I’ve had mets to liver and spine. I have inflammatory BC which had also invaded the skin on my breast so initially I was told most likely no surgery. Taxol with HP got me to a near complete response. My liver, spinal and skin mets resolved during my initial round of chemotherapy but the breast tumor only shrunk - considerable shrinkage - but it was still visible on scans. My MO suggested at that point that I have the mastectomy on the grounds that with it, there would no longer be any evidence of active disease and we didn’t want disease escape further from the breast again. So I did the mastectomy. That was 5 years ago and while my liver and skin have stayed clear, I’ve twice had small progressions (spine and nearby muscle) that were treated with SBRT while on Kadcyla. I’m currently NEAD again - for the past year - and back on Herceptin but this time with Keytruda. I have chosen to treat each site of mets as aggressively as possible and I don’t regret it. In my case it has definitely been a whack-a-mole but it’s working for me. I will add that one factor to discuss with your doctor is that since you already have mets, there’s likely no benefit to removing lymph nodes since that’s usually done for staging disease. At least that would reduce the risk of lymphedema and related side effects. Good luck, whatever you decide to do