Mastectomy at Stage 4

Katiexo

Hi

Looking for a bit of advice. I was diagnosed this year de novo and found the cancer had spread to my liver and bones. I’m currently on chemo with Herceptin and Perjeta every 3 weeks. It’s working and my tumours are shrinkin. Now I have to make the decision whether I want to have a mastectomy or not. My oncologist has said it will make no difference to survival and it’s a personal preference. Is this true? Most people I see on this site seem to have surgery. Any long term survivors on here not had surgery?

FosterKittenMum

Surgery was never recommended for me. I did ask but got the same reply as you, that it made no difference to overall survival. However my tumour apparently was very close to the chest wall and was not detected on 3D mammo or ultrasound.

I had a very quick and a very good response to chemo, Taxol, Herceptin and Perjeta and achieved NEAD very quickly. Almost three years down the track I am still sitting on NEAD. Not quite long term survivor yet but doing much better than I ever thought. Tumour markers are accurate for me and have been in normal range for twoand a half years down from 1989 when first diagnosed. I am approaching infusion number 50. I lead a relatively normal life but my spine is a bit of a mess.

Part of me wanted that sucker out as soon as possible but another part was just so relieved that I did not have to deal with surgery, after effects and lymphodema. I am happy with my choice.

Good luck with your decision. There are people who go either way, I guess it is a personal preference based on your situation

Anonymous

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.

Anonymous

on the other hand, this study which was specific to HER2+ metastatic women, showed an advantage for those who’d had breast surgery

https://www.breastcancer.org/research-news/sx-linked-to-better-survival-for-her2-pos-mbc

Anonymous

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!).

Kjones13

I was told the same as you...I had a large tumor and had a complete response to treatment in my breast, liver, and spine...but about 6 months after I stopped the taxol, I had a tiny spot show back up in the breast so my dr let me do a mastectomy. I’m going on 8 years now still on my first lobe of treatment...I think there is a link

KBL

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.

forza

de novo last year , and no operations at all. Also under this logic : it’s spread already.

All the drugs I’m on (they should appear in my signature) shrunk nearly all my mets (thyroid , lymph nodes , bones)The breast tumor disappeared on petscan after 3 months. It really really confused me but I’m all for no cutting 👍

So it’s definitely not unheard of. Hard to explain to strangers that you have boobs and hair but are also stage 4 🤷🏻♀️

MargaritaMS

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

illimae

Katiexo, I faced this decision a few years ago with a lumpectomy and here’s the deal. Some de novo patients have surgery and some don’t. There are two main studies as to whether there is benefit or not, both studies conflict in their findings and unfortunately, I’m told both are flawed. They are flawed enough that we still don’t know.

I had a choice but I’m pretty sure it was only because I was considered oligometastic, which is generally having 1-5 spots in a single organ/bones. In my case I had a single spot on my hip bone and was treated with “curative intent” but for many with more mets, surgery is often not considered helpful overall. Additional factors for some might be age, recovery issues and what, if any, treatments might need to be paused for surgery/recovery.