Mastectomy and stage 4

[Onedayatatime60]

Hello everone

I was diagnosed stage 4 HER 2+ five years ago and am so thankful for NEAD on scans

I asked this once but still don't understand why sometimes they do a mastectomy and sometimes they don't with stage 4 denovo breast cancer.

I do love my Oncologist and have asked him and he says a mastectomy would not change anything as far as prognosis and progression, yet I see others who have had one. Of course I don't want surgery if it is not warranted, but wondering why sometimes they do so and other times not.

I am in my 60's, the woman I know who had mastectomy and reconstruction with same diagnosis and subtype is in her 30s. I hope it is not an age related decision. Any insights appreciated. Thanks everyone

[Hazelgreen]

In my opinion, mastectomy should be an age-related decision. Our estrogen levels decline significantly as we go through menopause. Breast cancer is based on hormonal levels.

I am 79 with ribociclib-controlled breast cancer. I was first diagnosed in 2006 when I was 60. I refused a mastectomy (as my research readings indicated that it likely wouldn't make a difference at my age). Instead, I took meds for seven years, and hoped that was enough.

A sudden swelling of my right arm in 2019 indicated that my breast cancer was again active . Double tamoxifen for a year reduced my cancer markers (CAs) to the normal range. After my oncologist reduced my tamoxifen, these markers rose again to 190 over the year (2022).

It took 400 mg. ribociclib a year to bring my CAs back to the normal range (2023). I then experimented with reducing the amount of ribociclib in my body while maintaining normal CAs.

I now find, at the age of 79, that 4 days of 400 mg ribociclib is sufficent to keep my CAs in the normal range.

[Onedayatatime60 in reply to Hazelgreen]

Thanks very much for taking the time to reply. May I ask if it was MBC in 2006? So happy for you to be thriving!

[Ara31]

pmc.ncbi.nlm.nih.gov/articl...

Hi, in my case I had an mastectomy with HR+ HER- de novo metastatic (Lymph nodes and bones) breast cancer. I didn´t find anything in the guidelines. My doctors said that some patients may benefit from the mastectomy. According to the study I found (see link) some subgroups of patients have more benefit from an adjuvant locoregional treatment than others. I have NEAD on scans with Trenantone,Letrozol, Palbo and XGeva, it´s my first line treatment, got the diagnosis 4 years ago at the age of 48

[Onedayatatime60 in reply to Ara31]

Thanks for the link and the reply. The study looks like a reasonable conclusion. I do trust my Oncologist but I think it is natural to research and question. He is always open to questions

[nonna70]

I had a lumpectomy and now MBC 12 years later. My friend and a niece have chosen reconstruction. They are late 40's, early 50's. No way for me @73.

[Onedayatatime60 in reply to nonna70]

I understand your decision. Reconstruction options all have their limitations and DIEP flap is a not an easy surgery, though it can have great results; I don't think I would do reconstruction myself, but it is such a personal decision and I think each person decides what is best for them

[Gmaoftriplets]

Hello, I was diagnosed stage 4 HER 2- At intial diagnosis 8 years ago. My PET scan in September of 2023 showed lymph node progression, after testing and biopsy to make sure the cancer had not changed its type my oncologist and I made the decision for me to have a double mastectomy, which I had January 2024. I’m 66 years old, PET scan end of this month, fingers crossed. Maybe because the progression was in my breast. My doctor really went to bat for me, the other doctors said that she should just change my medication. Good luck to you!

I

[Onedayatatime60 in reply to Gmaoftriplets]

Thanks

[CyndiA]

I'm 8+ years out living with stage 4 with mets to bones and spine. My nationally renound oncologist recommended a lumpectomy. No way. I made him to a double MX.

I always BEG women to get a double mastectomy. 1. You are never completely free of cancer and it will spread. Get everything gone. Insurance covers it plus the reconstruction. 2. The DIEP reconstruction procedure is a one and done. If you get a single, and it comes back, you can't get that reconstruction again. 3. You'll never be symmetrical again if you don't do both.

I spoke to a woman yesterday who had a lumpectomy. Years later it came back so she had a single MX and a DIEP reconstruction. Now she's been diagnosed in the remaining breast.

Please just get it all gone.

[Onedayatatime60 in reply to CyndiA]

Thanks for sharing your journey,

One good thing is that in Canada, having insurance coverage or not does not factor into treatment decisions. In five years with no wait time, endless scans, specialists and infusions, my only cost has been parking and coffee.