Masectomy

[strong1t]

Has anyone with Stage 4 breast cancer had a masectomy?

Thanks for your reply.

[doomkiller]

Hi

Not that I know of. Initially, I was told that if the meds & chemo reduced the size of the tumour in my breast, then surgery would be possible. However, that has not been the case. Also, over time, I have realised that having metastic breast cancer, means that the cancer is travelling in my blood, hence surgery poses a risk of death. Ironic, isn"t it.

We all live in hope.

Cherie

[Kiera49 in reply to doomkiller]

I had mastectomy of my right breast when I had cancer last time as well as lymph node removal, but somehow came back in right lung and left breast is unaffected

[MacroMom]

My oncologist recently told me about the latest study on this topic. Here's a link to more details. The conclusion is that local surgery/radiation of the tumor did not improve quality of life or overall survival.

ascopost.com/news/june-2020...

My tumor was biopsied when I was first diagnosed in Oct 2017 to identify the cancer type. I had another biopsy in May 2019 to see if the cancer type had changed. They took several samples but none had enough cancerous tissue to type; basically it had hollowed out! It still shows up the same size on my scans but hasn't been active.

However for women whose tumors are active or growing, I can see why it might seem good to have them taken out. It probably also depends upon how widespread the cancer is at diagnosis. Mine was all over my bones and liver so taking out the primary didn't seem like it would make much difference. I wonder if that would have been different if I'd had just a few bone mets.

Looking forward to hearing others' experiences, thanks for the question!

Patty

[KMBL_]

I was diagnosed De Novo Stage IV, so right from the get go. After discussion with my doc, he said having a mastectomy was to prevent it from spreading. Since it had already spread, there was no need. Please know in my case, though, there has never been a primary found in my breast. Imaging doesn’t work for me, and I’ve never had a biopsy of my breast because they haven’t seen anything.

[stardust1965 in reply to KMBL_]

Hi KMBL

Snap, I had a clear mammogram 7 weeks before being diagnosed. Nothing has ever been found in my breasts. I try not to beat myself up that I missed something when the experts haven’t been able to find anything.

[KMBL_ in reply to stardust1965]

Hi, stardust1965. It is so odd when they don’t find anything there. If you don’t mind me asking, where was your cancer found?

[stardust1965 in reply to KMBL_]

Hi KMBL

I don’t mind you asking at all. Although I don’t usually post here I am a regular reader which helps to keep me sane. I have suffered from a bad back for years (two partial prolapsed discs) so I’m no stranger to back pain. It progressively got worse and worse and I was going regularly to a physio. My back fractured (I later discovered) but I soldiered on until by chance I saw another physio who couldn’t sort the pain so suggested going to a GP. By this time I could hardly sleep, breath etc. Under the NHS I was sent to a back clinic to see if I qualified for an MRI on my back. I eventually had the MRI and that’s when a lesion and the fracture was found. Because I also had hyperparathyroidism they suspected it could be a harmless Browns Tumor so a biopsy was done on the lesion. Even the specialist who carried out the procedure didn’t think it was suspicious so when the results came back we were shocked to learn it was metastatic breast cancer. After an MRI and NM bone scan I was told it was in my spine in three places, ribs and a small spot on my pelvis with a question mark over a shadow on my liver but to date my onc doesn’t think the liver is affected as that hasn’t changed. My last scans were delayed due to Covid but after six months I had them done last week. Just now waiting until my next telephone oncology appointment to get the results. It’s a wait of three weeks so I try not to think about it and as others on this board have said, I am already living with whatever the scans show.

Sorry for the long response but I’ve covered your other question here too about how I was diagnosed.

After skipping stage 1, 2 & 3 I hope you are doing well and wonder if your situation is similar.

[KMBL_ in reply to stardust1965]

Thank you, Stardust. That sounds excruciating. Please keep me posted with results, and I hope everything is stable. My scan results are usually posted the same day. Three weeks is tough. I’ll be thinking about you. I hope the pain is much better with treatment.

[Teddielottie]

My circumstances are a little different , in that my stage IV bc was only diagnosed, de novo, at the time of my right mastectomy, (when 16 out of 18 axillary nodes were found to be positive) and it was recommended that I should have a ct and bone scan , which confirmed my bone mets (low volume). I then started on Ibrance/Letrozole straight away (no chemo or radiotherapy), just over 2 1/2 years ago .

[Buffwright]

I had one in 2006. The MBC showed up in 2015 in the breast tail tissue in my armpit.

[Staysha]

I was diagnosed Nov 2018 with mbc from the get go (right breast, lymph nodes, right lung). I went through 8 rounds of taxotere with other drugs not to get so detailed. The tumor in my breast seemed to be gone but in a few months it was back. It was found that the tumors in my breast were her2- and the ones in my lung were her2+. I insisted and pushed to have a mastectomy. I had my right breast and several lymph nodes removed in Oct 2019. Now I’m just being treated for the her2+. I do not regret the surgery one bit.

Hope this helps

Stacy

[SeattleMom]

Yes, I had double mastectomy following BC diagnosis in 2000. 17 years later, I was diagnosed with MBC, with mets to spine.

[Bubbles001]

I was diagnosed de novo stage IV over five years ago. Since I only had one small met to my sternum, my treatment had a curative intent and I had a double mastectomy as I have the BRCA2 mutation. In hindsight, I probably would not have had the mastectomy as the disease continued to spread. I had DIEP Flap surgery and it looks terrible and didn’t do anything for my overall survival.

[Layla818]

Yes, bilateral mastectomy in 2004

[Grsmmatruds]

I was diagnosed MBC I. 2014 and told that it had already metastasized so no mastectomy. Then I had a good response to chemo and did have a mastectomy in 2016.

[CarolineBorucki]

If you don’t mind my asking, what was the reasoning for having the mastectomy since your response to chemo was good?

[Shelly1009]

I had a bilateral mastectomy when I was first diagnosed with breast cancer in the fall of 2016. I wanted my best chance at beating cancer and not having a recurrence in the other breast. Sneaky cancer decided to go to my stomach instead.

[8576]

I don't know if my situation will be of help to you. Everyone is different. I had a mastectomy this year, Jan 3rd because my breast tumour had pressed through the skin and left an open fungating wound that would not heal. I had a top notch surgeon and she removed the breast plus all infected lymph nodes. She was sure she got all the disease in that area.

Had a CT scan and bone scan the end of February and no progression. Of course we know that because the lymph nodes were diseased that Cancer is in my blood stream and can appear anywhere. I am 80years old so very much older than most in this group.

I have mets to my left hip as well as severe Osteoarthritis and it has even been noted on scans that it looks similar to Paget's disease on the hip. Never had a biopsy because I have been told it would be too difficult and they are sure it is Breast Cancer as well. I had a second opinion and they agreed.

I also have severe Osteoarthritis in my right knee down to my foot. Just starting in the left knee as well. I have four pelvic fractures not related to Cancer. They are minor and I walk fairly well with a cane, drive my own car, shop, clean, cook and do laundry in a two story house. (The stairs are bad for both my husband and me. Trying to move)

Usually, I have a housekeeper coming in once a month but that is cancelled because of the Virus. She could come back now but I am managing and want to wait a bit longer.

I sure feel better that the breast tumour is gone. My hip is sore but I manage with pain meds.

I am on Ibrance/Faslodex . In the process of trying 75mg. Ibrance. So there you have it. Much of this info I have written before here.

Hope this helps.

Cheers, June S.

[Mcangel11]

I had one in 1997 and I got a different cancer 20 years later in other breast had another mastectomy.. 1 year after that they found i had fluid outside of my lung which showed cancer from my first bc 23 years ago which made me stage 4

[hdhonda]

My original cancer was in my left breast and I had mastectomy. Seventeen years later it returned in the tiny bit of breast tissue left and had gone to my right lung. Have you considered a second opinion? It would seem to be unnecessary to me. But, I have zero medical training. There is probably no right or wrong answer but talking to another doctor might be helpful. Some of the medical centers of hot lines that you can ask questions also.

Good luck with your decision. Blessings, Hannah

[PJBinMI]

I'm another who was not diagnosed until the cancer had spread to my bones. My onc and the specialist bc cancer onc I saw for a second opinion both said that mastectomy is not recommended for those of us who already have mets. I had a lumpectomy after a few weeks of Letrozole. I have lobular bc, which forms strands rather than clumps and can be really hard to find on scans. I've never regretted not having a mastectomy and decided that if opinions changed and it was recommended, I would push for a double and would not do any reconstruction as it can make it more difficult to find local growth of the cancer. I am large busted and friends who have had a single mastectomy and are large busted tell me that having one large breast can cause balance issues which had never occurred to me but now sounds obvious! I have been extremely fortunate to make it to 16 + years with mbc and am on only third line treatment. Wish there were a way I could share that with everybody!

[Hidden]

Hi,

I was keen on the idea of having a mastectomy when I was first diagnosed when my medical team thought it was early stage. They offered me a lumpectomy or a therapeutic mammoplasty, saying that a mastectomy would not be required. But once all the tests came back and I was told it was metastatic, all surgery options were called off. Since I started treatment the primary tumour has shrunk a lot. It can no longer be readily seen on scans. The last few times my oncologist examined me she could not easily locate the tumour. She said it was mostly healthy breast tissue. Treatment can do a lot to shrink tumours, but I can understand why you would want a mastectomy. I felt the same way when this started and just wanted the tumour removed and out of my body.

Sophie