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
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Onedayatatime60
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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.
Yes, it was MBC in 2006. I was foolish in not having yearly mammograms after I stopped taking meds in 2013. I guess I was lucky that my right arm suddenly swelled in 2019 after the cancer destroyed the lymph channel there since that made me pay attention.
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
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
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
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'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.
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.
so in 2015 I had a mastectomy and I was supposed to never have the cancer again. In 2017 I went in the pool to do some exercise lifted my leg and I hurt my rib. I could hardly get upstairs. After extensive testing, they found out that my cancer my bones. my ribs now. That was in 2017. I went on the faslodex , Verzenio and Xgeva
I'm so sorry. Your doctor should have still done periodic scans after the mastectomy. And I wish they'd stop telling people they are "cancer free!!" They never really are.
I realize I am never cured and at any given second pop back up. I’m not one of those people that are a bubble. I know I have cancer till the day I die stage four regardless if it shows on scans or not, I still have scar tissue which who even knows. Anyway, I wish you the best.Xx
...I had stage 1 breast cancer in 2000 and had a mastectomy on left breast. Also, did 5 years of Tamoxifen. Also, had left breast reconstruction (diep flap). In 2017 was diagnosed with stage 4 in left breast. I have been on Ibrance/Letrozole since then. If I had it to again, I wouldn't have a mastectomy unless recommended by my oncologist. It was my idea to have it done. It feels like I put myself through a lot of unnecessary surgery that in the end didn't make any difference. I recommend listening to your oncologist and maybe get a second and third opinion. Wish you the best. Prayers for you. Hugs, Hannah
I was diagnosed de novo and wasn’t offered surgery as it was too late. There was a study done on the subject of mastectomy or not and the result was neutral. People who’ve had it don’t regret it and people who haven’t don’t regret it. It basically is one of those things that some people desire because of a better out than in approach. A friend is like that. She didn’t go to stage four but if she did she’d insist on surgery. That was her first question to me when I was diagnosed. When is the surgery? When I said there would be no surgery she immediately pictured me dying. I know that because she told others and it came back to me. Her sister had breast cancer too and she had everything. Mastectomy, 9 hours of open brain surgery and every drug you can think of. She lived 17 months from early stage to late stage cancer. But I’m still here nearly ten years later.
One advantage of keeping the tumour is that it is a reliable indicator of how well treatment is working. I have bone mets and they can be tricky to track. But as long as the breast lump doesn’t reappear then you can rest assured that the treatment is working. Probably. There’s no guarantees. A couple of years ago a new mesenteric node lit up but rather than changing treatment the radiologist told the oncologist to order a new scan in 12 weeks. That scan showed the node was half the size it had been and following scans continued to show that until it disappeared. Last year I felt a new breast lump but a post here asked if anyone else had a lump and several did. Turned out it was a fatty lump. Mine hasn’t been diagnosed definitively yet but if it’s grown in the last few months it’s grown very little. I’m going with fatty lump until I have proof otherwise.
All surgery has risks. It’s my preference to avoid unnecessary risks. But others feel differently. I’ll try to google the study about the value of a mastectomy for stage four. I don’t think I saved it but I remember that I read it in the Daily Mail.
I was initially diagnosed with a large ...almost 3cm... lump in my left breast. I had just turned 50 and I had my first oncologist meeting before having all the scans.
In that first meeting we discussed that I'd have surgery....and I was given options of lumpectomy, single or double mastectomy....with the onc recommending a double... but then after having mri, and ct scans it was found that I had extensive bone mets and all the previous protocol changed in a matter of days.
I was told it was pointless doing surgery as I could never be free of the cancer that was in my bones and that keeping the primary was helpful for monitoring the treatments progress.
That was four years ago...the primary is now invisible to the eye on mammograms...and I've been stable taking ibrance,letrozole, zoladex and zometa IV.
I originally started the Zometa bone treatments with monthly IV infusions. After 2 years I was lowered to 3 monthly infusions and I now have them every 6 months.I only had symptoms the first time...even though I was given paracetamol 30 mins before and the infusion was administered slowly over 30 mins...which is recommended the first few times....I had flu like joint aches and some stomach upset for a few days afterwards.
I'm generally symptom free with my meds. I have joint pains that come and go which I think is more from the hormone reducing/blocking treatments (Femara and Zoladex) than anything else....but I've managed to stay active although I'm somewhat slower and creakier!
I think the strengthening treatments have helped to reduce my bone aches.
I used to have daily pain in my ribs that kept me awake at night as I couldn't find any comfortable way to lay down.
And surprisingly with my extensive mets from skull to pelvis and every bone between in my torso being riddled....I've not had any structural issues either....so I would recommend.
I have wondered this too as I was told at stage 4 I would not be able to handle surgery. But the tumor in my armpit is very painful and I can’t use my left arm. They will not even do palliative surgery and it is only 1 cm in diameter. So discouraging because I have seen some research indicating overall survival is higher with the primary tumor being removed.
When I was first diagnosed in 2018 at age 50, they did not realize I was stage 4. I opted for a lumpectomy, which was to be followed by chemo and then radiation. A few weeks after my surgery they determined that I was actually stage 4, and similar to Discocat's experience, the whole treatment plan changed. I am quite sure that if they had realized I was stage 4 at the beginning, they would not have recommended surgery. I have been on ibrance/letrozole since 2018 and have not had any progression. I don't know whether I would have done as well if my primary tumor had not been removed, but I suspect I would have. I had a complete metabolic response to the Ibrance--three months after I started taking it, all the spots on the PET scan were gone. Presumably the primary tumor would have shrunk as well.
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Mastectomy or Not?
