Hi All,
Why do some MBC’ers get a mastectomy ? Even some that are not Oglio’s? Do you think there is a benefit? I know they say there isn’t but I’m seeing those who had it done seem to have longevity. If you had a mastectomy how long have you had MBC? If you have not please share your thoughts and how long. Thank you
I’m very interested in views on this. I’m oglio and de novo and my oncologist has assured me that there is no benefit in any form of treatment other than the endocrine therapy which I responded well to and am NEAD (so far). I have pushed him quite a lot about this as many women I have met in similar situations have had chemo and lumpectomy/mastectomy but he’s pretty adamant. I still wonder though!
I had lumpectomy, light chemo and radiation in a clinical trial that randomly assigned me to get the works, instead of just lumpectomy and Arimidex. The results of the trial show no benefit in terms of recurrence from the radiation and chemo. The surgery supposedly took care of everything. Obviously not since I am here, so I do wonder if a mastectomy would have gotten any cells that escaped the lumpectomy, but at the time, I was so relieved to keep most of my left boob.
upon primary diagnosis of BC...I had full mastectomy, in addition to 5 months of strong chemo (red devil) and 6 weeks of daily radiation to chest wall. only to have the cancer return 3 years later and diagnosed with MBC. in my case, having mastectomy was not a guarantee at all, since I had reoccurrence despite the mastectomy.
but I do not regret having the mastectomy. I was relieved to get rid of the cancerous boob regardless of the reoccurrence.
😢 My feeling was like yours: cut it out, ASAP. I had two surgeries in a row. After the first, the oncologist said she didn't think the margins were big enough. She said I wouldn't be comfortable with them. I said I was perfectly comfortable; she wasn't. The second surgery, 3 weeks after the first, was much more disfiguring and harder to recover from. Then I was declared "cancer free" for 13 years. So who knows? They don't, either.
when I was told I had MBC they would not do a mastectomy because MBC is not curable. I’ve always wondered why some people do get mastectomies? I was diagnosed in June of 2020.
Hello everyone ☺️. I live in the UK and was diagnosed with breast cancer in January 2021 (mid-pandemic). Due to the pandemic and different protocols as a result, I received no treatment whatsoever until May 2021 when I had a double mastectomy. I was assured it wouldn't get worse in the meantime. Just before my surgery they did a scan.... but no one gave me the results until after the surgery which basically ascertained the cancer had spread to my spine and pelvis. In a way, I am glad the mastectomy was done as I don't worry about the cancer there now... but, although I don't dwell on it, I do wonder if it was strictly necessary since the cancer had already spread and why on earth did they not scan me straight away since I had so many other biopsies etc. Anyway, what is done is done and I'm on Letrozole, Ibrance, Zoladex and denusomab since Aug 2021 and everything thankfully has remained stable.
I am lobbying hard to have R breast (G cup) removed as strongly believe from ongoing symptoms that the tiny IDC (7mm) in there was part of hidden much larger pleomorphic lobular disease. I had a left mastectomy 15 mths later for 8cm+ scanned as only 1.7cm by MRI. R breast has classic signs of PILC. It wasn’t removed at same time due to Covid restrictions preventing ‘unnecessary’ surgery but have been lobbying hard to get mastectomy despite metastatic spread to spine. I just don’t want thereto be a large ‘pool’ of cancer which could flare up once my mbc treatments start failing. Though I already had 19 positive nodes on left side (one was 3cm) some of which had leaked into armpit. The meds/docs are fab at keeping me healthy with minimal problems - I just would like that extra bit of reassurance from the mastectomy and more to point, to be completely flat rather then wrestling with bras and prostheses.
I’m Lobular too and that’s my concern things that appear small are not. It also seems there might be a clinical benefit. I see the will do mastectomies on younger women, which is great as I can’t imagine, I’m 62 and it’s awful. I feel like they give up on you if you’re a bit older. It sounds like it was a good decision for you. I hope you get the other breast removed it’s our bodies we should have a choice but for some reason they choose for us.
I really would like to go completely flat for the comfort of not having to wear a bra. Having said that, Bravissimo now do a fab post surgery bra which has centre opening flap for prosthesis - makes it so much easier to put on and swivel round. But I long to wear just a bralette.
I had a single mastectomy in June 2021 after being diagnosed de novo stage 4 in December 2019. My doctor had been to a virtual conference where it was discussed as appropriate in some cases. I am happy to have had the surgery as one of my 3 cancer spots is not gone. My cancer has not spread since diagnosis. I take Ibrance at 75 mg and anastrozole. I am IDC.
can I ask if you’re in the US and if so what hospital did you get this done at? I’m a bit jealous😊 but happy for you ❤️❤️
I had a lumpectomy. My original onc plus others all say the data doesn't show any benefit to full mastectomy. They thought I was stage 2 but was stage 4 as they found out 4 months later. But I'm still here 9.5 years later!
so do you think it was a benefit ? Sure sounds like it 9.5 yrs later ! That’s awesome! Back then things were different too.
I don't think it makes any difference regarding overall survival. I had large beasts, so I was delighted for breast reduction surgery. It was my silver lining. Not much, but I'm happy to take whatever I can get.
I live in Minneapolis MN and had my surgery at Fairview Southdale Hospital in Edina. My oncologist at the time came from China which might have been a factor in her willingness to push the envelope. As aside: might I know you from bco.org support group? Mary Jane
hey Mary Jane! Were you MBC when you did your surgery? Every week your report makes me smile ! “Doing well nothing to report” I hope your snow is melting !
Yes, I am de novo MBC 2019 . Dr Lee Lisa Ge thought I could have the surgery and then radiation on my hip and be done. But the surgeon (who did a lovely job) wouldn't touch my lymph nodes as the cancer was too deeply embedded. She said I would get lymphedema which would not be good. Then Dr Ge left the practice. My current doctor thinks more traditionally.
I am quite quiet in our group as I don't want people who are struggling with side effects to feel that they are doing something wrong. For whatever reason I've had an easy ride so far but my turn will come.
See you Monday.
I don’t recall there being any discussion about not having a mastectomy. I had two tumors, ductal and lobular on the right side. Before they realized it had gone to my bones, however, I was going to have an implant and so opted for a nipple sparing mastectomy. Having large breasts, this meant they also saved skin which means I also have a skin fold. When I get hot and sweaty, which is practically constant, inside the fold can get an open rash, so I have to treat it with nystatin powder. My tumors were very near the chest wall. Anyway, once they found out that my entire skeleton was covered with mets, no implant surgery for me. So, Still have to wear a prosthesis and deal with the fold, but I’m glad I had the mastectomy. I wanted those tumors OUT! What I would really like is a reduction on the left side, but that’s not happening. I’m just happy to be here 8 years later!
I agree getting things out seems to make sense to me. It sounds like the right choice here you are 8 yrs later! I hope you’re doing well. We’re you MBC from the start?
Was diagnosed with stage 1 breast cancer and was given a choice of lumpectomy, radiation and Tamoxifen or left mastectomy and Tamoxifen. I chose mastectomy because mother and sister had both had breast cancer. Sister is alive and well and Mother's cancer never returned but she is deceased. If I had to make the choice today, I would choose a lumpectomy.Best wishes and blessings. Hannah
thank you ..I’m sorry about your mom, but glad you and your sister are doing well❤️
I was originally diagnosed in 2013 with BC in both. Interestingly, one breast was Her2+ and the other was HR+. Had double (bilateral) mastectomy. Was diagnosed in 2020 with MBC, presenting in left lung. Was shocked but told that those with Her2+ had a 50% chance of recurrence. Something we all should be told to help manage our expectations and keep us vigilant. Not helpful to file under lessons learned when you get an MBC diagnosis. After 7 years I thought I had beat it. Getting back to your question, in hindsight I would have made the same choices with the double as it surely has prolonged my life. Attempted reconstruction? That’s a topic for another time. The sort answer on that is a big NO but that’s just me.
I’m hearing more do than not ppl are glad they had some type of surgery whether a lumpectomy, mastectomy etc. Sounds like it was a good decision for you. I hope your current treatment is working wonderfully and keeping things at bay.
I was diagnosed with denovo metastatic lobular bc in March, 2004, the month of my 58th birthday. I had a "partial mastectomy" (what most call a "lumpectomy") and the surgeon reported cancer cells in my chest muscles beneath the breast tissue. Those were not removed as it would have been extreme surgery and would have left me with nothing between bones and skin. The cancer was E + P + her2neu - and I did well with anti-estrogen meds plus bone meds as I had bone mets only until just the last few years. As I have thought about this over the years, I'm glad I had just the one sided lumpectomy. If it was decided that I need a mastectomy, I would push hard for a double with no reconstruction. Before cancer, I wore a C or D cup bra and a good friend who was also large breasted and had a single mastectomy told me that she wass often a tad off balance due to being so lop sided. I'd pass on reconstruction as it can make it harder to detect progression in the breasts. If I'd been in my 30's, my thinking might have been very different, lol! I'm now 77, cancer has changed to triple negative recently, and while the "extensive" from the beginning bone mets have not caused me any problems, I've had cancer show up in a ureter (tube between kidney and bladder), on the surface of my cerebellum, and in my abdomen causing an intestinal blockage that I had to have emergency surgery for back in October of last year, six months ago. That has been by far the biggest problem with this cancer. My digestion is effected, both going in and coming out! I've lost nearly 50 pounds and now weigh about 25 pounds more than when I was a teenager. I've had pretty good medical care and have gotten second opinions at U of Michigan Cancer Center from bc specialist oncs. They've always supported what my closer to home oncs have recommended for me. I'm currently on Xeloda, 1500 mg twice a day for 7 days on and 7 days off. I have recently developed osteonecrosis of the jaw so Xgeva is on hold and the oral surgeon I saw has me on an Rx mouth wash twice a day. I live with my husband of 21 years on ten acres that is mostly wooded, in a rural conservative area. Our house is one we fell in love with and bought in 2006, with plenty of room for visiting family and friends. We have one small dog and six cats who were all strays who showed up here or at one of our daughter's. I love having a purring cat or two on my lap and often end up with our dog there, too. Fortunately, we both love animals and had pets and other animals our whole lives!
I've been our family "bookkeeper" and we just got our tax info to our tax guru on Monday (he's over 50 miles away). He called today and our tax forms have been sent in electronically and we are so releived that this is finally done! My brain is not as dependable as it used to be! lol This is where it hurts the most! We do not want tax problems on top of dealing with cancer! Yesterday I got phone calls from two different long time (50 years) friends--it was so wonderful to hear from them! One's husband has macular degeneration and can't see well enough to read or recognize other people. A reminder that cancer is not the worst..... and that at our ages. our health is often our biggest concern.
My love to all here, Pam
You have successfully managed this diagnosis in such a wonderful way to have a full life and view things in a positive way. I hope and pray I can get longevity, I’ll be 63 in September but mentally I feel younger wish my body did too! Like you I have dogs and cats, love the outdoors and live remote on 5.5 acres. You gave me a sense of peace reading your post. Thank you for that. I’m still navigating this diagnosis and after 14 months I feel I still have some figuring out. Somehow I feel some sort of deeper options other than medication leads to better outcomes, as I’m not convinced by there studies, there are so many variables with studies that I’m just not all in. I really appreciate you sharing how you managed all these years, it gives me a perspective of what the potential can be. I know we are all so different with how little or slow or how fast our cancer will grow. Its how we live with it to enjoy what we have.
I think it was from a biopsy but may have been bloodwork
MBC diagnosed 2017 de novo. No surgery and still have my lumps.
This has all been helpful comments. I was diagnosed in 2020 with MBC. My right breast tumor has gotten smaller but my doctors said no surgery due to the fact it has spread to lung and bones.
Great question. I’m FOLLOWING. I am in such pain in my spine and ribs when wearing bras. Due to having large breasts that I hate, I have to wear bras when I go out. But I don’t want to go out much or have people around, because I don’t want to wear a bra. It doesn’t matter what I wear. Believe me. I’ve tried everything. From tight singlets to soft crop tops.
My Oncologist said I’m not allowed to have my breasts removed. I’ve asked twice.
PS. I don’t know what Oglio means. I am HER2 Pos. Mets to spine, ribs, sacroiliac and skull. Too numerous to list spots.
I have the same issue my drawer is filled with a variety of bras I’ve tried. I have large breasts and it certainly can’t help with back pain either. I have gotten the same response from my medical team.😢
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