Love reading your comments. Today I come for some assistance for a friend. I was diagnosed with my primary 20 years ago. MBC showed up last year. There was really no surgery question for me--I was scheduled for a bilateral from the beginning.
A friend of mine was diagnosed in November. At first, they only knew about the primary in her breast and lymph nodes. Before her first chemo treatment, they found MBC in her spine. She completed her chemo a few weeks ago. She went today to see the surgeon, totally thinking this visit would be to schedule her surgery (just one side). Well, the picture has suddenly changed. She has responded really well to treatment and there is less of a tumor in her breast. However, since they now found the spine involvement, they do not want to proceed with the surgery at this time. They want to take a wait and see approach. They will do scans every three months to make sure there is no progression, but she either may never have surgery, or they may just do a large lumpectomy.
How does everyone feel about this? What is the standard of care these days? The surgeon says that surgery will not extend her survival time at this point, so why bother. Add to this that she is 64 and on the brink of Medicare. She currently has decent health insurance through her employer. This was a real emotional blow to her, as she was really looking forward to surgery and then radiation.
Looking forward to your comments.
Anne (in Cincinnati)
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It's wonderful that you're looking out for your friend...💜
I don't know what the standard protocol is but it seems -- from what I see on this board and just googled -- that some women with metastatic disease do get mastectomies. I actually saw one headline (sorry, I should have saved/shared it) that indicated that, contrary to common wisdom, getting rid of the original tumor can be beneficial.
Now, that having been said, I suppose a lumpectomy would accomplish the same thing?
If it were me, I would push for a mastectomy, even if that meant searching for a doc who would do this. Although I know that's not rational. But it's a psychological thing to get rid of the source of your disease...
I do hope others with more relevant experience respond....I had the bi-lateral mastectomy when I was first diagnosed at an earlier stage.
This unfortunately sounds like a blow. It's a different ball game. Where I live once they detect Mets they don't do mesectamies. Something to research and get second opinion. Good news it's not in internal organs.
Radiation has proven with help from Above effective in treating the bones, and most often with minimal side effects.
Please be totally encouraging and positive with your friend, makes such a difference,insime ways positive thinking makes all the difference
From what I’ve read, once you have mets, then they don’t do surgery. I had a mastectomy and developed my MBC 8 years later. At that time I had bone mets and one small tumor under my arm on the mastectomy side. That rumor was not removed but has disappeared with treatment of my bone mets. It’s just not worth putting your body through the shock of surgery when you are going to be treating the cancer in another way. There are always risks with surgery. Your friend should not be disappointed at not having surgery, it’s not fun and will delay treating all of her cancer. Elaine
I have not had surgery either. I was diagnosed at Stage 4 so Surgery would not accomplish anything as it has already spread. It does save the difficulty of surgery.
I was in this situation when first diagnosed. A pet scan found a single met in my sternum. I had a choice of pursuing this disease as potentially curable and throwing everything at it or going the palliative route and start w hormone therapy moving to ibrance, etc. I chose to go the curative route and had multiple surgeries, extensive radiation, chemo, etc. and all the side effects entailed. Guess what? The cancer is now extensively in my liver and bones. I was not cured. I know the thought is to cut it out, but once it has spread, it probably doesn’t help and results in extensive side effects and a disfigured body. In hindsight, I would have gone the palliative route. I think your friend has a choice since she is oligometestatic, so can get a second opinion. It’s not an easy decision. She just needs to have all of the info.
Hi Anne,
Your friend is fortunate to have you looking out for her! We all need friends like that.
Sadly, your friend's situation is not uncommon. When I was initially diagnosed I was told the disease was early stage and I was given surgery options (lumpectomy, therapeutic mammoplasty; a mastectomy was not considered "necessary") and told to think it over before reaching a decision.
However, once I had completed all my MRIs, CT scans, bone scan, PET CT and the various biopsies (I've had four since my diagnosis) I found out that the disease was metastatic and all surgery options were called off. It is a real blow when you are geared up for surgery and the removal of the primary tumour. There's something satisfying about knowing that the source of your disease is about to be removed from your body. I felt like the medical team had given up on me and thrown me on the scrap heap. But hormone therapy has really helped in treating my disease, and hopefully your friend will find her treatment effective too.
Sophie
I wish I had been given the option to not have surgery when I was originally diagnosed. It was after the surgery before I even healed from the mastectomy (right side only) that they discovered my cancer had metastasized. I had many complications with the surgery and actually had to go to a wound care specialist for months in order to heal. I lost a considerable amount of weight in the following years and the implant in my right breast is now three times larger than my normal left breast and nothing can be done about it at this stage. If I had to do it again I would have skipped the surgery. It may actually be a blessing not to have to make this decision. I wish your friend much luck in whatever course she elects. I would hope that my experience is uncommon because I would hate to put anyone through what I went through only to be left with a disfigured body.
Much luck, let us hear from you about her decision.
Anne, they usually don't remove the breast for MBC as the patient will be on treatment for breast cancer for life. The treatment should shrink it some. Best wishes to you and your friend. Blessings Hannah
I have MBC to spine and the doctor sounds half right and half wrong to me. I would agree that decision to perform surgery is now academic and that leaving the breast tumor allows to see its reduction/disappearance in future scans following therapeutic treatment. My biggest question, though, is why would the oncologist not recommend that she commence on a combination of Ibrance/Letrozole to treat the mets. Can't even imagine being satisfied with a "wait/see" approach?
Please keep us posted! God bless both you and your friend!!
Linda XXOO
My situation is slightly different I had er positive Pr positive her2 neg 8years ago I was treated with Chemo ATC , radiotherapy and 7 years of Arimidex . A routine virtual colonoscopy showed a lesion on t5 which was Mbc a new one her2 positive , er positive . Pet scans , bone scans were done and no breast cancer in breast just the one lesion . I requested a bilateral mastectomy but was told “ horse had already bolted “ I had 2 sessions of taxotere but developed abscess in bowel so had to stop . I had cyberknife to lytic lesion on spine and it responded . I’m now on Herceptin and Perjeta every 3 weeks for life or as long as I Remain Ned . I also have Zometa every 6 weeks and Letozole daily for the Er Positive .
Similar to other responses -surgery seems to take a different role once diagnosed metastatic. I was stage IV immediately with liver and bones. I assumed the first thing we'd do was surgery for the breast tumor (I knew nothing at all about breast cancer or treatment other than you had surgery/chemo/rad) and my oncologist quickly moved my thinking to the liver and not the breast. She said doing surgery on the primary does nothing to help with the actual threat to life due to the spread - so we focused on the liver and bones. The tumor in my breast responded too and it's now gone. She also said that the fewer surgeries or invasive procedures the better to stay as healthy as possible. We do talk about it occasionally and it seems there is some divided science as to if it helps with overall survival.
I guess the short answer is standard of care is all about the mets -where they are, what subtype, amount, etc.) As of now, 4 and a half year in, the breast tumor is not visible nor active.
I just wanted to tell you of my experience. I was diagnosed MBC from the get go. Her2- in the breast. Then I found out her2+ in my lung. Herceptin perjeta and taxotere worked on all of it until the taxotere was discontinued. The tumors started growing back in my breast. I insisted to have it taken off. I did last October. I chose not to have reconstruction. I’m 52. I feel so much better not worrying about it in my breast. I’m still on herceptin and perjeta and it is still working for me.
I have to believe it has helped me by having a mastectomy. It can be done even if you have mbc. You just have to push for it. I also think the view has somewhat changed about overall survival time if you do have the surgery based on how extensive your Mets are.
Like some of the other ladies suggested.... I would not wait and watch. I think you have to be aggressive and keep shooting for No Evidence of Disease.
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