surgeon doesn't want to operate

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mshar
mshar Member Posts: 23
edited March 2019 in Stage IV/Metastatic Breast Cancer ONLY

Hi all,

I was diagnosed in Sept. 2018 with ER/PR+ breast cancer with mets to bones and a large tumor in the left breast. The original treatment plan was to do chemo, mastectomy, radiation, and then hormone therapy.

I did taxol and AC from September to January. My most recent PET scan shows no hypermetabolism anywhere, and the MRI report doesn't mention any mass in the breast whatsoever. After looking at the scans, my surgeon has said she doesn't see anything to remove and so doesn't want to operate at all. The most she would do is a lumpectomy for one small spot she sees that could be a remnant of the tumor, but she's skeptical.

For some reason, I am nervous about the idea of not doing any surgery. There are some women who have never been diagnosed and get prophylactic mastectomies, and other women who are diagnosed at earlier stages who still have mastectomies after chemo or have mastectomies without having any chemo. I don't want to feel that I have left any stone unturned.

Has anyone dealt with a similar situation, or had to decide whether to do surgery? I know surgery isn't necessarily standard in the metastatic context to begin with, but I'm having a hard time thinking this through.

Thanks!


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  • el7277
    el7277 Member Posts: 64
    edited March 2019

    Mshar...that is interesting. As my breast surgeon told me this week " the fire had to start somewhere" and that because of stem cells they remove surrounding tissue. I would get a second opinion. My surgeon is supportive of my having a double mx for stage one idc, grade 2, no nodes. If you are uncomfortable with what you are hearing I would seek another medical opinion. Good luck.

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  • pajim
    pajim Member Posts: 2,785
    edited March 2019

    mshar, whether to operate on the breast of stage IV MBC patient is a controversial area. Surgeons don't agree on what to do or in what circumstances to do it.

    Some feel that removing a large tumor (if there is one) is lessening the burden of disease and makes it easier to treat the rest. Some feel that the cells in the breast die off with the treatments same as the rest of the cancer. Someone tried to do a randomized trial of this but I believe they had trouble enrolling patients. Women have strong feelings one way or the other and don't want to be randomized.

    My personal opinion (to be taken with a several grains of salt) is that if there is no more tumor in the breast why would you want to remove it? Mastectomy is physically an easy operation but it's a major psychological blow.

    Best of luck whatever you decide.

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  • EV11
    EV11 Member Posts: 127
    edited March 2019

    Hi, mshar-

    The issue of mastectomy for stage 4 patients living in the US is very unresolved...there are a few trials with patients in countries that don't have the same arsenal of medications that we have here in the US, and for those patients mastectomy at stage 4 seems to have some benefit, especially in patients who live longer than 3 years post MBC diagnosis (there is no apparent benefit for those who have more aggressive disease, it appears.)

    However, there is much evidence (mostly in early stage disease, but the biology should be consistent-- or some models show more likely-- for advanced disease) that the stress of surgery can actually promote metastatic seeding and expansion of already-established but dormant metastatic colonies...the general recommendation is to NOT remove the breast unless the breast lesion is causing discomfort/is open and weeping or otherwise directly problematic. After doing MUCH research and talking to clinicians and basic science researchers I opted NOT to have a mastectomy with my de novo stage 4 diagnosis...I am still alive and well almost 4 years post diagnosis and do not regret my decision.

    But if you feel strongly that you want the breast removed (and are willing to deal with the stress and discomfort of surgery and recovery, which is not a walk in the park, especially if you want to do reconstruction....) you can ask for a second opinion....most insurance companies will cover a second opinion (usually restricted to in network providers.) If you do seek a second opinion, I would suggest that you get it from a surgeon in a different medical group than your current surgeon....there tends to be similar approaches within medical practices...

    I hope that you have a good medical oncologist as well as a surgeon who can help you investigate the pros and cons of each choice. This is only the first ambiguous decision you will likely face in the course of your metastatic journey...there are so many areas where there is no clear-cut path you should take. That is a mixed bag for sure.


    I wish you support and clarity of information as you make your decision. Rest assured that there is no clear "right answer" for this one.

    ....let us know what you decide.

    Elizabeth

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  • mshar
    mshar Member Posts: 23
    edited March 2019

    Thank you all for the responses - it's really helpful to hear about your experiences. I think I will get a second opinion, just to cover all my bases. I also decided to have another biopsy to get as much "proof" as I can that there isn't anything left worth removing. Either way, it's a lot to think about.

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