Should I push a Mastectomy surgery or not?

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Awheeler
Awheeler Member Posts: 6

hi ladies!

Im currently sitting here waiting for the time to pass while I’m having my third chemo session.

I can’t help but wonder where my cancer journey will take me and what roads I should take or pursue.

I talked to my oncologist about having a mastectomy even though I’m stage iv. I was diagnosed de novo with bone mets to a few vertebrae.

He was open to me talking to a surgeon but also said there really isn’t any data supporting a longer remission or time between the cancer coming back.

I would just like to hear your stories if you’ve had a mastectomy even though your cancer has metatisized.

Thanks!

Comments

  • Anonymous
    Anonymous Member Posts: 1,376
    edited October 2020

    Hi Awheeler - I was stage 1 (no node involvement) in 2008 and stage 4 in 2019. I did not have a mastectomy but wanted to post because I had a lumpectomy/radiation and chemo and had a "low risk of recurrence" statistically after treatment. I took femara for 7 years after treatment. My stage 4 did not come back in my breast tissue - so a mastectomy would not have helped me way back in 2008.

    I am telling you this because current thinking is that if it's in your blood stream, it's out. I would hate for any complication from the surgery to interrupt your treatment. Also, I wonder if it's helpful to monitor your breast tumor to see how the chemo is working? 5 years after I was dx my best friend was dx and she had chemo first, then a mastectomy (stage 2). The chemo she had first didn't really shrink the breast tumor so they switched chemos. Really helpful to know what was and wasn't working. Just my 2 cents!

  • Anonymous
    Anonymous Member Posts: 1,376
    edited October 2020

    I think this may be in the de novo thread, but some of the HER2+ ladies have had surgeries done as part of their treatment plans. HER2- it seems to be a toss-up and there are certain risks to weigh in terms of coming off treatment in order to have the surgery and if there are any complications. The research isn't very clear cut one way or another, and I've had difficulty getting an opinion to go that direction. Hell, I don't even want reconstruction! But actually I am starting to come around to living with it as I've found interruption to treatment schedules rather stressful, and that is just for getting injections and everything else done. It takes up a lot of mental space that maybe shouldn't be used on this aspect.

  • KBL
    KBL Member Posts: 2,521
    edited October 2020

    I’m Stage IV, and when I asked my doc about it, he said the reason for mastectomy is so it won’t spread. Since I had already spread, it really wouldn’t have helped. I was grateful not to have to go through with a surgery after finding out I was de novo.

  • Goodie16
    Goodie16 Member Posts: 446
    edited October 2020

    I opted for a mastectomy after my initial diagnosis because my surgeon didn't like the look of the cancer on the films. He reiterated that he was glad I chose a mastectomy after he completed the surgery. 9 months to the day of my mastectomy surgery, I had a seizure that led to a craniotomy to remove a suspected cavernoma that turned out to be a brain met. I've been NED since my craniotomy in 2015. For me, I'm glad I chose to have the mastectomy, even though it was a tough surgery and recovery.

  • Cure-ious
    Cure-ious Member Posts: 2,626
    edited October 2020

    Awheeler- Of greatest importance is whether you have under five mets and only in one location (eg. bone), which would mean that you are oligometastatic, and that you have potentially a great outcome especially if they are aggressive now in the chemo plus radiating those individual mets. In about a quarter of those cases, that treatment is either curative or the cancer does not come back for many years. In that case, treatment would presumably also include removing the primary tumor.

    However, this issue was addressed in a recent clinical trial, which showed no benefit to removing the primary tumor, in terms of overall survival. That should resolve it, however these kinds of trials are always looking backwards, whereas we may have such excellent meds coming out that people live such a long time to where you do see a benefit of having had it removed, it could be possible that looking in the rear view mirror, you might decide that getting it out it was a good call.

    Another issue is mastectomy has risks with lymphedema and can really hurt quality of life. If the primary is not large can it be removed by lumpectomy?

    A final issue about keeping it, and I really have no opinion one way or another about this question as its so complicated, is that there are pre-clinical data showing that having the primary tumor present can make immunotherapy work better, by giving a bigger source of cancer cells for the immune system to prime off of, and know what to go hunt for. Incredible to consider that leaving the tumor in there could be helpful for some future treatment. All in all, there are many considerations, so a second opinion could be helpful to make sure you are comfortable with your decision. The existing trial data clearly say there is no benefit to surgery, but they are not looking specifically at the oligometastatic population that have very few mets.


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