Mastectomy at Metastatic breast cancer that spread to the Bones?

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Chrstene502
Chrstene502 Member Posts: 9
edited September 2018 in Just Diagnosed With a Recurrence or Metastasis

New Poster here.

I was diagnosed with breast cancer that spread to my lymph nodes under the arm back in Oct 2017. Breast surgeon sent me to an oncologist, who said to have port in my chest for chemo. Dr also sent me to have several scans done. November Had the port surgically installed and had the scans. The following day, I was to begin Chemo, at which time the Oncologist reviewed the scans. He told me I have Metastatic breast cancer. Cancer has spread to my bones and he wasn't going to do Chemo.-- He said he made a big mistake not ordering / reading the scan reports before I had the port put in.

Oncologist put me on Ibrance and Letrozole.

Breast surgeon told me since the cancer has spread a mastectomy wouldn't be an option for treatment.

April I had another PET-CT Scan done, which showed my tumor has shrunk drastically.

Now June, Both my Breast Surgeon and Oncologist feel I am doing great on treatment and are suggesting a mastectomy.

Read online that mastectomy won't help with Stage IV Metastatic breast cancer.

I don't know if I should have the mastectomy or not. I have an appt with my Breast surgeon to discuss this.

Advice please!!!
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  • Moderators
    Moderators Member Posts: 25,912
    edited June 2018

    Hi Chrstene502-

    We want to welcome you to our community! We certainly understand your dilemma, especially when you've gotten conflicting information on your journey. We think you might find our forum for members with metastatic cancer helpful, the members there are very knowledgeable and may be able to offer some insight: https://community.breastcancer.org/forum/8

    The Mods

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  • mustlovepoodles
    mustlovepoodles Member Posts: 2,825
    edited June 2018

    Have you considered a second opinion from a different oncologist? It might be worth your while to see what he/she suggests, especially since there doesn't seem to be a clear cut answer.

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  • dtad
    dtad Member Posts: 2,323
    edited June 2018

    Chrstene502...so sorry you are going through this.m I agree you should get a second opinion at a major university teaching hospital. What is the rationale behind getting a mastectomy?

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  • Chrstene502
    Chrstene502 Member Posts: 9
    edited June 2018

    Mustlovepoodles and dtad


    I went Sloan which the top Cancer Research Center in New York.


    The Doctor there said I was getting the right treatment for my cancer.


    What I didn't like was the Doctor didn't make another appointment to see me. Nurse said she would call me. Few weeks after the visit, I received a strange call about confirming a Bone Biopsy. I had never made this appointment. Nor any info on the procedure. So I cancelled. Two weeks went by received another call confirming a Bone Biopsy at Sloan. Again, cancelled. I left messages with Sloan, wanting to know about this...No reply. Then received a call, I was fed up and didn't answer. Didn't like the way Sloan was dealing with me. So never went back.
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  • KBeee
    KBeee Member Posts: 5,109
    edited June 2018

    you deserve to be treated better than that. Maybe opinions at NYU or Rutgers.

    My cancer is not metastatic, but I know 3 women with metastatic cancer who had mastectomies, so it is not necessarily clear cut. Do a web search on removing the tumor in metastatic cancer. I seem to remember reading a study last year which said if the primary tumor is removed, patients have longer time before progression

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  • JoE777
    JoE777 Member Posts: 628
    edited August 2018

    I have metastatic BC HR+ in my lower back. Pet scans show no cancer anywhere else, all lymph nodes normal. Doc never mentioned mastectomy but no disease there. Hope you reach the path of treatment you're comfortable with. Hug

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  • NineTwelve
    NineTwelve Member Posts: 569
    edited August 2018

    I have metastatic BC, too. Surgery was immediately taken off the table for me when they found the mets. Though my mets are on my sternum and lung, so that may be a factor (organ involvement). At any rate, there are some advantages to not having a mastectomy: my MO monitors my primary tumor via CT scans and if it changes size, we know if the tx is working (or failing, which is also important to know.)

    It was worth considering, too, how much of my limited remaining months or years I want to spend recuperating from the amputation of my breasts. Some patients have complications, such as lymphedema, cording, pain, etc, which can affect quality of life.

    I was disappointed that I could not cut my cancer out of my body, but for now, I am also thankful not to have to go through that surgery. I continue to hope that I may be as good as cured one day, and that that cure could happen without surgery.

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  • SSInUK
    SSInUK Member Posts: 245
    edited September 2018

    I am not metastatic but have a close friend whose story is very similar to yours. Bone mets found after chemo before surgery. She went ahead and had a double mastectomy with Diep recon. Doing great after 5 years on hormone meds only. There is hope

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