Metastatic breast cancer

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Kazzeruni
Kazzeruni Member Posts: 4

I have been diagnosed with breast cancer which has also spread to my lymph nodes, liver and lungs. So do i need to have a mastectomy? Is there any point seeing as my cancer is incurable?

I'm not happy with what I have been told so just want to hear from other women who have been through this. Thank you.

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  • Moderators
    Moderators Member Posts: 25,912
    edited March 2017

    We are sorry to hear about your diagnosis, but very pleased you found this amazing community.

    Please know that you are not alone. More and more people are living life to the fullest while being treated for advanced-stage cancer.

    Also know that there are a wide variety of treatment choices for recurrent and metastatic breast cancer.

    In addition to talking with others in our community, and hearing their experiences, we encourage you to take a look at our expert content on our site regarding metastatic breast cancer.

    http://www.breastcancer.org/symptoms/types/recur_m...

    Sending you gentle hugs,

    The Mods

  • zarovka
    zarovka Member Posts: 3,607
    edited March 2017

    Kazzurni - Whether or not to have a mastectomy is a complicated question that you can delay answering for a while. Surgery, even in the early stages, is now done after systemic therapy to reduce the tumor size. Since some kind of systemic therapy is always the first treatment for stage IV cancer, go ahead and do the prescribed systemic therapy and then take your time researching the pros and cons of removing the primary tumor by mastectomy.

    I am 15 months into this and at the point where mastectomy might make sense. I've decided to first research treating the remains of the primary tumor with heat (hyperthermia). It less invasive an has the potential to trigger an immune response.

    Aggressive treatment of the primary site is usually only considered when you oligometastatic disease ... no more than a few small tumors in one organ. Since you presented with tumors in your liver and lungs and lymph nodes, you are not going to be considered oligometastatic. However, mastectomy still may come up as an option if you have a full reponse to systemic treatment. If the systemic treatment wipes out all your mets for a while, it may be something to consider.

    I had a few small tumors in my liver and possibly a tumor in my sternum. I meet some people's definitions of oligometastatic, but not all. It's a squirrely term. In my case, systemic treatment appears to have controlled all the mets. The primary tumors are there, but dormant. Some people would do the mastectomy in my case, but it's a rough procedure. I'd have to stop taking Ibrance because it slows healing. I'm leaning towards a local treatment of the remaining primary tumors that is less invasive.

    There is a lot to process when you are first hit with this diagnosis, so inhale, exhale and put this question on the back burner while your deal with the first line systemic treatment. When you have time, peruse these threads:

    Oligometastatic Disease

    Surgery for Stage IV

    Welcome to our esteemed group. If you fill out your diagnosis and treatment history in your profile and make it public in settings, it gives us more context for your questions. MBC is complicated and the context is everything. Many extremely knowledgeable people on this forum, but they need to know your history to really help.

    >Z<


  • Kazzeruni
    Kazzeruni Member Posts: 4
    edited March 2017

    Thank you for your reply. I need to give you a little more information. I have in fact already had the mastectomy, this was done not knowing that my cancer had spread. I am very angry that they didn't give me a scan to check this before removing my breast. They didn't know that I had advanced cancer and they didn't do any tests before to find out and led me to believe that I had breast cancer that could be cured. I have incurable cancer so there was no point removing my breast.

    Do you agree?

  • zarovka
    zarovka Member Posts: 3,607
    edited March 2017

    I am very angry that they removed your breast without checking for metastasis. It's surprisingly common.

    There is a lady in the UK on one of these threads who had her breast removed because they thought she was early stage. Then they found out she was metastatic so they are refusing to approve the reconstruction. They told her that she would not get a reconstruction because she was incurable. The lady has minimal bone mets. She may be incurable but she is, frankly, unlikely to die of cancer.

    I found the thread. Check it out. The discussion answers your question at length but the short answer is that the mastectomy could help you even though you are stage IV. I would not regret it.

    But were they were stupid to assume you were early stage. Yes they were. You might send a private message to cosmogirl, the lady who experienced the same thing and commiserate. It is wrong and there have to be a lot of feelings there. She will get it.

    >Z<


  • Kazzeruni
    Kazzeruni Member Posts: 4
    edited March 2017

    Thank you for your reply Zarovka. very helpful, thank you. I have read the posts about Cosmogirl, she was treated very unfairly, I would be even more angry than I am now if I had suffered those mistakes. I have lodged a first step complaint about what has happened to me and I will go speak to a lawyer if necessary. The NHS in the UK is on it's knees and they are making too many mistakes because they are short staffed and too busy or there isn't enough money to do scans before mastectomies. It is unacceptable to be treated in this way and I am not prepared to just accept it and get on with my life. We need to complain so that processes will be changed and future cancer victims will not be treated in this way.

  • zarovka
    zarovka Member Posts: 3,607
    edited March 2017

    Kazz - I agree. It's not about you. That's water under the bridge. It's about having a health care system that properly diagnoses cancer.

    >Z<

  • Kazzeruni
    Kazzeruni Member Posts: 4
    edited March 2017

    Yes, we all have to work together <3

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