IBC Stage IV with bone mets- remission?

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Mary6886
Mary6886 Member Posts: 15
edited April 2021 in IBC (Inflammatory Breast Cancer)

Hey there!

I am nearly 53 years old and was diagnosed in July 2020 with IBC stage IV with bone mets. I have had Chemo (Taxol then AC), single mastectomy and 25 lymph nodes removed in January 2021, and completed 44 radiation treatments (twice a day) in five weeks finishing about a week ago. I had a PET scan yesterday and saw my oncologist today. He told me I was in “complete clinical remission.” He was very cautious about his language and I got the sense things are still very serious. I want to celebrate the good news, but I feel so confused and uncertain. I am taking a hormone inhibitor but no thing else to address the cancer. I know I am not cured. I follow up with a repeat scan in four months. Does remission change your survival chances? Does it effect the amount of time you will live? I feel so lost. Earlier I was crying becasue I thought I received wonderful news. Now I am crying because everything I am reading indicates that I won’t survive for five years. Please help.

Thank you in advance,

Mary

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited April 2021

    Hi there - so sorry to hear about the diagnosis but congrats on the good response to treatment.

    Some good news - there is at least one study that has shown that someone who achieves complete remission right away as you have has a better chance at prolonged survival. Also, if the metastasis remains only in your bones, the prognosis is a bit better as well.

    https://acsjournals.onlinelibrary.wiley.com/doi/full/10.1002/cncr.29681


    yes, this is still Stage IV cancer and still very serious. Still considered treatable but not curable.

    But five year median survival rates are just that - the midpoint of all the people who are studied. It does not say much about your individual prognosis.

    Just take it a day at a time right now. If you're responding well to treatment take it as a win.

    I hope it continues for a long, long time for you.



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  • Mary6886
    Mary6886 Member Posts: 15
    edited April 2021

    Thank you for your kind words and the information.

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  • moth
    moth Member Posts: 4,800
    edited April 2021

    Mary, there is a stage IV NED (no evidence of disease) thread here

    https://community.breastcancer.org/forum/8/topics/...

    Do you know how many bone mets you had and where? That's excellent you've responded so well to treatment!

    I think we do need to talk about this. Stage 4 right now is not curable. It's gonna kill us sooner or later. That said, a few people have managed to live way longer than expected. Some people - & you might be one of them! - are exceptional responders. Hope for the best!

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  • exbrnxgrl
    exbrnxgrl Member Posts: 12,424
    edited April 2021

    Hi Mary,

    I agree with the previous comments. Most of us tend to use NED or NEAD (no evidence of active disease), to describe what many refer to as remission. There is no way to predict your future with mbc. Of course we really wish there was a cure! I have had a single, now inactive, bone met for almost ten years. I had rads to the bone met (femur) and have been on AI’s only. I have never had chemo. The truth is that no one can say why I have been such an outlier/exceptional responder. I do no special diets, supplements, protocols, etc.

    No one can predict the course of your mbc, but there have been and continue to be new treatments. I wish you all the best

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