Once you're Stage IV are you always Stage IV?

Options
VonHilda
VonHilda Member Posts: 7
edited August 2017 in Stage IV/Metastatic Breast Cancer ONLY

I had ER+/PR+/HER2- Grade 1 breast cancer with 2/15 lymph nodes positive back in 2000. Last month I discovered it had come back to my lymph nodes in my neck and in my hip bone, and I'm now on Letrozole & Ibrance. I saw on paper that I'm now Stage IV, so my question is 'does treatment take me back to an earlier stage or remove me from being a Stage at all, or are you forever fighting it? Am I now always Stage IV? I'm keen to hear from people who were Stage IV and have changed status.

· Share on FacebookShare on Twitter

Comments

  • Lauriesh
    Lauriesh Member Posts: 692
    edited August 2017

    there is no going back. In fact technically, you are not stage 4, you are now your original stage with metastasis. So, I am stage 2 with mets. Only those who are originally diagnosed with mets are stage 4. The problem is everyone, including drs just refer to everyone with mets as stage 4.

    The best hope with mets is to get to Ned ( or no evidence of disease ) or remission ( which is an older term that means pretty much means the same thing as Ned)

    I have been Ned for over 6 years and there are other women on this site who have been Ned for much longer. Yes, you will always be on some type of treatment, as I see you are er+. I stopped her2 treatments over 2 years ago and I am not on any treatment , but I am er-.

    Sorry you had to join us and good luck with your treatments.

    Laurie

    · Share on FacebookShare on Twitter
  • illimae
    illimae Member Posts: 5,710
    edited August 2017

    I'm pretty sure that you'll be considered stage IV from now on, although you could be NED or NEAD (no evidence of disease or active disease) after treatment) but cancer is a sneaky beast and could be hiding anywhere once it has spread.

    While everyone is different, I have a met to my hip bone too and have always felt totally normal (except for chemo SE's), you'd never suspect I had cancer (my only health issue by the way, lol) and I plan to continue living well and feeling good for years to come :)

    · Share on FacebookShare on Twitter
  • Freya244117
    Freya244117 Member Posts: 603
    edited August 2017

    Lauriesh wrote: In fact technically, you are not stage 4, you are now your original stage with metastasis

    After all these years I never knew that. I guess it's easier to say stage IV than try and explain to people what it means.

    · Share on FacebookShare on Twitter
  • VonHilda
    VonHilda Member Posts: 7
    edited August 2017

    Thank you for your replies. Disappointing news in one respect but great to have clarity, and it explains why my onc. said she would have to find me some more tablets by the time she retires in 10 years time. BTW, I have actually deliberately not called it Stage IV to my children (now 21 and 23) or mother as I don't want to de-rail them and what's in a label any way? hanks again for your comments!

    · Share on FacebookShare on Twitter
  • exbrnxgrl
    exbrnxgrl Member Posts: 12,424
    edited August 2017

    Von Hilda,

    Yes, the nomenclature is a bit fuzzy. I was staged IIB right after my bmx, but six weeke later, my bone met was found. Whether I call it IIB with metastasis or just stage IV, really makes no difference as one cannot go back to not having mets, even if one as been NED for years (6 years in my case).

    May I ask why you are hesitant to tell your adult children? My children were about the same age when I was dx'ed. They would have been more upset if I had kept it from them. They have educated themselves about MBC and have been a great source of support. It has also helped them, and myself, realize that we must bring mbc out of the dark and not speak of it in embarrassed whispers if we want people to understand this disease and to encourage research for a cure. We may not be the pretty pink arm of bc, but we need to come out in to the light. I understand that your choice is a personal one, and I am not judging, just curious.

    Take care

    · Share on FacebookShare on Twitter
  • VonHilda
    VonHilda Member Posts: 7
    edited August 2017

    Hi, you are right to ask, and I have promisedto tell them everything. My main reason for not saying it so far is because I want to give them correct information rather than muddled or incorrect info. I was only diagnosed 3 weeks ago with mets and it took me a week before I realised it meant st. VI. With the answers you have all clarified I will now let them know.

    · Share on FacebookShare on Twitter
  • exbrnxgrl
    exbrnxgrl Member Posts: 12,424
    edited August 2017

    😊 You're a smart woman. I found that my daughters feel like they are "helping" me by being understanding exactly what's going on and being able to respond. They know they can't change the course of the disease, but are part of helping me live with it. My younger dd, accompanies me to all PET scans and has food and drink waiting for me when I'm done. So sweet and thoughtful and it makes her feel less helpless.

    Take care

    · Share on FacebookShare on Twitter

Categories