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I'm back..

Stormynyte
Stormynyte Member Posts: 179

7 Years of clean scans, finally stopped being my first and last thought of every day and here I freaking am. Mets on multiple vertebrae and probably in my right lung as well but not sure about that one yet, waiting on test results.

At least my kids are grown this time.. but now I have grandbabies.

I'm freaking out.

Comments

  • kbl
    kbl Member Posts: 2,639

    stormynyte, I’m sorry you’re back. I have a grandson who will be three. I think about how close we are and that I will probably not be here to see him graduate, but I try really hard to live in the moment and enjoy him now. Hugs to you and your family. I so feel for those with young children.

  • mara51506
    mara51506 Member Posts: 6,028

    Just happened upon this topic. Stormynyte I am happy you got 7 years without constant tests, treatments etc but it is hard when you find out you are stage IV. One thing I wish to let you know is there are so many different treatments out there that can help keep you stable. I know you will need to know the plans. Everyone here will support you and be in your pocket. The pocket is just a term we use when we are supporting people who are having tests and anxiety. Meds are so much better and a lot of us have been going a long time after Stage IV. One day at a time.

  • Stormynyte
    Stormynyte Member Posts: 179

    Thank you. My initial diagnosis was actually stage 4 back in 2011. I did all the crap, all the testing, took all the meds and they told me once you hit 10 years they consider it cured. Here I was thinking I made it, I mean 9 years close enough right. I finally stopped thinking every little twinge was a reoccurrence and I'll be damned if the pain in my back isn't just that.

    I'm so disappointed, scared and so angry.

  • Stormynyte
    Stormynyte Member Posts: 179

    My youngest is now 21. I am so happy that I got in the time to watch them grow up and become functioning adults. I was absolutely terrified 10 years ago that that wasn't going to happen.

    My grandbabies are nine and two and are my favorite people on the planet. It just really sucks to be starting this crap all over again. It's been long enough that I thought maybe I was one of the lucky ones and might be in the clear for good.

  • mara51506
    mara51506 Member Posts: 6,028

    Yeah, I can imagine after being considered clear for so long is a kick in the gut. Hopefully whatever comes up for you is gentle treatment wise.

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,648

    srormynyte,

    Sorry that you find yourself with active disease again. I will say that I find it disingenuous that anyone would consider someone with mbc cured. How do you declare someone cured of a disease that has no cure? Longevity or lack of progression does not equal cure. I am at the 11 year mark and though I've had no progression both my mo and I know that that could change in a heartbeat. I know some folks are comforted by positive platitudes but I'm not one of them.

    Try not to freak out too much and take it a day at a time. While there is no cure, many of us are living longer than we were a decade ago and new treatments continue to come to market. That's the kind of good news I like to hear! Take care

  • sunnidays
    sunnidays Member Posts: 152

    I am a bit confused I thought stage IV was never cured? do you mean you were stable for 9 years with stage IV? where were you metastases when you were diagnosed do you mind me asking.

  • Stormynyte
    Stormynyte Member Posts: 179

    Hi! "Cured" I think it's something that they say just to make us feel better but we all know there's no cure.

    My initial diagnosis in 2011 was stage 4. I had Mets in my sternum and ribs as well as the original mass in my breast. I took tamoxifen for 5 years, had a mastectomy, did chemotherapy and radiation and after the radiation I was Ned. I did full body CT scans every 6 months for 2 years and then once a year for 3 years and every scan and test came back squeaky clean.

    My oncologist retired and the cancer center here could not get a permanent oncologist to stick around and I kind of just quit going because there wasn't a doctor to follow up with. I was supposed to get a call when they had a regular oncologist again but that didn't happen. My own fault for not following up myself.

    And then my dumbass assumed the shortness of breath was from covid because it just never went away after having it in January followed by 2 months of bronchitis. Then I thought I injured my back lifting a box wrong and just kind of ignored that.

    I'm so mad at myself because I know better, I should have gotten it checked out sooner but I went to the doctor because I was just constantly short of breath. Like putting on my shoes and socks made me huff and puff like I had just been jogging.

    Did a chest x-ray.

    Right lung is full of fluid and there are spots on my

    T2, T5, T8, T10, and L2 vertebrate.

    This is just all happened this past week so I don't really have all the details yet but they're assuming it is a reoccurrence of the breast cancer.

    Sorry this is probably way more than what you're asking. I'm rambling. I don't really have anyone to talk to about this stuff which is why I came back to these forums because they were such a huge support for me with my original diagnosis. It helps just to get it out there I guess.


  • exbrnxgrl
    exbrnxgrl Member Posts: 4,648

    “Cured" I think it's something that they say just to make us feel better but we all know there's no cure.“

    Exactly, positive platitudes with little basis in reality! I do appreciate optimism and positivity but it has to be grounded in reality. Heck, there was a bco member who decided I was “probably” cured. I appreciate the optimism he was trying to convey but that is not reality.

    Don’t kick yourself over what you did or didn’t do. Wait until you have all the details and the proposed tx plan. Take care

  • mara51506
    mara51506 Member Posts: 6,028

    They need to stop saying we are cured and just give us stable or NED, no evidence of disease. So far, from the neck down, I have been NED since finishing radiation in 2015. My brain has not shown any perceptible progression since I had spot treatment back in 2018. I don't even mind if it was called remission. These are personal opinions, others may feel differently.

  • elderberry
    elderberry Member Posts: 1,037

    I think NEAD should be used even for early stage BC. Maybe then a recurrence, or worse MBC, wouldn't be as much of a shock as being told you are "cured" some time before. Not that the news wouldn't be bad anyway. Being de novo I don't know if that would be true.

    stormnyte: Go easy on yourself. I am glad you back here even if it is for no longer being NEAD and have to look at TX's etc in the face again. I am pretty sure we have all wondered how or why we "somehow" missed something. Will you be getting a CT or PET scan soon? Keep us posted.

  • divinemrsm
    divinemrsm Member Posts: 5,896

    stormynyte, about three years ago, I was where you are now. I'd been diagnosed stage iv from the start but had good response to treatment and remained stable for eight years. Then progression. So I tried a couple of other mbc treatments for about a year that did not work whatsoever (more progression) and side effects were awful. Yet now I've been on a treatment that's been keeping me stable for a couple years. What I'm getting at is that it's still very possible for you to get back to stable. I can understand if you are nervous, depressed, or any other emotions you're feeling, but do not count yourself out! I think once you begin a different treatment and have some time to adjust to the latest changes, things will get better.

    As for an oncologist claiming after ten years of stability with mbc you are considered cured, it makes me both sad and irritated that a doctor of medicine would say that. Hey look, when I was stable for those eight years, I fantasized I might have beat mbc, but I took my medicine every day!

    I wish you the best, stormynyte! Hang in there!