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How long have you been Stage IV?

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  • dormouse
    dormouse Member Posts: 1
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    Stage 4 at diagnosis, Nov 2006. Right B C with liver mets.

    Now last month, brain mets discovered. WBR beginning soon.

  • luvmyfam
    luvmyfam Member Posts: 53
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    3/2012 - DX Stage IIIC

    2/2016 - DX Stage IV, single liver tumor

    05/2016 - NED!! (Tumor resection)

  • GlobalGal
    GlobalGal Member Posts: 29
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    Diagnosed March 2019 as de novo stage 4 following complete thyroidectomy for papillary thyroid cancer; neck's 3 central lymph nodes revealed breast cancer with no primary lesion detected or other mets.

  • lovelife49
    lovelife49 Member Posts: 26
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    It's been four years today for me. I had only a single small bone met and had radiation at that time for pain and then started Zoladex and Femara, which I’m still taking. I have a (now yearly unless symptoms) scan in four weeks, and hopefully this status will continue. I'm nervous, though. I will say, I never thought it would turn out like this. I figured I was a goner and got very depressed about it for way too long. If you’re new to this, don’t go to that same dark place I did and stay there for too long because you just never know how well you might do for a good while. I wish I could go back and tell my 9/9/15 self that.

  • olma61
    olma61 Member Posts: 1,025
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    Stage IV de novo - it is now 2 years since I found the lump, and I started treatment in 10/2017. I am doing well and hope the next 2 years will go as well as the past 2 have.

  • sandibeach57
    sandibeach57 Member Posts: 1,387
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    July 2006 DCIS, left, close margins, 4.5 cm spread, bil mx, immediate reconstruction, HR+

    July 2007 DCIS, left, close margins, 2.5 cm spread near implant, removed implants, chest wall radiation, 5 yr tamoxifen, HR+

    2009 new much smaller implants

    Oct 2016, IDC, Stage IV (restaged) widespread liver lesions, too numerous to count both lobes, tumor cells blocking lung arterioles, ER+, PR-, HER-

    Sept 2019 still here

  • SchnauzerMom
    SchnauzerMom Member Posts: 75
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    Diagnosed with mets to liver and bones July, 2012. First diagnosed stage I November, 1987. Recurred StageIII December,1989 (Nearly 23 years until metastasis--was I ever surprised and shocked.Now it's 7+ years with liver and bone mets--never NED--and I have a pretty good quality life! Who can ever know? We just live our lives with uncertainty and enjoy as best we can all the good things that remain.

  • JACK5IE
    JACK5IE Member Posts: 654
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    Stage 2 B/C June 2009

    Stage IV December 31, 2017 (19 months to date)

  • AllyBee
    AllyBee Member Posts: 99
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    Stage II triple negative breast cancer November 2018

    Stage IV Mets to brain June 2018

    So 15 months stage IV, hopefully many more

  • lulubee
    lulubee Member Posts: 903
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    Still here, 9 years at Stage IV. So grateful.

    Stage I dx in 2007, but was told I'd probably had BC for years (ILC is tricky like that).

    Stage IV confirmed 2010. (In retrospect I was possibly Stage IV de novo.)


  • Rainbow-dash-29
    Rainbow-dash-29 Member Posts: 5
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    Stage 0 1 2 3 in 2005 then eight years cancer free.stage iv 2013 so 6 years bone lung liver my bones and lung is stable but two progressions on liver this year currently on abraxane I plan to be around for years and years

  • goldie0827
    goldie0827 Member Posts: 6,835
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    8 years, stage IV. Bone mets only.

  • elderberry
    elderberry Member Posts: 1,065
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    goldie: 8 years! Brava!

    3 years as of March 2022. Hope to be around for more!

  • gailmary
    gailmary Member Posts: 436
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    6 yrs and feeling blessed.

    I'm glad you bumped this thread though I wish there was a better even an accurate way to know these numbers. Hard to believe with the technology available that these numbers aren't tracked

    Gailmary

  • olma61
    olma61 Member Posts: 1,025
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    Congratulations, Goldie!

    I am 4 years 10 months since diagnosis and 3 consecutive years NED this month.

  • moth
    moth Member Posts: 3,293
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    I'm gonna be honest & say I feel like as a mTNBC I almost want to leave this site & other groups. Er+ & her2+ pts can have such long survival, esp when they're bones only *

    mTNBC still has short survival. I'm at 27 months since diagnosis. It makes me cry every day now. There are only a few meds left that we're hoping will buy some months.



    *for example study (based on group up to 2015 so before newer drugs) https://bmccancer.biomedcentral.com/articles/10.11...

    The 2022 article PALOMA 3 for er+ this is current results for ibrance - a big improvement benefit https://pubmed.ncbi.nlm.nih.gov/35552673/ median survival about 3 yrs. Almost 20% survive 6 yrs.

    Her2+ is doing even better. Tnbc is not ...


  • illimae
    illimae Member Posts: 5,617
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    Moth, I hate that you feel this way but I do understand. I initially felt so hopeful with my HER2+ single bone met but the brain mets slammed me back to reality. Still, I do have options to look forward to and I’m frustrated and saddened that TNBC is so limited still.

  • elderberry
    elderberry Member Posts: 1,065
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    moth: TNBC is relentless in its cruelty. I am HER2+ - with liver mets but here I am and doing okay. So far. There are a few liver mets HER2+ that have hit 20 years (Denny123) I can hope. I am so sorry and sad for you. I understand your despair and feeling like you are an outsider. I wish I could offer more than a cyber hug.

  • moth
    moth Member Posts: 3,293
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    Thank you guys. I had a long telehealth appointment with a psychiatrist this morning & i'm going to start some psych meds because I'm just spiralling lalalalalal now. The BC Cancer Agency still says "patients with metastatic ER-/her2- (triple negative cancers) typically survive a year or less." So if anything, being at 27 months now I'm supposed to be celebrating, I guess? I'm really not.... I'm so sad & once in a while I get super mad

  • sadiesservant
    sadiesservant Member Posts: 1,875
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    Moth, my heart is aching for you and I too understand why it’s so difficult when your options are increasingly limited. I’m at just over five years but facing some similar challenges now. I want more time, particularly now that I have finally quit working but my options are also becoming quite limited as well. My MO feels I am now endocrine resistant and traditional chemo does not seem to be working (two back to back fails) with my slower growing disease. So my liver involvement keeps increasing… trials seem non-existent, particularly for someone so heavily treated. I wish we lived closer so that I could do more than send a virtual hug. Just know I am thinking of you and praying some treatments turn things around for you. 🙏

  • sunshine99
    sunshine99 Member Posts: 2,644
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    I'm two years and a few months in. I look for survivors and feel guilty when I see someone with TN disease. Every scan should feel like a reprieve, but sometimes it's more like a stay of execution.

    Carol

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,952
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    10 1/2 years but no idea why.

  • emac877
    emac877 Member Posts: 688
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    exbrnxgrl - 10 1/2 years is amazing!

    I am at 2 1/2 years since MBC diagnosis. In some ways I still feel new to all of this. I'm fortunate to to still be on my first line of tx but I think there is always that waiting for the other shoe to drop in some ways. I'm encouraged by those of you with 8 and 10 years behind you. I kind of search you out because it gives me hope. I'm bone only and I know that prognosis is as good as it can possibly be. I don't want to waste that.

    At the same time Moth my heart breaks for you and I am angry and sad and frustrated that there has been no significant breakthrough for mTNBC. I continue to hold out hope that a miracle is coming.

  • LI77
    LI77 Member Posts: 68
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    Four months since De Novo MBC diagnosis, so I'm new to this. But in those four months there were two ER visits, a hospital stay, a vertebral fracture, a shit ton of narcotics, a pain doctor, two epidural steroid injections, and a super annoying fight with my insurance company. I guess I went in with a bang.

    You all give me hope. It sucks that we're all here.

    Lauren

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,952
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    Lauren,

    I lived in the Woodlands over thirty years ago! I think my house was on a street called Meadow Rue. I am still unsure if my longevity provides anything useful to others since there is no known reason for that longevity save good luck.

  • LI77
    LI77 Member Posts: 68
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    Exbrnxgrl, your old street is about three miles from my house! Small world. The Woodlands has grown a lot in the past 30 years; population is over 100,000.

  • divinemrsm
    divinemrsm Member Posts: 6,154
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    Moth, I have read your recent news that the Trodelvy is not working and your latest scans show progression. I am so sorry that this is where you're at. It's very tough news for you to receive. It pretty much sucks. My heart goes out to you. If there was anything in my power to fix things and make things right for you, I would; all of us would. You remain in my thoughts.

    I'm posting a photo of my cat Lucy. I know you are a dog lover, but Lucy wanted me to let you know she's thinking of you, too. Sending many hugs.


    image

  • gailmary
    gailmary Member Posts: 436
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    dear moth, I'm so sorry to hear of your situation. I thought I'd heard there has been progress for tnbc. I surely would have thought you'd have more time till I lost my friend suddenly. Damn cancer.

    Gailmary

  • tina2
    tina2 Member Posts: 758
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    Goldie0827,

    This summer will mark my eleventh year living with mets to the lungs. I am often cranky about having cancer, but grateful for my good fortune with treatment.

    Tina

  • jacque1102
    jacque1102 Member Posts: 14
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    Have been living with MBC for the past 10 1/2 years. Starting Enhertu having been NEAD since 2012. Lung mets popped up so on to Enhertu. herceptin and then hylecta was a good run. Hoping to get 10 more years. Will be 60 in November. don't know why I am here other than luck.