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Aquaintance celebrates 25 years since advanced cancer diagnosis!

dancemom
dancemom Member Posts: 404

Hi everyone. I just have to shout it out because it gives me such hope. She is such a gracious, generous and caring person.

Comments

  • moth
    moth Member Posts: 3,293

    what type? where were the mets?

    I'm the oddball on this always. I don't find people's stories hopeful. Even if we had the same exact cancer, our genetic codes are different which will lead to different responses to treatments & the prognosis & outcomes. I dunno. I don't want to be a debbie downer but it's like saying someone won the lottery. Doesn't change my chance of winning a lottery - which is extremely close to zero anyway - at all....

  • dancemom
    dancemom Member Posts: 404

    all true, but at least there is a lottery.

  • olma61
    olma61 Member Posts: 1,016

    thank you for sharing this! I appreciate it.

  • amontro
    amontro Member Posts: 184

    dancemom -

    Thanks for posting. It gives us something to shoot for.

    I've know long-time mbc survivors who are many years out, however, they have had some of the offending areas of cancers removed surgically (I guess like a biopsy).

    Let us know how your person is doing.

    Thanks and take care,

    Anna

  • aprilgirl1
    aprilgirl1 Member Posts: 743

    Dancemom , this gives me hope! We all would like to be outliers for sure .

  • edge_of_no_return
    edge_of_no_return Member Posts: 41

    i say yahoo, yipee and hurrah!!! break out some good bubbles for sure. mandatory!

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,640

    That is wonderful to hear! Moth, I understand what you’re saying. The “hope” seems more like random luck, just like a lottery win. I am quite embarrassed when people say I am an inspiration or I give them hope. The reason? I have done nothing out of the ordinary to have lived so long. I have no real advice to offer so it really does seem like luck. While that is great for me, it feels like a fluke.

  • amontro
    amontro Member Posts: 184

    Caryn -

    Don't put yourself down. You have been through a lot and even if you give a glimmer of hope to one person regarding longevity and stage 4, you have made a difference.

    - Anna

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,640

    Thank you, Anna. You are very kind. I think it's no secret that I feel like a complete oddball in the world of mbc. I have long felt out of step with almost everyone here as I have done nothing special and have had far less tx than most with mbc. I have never had IV chemo despite having a port and I have only been on AI's. Diets, regimens, protocols, supplements? Nope, haven't done any. About the only thing I have done is not worry, panic or spend time worrying about a future I can't control. It actually makes me feel like a bit of a fraud and the pain of the cruel pm's I received several years ago (yes, pm's telling me they would laugh when I had progression) still sting and remind me that there are still folks on bco who feel that way. The reality is that I have nothing substantial to offer, my tx is minimal and very old school. I never panic nor cry for days. I simply have been lucky. I wish I had more to offer but I've been a bit of an oddball all my life. At least my odd mbc is consistent with that!

    Caryn not a Karen

  • dancemom
    dancemom Member Posts: 404

    I really didn't expect such a robust response. When she told me, I felt the same way I do when ever I read someone announces NED; excited for her, and a little hopeful for me. A little over a year ago, I got this crazy diagnosis and thought I would be dead by now. I didn't understand the disease. Breast cancer when I was in elementary school meant "your mom is about to die". 2 years before my diagnosis, my child's close friend's mom died of it. So seeing all the "outliers " is definitely uplifting, but so is reading about everybody who is in treatment, and maybe struggling, but moving on and having a life with family and friends and work. Cancer is a huge, unwelcome part of life, but it is PART of our lives along with lots of regular stuff, good and bad. I appreciate all I am learning from you all.


  • elderberry
    elderberry Member Posts: 1,037

    exbrnxgrl: I see that a decent run is possible. Why not me? There are more of you outliers than just you. I am sure they have no explanation either. And then there are those with MBC who stopped treatment after 10 years and are continuing on. Are they "CURED"?

    Living in Hope is a happy place to be. Living in Denial works for awhile but the suitcases are already packed by the front door waiting for you to check out.

    I am still shocked that you were considered not MBC enough or people saying they would laugh when you had progression. Why are people angry that you are okay? Why would they wish to have misery inflicted on you just because they aren't doing as well? All of us are angry about MBC but why beat up on you?



  • exbrnxgrl
    exbrnxgrl Member Posts: 4,640

    elderberry,

    I get what you're saying but I guess “why not me?" seems like a pipe dream. I wish I had something concrete to account for my survival that could truly help others.

    Yes, those ugly things did happen, sorry to say. One of the members involved stopped posting and another passed away. One charmer even made a public post telling me to take my single bone met and shove it up my a** (she used the actual word). It took the mods about 10 hours to delete that post. I believe the member who made that post is active occasionally. However, I want to emphasize that all of this happened within a short period of time several years ago and never occurred again. My theory is that as more and more members started surviving longer, which wasn't the case when I first joined, some members were forced to acknowledge that that stage IV is not the same disease for everyone.

    When I started the Life does not end with a stage IV diagnosis threadin 2014, a few people were very upset with me. I understand to some extent but just because folks like myself are in the minority doesn’t mean we don’t deserve a voice.

  • dancemom
    dancemom Member Posts: 404

    She died 2 weeks ago from infection from a newer health issue. Life very well lived. She influenced so many in positive ways. May her memory be a blessing.

  • divinemrsm
    divinemrsm Member Posts: 5,893

    dancemom, I’m sorry for your friend’s passing, but as you say, hers was a life well lived. How old was she? I hope you don’t mind my asking, but I was wondering when you say she passed from a newer health matter, does that mean she did not die from breast cancer?

    I didn’t remember this thread, so I just now went back and read all the posts. I am one who’s always found hope in the longevity of others with mbc. Most especially when I was first diagnosed, it gave me such a literal lifeline of possibility which was important to me. But even now 11+ years into it, the news of long time survivors never gets old. Never. It’s also not just the longevity I admire, either. Living with mbc has many ups and downs, and those with mbc still slog it out not only with the disease but with regular every day life issues: relationships, finances, broken dreams, rearranging our lives over and over. finding new purpose and so on. It’s not for the faint of heart!


  • dancemom
    dancemom Member Posts: 404

    She was near 80. She had a heart issue and then there were complications from surgery.

  • divinemrsm
    divinemrsm Member Posts: 5,893

    Wow, 80 years old, living the last 25 years with advanced cancer. May your friend rest in peace.