Newbie here & reaching out

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AnnBR
AnnBR Member Posts: 853
edited May 2017 in Stage IV/Metastatic Breast Cancer ONLY

Hello everyone! Two weeks ago I was told that active cancer cells were found in my spine and I heard the words that no one wants to hear, 'It can't be cured.' Wow. I went from Stage 1 to Stage 4 in 4-1/2 years and I had a low oncotype score when I was first diagnosed. Geez! What happened?! But knowing it can be treated like a chronic disease and that there's many treatment options havegiven me hope. I really am at peace with the diagnosis. I have never been treated with chemo as my Mayo team says the long term side effects outweigh the benefits and being ER+ and PR+ and HER2- is more successfully treated by radiation and hormone therapy. I'm not questioning my amazing team but I'm curious if others have had a similar diagnosis and treatments? Thank you! Ann

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  • Tina2
    Tina2 Member Posts: 2,943
    edited May 2017

    Hello, Ann. Welcome to the Cool Kids table!

    All of us here have a Stage IV diagnosis. Many of us are ER+ PR+ and HR- and doing very well.

    Are you on Faslodex and Ibrance? Check out the pertinent threads. Ask questions and hang around. You'll get support and good info.

    Tina



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  • Heidihill
    Heidihill Member Posts: 5,476
    edited May 2017

    Really sorry you have to join us even if we are a cool bunch. I think its great that you are at peace with the diagnosis. That is a good place to start healing. Not having had chemo probably means you will be more responsive to it should you have to take it. Still it would be good to get a second opinion. I always ask my team questions as if they were defending a doctoral dissertation. My life is at stake. With a second or third opinion you have more ammunition for questions.

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  • stagefree
    stagefree Member Posts: 2,780
    edited May 2017

    Hi Ann,

    Sadly welcoming you, yet be assured this is a looong treatment, if not cured. There are bumps along the way, yet mostly can be doable :) please be sure you are not alone!

    Hugs

    Ebru


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  • dtad
    dtad Member Posts: 2,323
    edited May 2017

    AnneBR...so sorry you are facing a recurrence. What a great attitude you have! Just goes to show you what a crapshoot recurrence is. Good luck going forward treating this chronic disease.

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  • Lynnwood1960
    Lynnwood1960 Member Posts: 1,284
    edited May 2017

    Welcome Ann! Great group here, lots of support, tips and information!

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  • Emily2008
    Emily2008 Member Posts: 605
    edited May 2017

    Ann, I am not stage 4, but I had a recurrence 8 years after my initial stage 1 diagnosis. The first time I did complete chemo, had a double mastectomy, was on Tamoxifen for 6 1/2 years, and had an Oncotype score of 14. So I really shouldn't have recurred, based on my stats and the aggressive treatment I underwent.

    I don't know what will happen in the future, but I certainly have realized now that there doesn't seem to be a whole lot of rhyme or reason to who recurs, who metastasizes, who stays NED for the rest of their life, etc.

    Hugs and prayers as you move forward.

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  • melmcbee
    melmcbee Member Posts: 1,119
    edited May 2017

    Hey Ann. I turned stage 4 with bone mets at around 4 1/2 years to. I think we were on tge same threads back in the beginning. Im sorry you are here. However welcome. I did bilat nastectomy raduation and chemo but I had 8 positive nodes. Im on faslodex ibrance and xgeva. Prayers and gentle hugs to you

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  • Alcarroll
    Alcarroll Member Posts: 16
    edited May 2017

    Hello Ann,

    I was diagnosed one year ago, Stage 4 from the start. Was started on Femara (Letrozole) right away and have been on it this whole year. No progression, primary tumor has shrunk and the "extensive" bones mets are still there but, I'm told by oncologist, too small now to be picked up on PET scans. I've had no chemo, no radiation.

    I'm feeling pretty positive about treating it like "a chronic disease."

    Best of luck to you!

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  • AnnBR
    AnnBR Member Posts: 853
    edited May 2017

    Thanks ladies! You ARE a cool bunch. I'm on Ibrance, and monthly injections of Xgeva & Faslodex. So far so good. I decided I need to plan out my celebration of life service so I am writing down my wishes and getting photos in order, because my husband will be clueless and I don't want my son and daughter to tackle this. Once my affairs are in order, I plan on living a nice long life!

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