Heartbroken. Devastated.

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  • berries
    berries Member Posts: 277
    edited October 2019

    jRNJ, did your MO order any scans? I’m sorry you’re in this same dark place. I feel so bad. I hope you find answers soon! What is your next step? I have my scans and am meeting with a RO next week (he May recommends ALND) before chemo starts on10/24

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  • Claire_in_Seattle
    Claire_in_Seattle Member Posts: 4,570
    edited October 2019

    Dear VMB,

    I have a bit more reading for you to do which is about the importance of exercise through treatment and beyond. (I'm only 35, active runner for years.) It's probably a bit too soon after surgery to run, but you should be well enough to walk. For me, it was cycling and I was able to cycle throughout treatment. It made a huge difference in my whole journey through treatment, and my recovery. I did the minimum of one mile of walking every single day, more on most days. This was ten years ago when a lot less had been written on the importance of exercise.

    They are currently doing studies on prescribing a dose of exercise along with chemo to improve it's efficacy.

    Cycling still puts the world right for me. I do endurance events every year so I can eat. This year, since my consulting business is flourishing, I haven't kept up with the "calories burned" part of the equation. It's on my list.

    Are you up to a walk of 3+ miles? Someplace nice so you can enjoy the changing seasons?

    Ten years later, breast cancer is one of the things that happened to me. I have a wonderful life, including an intense distance flirtation with a good looking hunk whom I met in conjunction with one of my projects, and met in person during my recent NYC business trip. We shall see. He knows that I have had breast cancer, but not so sure about the 12 years older part, though he has to have noticed that I am at least "a bit older".

    One change is that I now do some running to keep my bones strong. I am terrible (though no worse than when I was in my teens!), but I don't care. My route takes me past a bog and wooded trails. I am out there all four seasons, unless too icy. Sometimes on my skis. It clears the cobwebs and focuses the mind.

    Feel better and good luck! The good news is that you are willing to do what it takes. That speaks for a lot. - Claire

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  • JRNJ
    JRNJ Member Posts: 573
    edited October 2019

    Thanks Rambros for the information. I guess in my panic I thought the ANLD should come first, but I don't see that happening because I would probably need a second opinion to convince my surgeon who is against it.

    vmb, I've had persistent arm pain for months and a little something in my side. I asked for scans and they dismissed me saying insurance wouldn't pay for it. After finally freaking out they ordered CT scans and bone scans. I had the bone scan Thursday, clean. Insurance denied the CT scans before surgery, they appealed with new info, and now they are approved. But they said I should wait 2 weeks for swelling to go down. Now with my new results I am wondering should it be CT or Pet? They already said insurance won't pay for Pet. So frustrating!!!!!

    My results are verbal. Meeting with surgeon Monday and will see actual pathology report. I have to wait for Oncotype score before chemo determination because I had less than 3 nodes. So more waiting. I'm freaking out because lobular cancer is so weird and spreads in a sneaky way, often undetected, as demonstrated by each test I get worse than the last. They have continually underestimated the extent of my cancer. And I am freaking out it is already in my arm and liver, because so far all my instincts have been correct. I knew something was wrong with my arm, and I think this extranodal spread explains it more. And I'm worried if its small in my organs the CT scan won't find it. What scans did you get?

    Just saw your other post on scans. Looks like CT and Bone possibly.

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  • star2017
    star2017 Member Posts: 827
    edited October 2019

    I was 37 and pregnant with a similar diagnosis. Now I’m two years out. I think it’s worth talking to someone about your fertility options. I have no idea how chemo/rad affect these things. I wonder if they’ll recommend freezing some eggs to try once you are past treatment and feeling strong and ready to conceive

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  • berries
    berries Member Posts: 277
    edited October 2019

    wow can’t imagine going the this while pregnant. Glad to hear you are doing okay. We did a round of IVF and have 8 embryos waiting... starting chemo on Thursday.

    hoping to take a break from hormone therapy, God willing, to get pregnant after a few years.

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  • star2017
    star2017 Member Posts: 827
    edited October 2019

    that’s good news,vmb. One step at a time and before you know it, this phase will be in your past. Best wishes with chemo. Don’t hesitate to reach out

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  • SSInUK
    SSInUK Member Posts: 245
    edited October 2019

    I was in my 40’s single mum of a 4 year old and the news kept getting worse. Final DX was 7 nodes positive, 5cm tumour (after chemo), 2 nodes under breastbone. Stage 3c. I have cried and Feared and feared and cried for me and my little girl. I still think it may (will) come back, but it’s been 5 years since first DX and I’m alive and we have lived a lot, laughed and lived and appreciated the time so much. You will be here too. You will. Look up YATCOMW in the 15 year thread then track down her story. Glorious inspirational woman who’s story tells us all there’s much hope

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  • SSInUK
    SSInUK Member Posts: 245
    edited October 2019

    PS I just read a paper that said extra nodal extension had no prognostic value

    You can find anything on the internet!

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  • Euphoriaa
    Euphoriaa Member Posts: 235
    edited November 2019

    I'm a newbie in bc world, but I think that grade 1 responds very well to antihormonals ... its slow growing gives time for hormonal blockers to take care of the little monsters. Any thoughts about it?

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  • SSInUK
    SSInUK Member Posts: 245
    edited November 2019

    Yes. grade 1 makes statistics much better

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