2019 Diagnosed -- How are you doing

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  • edj3
    edj3 Member Posts: 2,076
    edited February 2020

    You know, it's just very helpful to have others who understand what this process is like. SeattleSunshine, much of what you said is how I feel. No chemo, not called for with my cancer, and because I knew I probably wouldn't go on the estrogen blockers, I definitely opted in for radiation.

    The longer-term side effects from radiation have surprised me. I didn't expect my pec to be all sorts of screwed up, I didn't know about radiation fibrosis. I have a pretty painful spot on my left rib (cancer/radiation side) that I'm 95% positive is from the radiation. My sternum just feels wrong, esp when I do push ups, best way to describe it is that it feels fragile and not quite in place. Again, I think this is all from radiation. Don't get me wrong, I wouldn't change that decision but knowing more about these kinds of side effects would have been good.

    And the reason I'm so confident these issues aren't bone mets is because (a) if I'm honest, some of that is residual denial about the whole thing, but more (b) I did have a CT scan with/without contrast dye and I'm pretty sure the scan went high enough that it would have lit up if it were mets. Either way, I see my MO's PA on Monday to follow up on the rib pain and I'll make sure that's the case. That scan was checking to see if I have tumors on my kidneys, and I do--small ones on the right kidney that are "almost certainly" benign according to the radiologist report. So that's fun too.

    I've already been very clear that there will be no mammogram on my left side. It's so painful just being on my chest that I've already told my breast surgeon a mammogram isn't happening. He's not a great listener but after making that point three times in one visit, he finally agreed to do an ultrasound on the left breast and a mammogram on the right.

    I hate, hate, hate how artificially perky my left breast is. It looks wrong and even though I had a great surgeon with regards to any scars (they truly are nearly invisible), the swelling from what's probably scar tissue from the surgery plus the radiation fibrosis means that breast is bigger than the right, plus the unnatural perkiness. However, in a sense I'm glad to know this now, that I hate how this looks. If I'd had a mastectomy, I would have opted for reconstruction and I know now that would have been a mistake. So if in the future, I do need one, I'll go flat.

    Otherwise, life goes on. March and April will be challenging. I have another 6 month check post-melanoma in March, plus the MO visit. Then in April, I have the first scans after the dx and treatment. I don't tend to fret, and always tend to minimize anything but it's not just me. My family gets nervous too, and that's hard.

  • Francesca30
    Francesca30 Member Posts: 82
    edited February 2020

    Hi Everyone!

    Diagnosed last Feb 25 2019 at 39 years old. Did surgery, 6 cycles of TAC Chemo, 33 rads, total hysterectomy and now taking Femara. Doing quite well in spite of some joint pains brought about by Femara. Planning to do my DIEP reconstruction in July of this year.

  • cathy67
    cathy67 Member Posts: 514
    edited February 2020

    Hi edj3,

    Thanks for the sharing. I am also scared of the checkup after treatment, like time bomb, I arranged my life before the next checkup, and once I go through it, I start to schedule another round of life till the next one.

    Hopefully we all come back here with good news.

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