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KeepingCalm
KeepingCalm Member Posts: 88
edited April 2020 in IDC (Invasive Ductal Carcinoma)

Not sure where to post this but have been reading on this forum for the last 8 weeks and am ready to connect with others now that this is all moving into high gear! I am 39 and I had a successful bilateral mastectomy and immediate implant reconstruction 3 weeks ago and have recovered really well from all of that. However, chemotherapy is now being recommended which is a bit of a surprise. (I now have a much better understanding of how this works but my biopsy results indicated DCIS which people encouraged me was really optimistic but everything from there that has happened has seemed to be the less likely of scenarios - actually it's invasive, actually you probably need chemotherapy.) I realize things could always be worse but I'm definitely still adjusting to all of this and trying to keep calm!

The rationale behind chemo as far as I understand this is in large part due to my age (39) and intermediate Oncotype Dx score 17 as well as the fact that while pathology indicated ER+ (>90%), and PR+, the PR was only 1% and moderate staining which my oncologist described as "not good". HER2 was negative. Tumor was 1 cm and moderate grade however accompanied by 13cm of DCIS which I haven't scene anywhere in terms of that degree! The tricky thing is I participated in a clinical trial of Ibrance for 12 days prior to mastectomy and so my oncologist suspects that that may have shrunk the tumor (although on ultrasound and MRI it wasn't listed as much larger) and also possibly made my Ki 67 (<5%) lower than it would have been to begin with. Anyone have experience with low PR+? 4 cycles of TC chemo is being recommended followed by endocrine therapy. I'd love to hear anyone's thoughts or experiences with all of this!

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  • OCDAmy
    OCDAmy Member Posts: 873
    edited April 2020

    I can share that I did four rounds of TC and it was very doable! I was so scared but after the first round, knowing what to expect it got easier. I only took off Friday for chemo and the Monday following. I was never sick to my stomach. Worst for me was constipation and heartburn. Drink lots of water, your mouth and tongue will feel bla. I iced my hands and feet and did not get neuropathy. You can do this!

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  • KeepingCalm
    KeepingCalm Member Posts: 88
    edited April 2020

    Thank you so much OCDAmy! Your experience is encouraging.

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  • SarahSmilesatMe
    SarahSmilesatMe Member Posts: 69
    edited April 2020

    I also did 4 rounds of TC and agree with OCDAmy; it was doable. A note - I’m almost 60, and of course, everyone has a different experience. I was never sick (or even nauseous), no mouth sores, no nail loss, etc. I also had constipation, but learned to manage that with Senekot S.
    For me, the effects were cumulative. After my 1st treatment, I felt great about 4-5 days later. 2nd treatment, I felt great 5-6 days later and so on. After each treatment, it took me a little longer to bounce back. By my 4th and final session, I was wiped out, my taste was gone (temporarily), and I had a bit of trouble concentrating. I didn’t start icing my hands and feet until my 2nd treatment, and truthfully, I didn’t do a great job. I have a little bit of neuropathy in my left toes; and it seems my hands fall asleep easily, so I wish I had focused a bit harder on the icing. I did cold cap and my hair is growing back / filling in just fine!
    I also had >90%ER; low PR, and negative HER2. It was a high oncotype that threw on the chemo path. Good luck to you and hang in there!

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  • Moderators
    Moderators Member Posts: 25,912
    edited April 2020

    Welcome, KeepingCalm! We're so sorry you find yourself here, but we hope you find this to be a supportive and encouraging place. You've certainly come to the right place for advice and encouragement! You may also find some helpful information in our Chemo forum, there are threads for every month and the thread for April is quite active. Would be good to connect with others who are on this journey along with you! https://community.breastcancer.org/forum/69/topics...

    The Mods

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  • KeepingCalm
    KeepingCalm Member Posts: 88
    edited April 2020

    Thank you so much ladies! And thank you SarahSmiles for noting your similar pathology. My MO said she’s worried about my low PR and as I’ve read a bit more I find myself worrying about that too which I do rationally realize is wasted energy on so many levels. I’ll start TC the first week of May. I do feel that compared to many treatment plans going through 4 cycles should certainly be manageable

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