Stage IV bone meets- challenge with biopsy
Hi folks, its my 1st post here. Felt a bit positive after reading some of the long time mets survivors.
I was diagnosed with triple positive (high 90%) in 2020, stage 2. Did the full paclitaxel+herceptin and RT cycle. Have been on tamoxifen for last 5 years. In Jan this year started feeling bone pain and MRI showed fracture and doctor's asked for PET SCAN and it showed an active uptick on S1. Repeated MRI with contrast and showed multiple lesions but PET seemed to indicate only one active area. Did a biopsy..which was not too succesful, resulted in only 5% of the sample having tumor cells and within that ER was at 40% (stain intensity of only +2). Both PR and Her2 negative. So from a very strong triple positive have gone to low ER+. Oncologist was going to start me on letrozole/Kisqali...but another PET SCAN done a week before showed multiple uptick at newer location within spine and now rib. Now oncologist wants to put me on capecitabine. His reasoning is that in the last 3 months it spread to newer bone location and given that I am low ER this time, he wants this route. There is also the ongoing debate on whether the low ER could have been an artifact of the low volume tumor available from the biopsy. Wish me luck. Thanks for listening.
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@vijiya71 Good luck! If this were me, I'd see out a second opinion just to be sure this is the right course.
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@tougholdcrow thanks so much. I did get a second opinion. Both my existing oncologist and the one I got my second opinion from initially wanted to take the letrozole/kisqali route...but with the 2nd PET SCAN within 3 months showing more lesions makes both of them say that there is no obvious theraphy given my low ER positive suggesting heterogeneous cell type and probably oral chemotherapy is better to start with.
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@vijiya71 Oh, got you! Have you had any tests for mutations besides the initial biopsy study? (ie. Tempus, Guardant, or Signatera)? Hopefully others can chime in on the capecitabine. There is a thread here devoted to those who are on Xeloda so you might want to try posting there.
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@tougholdcrow no…other tests done…the pathologist mentioned the biopsy sample from the bone yielded very low quality of valid tumor cells that they were not able to do further tests. The low quality comment was what made me wonder if the low estrogen was an artificat of the low quality samples in the 1st place. Thanks for the pointer to Xeloda. I will take a look there
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@vijiya71 There are blood tests (liquid biopsy, ctDNA) that can also be used. Ask your oncologist about this.
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@tougholdcrow thanks. I will skip for that too
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Yes, I was going to comment on how the bone samples are not always accurate as to the biomarkers (ER/PR/HER2). Agreeing with tougholdcrow, a blood test for mutations seems like it could be helpful. If you can benefit from any kind of targeted therapy, it would be better to know that.
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