sfbaybreeze

Hello Everyone- I’m updating our journey on the CC road.  My husband, Peter, got his quarterly scan on Wednesday.  We had a bit of a hiccup getting the results which caused a high level of stress but through the process we got assigned to a new oncologist.  It’s a story that I’m sure is familiar to many of you: Our first oncologist left our health system, we got assigned a temporary oncologist and didn’t have a favorable first impression, then the snafu with the scan results was the final straw and that caused us to ask for someone new.  We met with her yesterday and like her very much.

The scan report also gave us a scare for a notation about a 16mm liver lesion that was “concerning for tumor spread.”  Our new oncologist said that she looked at the current scan, and then she and a radiologist compared it with several scans from last year.  They saw that the lesion has been there since at least August (when he finished chemotherapy), and that it looked then to be about the same size and shape as it looks now.  Then I remembered that P had undergone a PET-CT scan in September for a different issue and that nothing had “lit up” in his liver.  If the lesion has been there since at least August and it didn’t “light up,” that would argue against it being a tumor.  When the oncologist heard that tidbit, she read the PET-CT scan report for herself and agreed with the logic.  She said the lesion could be a result of P’s Whipple procedure, so she is planning to contact his surgeon and ask him about it.  But she was was reassured that it was not likely cancerous.

As you can imagine, we were very relieved and happy—because the oncologist had given us calming news, and because we now have another person on our team who clearly does her homework, who quickly gained our trust, who took the time to explain her reasoning to us, and whom we like.  Another lesson learned: The radiologist who wrote the scan report was likely being cautious about the lesion—an approach we all heartily endorse—but, at the same time, different radiologists have been reading P’s scans throughout this past year.  So it’s possible for one radiologist to focus on something without knowing or reviewing the full “scan history,” as it were.

I do have a bit of concern or question about P’s CA-19-9 values.  His highest number, right before surgery last year, was in the 400’s.  The lowest was 45 last fall, but it has been doing a creep up and is at 128.  When we consulted with Katie Kelley at UCSF last Fall (we use her for expert second opinions) she said, “Try not to ride the CA-19-9 rollercoaster.”  Both she and P’s new oncologist have said it isn’t always the most helpful indicator.  Dr. Kelley’s cared for patients who had values in the tens of thousands and then P, for instance, was “only” at 400 prior to his Whipple.  So it’s hard to know what to do with these upward trending values when the scans and other blood work (ex., liver function) are basically fine.  I do think his pancreas is pretty weirded out (to use the technical term) post surgery and could have been chronically inflamed prior to diagnosis.  Our plan is to check in with Dr. Kelley to see what she thinks.

Wow!  I’ve written a much bigger update than originally planned.  It helps me think things through and I hope it will be helpful to others. Though I don’t chime in very often, I check this Message Board every day and have much appreciation and gratitude for this community. I missed out on the Salt Lake conference so I’m looking forward to watching the videos.  Peace and wellness to all, Tilly

A good scan update to share with the community! My husband just got the results from his first post-treatment CT scan and it was great news.  No evidence of local or metastatic disease.  As we like to say here: NED is in the house!

Many thanks to all for your support, advice, and encouragement, Tilly