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Anyone have Chromophobe Renal Cell Carcinoma (CHRCC)?
I just had cryoablation in my right kidney for a small cancerous (CHRCC) tumor one month ago today. On Thursday, I go for a scan to see how things are, then my doctors will do "Active Surveillence."
I feel good but am a little nervous. The worrd "cancer" is scary even though my doctors are optimistic. I was wondering if anyone knows about the percentage rate that this renal cell carcinoma subtype returns.
Thank you.
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@cindysummit, I wanted to check in and see how you are doing. Any updates?
Thank you very much for thinking of me and for checking in.
The other night I attended a live webinar with Dr. Martin Voss from Sloan Kettering in New York. He spends all of his days with kidney patients and has a serious interest in Chromophobe Renal Cell Carcinoma. He recently received a $50,000 Grant from the Kidney Cancer Cure organization (KCCure). He presented some research findings on CHrcc and it was hopeful at best.
My next medical appointments are May 6th and May 8th. I will have both blood work and a body scan done. Honestly, as I get closer to the dates, I do feel myself getting a little anxious. I'm pretty busy as a kindergarten teacher, though, and the kids are so active, fun and upbeat! That does help a lot!
I am also trying to remember the optimism that both my oncologist and urologist displayed while reminding me that it was a small tumor.
I will keep you posted. Thank you again for your kindness and support.
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1 ReactionOkay..15 months and 1 week of remission. I am enjoying the break from doctors and scans.
Just have to deal with GB stone.
Very cold in Jersey these days. Hope you are all having a good day!
CindyC
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2 ReactionsThere is a Dr Henske in Boston that studies Chromophobe as well. 🤷♀️ it’s a slow growing cancer for sure is what I was told. They removed my kidney for stage one but in the collecting system.
I worry about return which is most likely normal. I have not heard of any percentage of return.
I heard a speech that Dr Henske had given and there are double amts of glutathione in Chromophobe cells🤷♀️🤷♀️
Yes, they are the two big names with Chromophobe. Yes, I was told slow growing but not so much if it returns.
My Urologist is quite hopeful. What can you teach me about glutathione. I do not use google for medical info! (Dr, Google is a quack).
CindyC
@andaziel I just got my path report from my uro onco and it’s stage 3 chRCC. I’m 1wk post op robotic right partial neprectomy with hepatic cyst fenestration that I have for over 20yrs I have been monitoring. Got it done at Stanford. Waiting for recommendations and ff up. What you said about Dr Henske from Boston saying lots of glutathione in chRCC shock me as I’m been taking glut tabs in more or less 10 yrs, until my sister who’s a doctor told me to stop as it may cause fatty liver.
@jchicago, how are you doing? Have you received your treatment and follow-up plan?
@colleenyoung I still have some couple ff up video visit schedule as I had also had a liver fenestration done on my chronic hepatic cyst. My liver is fine. I doubt any treatment will require for my ChRCC as my surgeon had said that to me before. Close surveillance will be needed for recurrence monitoring.