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Diagnosed with High-Grade Urothelial Cell Carcinoma - ANYONE?

Posted by so1frustrated @so1frustrated, May 17, 2021

Looking for someone who is/has gone through HGUCC of the renal pelvis willing to share your experience, treatments, etc. Basically similar to high-grade bladder cancer from what I can discern.

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skybolt | @skybolt | Feb 19 2:31pm
In reply to @kfontaine1002 "@michzn Hello I was diagnosed with high grade bladder cancer almost a year ago. I had..." + (show)
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@michzn
Hello I was diagnosed with high grade bladder cancer almost a year ago. I had chemotherapy before I had a radical cystectomy. I had a rocky course and then ended up, unable to take immunotherapy due to side effects. I was in the hospital because of complications for one month after surgery those were not predictable. I am just now getting my feedback under me. I’m not able to take immunotherapy again so my treatment options for recurrence would be limited. Hope this helps.

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@kfontaine1002 Hi, glad to hear you are getting back on your feet. My husband had chemo, ddMVAC 6 rounds prior to cystectomy with neobladder. After surgery they found no CA in the bladder and none in lymph nodes or prostrate .. They canceled the post surgery immunotherapy. Guidelines said he didn’t need it. He has been taking signatera blood tests and they have been consistently negative before and after cystectomy. He’s 4.5 months post op.

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skybolt | @skybolt | Feb 24 9:23am
In reply to @kfontaine1002 "@michzn Hello I was diagnosed with high grade bladder cancer almost a year ago. I had..." + (show)
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@michzn
Hello I was diagnosed with high grade bladder cancer almost a year ago. I had chemotherapy before I had a radical cystectomy. I had a rocky course and then ended up, unable to take immunotherapy due to side effects. I was in the hospital because of complications for one month after surgery those were not predictable. I am just now getting my feedback under me. I’m not able to take immunotherapy again so my treatment options for recurrence would be limited. Hope this helps.

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@kfontaine1002 Hi, sorry to hear about complications after surgery and glad you are getting back. How were pathology reports from surgery? My husband had chemo prior to RC and his immunotherapy was canceled due to great path reports on bladder and surroundings.

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kfontaine1002 | @kfontaine1002 | Feb 24 1:48pm

Hello mocha;
My pathology reports were also all clear, as was my first CT scan. I requested the Signatera test, but my doctor said that there was no “medical necessity” for the test since the treatment for recurrence was immunotherapy, to which I’ve already had severe side effects.
Has anyone else had this response? Also, has anyone had a positive Signatera and negative CT scan?

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