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Living after Kidney Removal From UTUC
Hey everyone! I had my left kidney and ureter removed on 6-29-23 due to UTUC- Upper Tract Urothelial Carcinoma. They had already removed a large tumor that was positive for UTUC from my left ureter on May 19th 2023. The surgeon/Oncologist told me that it was very aggressive and that my left kidney and ureter had to be removed as soon as possible or it would be too late. Well, the pathology results showed that my kidney was full of cancer cells that were ready to blossom into tumors! My surgeon told me from the beginning that this surgery would only save my life for now. He said that it will come back over and over but we just don't know when. Anywho, I was out in the heat too long yesterday and came home not feeling too good. I had been sweating profusely, then I started getting chills like crazy, and when I checked my BP it was horrible! My worst was the picture that I attached. I drank a bunch of water, 2 Body armor, and ate some watermelon. Nothing was really working. I finally was like, you know what, I think that smoking some weed might work. I smoked some and BAM my BP was right back to normal! I know what to do next time. 😁 I also have Gastroparesis, RSD/CRPS, among a long list of other things. I was wondering if anyone else that has had UTUC, had a kidney removed, no treatment before or after, suddenly find themselves with sky high blood pressure? If so what did you have to do about it? I appreciate any assistance anyone can offer. Thanks!
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I had a pacemaker installed 4 weeks ago.
I also have cancer in my ureter. My doctor suggested Jelmyto treatment (a 6 week chemo regimen). He also gave me the option of removing the entire kidney. What would you do??! Please help me.
@dderose1951 There is a lot of information on Jelmyto in the Bladder Cancer area of this website. I was diagnosed with ureter cancer (low grade non-invasive) in 2022. My urologist has been lasering it out about once a year for 4 years but recently referred me to a doctor who specializes in Jelmyto. That urologist told I am not a candidate for Jelmyto due to where my cancer keeps recurring. So I am most likely going to lose my kidney. I am resigned to it. I had an appointment with a kidney doctor just yesterday for his opinion and he was very reassuring that I will be fine with one kidney. Do your research and if I could give you one bit of advice it would be to get a second (and maybe third) opinion. Do not worry about offending your current doctor. He/she should encourage you to get a second opinion. But do it sooner than later. Be proactive for yourself. I wish you all the best,
Thank you so much for responding to me. I really appreciate your time. I’ve decided to have my kidney removed. There are only a few doctors in Las Vegas that does the jelmyto treatment, and was told it may not be effective. (My cancer is in the ureter. Thanks again for your time. David
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1 Reaction@dderose1951, when will you have surgery? How are you doing?
@colleenyoung my surgery is scheduled for July 16. I’m doing good. Just can’t wait to get it over with,
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