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@sally0526

Hi all! My laser surgery to ablate my UTUC tumor has been set up for October 25th. I’m very glad this treatment option was offered by a urologist who wants to save my kidney as much as I do! Also, to anyone reading this who is hesitant to get a second or even third opinion because they are worried about offending their current doctor…please let that feeling go. As a matter of fact, your current doctor should be ENCOURAGING you to get a second opinion. Just make the call and follow through. It’s your health and your right to manage it. I have an appointment next week with a nephrologist for a THIRD opinion, and to establish a relationship just in case my kidney does eventually have to come out. I’m trying to be proactive, even though I’m still in shock somewhat from hearing my diagnosis. It’s definitely life changing and it shifts priorities for sure. Also, thank you to Mayo Clinic Connect for providing this forum for us. It has been a tremendous help to me to be able to vent and discuss my diagnosis with other cancer patients. 😊

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Replies to "Hi all! My laser surgery to ablate my UTUC tumor has been set up for October..."

Sally...as I told you earlier, I proactivly reached out to UROGEN the manufacturer of Jelmyto to see if I could get any more up to date data on the product, the success rates of cure, the side effects, and any improved 'best practices' for the proceedure. A very informed lady did reply and called me yesterday. She said they now have a total of 100's of patients that have or are on the drug. She admits that the patient/doctor feedback is difficult to gather (although problems and side effects are to be reported to them and FDA), doctors often do not follow through. She said the alternative direct tube into the kidney has reduced the number of ureter strictures issues, and she sent to a linked report that I could read that study. She also had that a different UROGEN, patient advocate person contact me...and they are going to set up a way for me to talk direct with others who have used the JELMYTO process. I will let you know more after this direct patient research process. If you would like my direct phone number to chat further I am open to sharing and easier discussion. Texting on my cell phone is to slow. God Bless.