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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.
@so1frustrated This article was just posted on the Mayo News Network today, and may give you some answers, or guidance.
@so1frustrated, I just read more information that you provided about your diagnosis in this post https://connect.mayoclinic.org/comment/602308/
While I'm sure you are glad to finally have a diagnosis and can now start a treatment plan, you're also searching for answers.
Urothelial cells line the inside of your bladder and is the most common place for urothelial carcinoma to be found. Urothelial cells are also found in your kidneys and the tubes (ureters) that connect the kidneys to the bladder. Urothelial cancer can happen in the kidneys and ureters, too, but it's more common in the bladder.
From what I understand, your cancer was found in the ureter pelvis and ureter. I have added your discussion in the Cancer group https://connect.mayoclinic.org/group/cancer/ as well as the Kidney & Bladder group so you can more easily connect with others with the same type of cancer or bladder cancer like @jim8086 @barbim816 @sue225 @plugger @texascitylady and @parus
Sofrustrated, what are the next steps? What treatment is being suggested?
Husband had kidney removed followed by chemo with cystoscope starting @ 3 month intervals.
Jump to this post
Barbm816, for the same type of cancer? Are you willing to give me any more information like if it was high-grade or low-grade, or if had been found anywhere else? And is the chemo placed in bladder and how is he doing? Right now surgeon wants me to have chemo BEFORE doing surgery (he still will remove kidney and ureter and bladder cuff) so it would delay removal of cancer for awhile and I would be extremely weak and ill from chemo, only because it is high-grade (not to mention other possible long-term effects); does not look like it has spread anywhere else. The treatment your husband is getting—how is he doing with that? AND thank you for replying…you are only one so far!
@so1frustrated I was diagnosed with bladder cancer around 2 years ago and was terrified when the PA implied the best thing was to have my bladder removed and blah, blah, blah…I was one freaked out woman when I left his office. After learning more I chose to go with the BCG treatments. So far so good at this time.
Chemo before surgery is a common and successful approach from several tumor types, including pancreatic cancer and breast cancer. The chemo can help reduce the size of the tumor and make it easier to extract the tumor completely (to oversimplify things).
Sofrustrated, it sounds like you are concerned about having chemo before surgery and that your concern is about delaying the surgery. You just want the cancer out. Am I interpreting that right?
Have you talked to your team about the benefits of chemotherapy before surgery for you? Have you shared your fears?
I know….so hard to decide. i will have to have my kidney, ureter and bladder cuff removed but for now not the bladder. He wants me to take chemo BEFORE surgery to reduce chances of recurrence in the bladder or anywhere, but pretty much decided not. I have been through cancer (breast) and radiation implant/treatments and chemo 37 years ago. Some of the problems with health over the years since (now 66) have resulted from these treatments. The research/data on chemo lately is showing to reduce the odds of recurrence, but for me at what cost? Right now it does not look like it has metastasized anywhere, even the lymph nodes "looked normal" with the CT urogram but he does not know for sure. I have been researching like mad myself, even getting a subscription to research studies on this type of cancer, about pros and cons of preoperation chemo, etc. So I'm thankfully here in this group to see what others have been through and what is/has been working etc. THANK YOU for responding!
Colleen, here is a response I just made (copied it) to another: "I know….so hard to decide. i will have to have my kidney, ureter and bladder cuff removed but for now not the bladder. He wants me to take chemo BEFORE surgery to reduce chances of recurrence in the bladder or anywhere, but pretty much decided not. I have been through cancer (aggressive invasive breast cancer) and radiation implant/treatments and chemo 37 years ago. Some of the problems with health over the years since (now 66) have resulted from these treatments. The research/data on chemo for this type of cancer I have now lately is showing to reduce the odds of recurrence, but for me at what cost? Right now it does not look like it has metastasized anywhere, even the lymph nodes "looked normal" with the CT urogram but he does not know for sure. I have been researching like mad myself, even paying to get a subscription of latest research studies on this type of cancer, about pros and cons of pre-operation chemo, etc. So I'm thankfully here in this group to see what others have been through and what is/has been working etc." That's it in a nutshell. I have researched the possible short-term and long-term side effects from the 2 types of chemo regimes they use for this; the chemo may increase my chances of it not coming back, but do not want to add to health problems and reduced quality of life for the rest of my life; this cancer is survivable without the chemo. Your continued input is welcomed and much appreciated!
@so1frustrated I am glad to read you are proactive, and that some fellow members are giving their story out. We are each so different, with differing past medical history, like you with your breast cancer experience almost 4 decades ago. Things have developed and been innovated in medicine a great deal, even things five years ago may be considered outdated now!
As you gather your data, and thoughts, perhaps ask your team this: "If I was your sister/daughter/mother, how would you advise me right now?" This may serve to bring it personal to them.
@parus– Welcome back my friend. It's so good to hear from you. Sometimes opting for a lesser procedure is just the right choice! Education by researching gives so much power to make these decisions! Right?
@merpreb You betcha or it was right for me. I swing by at times to snack at the cyber table. Life for now is just too overwhelming to contribute. I keep hanging on to the knot in my rope. If there was a medication that would help with this damn depression I would be thankful. Now the PCP wants to change the thyroid medication again as the TSH is a little high. Good to hear from you too. Life is just sucky.
Second cervical rhizotomy for pain coming up. I do them under a local as I trust so little I prefer it for this procedure. The pain specialist I trust and he even prefers to do the procedure under a local.
Had my little guy last Sunday. That helps. Sad to see the darkness engulfing even the school systems. At least they will be out for the summer soon.
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