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.

Interested in more discussions like this? Go to the Kidney & Bladder group.

@so1frustrated

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!

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@so1frustrated Thank you for more info. Research is a good thing as long as one does not get too stressed by the plethora of info on line.

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@parus

@so1frustrated Thank you for more info. Research is a good thing as long as one does not get too stressed by the plethora of info on line.

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I understand what you are saying. That is why I'm looking for someone who has gone through this, especially the chemo for this type of cancer and if they had pre- or post-op. Sadly not getting any responses.

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@parus

@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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I so appreciate your post, @parus. You have a good understanding of yourself and what you can handle in order to keep safe. That is a great quality! I'm so glad to hear that your little grandson is part of your life again. I know he brings you a lot of joy.

Do you have any art projects coming up?

I hope that your next rhizotomy is successful in helping with your pain. Will you post again after that procedure and let me know how you are doing?

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@so1frustrated

I understand what you are saying. That is why I'm looking for someone who has gone through this, especially the chemo for this type of cancer and if they had pre- or post-op. Sadly not getting any responses.

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@so1frustrated, I want you to know that I have been thinking about you and wondering how things are going. Have you been able to meet anyone thru your medical team who is able to share their experience with you?
Have you decided about whether you will go for the chemo?

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@rosemarya

@so1frustrated, I want you to know that I have been thinking about you and wondering how things are going. Have you been able to meet anyone thru your medical team who is able to share their experience with you?
Have you decided about whether you will go for the chemo?

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Awww, thank you Rosemary! Have not found another with same situation, but went ahead with surgery only and had right kidney/urethra and bladder cuff removed on July 19. Came home this past Thursday July 22.. At same time as surgery I agreed to let them fill my bladder with Gemcitabine which is a chemo placed just in bladder for 1 hour to help reduce chances of recurrence there. When I met with new oncologist prior to surgery he said my decision of no pre-op chemo was fine, and agreed with what I'm doing. Am awaiting lymph node pathology and final pathology on renal pelvis. Will hopefully have follow-up with surgeon sometime this week where he will check bladder again post op to see how doing. Will be meeting with oncologist again Sept. 6. I have decided no chemo treatments no matter what they find but am researching ways to fight naturally; my hopes are that oncologist (I really like him) is up on some natural ways. So onward we go. How are you?

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@so1frustrated

Awww, thank you Rosemary! Have not found another with same situation, but went ahead with surgery only and had right kidney/urethra and bladder cuff removed on July 19. Came home this past Thursday July 22.. At same time as surgery I agreed to let them fill my bladder with Gemcitabine which is a chemo placed just in bladder for 1 hour to help reduce chances of recurrence there. When I met with new oncologist prior to surgery he said my decision of no pre-op chemo was fine, and agreed with what I'm doing. Am awaiting lymph node pathology and final pathology on renal pelvis. Will hopefully have follow-up with surgeon sometime this week where he will check bladder again post op to see how doing. Will be meeting with oncologist again Sept. 6. I have decided no chemo treatments no matter what they find but am researching ways to fight naturally; my hopes are that oncologist (I really like him) is up on some natural ways. So onward we go. How are you?

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@so1frustrated, It is good to hear that you have connected with an oncologist whom you like and who is going to work with you. Your interest in researching your condition, and your self advocacy are definitely to your benefit as it sounds like you can have an open and honest communication with him.
You asked how I am, and I will say that I am doing well. I had a good check-up at Mayo in May for my annual transplant evaluation. It is always a happy feeling when there are no changes to medications!

I want to point out a currently active discussion. I don't know if it pertains to any of your situation, but I want to share the link with you. Members are talking about bladder cancer, and chemo, radiation.
https://connect.mayoclinic.org/discussion/bladder-cancer-kidney-transplant/

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@rosemarya

@so1frustrated, It is good to hear that you have connected with an oncologist whom you like and who is going to work with you. Your interest in researching your condition, and your self advocacy are definitely to your benefit as it sounds like you can have an open and honest communication with him.
You asked how I am, and I will say that I am doing well. I had a good check-up at Mayo in May for my annual transplant evaluation. It is always a happy feeling when there are no changes to medications!

I want to point out a currently active discussion. I don't know if it pertains to any of your situation, but I want to share the link with you. Members are talking about bladder cancer, and chemo, radiation.
https://connect.mayoclinic.org/discussion/bladder-cancer-kidney-transplant/

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Thanks for.the information. Good discussion.

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@so1frustrated

Awww, thank you Rosemary! Have not found another with same situation, but went ahead with surgery only and had right kidney/urethra and bladder cuff removed on July 19. Came home this past Thursday July 22.. At same time as surgery I agreed to let them fill my bladder with Gemcitabine which is a chemo placed just in bladder for 1 hour to help reduce chances of recurrence there. When I met with new oncologist prior to surgery he said my decision of no pre-op chemo was fine, and agreed with what I'm doing. Am awaiting lymph node pathology and final pathology on renal pelvis. Will hopefully have follow-up with surgeon sometime this week where he will check bladder again post op to see how doing. Will be meeting with oncologist again Sept. 6. I have decided no chemo treatments no matter what they find but am researching ways to fight naturally; my hopes are that oncologist (I really like him) is up on some natural ways. So onward we go. How are you?

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My husband is 2 years into dealing with highly aggressive urothelial cell carcinoma of the bladder. The Mayo oncologist we spoke with was not highly supportive of the studies of chemo prior to surgery. The surgeon agreed and we chose the surgery option plus they did the Gemzar in the bladder. Post surgery he was on Cisplatin and Gemzar both for several months IV and tolerated it well. Some appetite changes and some hearing loss and a temporary neuropathy with tingling in feet. Unfortunately new bladder tumors have recurred regularly and BCG immunotherapy in the bladder did not control them. Multiple cystoscopic surgeries to remove and cauterize. Noe he has been on a checkpoint inhibitor Keytruda for 5 months but a new tumor recurred this summer. He is opting for a radical cystectomy with neobladder to be done at Mayo in December. He has been lucky that there have been no recurrences outside of the bladder. We are both doing an immune therapy that we go to the Bahamas for. I have been doing it for 9 years for my Head and Neck cancer. It seems to have slowed down my disease but not stopped it. Metastatic SCC does not offer a cure, but am now on the immunotherapy Cemiplimab and responding well. The oncologists say my tumor does not act normal, much slower in progression and perhaps the Bahamas immunotherapy is responsible for that. Quantumimmunotherapy.net if you are interested. I am exploring medicinal mushrooms also. The book The Rebel's Apothecary got me interested. Research Beta Glucans for immune support. When you follow through with traditional medicine as far as you can, then it seems you must do much research on your own to find the complementary therapies. I love that my Mayo doctors have had an acceptance of the other things I do, even tho they may not understand or believe in the treatments. But I have always followed their recommendations first, as has my husband in his medical journey.

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