Kidney cancer patients: Let's connect and introduce yourself

First sign was visible blood in urine.

Hello, post RNU, I was diagnosed with Upper Tract Urothelial Carcinoma (UTUC), stage 4, so far without metastasis (Pet CT, head IRM, first cystoscopy). At the moment, I am on adjuvant chemotherapy, Gemcitabine + Carboplatine. That gives me myelosuppresion, but I really hope the rest of cancerous cells eventually still present after OP, were all distroyed. Wish you all the best!

@pachadgin, this must be so hard to see your son go through this. He is too young to be going through this. Does he have renal medullary carcinoma (RMC)?

What is the treatment plan for him now? Does he have a support group with other young people living with cancer?

Welcome, @dbdb. You may wish to connect with other members like @podrunner1 @lrwants2know @amyb5 @jcefly @mshel613 who have experience with upper tract urothelial carcinoma.

See these UTUC-related discussions: https://connect.mayoclinic.org/search/discussions/?search=Upper%20Tract%20Urothelial%20Carcinoma

My kidney cancer was discovered a little over a year ago; urologist refers to it as kidney cancer, but oncologist refers to it as bladder cancer since the cells that the lesion is actually in are same cells that are in the bladder; being a layman I don't really understand that. I opted out of surgery because of my age; I was 81 at the time and now 82. I am currently on Keytruda having had three infusions with the fourth due in two weeks. However, for the last month I have had continuous blood and clots, so the oncologist giving the Keytruda referred me to another oncologist where I will have 5 radiotherapy treatments over 10 days to control the bleeding. I hope it is successful since I have now become anemic.

I don't have any good news to impart. My cancer experience is definitely the "poor prognosis" version:
Coca-cola coloured urine in September 2021.
CT scan showed 1/2 right kidney destroyed in December 2021.
2nd try at biopsy in February 2022 result in high grade UTUC.
CT scan showed complete destruction of right kidney in March 2022.
Chemo - Cisplatin/gemcitabine 4 cycles - April to June 2022.
RNU - right kidney removed - August 2022. No Metamycin C instillation into bladder.
Immunotherapy - Nivolumab - September 2022 - August 2023.
TURBT 1 -Bladder tumours - non-invasive - March 2023.
BCG treatment - April 2023-May 2023 additional tumours visible in cytoscopy.
TURBT 1 - muscle invasive bladder tumours - July 2023
Chemo- ddMVAC 4 cycles - September to October 2023 - continuous growth of tumors
Urethra blocked by tumour - December 14, 2023 - catheter required.
Left ureter blocked by tumour - December 30, 2023 - emergency nephrostomy tube inserted to drain severely swollen kidney - virtual shut down of kidney.
Radical cystectomy with hysterectomy - February 2024 - T4a with invasion of vaginal wall.
CT scan - April 2024 - metastatic disease - right sacro-ileac bone destruction, invasion of entire pelvic wall, suspected nodes in both lungs.
Radiation treatment - 5 days - sacro-ileac bone - April 2024 - pain reduced by 50%
Chemo - low dose Cisplatin/Gemcitabin to protect sole kidney (eGFR 40 - 48) and slow cancer growth - May 2024.
Follow up CT scan in early July. Prognosis - perhaps treatments will prolong life for 8 to 12 months. Doctor-Assisted End of Life paperwork in place for when pain and quality of life become unbearable.
Summary - high grade UTUC definitely is a "poor prognosis" rare cancer. Researching a cure is difficult as most of the victims die too soon. Bladder cancer treatments (BCG, ddMVAC) not effective for me. Remember - UTUC is NOT the same as bladder cancer. My cancer started when I was 60 and I am hoping to get to my 64th birthday next year, but not very likely.

Hope other UTUC victims have better survival chance. It is aggressive, so make sure you advocate as hard as you can for more aggressive treatments if you can handle them.

Hello Collen and thank you for info. Have a nice day!

I have a small pull in the back, on my right side, thinking it was a muscle, but it was my kidney. My sister was sick and had a CT scan and they found she had kidney cancer. My mother had cancer all over inside of her so I just decided to get a CT scan. They found kidney cancer on me as well. So, may not have a sign of kidney cancer, but you might still get a CT scan if cancer is in your family