Kidney cancer patients: Let's connect and introduce yourself

Thanks for your comments. Getting old seems to have a few drawbacks for some of us. We travel on and take each day as it comes. You are a inspiration. Please, keep on keeping on.

At 82, being about your age and having low dose treatment for prostate cancer a couple years ago and now being treated for kidney cancer with Keytruda and having had high dose radiation to stop bleeding from malignant kidney lesion six months ago which was successful, I can relate to you. I also opted out of surgery for Kidney because of my age. I take it a day at a time and am in the process of deciding whether to continue with the immunotherapy because of severe skin rash. There are many of us going through a difficult time battling cancer.

Hello, All.
I'm Michael, a 83 YO man with stage I kidney cancer, It was found about 18 months ago incidental to a bladder retention problem which necessitated a CT. Also found was a small tumor on my right lung. The kidney was treated with a short course of radiation this past May, but has continued to grow, albeit very little. The lung tumor was treated with radiation in October, and a follow up CT will be done in March. The Thoracic Oncologist believes the lung will have been cured.
I should mention that I do not desire to have any major surgery, especially at this age. Also of not; I have chronic kidney failure of long standing, possibly caused by overuse of Ibuprofen. The CKF is stage III, and well controlled. My Type II Diabetes is also well controlled without any meds, and an A1C that has been around 6.4
The Radiation Oncologist has resumed following me for the kidney mass. This after discussions with a surgeon I saw last year, and the GenitoUrinary Oncologist I have been seeing lately. The GU Doc suggested a course of Chemo, and frankly the side effects were off-putting, so I was delighted when the RadOnc called to tell me that she would like to follow me, as the tumor is very slowly growing, and her thinking is a follow-up MRI in six months.
I had been very anxious and upset about having two different, and primary cancers. She put me at ease about my kidney tumor, and I'm hoping the small lung tumor is taken care of.
Thanks for reading this. It is important for me to know that there are so many more out there with similar diagnoses.

@lemom, how are you doing? What did you learn at your appointment in urology?

I'm new here.
2 Lesions were found in my Left Kidney in a CT scan for stomach issues, followed by an MRI which shows it's probably RCC.
I have an Appt with a Urology Cancer specialist on Monday.
After telling my Brother, I found out he had it 4 years ago and they removed 15% of his kidney with 2 lesions in it. His was Malignant. He didn't have any symptoms.
After going through many many tests to figure out what was wrong with my stomach, I'm starting to wonder if some of it is due to the RCC.

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

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

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.

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.

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