Stage 3a ccRCC - Keytruda or Surveillance?

For ebdent88. In my case I opted out of total nephrectomy which the urologist said was standard treatment for my kidney cancer which was diagnosed in April of 2023; I declined surgery because of my age, which was 81 at time of diagnosis. He referred me to oncologist who suggested immunotherapy with Keytruda; I have had 10 treatments up to now with 8 more planned; treatment started March 2024. I also had five high dose radiation treatments in June of 2024 to stop bleeding from tumor; bleeding has stopped for over six months . My last CT scan three months ago showed no spread of cancer with slight reduction in size of malignant lesion; I have MRI scheduled for early next month. For me up to this point Keytruda has worked, although I am suffering from a side effect of severe skin rash. For me Keytruda and radiation have worked, although I am much older and have not had the surgery. If side effects are not too bad, Keytruda may be a good choice for control of the spread of cancer. I am anxious to see results of my MRI.

WOW! This sounds so familiar! My surgeon insisted it was Stage 1- easy-peasy- simply remove then nothing further. Wrong! It ended up being a Stage 3, which he didn’t tell me til 3 days after surgery. Went for 2-wk follow-up, and he said “see you in 6 months”. So I called the American Cancer Society, and found out enough to know we had a problem. Let’s just say that after talking with them, I connected with an oncologist at WVU Hospital in Morgantown, WV. I am just over half-way through my Keytruda treatments, and have continued to work full-time, plus a side job, and continue most of my regular activities. Although I get tired easier, basically I’m doing well and feel confident that I made the right choice. There have been some side-affects, but nothing major. I’m so glad I took the initiative to seek further treatment because the surgeon did not check anything, just removed the kidney, and left some cancer in there. This would be quite a different journey if I had not done my own research. Follow your gut, and remember that you are your own best advocate. I will keep you in my prayers. Robin

Wow, I thought it was just my situation like that! My path report listed my tumor as pT1b based on size (6.1cm), but didn’t take into account the fact that it extended into the peripheries space and renal sinus. I looked up what that meant, and found out that made it pT3a. I called my surgeon, and she agreed the path report didn’t make sense due to conflicting info. She told me she would contact the pathologist for clarification. After a couple of days, I called the pathologist and left a voice mail. He called me back the same day and said he amended the report, and that the correct diagnosis was pT3a. Said the templates they use are electronic and they just click on the boxes with the results of each variable, and the report is supposed to be automatically generated. After the amended path report was posted, then I got the referral to an oncologist. I’m not even scheduled for a follow up with my surgeon until 2/3, 5 weeks after my surgery. Oncologist visit isn’t until 2/10.

However, a friend of a friend was able to get me in to see the head Kidney oncologist at Duke on 1/29, so I will see someone very highly regarded who specializes in renal cancer oncology. And that’s almost two weeks before the local guy I was referred to could see me. I’m basically getting my 2nd opinion first.

May I ask what jobs you do? As a dentist who works with a mask on pretty much all day, nausea would not be conducive to working for me. Someone recommended of if I go with Keytruda, try a cycle or two and see what side effects I get before committing to full time back to work.

Appreciate your reply!! Continued good luck in your journey.