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.

I have experienced no nausea at all, but some mild diarrhea and irritating skin rashes - mostly yeast. I run a program for homeless full- time which is a very high energy commitment, and work on the side as a mobile notary. Plus my age of 68 doesn’t do me any favors. My appetite is good, and I still enjoy my hobbies. I’m really glad to see that you didn’t settle in and wait - you have to be pro-active and diligent about your own care. Best of luck to you, and I will include you in prayer.

I had a radical nephrectomy in February 2014 because of a kidney tumor and stage 3B kidney disease diagnosis. That was after 5 doses of radiation that apparently didn’t work. I was put on an every 6 week Keytruda infusion therapy for a year. I have two more infusions to go. So far I haven’t had any evidence of continuing cancer. When I first started on Keytruda the only side effect I had was I got very tired for about the first two weeks following the infusion. After about my fourth infusion the tiredness went away and now I have zero side effects. I have no way of knowing if the Keytruda has kept my cancer at bay or if the doctor removed all signs of it during the surgery. But I think taking the Keytruda did help to ease my mind somewhat. Hope this helps.

Local oncologist recommended Keytruda every 6 weeks for a year. Second opinion oncologist at Duke Cancer Institute said Keytruda was not warranted with G1 tumor grade. He requested my pathology slides so he could have his pathologist evaluate them. The new pathology report lists my tumor as G2 (instead of G1), notes the tumor was necrotic (instead of that not being noted by the original pathologist), and the tumor extends into the pelvicalyceal (instead of perinephric tissue/renal sinus only). I don't know if that will change his recommendation. If it doesn't, I will have to decide which route to take, or to get a third opinion. If he changes his mind and also recommends Keytruda, it's a no-brainer to go that way.

I agree it is a hard decision; I have been on Keytruda for kidney cancer for almost a year, since I decided against total nephrectomy because of my age after diagnosis two years ago. I had MRI last week that showed malignant tumor had slightly reduced in size, so things are stable. My 12th infusion is scheduled for next week; 6 more scheduled. Up to now Keytruda has worked for me with the only side effect being persistent skin rash which is very bothersome. Other scans have shown no spread of the cancer. I also had high dose radiation to stop daily bleeding from the lesion done last year; so far I have been free of clots or blood for 230 days. Blood tests given before each infusion have been largely normal. I remain positive and enjoy each day of relative health as a blessing.