Hello, a brief summary. A family member was diagnosed with T3a RCC (believe the leibovich was a six). Nephrectomy in Sept 2024 and immunotherapy completed in Nov 2025.
After the pembrolizumab was completed as adjuvant treatment, had an appt with the oncologist in January. No scans were done at this point, instead they referred to some additional scans done in September due to other issues.
No follow-up scans have been organised ahead of the next meeting with the oncologist which is next week. Previously it was mentioned they’ll arrange something following the appt if necessary.
My concern is that the follow-up reviews seems really disorganised. This will be the fifth oncologist as there’s a high turnover. I’m concerned they won’t offer scans as CTs were done for a different issue a month ago.
Am I right to be worried, or is this how it works? I assumed scans were done as immunotherapy ends and were six months for the first year. Given the 3a 6 score, I didn’t think it could end up being a scan a year or just this casual!
Could anyone offer some advice or their own experiences?
Thanks so much.
Good morning, Alyrica.
I am Jamie one of the online champions. Firstly welcome to group and hope others will come along with their support to.
My details are in my profile. I have had 2 scans so far since my operation. One in feb and my last one was done a week ago. I was told I have 6 montly scans whilst on immunotherapy. Then once treatment is completed this will go to yearly for 5 years. So it might be worth mentioning this at the review and even though you had a CT scan for something different should not mean they wont do a another scan.
Please let me know if you need anything else. If you like to talk our helpline is open 8am till 8pm.
All the best,
Jamie
Helpline number 0808 808 00 00
7 Days a week. 8am to 8pm
Good evening. My score was 9. It would make things easier if all NHS Trust worked to the same format. Which technically they should if they follow the NICE guidelines.
Again it could also be based on risk, chance of recurrence has a impact on which care pathway patients follow.
Best wishes,
Jamie
Helpline number 0808 808 00 00
7 Days a week. 8am to 8pm
