I was wondering how often you guys get follow up scans, ie the more advanced the cancer is I guess your scans should be more frequent or does the NHS tend to have only six month at a time in general?
You have been through a lot and seem to be doing great . I see you have had immunotherapy but have followed that with different drugs for years so well done to you . You really inspire me .
Hi, according to my kidney nurse, here in Hull all partial nephrectomies are done as high risk follow up. That is first CT scan a 6 month, then the next two yearly then 2 yearly etc. For 11 years. Not sure what radical follow ups are though.
1/ Nephrectomy (full or partial) then scanning to check for success or signs of re-occurrence of the b*55*r.
2/ Treatment (usually after metastatis) then frequent scans to monitor whether treatment is working.
I'm in the second situation.
Once the treatment started I was on 3 monthly scans. The treatment did its stuff (tumour got smalller and the mets disappeared) so we pushed out the scans to 4 months. Scary - a bit!
Then I started a trial. The trial mandated scans every 8 weeks. Oh. My. God. Too frequent! I was always in the bl00dy hospital! Weekly!
After 6 months of the trial the scans changed to 3 monthly.
I started having a conversation with my oncologist suggesting every 5 or 7 or 11 months would be appropriate. Note how my stance changed after 2 years of productive RCC treatment!
We're going to roll onto 5 months soon and I'm planning the last treatment in May with my onco's support. I've had all the benefits of treatment now and I want to stop before I get an impactful side effect.
