New here, brain fried!

Time.  

I was diagnosed in Nov 2021 and had treatment including a trial until June 2024.  I recognised that I could do nothing about the success of my treatment, or whether it would re-grow.  My tumour remains at 23mm and "managed".

Over time I came to terms with the uncertainty.  I set myself a target of 5 years (due Nov 2026) then age 60 (2029) then 70 (2039) as a stretch Target.  This was really for my "entertainment ".  It amused me.

Now I am in a completely different place.  Of course, this is assisted by the time lapse and my good response to treatment.  But there is no quick win to be had in this space.  These are big and frequently complex issues we are dealing with. 

I would also add that kidney cancer has always lagged behind other cancers in terms of adjuvant treatment.  Where as it appears other cancers have A or B or C, many options, to mitigate a return of the bu55er, kidney cancer *just* scanned every 3 months or / and pembrolizumab immunotherapy for 3-6 months.  But this immuno approach is very new.  It's just become available in the last 3 years. 

I don't think the pembro approach is universal for all ccRCC types, but it would or should or could be for yours.  

Many thanks for your comments - I really appreciate seeing it from your perspective of a few years down the line.  My tumour was 68mm and they removed it and my whole kidney so no treatment for now, just monitoring.  This is all very new to me and I think it's just overwhelming and a big learning curve still.  

Hi VeeDub, I think maybe the reason they are just monitoring you and have not offered you immunotherapy could be because your kidney tumour was “contained with no spread” . So by removing the tumour and your whole kidney, your current medical status is presumably “NED” (no evidence of disease) - do check that with your doctors.  If so that is good news.  I was also “NED” following surgery about 6 months ago, BUT they also found a second tumour, a small metastasis, on my adrenal gland and that, I believe, is what made the crucial difference to the follow up - I’m on immunotherapy (Pembro) for a year as well as the monitoring  scans.  Of course I’m not a doctor and I may be wrong, but this is how I understand the rationale - in my case - behind just monitoring, or monitoring plus treatment. 

Exactly the same here. Grade 4 cancer after total nephrectomy.

I'm also on monitoring with no other treatments. However I've had 3 scans since the op last December and nothing has returned though I haven't heard about the last one 4 weeks ago. I hope no news is good news!

I went through a phase when I thought I was just waiting to die but that has now passed.

It's difficult, we can't control our emotions but time for me has been a great healer.

Hang in there.