Operation update

Hi Davey boy, I can very much relate to your situation. I had a right radical robotic in September with exactly the same staging numbers.

Post-operatively I was also told that my tumour was grade 1 and Leibovich 4 (intermediate risk). Participation in a clinical trial was suggested as a possibility and I subsequently discussed this with the oncologist. I also did lots of research with Dr Google, of course. My possible trial was RAMPART, on which it is easy to find lots of information, it really helped to know this. When I discussed it with the oncologist, both she and I had reached the conclusion that it probably wasn't for me because of other pre-existing medical conditions, or co-morbidities as they call them even though it sounds so much worse.She would have been prepared to refer me to the trial team if I had insisted but clearly thought that I might well be rejected. The outcome is that I'm not taking part in the trial but I am on the same frequency of monitoring. I also learned that a majority (4/7) of people on this particular trial receive no therapy and are just there as controls against which the outcomes of those on the drugs can be measured, so it's quite likely that I am in much the same position as if I had taken part.

Anyway I hope this helps to paint a broader picture for you. It's really useful to find out tumour grade and Leibovich score and, if possible, the trial you might be considered for and how it works. Doing my research before the meeting with the oncologist really helped me to think it through at my leisure in advance of the meeting.

Best wishes and I hope it goes well for you.

Thanks for this enjoythesunshine. I'm not sure what my other scores are as I didn't ask at the time and wasn't told. My surgeon was more interested in telling me about wanting to put me on the trial and I wasn't thinking clearly at that time which is why I've asked for the report. He did however tell me I was an intermediate risk. 

I was an open partial nephrectomy on my right kidney September 2020.

I had my six week check with the surgeon last Friday and was told they had removed a  stage 3 tumour and I had a 60% chance of it not returning, therefore a 40% chance that it could. I was also offered the Rampart trial and spoke to the research trial nurse. After a long weekend of discussion and anxiety I decided not to go for the trial. At this stage they don't know if it will be of any help in preventing return of the cancer and side effects can be severe. I am very susceptible to drug side effects so I have declined the offer of the study. The other deciding factor for me was that even if I ended up in the group that is monitored without being given any drugs I would have to travel 40 miles to the major hospital that was doing the trial whereas just going for the normal watch and wait treatment I can get the scans at the hospital just 3 minutes from home. Feel better now that the decision is made. Mags

Hi Mags. Thanks for this. I meet with the research doctor next Thursday and it will be interesting to see what he has to say. I too would need to travel a distance to the hospital for any treatment and I'm also returning to work next week so need to take that into account as well.  

Once we make a decision it does always seem to settle our minds.