Appointment today and results

This is a weird summary:  

philw said:

around 70 to 80% of people with my stage/ grade do not bother as it only helps by about 5 %

Adjuvant treatment after a nephrectomy has only very recently been offered following successful trials.  When I first joined here in 2022 no-one was offerred immunotherapy (pembro usually) after kidney removal.  Now,I am observing that many people are now being offered it.  It's far too early to have any stats on the new treatment.  

Kidney cancer was (is?) lagging way behind many other cancers for treatment after surgery, to minimise the chance of the cancer returning.  For example, for breast cancer, there are loads of options for a "belt-and-braces" approach after surgery.  Kidney is only catching up now, with immunotherapy.  

From what I've read on here, there is a particular type or grade of cancer they recommend immunotherapy for, post nephrectomy.  Probably the high risk?  I would suggest you ask loads of questions to make sure you make an informed decision.  

Whilst anyone's cancer can come back or become active again, it is not a definite.  I was talking about this to my oncologiist very recently.

Good luck!  

Yes I was surprised by my urologists comment but I’m guessing my oncologist who I meet with tomorrow might have a different opinion . 

Hi, yes, you could read it that way but you shouldn't! It's easy to be pessimistic and I have been down that rabbit hole but made a conscious decision to be optimistic and I am much happier! I'm sure your oncologist will be much more helpful. Thanks for asking, I'm good, just have the annoying dry mouth but have many strategies to alleviate it so it's not the worst thing that could happen!

Some reading material recently published from across the pond.

www.cancer.gov/.../kidney-cancer-pembrolizumab-increases-survival

Thanks! I think this might be from the US but I have seen other UK articles ( forget where!) that are similar in the information they give and also been told similar stats by a specialist nurse who attended a conference earlier this year.

Hi Phil - tricky decision isn’t it. I was very 50/50 but in the end went with what would I regret most, not giving it a go, possible reoccurrence and never knowing if would have made a difference or giving it a go, can stop if need to but at least tried and given myself the best shot. The side effects are scary, side effects with everything we just never read them as carefully. 

I have 2nd treatment in a week and a bit, so far so good

good luck and let us know how you get on. Hope you’re doing ok with your recovery. 

Hope your appointment goes well. Keep us all informed x

Thanks a lot , I appreciate it . I will post shortly regarding today’s appointment . 

Thanks cilla 

Interesting, and I know every situation is different but I met my new consultant last week who told me about the same thing - the 5% etc. It may have been a different % can't remember. He said I needed scans which I'm having atm, but if they were clear I could decide not to take the treatment as it can cause issues. My tumour was 4cm but deeper than expected and following histology more aggressive so they can't be sure all cells were removed. It's also a rarer form - papillary. I was kind of thinking I won't take the treatment and 'just' have the regular monitoring, but not sure if the risk of reoccurrence is just to the remaining half of one of my kidneys, or to other organs. If it's other organs as well I may take the treatment as secondary cancer sounds more concerning. Part of me has kind of been thinking I won't take the treatment and I'm cured, which is totally delusional I know. It was just a shock after all the operation/recovery etc to have it suggested I may not need further treatment, so my brain jumped to best case/denial thinking. Reading these comments such as with Janey36's points has got me thinking again. I'll see how scans go, get advice from the Oncologist and think it through. I understand why doctors / consultants ask what you want to do, but what do I know, I'm no expert. I need to educate myself further, and this forum and Macmillan has been amazingly supportive.