Hello, I’m new here.
My husband has stage 4 grade 4 RCC, has had his very large RCC tumour removed although spread to lungs and pancreas and started combination ipo/nivo therapy shortly after in July. Had to have further emergency surgery for complications to do with his intestines (blocked and twisted). Been through an awful lot and hasn’t properly recovered to continue with the mono immunotherapy. Shortly after the surgery he was readmitted and spent 7 days in ICU. Discovered he was in adrenal crisis and is now on corticosteroids - a side effect of immuno therapy. All of this has happened since June 2025 when he was diagnosed so it’s been a very difficult time emotionally and physically for him. I am supporting as best I can but do find it difficult at times. I’m still working (albeit from home most of the time) and have two grown up children still at home.
The new diagnosis of adrenal insufficiency is complicated and scary. The problem I have is that my husband won’t talk about the cancer, the treatment, surgery, AI, the special injections he should carry with him (but won’t) and so I’m second guessing all the time. I’m being very patient, not getting angry or showing my frustration but it’s hard. I have a good set of friends who are a great support and family too. But…..I still feel isolated and need a break. I’m sure there are others out there who have or had similar experiences. I know I’ll get through it as I’m strong and stoic. X
Hi Madge3862
Welcome to our community, I hope you find it both informative and supportive.
I am Steve, one of the community champions abd ny experience with cancer is via my wife who has Leiomyosarcoma. Janice did end up in ICU for a week actually prior to her diagnosis - something I would rather avoid in the future if possible.
A couple of years ago our son was diagnosed with a benign brain tumour, he had two rounds of neurosurgrey and then 5 weeks of proton beam therapy and that has been really succesful but is did leave him at risk of adrenal crisis and steroid dependant. So far though he has never had to use the injection but we had to do some tuning on doubling up on dosing if he was unwell.
Totally get what you mean about wanting a break though, at one point I was speaking to my GP and he prescribed some eco-therapy - getting out for a walk especially amoung trees and stopping and listening to birdsong was quite helpful.
<<hugs>>
Steve
