Well, fully armed with all the information about lung cancer protocols etc, we returned to see the Oncologist this week. We had such a bizarre conversation that I really feel we are in a catch 22 situation . We were told that my husbands stage 4 adenocarcinoma was not going to be treated as he is negative for mutations and the GFR test on his kidneys was 34% so not suitable for carboplatin chemotherapy. The oncologists stated that he could end up on dialysis , to which I answered that I was sure there were people with kidney disease or even on dialysis who were being treated. His answer to this was that if my husband was on dialysis now he could have the treatment because the process of filtering his blood would remove the platinum from the blood. So essentially, he was saying that if my husbands kidney function was worse , and he was on dialysis he could be treated. My husband is in really good health at the moment with no symptoms, and we have waited 15 weeks to be given this news. I looked at our Cancer Network's protocol for carboplatin treatment and it's not recommended for those with a GFR of less than 20% so I still don't understand his rationale. After an hour of what turned out to be a fruitless conversation we left it that we would go for a 2nd opinion and then go back and see him . We followed this up with a conversation with our Gp who was arranging this with the Royal Marsden...she said she had a reply from the Oncologist saying she was happy to see my husband but doubted it would make any difference to the opinion. So here we are, my husband fit and well, not losing weight ...just waiting for symptoms to start . What makes it even more upsetting is that we have had so many delays , cancelled appointments and so much stress, all for nothing. Additionally, despite many requests we are still waiting for the clinic to provide copies of the pathology/ scans etc...this is very important as originally his tumour biopsy was "high" for PD-L1 , subsequently a 2nd biopsy came back as "low". ( my husband had early adenocarcinoma 5 1/2 years ago that was surgically removed, the Oncologist believe that his present cancer is not a recoccurance but a new adenocarcinoma) My husband want's the Gp to cancel the NHS second opinion as he feels that she has already stated her position without even seeing him ,and I think we might be better paying privately. I find it incredible after all the advances in Lung Cancer treatment, my husband has just got to wait to die.
Thank you for reading, I'm heartbroken .
My mum is newly Diagnosed
Small cell lung cancer, Advice
My brother
Just live day by day, Life is precious make the most of it, off to Sunshine States for 3 months.
