The Roy Castle Lung Cancer Foundation
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No hope and we don't understand why

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 .

3 Replies

Oh alice

I have never heard anything like it. What a load of....

Go privately if you can afford it. l feel so upset for you and wish I could help. I hope you get some advice from this forum from Roy Castle. Thinking of you both.


Hoggy xx


I really feel for you both. I have only one kidney and have worked hard to get the tests into the normal range and now it would appear that I may well be penalised.

The care I receive is minimal twelve weeks between appointments and then the last locum could not get away fast enough she had not even read the results of my blood tests. I had to ask and she went away to find them. I too considered a second opinion but realised that the original locum would taint the results as doctors stick together only a private one may suffice. But considering they have to collect the data from the original consultants this too is a risky process.

I do wonder if the medical oncologists are being manipulated by NICE.

I wish you both well.



Dear alice111

So sorry to hear about the response and the long wait you have both had in hoping for a treatment plan. Your disappointment and frustration is understandable. Be encouraged that the Oncologist thinks is it a primary adenocarcinoma and not spread.

In regards to the GFR, the difference is that your Husband feels well and if his GFR dropped, he would be in poorer health to receive the chemotherapy.

It may be worthwhile to seek out a private consultation (there are some at The Royal Marsden) This is the telephone number to request an appointment 020 7811 8111

This is a link to a private lung Oncologist who is in the Chelsea area ( Leaders in Oncology Care)

The other thing, your Husband may like to consider is clinical trials. Cancer Research UK have a list of all ongoing trials and who is eligible. I have placed the link below:

and also from Clinical trial Gateway UK:

If you wish to discuss anything you can call us on 0800 358 7200

Kind regards

The Roy Castle Support Team


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