My husband had throat cancer and was cleared in 2017. Then lung cancer last year, was cleared but its now returned.He is currently receiving Immunotherapy as chemotherapy wasn't helping.
My question is why when we ask the consultant or her Registrar for a prognosis they don't know, we haven't been told what stage it's at.
The cancer has spread outside the lungs, he has a growth on his face. He has had his thumb amputated. He has had 3 Immunotherapy sessions now.
They did a CT scan last Wednesday but after asking when his next appointment with consultant is, they couldn't tell me.
It certainly seems like you need a meeting with the consultant. I’m hoping/assuming that the date and time for the appointment will come through very swiftly when the results of the CT scan are known.
As for the ‘don’t knows’ about immunotherapy, I’ve been on it for over four years. I’ve had many ‘don’t knows’ over the course of the treatment and that’s because it’s such a new treatment that medical science genuinely doesn’t know all the answers yet. I’ve personally found when they say they don’t know, it’s because they don’t know and research is still in progress. That’s not to say we’re guinea-pigs in this - far from it. they are very cautious because of the unknowns.
I am on Pembrolizumab (known as Keytruda in the US) and found it helpful to read up about it and the success stories as and when they come through - from reputable sources of course.
Thank you so much for responding to me. Yes I do realise that the treatment is very new and they don't have all the answers.I am going to phone re appointment again tomorrow
I hope everything goes ok for you
Hi Peonnie, I think all these questions needs to be answered by your husband's team. Haven't you got access to a cancer specialist nurse? They are usually very good and will answer your questions regarding stage, prognosis and treatment better than us. Best wishes.
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Hello Chanie,We haven't been assigned a nurse specialist, even though I know that's the normal process. We have asked, but I'm guessing it's because they are totally overwhelmed by cancer patients.
I will call them again tomorrow. Thank you for replying
It sounds like your husband has really been through the mill - and you'll have been going through it too.
Chanie and Ellejayb have already given you some great advice, but just wanted to share my husband's story too, as another example of someone with late-stage lung cancer responding really well to treatment.
My husband was diagnosed with stage 4 NSCLC exactly 2 years ago. He has responded really well to immunotherapy - he has tecentriq (atezolizumab) which I think is less common than pembro although they work in similar ways. He is currently NED - no evidence of disease and is really healthy and well. Some people respond so well to immunotherapies (and the targeted therapies), so it's really difficult for the medics to predict someone's prognosis accurately.
I hope you get the CT results quickly from the consultant and you are able to contact your cancer nurse to get some answers soon.
Hello Sarah,Thank you so much for replying. He is on the same treatment as your husband. The consultant did say she would try 2 more sessions. But so far he doesn't seem to be responding. It's so difficult to know what to do. But you have given me hope, that I did originally have! But these last few days have been really difficult.
Welcome to the forum and so sorry to hear about your husbands lung cancer recurrence. This must be difficult for you both as it sounds like it has been quite a journey already.
It is understandably frustrating not knowing the staging or that they do not have an answer to the prognosis. Certainly, with the advancement of lung cancer treatments, it can be difficult to predict as many people each respond and react differently to the treatment.
You mentioned that you will be contacting the hospital today, the hospital switchboard can put you through to the oncologists secretary (and apologies, if this is what you are already doing) and there perhaps needs some clarification as to why there is no referral for a lung cancer nurse specialist. There should be a follow up appointment after the CT scan.
If you feel you are not getting any answers or appointments, you may wish to consider speaking to the Patient Advice and Liaison Services within the hospital, known as PALS, they act as an advocate and provide free confidential advice. nhs.uk/nhs-services/hospita...
We have a range of patient information booklets from diagnosis, the different treatments and living with lung cancer that you can access from this link: roycastle.org/help-and-supp...
If you are interested, we have a range of support services, from one to one support to online support groups through zoom , if you or your husband are interested in any of these you can register through this link: roycastle.org/help-and-supp...
Please do not hesitate if there is anything else you would like to discuss, you can email ask the nurse at lungcancerhelp@roycastle.org or call our free phone nurse led helpline number on 0800 358 7200 Monday to Thursday 0900-1700 and Friday 0900-1600
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Update - Immunotherapy treatment
1 year on with Stage 3b
Stage 4 NSCLC with metatasis to brain 
Nsclc stage 4 with brain mets
Hi all new here!
