Update

[Newbie270]

Hi all, just wanted to say thank you all for been so helpfulWe went to see the oncologist consultant today he was a senior reg r he showed my dads lung scans and he said they can’t see the tumour it’s covered with fluid however they said it’s definitely stage 4 and it’s spread to the lymph nodes which they said are quite large next to the bronchial he said they still don’t know wether it’s small cell or non small cell and still don’t know what protein or mutation

He said he will either call me later today or in the week, he then said if your dad has no treatment six months (we are all deverstated ) he said if he has combination of chemo radiotherapy and he could have imunotherapy as a second line treatment prognosis two years or more and then he said everyone reacts to treatment differently my dad is really tired now and just wants to sleep we asked him he said he doesn’t want treatment we hope he changes his mind we all feel numb

[RoyCastleHelpline Partner Ask the Nurse Roy Castle]

Dear Newbie270

So sorry to hear the news of your dad, and how distressing and overwhelming for you all to process.

I take it your dad has had a biopsy and you are awaiting on a clear diagnosis on the type of lung cancer and if any mutations/proteins are present.

Everyone , can respond and react differently to treatment, some people do very well, and for some they weigh up their quality of life versus extension of life, which is a very personal decision.

However, as a family, it it totally understandable that you want your dad to have any treatment that may give you all some more time. You know your dad best, if he is definite on his decision or it may be his tiredness is impacting on his choice, that it is too much to think about.

It may be by giving him some time to think about it and as a family supporting and respecting whatever he decides to do. It is a very stressful time for you all and please know you can contact us if you would like to discuss anything, you can email ask the nurse at [e-mail] or call our free phone nurse led helpline number on 0800 358 7200 Monday to Thursday 0900-1700 and Friday 0900-1600

We offer online support groups for carers and one to one support, you can find details of these through this link: roycastle.org/help-and-supp...

This link from Macmillan support provides some information for those caring for loved ones with cancer: macmillan.org.uk/cancer-inf...

Kind regards

The Roy Castle Support Team

[JanetteR57]

Your dad's reaction is sadly common at the start particularly as none of us know or appreciate that treatments are being developed all the time even for advanced cancer which the majority of UK patients are diagnosed with.

Nobody has a date stamp on so nobody can be sure - but I have met many patients who have far surpassed any estimated date clinicians gave and their treatments were not some of the newer ones in use today. Also our lack of knowledge and experience about chemotherapy and other treatments can lead us to think they're all terrible but many people don't even lose their hair with newer treatments - although they're clearly no walk in the park...

Immunotherapy is usually given only for 2 years as the body's own immune system kicks in during that time to offer protection so I do hope your dad when he's able to consider it in time may think about what that additional time might offer him. 2 years or more is probably a conservative - many studies show some especially those on targeted agents for their mutations or on combination treatment live longer than this. The CNS who encouraged my involvement in lung cancer research was told 'less than 6 months' but on trial meds (2 different trials - after one stopped working) lived 4 years and 4 months - long enough to see her daughter marry and several trips to see loved ones and lived life fully in between treatments. She died in early 2015 and the treatment landscape has changed beyond measure since then.

It's hard and overwhelming to work through this news but try not to google, Roy Castle lung cancer foundation is a trusted information site regularly updated with input by clinicians and patient review panel and offers support to anyone impacted by lung cancer (not only the patient) with online, printed information, group and individual support. hope you can work through this to support him... thinking of you... roycastle.org/about-lung-ca...

[Newbie270 in reply to JanetteR57]

Hi Thanks for your reply dad was rushed in AE this morning laboured breathing they still awaiting mutation and proteins biopsy results they were only sent last week when he ad the biopsy about 4 weeks ago!! He's stable now but I had to call 999 blue light this morning he wasn't well at all the right lung is full of fluid and that were he has the cancer theybare going to treat him with a broad spectrum antibiotics and then start radiotherapy hopefully next week I just hope the infection clears and he can start the radiotherapy the consultant said 6 months without treatment 6-12 with radiotherapy chemo and radio 1/2 years of he can't have imuno therapy they will still give it him as a second line of treatment we don't want him suffer and he doesn't want to suffer he's suffering but we want has much time with him we adore and love him so much he's our dad

[JanetteR57]

Sorry to hear this latest and glad he's now having care. I've had much worse symptoms on several episodes where I've been admitted to hospital (including by ambulance) between 2015 and 2019 with nasty chest infections (pneumonia, pseudomonas and RSV) than with my original lung cancer diagnosis and treatment.

When somebody has an infection as well as cancer, we tend to think all the symptoms are related to the cancer but if they can get them under control with antibiotics, nebulisers, in my case IV antibiotics then the infection can be dealt with enabling treatment to start for the cancer.

Don't write him off and hope he doesn't write himself off either with this setback - there are really difficult days for all but hopefully treatment will kick in and he'll perk up.My dad had bowel cancer in his 50s when I was in my 20s and 6 months later told it was back (what I know now is that they hadn't removed it all with their surgery) and we feared he wouldn't reach 60, he was so frail and in hospital for weeks. He was 92 in February and had another primary bowel cancer in 2016 and yet more surgery at the age of 86 for that but still pulled through somehow as he wanted to get home to look after my mum (Alzheimer's) so having a purpose and reason to live can help motivate.

I do understand how difficult it is to watch loved ones suffer but sometimes we imagine if we refuse treatment, it will be a peaceful swift end but that's not always the case either so it's important to make a properly informed choice.

Thinking of you all at this time... and hoping you get as much time to carry on adoring, loving and living with and for him as you'd wish. take care.

roycastle.org/about-lung-ca...

[Newbie270]

Thanks we are trying to remain positive but he looks so I'll and frail at the moment I pray he pulls through songs can start the radio therapy my dad is 77 with other co-morbidities we just all feel deflated we haven't wrote him if he's our dad we love and adore him so much

[JanetteR57 in reply to Newbie270]

how's your dad now?

[Newbie270]

Not good they are treating him for small cell and non smal cell but mainily small cell it’s gone to his brain cerrebleeum can this be treated if I’m this part of the brain??