Shocking life expectancy: My... - The Roy Castle Lu...

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Shocking life expectancy

EmCx profile image
EmCx
7 Replies

My wonderful husband (41) was diagnosed in February 22 with stage 3 in lung and lymph nodes. He's had chemo x 2 and immunotherapy then reduced to chemo x1 and immunotherapy as responded well. Last week, he found a new lump in his neck which after scans shows it has spread again. The disease in lung and other areas (pericardium) is still reducing. The oncologist has said that he will have radiotherapy on his neck and then back on treatment and now stage . My husband asked about life expectancy (I didn't want to know) and he said 12 months. How can this be true... he's only 41 and is in good health considering. We are devastated and I'm struggling to cope. I love him so much.

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EmCx profile image
EmCx
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7 Replies
Elt79 profile image
Elt79

I never asked at the outset but was told I had a very poor prognosis! Stage IV NSCLC with brain and adrenal mets October 2018. - my family told I I would be kept as well as possible for as long as possible. We are not statistics but individuals who will all respond to treatment in different ways I am currently living with cancer not dying from it. I know how hard it is to come to terms with but try to stay positive - no one knows how long they have. Wishing you all the best of luck stay strong xxxx

Nora1234 profile image
Nora1234

Not sure if you are interested but my husband has similar cancer . I have joined a Facebook group , uk based lung cancer support group. This has been great for me as there are lots of people with similar issues and they offer very positive support. TBH it has been a life line . I would recommend it highly. I agree with the reply you have had.

sassassas profile image
sassassas

Hi EmCx I'm so sorry to ready your post. My husband (55) was diagnosed 18 months ago with stage 4 NSCLC, so totally get how devastated you are. He too was given the standard crappy prognosis, but he is living with his cancer really well, on immunotherapy only now and currently no real active disease.

Don't give up hope - radiotherapy is a brilliant treatment for 'spots' that appear, alongside his chemo/immuno treatment. And his age and general health will stand him in good stead too.

Thinking of you xx

JanetteR57 profile image
JanetteR57

I remember looking at stuff online when diagnosed and being frightened - that was in January 2011 but in the years since I've become involved in lung cancer research and learnt a lot more about what the statistics show. as others have said none of us is a number and even when a medic suggests a timeline, they're only guessing based on averages - none of us is an average. in late 2012 I attended a Roy Castle event in Bham and met a patient advocate who'd been told she had stage iv and told less than 6 months - she was 48 - she managed to get on clinical trials for her particular type (EGFR+ mutation) and lived 4 years 4 months and saw her daughter marry in that time. Those treatments are now 'old hat' and into 3rd or 4th generation development - and many others have come along. All other treatment modes have changed since my diagnosis and surgery, radiotherapy, chemotherapy, targeted agents and immunotherapy now form part of the 'arsenal' used against lung cancer - in different doses, frequencies, methods dependent on where it is, where it has spread or other factors. live your best life whilst you can - don't let fear and anxiety get in the way - in truth none of us ever know how long our lives will be - I say that having lost my younger sister (40) 21 years ago and her daughter (33) 3 years ago.... but until facing a potentially life changing diagnosis, we really don't think or talk about it..... many lung patients don't appear ill or what we might imagine it should look like due to lack of realistic portrayal on media or outdated ideas before the new treatments were introduced. good luck to both of you... roycastle.org/about-lung-ca...

RoyCastleHelpline profile image
RoyCastleHelplinePartnerAsk the NurseRoy Castle

Hello EmCx,

I am very sorry to hear this news about your husband, it is always difficult to hear this type of time scale, these timescales quoted are only very rough estimates and as you can see from various previous posts many people have lived way beyond what was predicted for them, everyone is individual. As JeanetteR57 has said research is constantly progressing and producing new treatment options. It is defiantly worth asking if there are any clinical trials which are suitable for and are currently recruiting.

It is also important for you to take care of yourself and your own mental health, take any support that is offered to you by local hospital or your Gp.

Maggies centers are a great place for all types of support, they provide free advice on benefits and financial support as well as emotional support for all members of the family during the cancer journey. Theses centers are often connected to main cancer treatment centers

maggies.org/

If you would like to discuss anything at lungcancerhelp@roycastle.org, our free phone nurse led helpline number is 0800 358 7200 Monday to Thursday 0900-1700 and Friday 0900-1600

Kindest regards

The Roy Castle Support Team

So so sorry my husband 57 has lung cancer spread a little so on treatment the same, I keep asking myself this he’s so young just like your husband I’m heartbroken like you can’t see nothing in front except unhappiness 💙💙💔

EmCx profile image
EmCx

Dear all, thanks for your replies - much appreciated.Things are very difficult for us as we're trying to cope. Life feels like a nightmare that we can't wake up from. We're trying our best to be 'normal' but it's so hard. If it's possible, it feels worse than the original diagnosis. He's due to start radiotherapy this week and had chemo + inmuno a couple of days ago.

He's so upset and frightened. He doesn't want to die. We don't deserve this. He's such a good man and he's my best friend. We couldn't have children and we got through because we have each other.

I feel so resentful of everyone else living their normal lives even though it's not anyone's fault.

My dad died of bladder cancer in 2020 and my mum had ovarian cancer last year but she is well.

I'm so frightened of the future and trying to keep focused on radiotherapy working on his neck lymph nodes and the chemo etc hopefully continuing to work elsewhere but it's exhausting.

Sorry for the long post.

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