Update on 5 year survival rate. - The Roy Castle Lu...

The Roy Castle Lung Cancer Foundation

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Update on 5 year survival rate.

Tike3 profile image
34 Replies

Just seen my Consultant on 22 June to see how things are progressing and what treatment is next. No more treatment and nothing at all they can offer, I was totally numb and more shocked when she said only 6 months or less to live.

After all this treatment I just can't believe it and how can they put an exact date on when I will die, I'm scared and frightened, I have to sort things out in such a short time.

Please can someone help me

Thank you

Pam

34 Replies
Beatless profile image
Beatless

Tike, Just treat it as an estimate, could be worse, could be better. Take one day at a time and plan the things you know you want to do. Hard but f you set your mind to it you can do it, 6 months could come and pass with no problems, please keep us informed.

Are you on Steroids?

Tike3 profile image
Tike3 in reply to Beatless

Thanks Beatless for your help and support Yes, it's not written in stone is it, but it was a terrible shock, your right 6 months could come and go. I'll set my mind to it and fight this cruel horrible disease. Yes I'm on steroids and I can see an improvement in just a couple of days especially in my legs.

Anyway enough about me how are you doing

Wishing you all the best

Pam

Beatless profile image
Beatless in reply to Tike3

Tike, You must, repeat, must, stay positive, every day think of a job that needs to be done, this should aid your situation

As for me still walking with frame one painful step at a time. They said 6 weeks to see if improvement, so 5 weeks to wait. I just hope every morning when I get up that I can walk a few steps. Wife is looking after me well, but it's hard.

Keep trying & keep posting

Tike3 profile image
Tike3 in reply to Beatless

Hi Beatless Thanks for your reassuring reply

I am thinking of things that need to be done, I want to write a story for my boys they're 35 and 42 but my hands won't write just like my leg won't work I've got a frame, walking stick and now a commode! I tried to get to the loo and ended up falling now have a black eye!

It's good you have a supportive wife my husband is the same

I hope and pray that your walking improves are you on steroids I am and they do help .

.thinking of you

Pam

Beatless profile image
Beatless in reply to Tike3

Tike, Good to hear from you, perhaps your story could start with chapter 1 :- Despair, then chapter 2 _ hope, followed by chapter 3 _ impoverishment, let's leave it there.

On another matter, have you applied for an NHS bed for home? If not do sso, they are very good move in all directions, you get a good nights sleep.

I'm still waiting to see if I get any more movement on waling, non sao far just keep hoping.

Have applied for NHS Rehab treatment, so far no news.

Will phone them again this week.

Tike3 profile image
Tike3 in reply to Beatless

You mean my life story! I believe the beds are great my macmillan nurse comes tomorrow it might be worth asking her. Have you had it long. I'm still ok getting in and out of bed with my frame but it's not easy. but you never know in future.

It drives me mad not being able to walk, is yours from brain mets like mine. What's NHS Rehab

Thanks for keeping in touch

Pam

Beatless profile image
Beatless in reply to Tike3

Suggest you apply for a NHS bed, never know the future,.

What is NHS rehab I don't know but cancer nurse @ local hospital, Norwich has put me down for t, could be useful/ maybe not, I'll keep you updated.

Yes, mine iss from the brain mets.

Tike3 profile image
Tike3 in reply to Beatless

Thanks Beatless I'll mention NHS rehab to macmillan nurse tomorrow, and the bed. Isn't it a pain that these brain mets come back I had them zapped at Salford Royal and he said they'd be gone for good! How wrong!

You take care and thanks again

Pam

JanetteR57 profile image
JanetteR57 in reply to Tike3

why not record your story? that way they'll have your voice too? when a friend whose handwriting was poor after heart surgery said he'd like to write his memoirs, we gave him a small digital recorder - sadly a few months later his partner called to say he now had Alzheimer's and could no longer remember who I was.... it's always stuck with me that our good intentions about tomorrow, often don't happen.... hope you can find a way to get your story captured for them.... x

Tike3 profile image
Tike3 in reply to JanetteR57

That's a good idea Janette My hand writing has improved over 24 hours think it's the steroids kicking in.

I've wrote about half a dozen pages.

Alzheimers is a terrible disease I don't know which is worse cancer or Alzheimers.

Thanks for you advice and support Janette

Best wishes

Pam

Sharkey1234567 profile image
Sharkey1234567 in reply to Tike3

Is there anyone young and a whizz on a computer who lives near you who can come and type up some stories for you?

Major profile image
Major

Gosh, what awful news for you to take on board. Can you ask for a second opinion? Christie's is a regional cancer centre, perhaps someone tell else could review your case. Would a biopsy now show any new changes in the cancer that means targeted therapy could be tried. Feeling really gutted for you. Talk with your Cancer Nurse Specialist, see what they say about your situation. X

Tike3 profile image
Tike3 in reply to Major

Hi majorThanks for you help and support

Dr Summers is one of the top dogs so I wouldn't know who else to go to and I don't know much about a biopsy I had one when first diagnosed. That's a good idea to talk to my lung specialist nurse.

Anyway enough about me how are you.

Sending best wishes

Pam

Danni54 profile image
Danni54

I am SO sorry. If it's of any comfort, my brother in law was told 6 month's and he lived for 5 year's so, as other's have said, they cannot know for sure. You have been so brave and have helped so many of us that I so wish that I was with you and could give you a hug. I still believe that , to a degree, people choose their time. Everybody that you have helped here, including me, will send their love and support. Will message you.Much love and hugs,

Danni xxx

RoyCastleHelpline profile image
RoyCastleHelplinePartner

Hi Pam,

What a shock for you and understandably disappointing that you cannot have any further treatment. Oncologists have to take into account a number of things when considering treatment options, including the fitness of the individual. I see from previous posts that your mobility and balance have been causing you some issues. Sometimes the option that gives an individual the best quality of life is actually to have no active treatment.

It is also worth bearing in mind that all active anti-cancer treatments have potential side effects, and to tolerate them patients need to be a certain fitness. If given to someone who is not fit enough, there is a chance that having treatment could actually shorten a person's life, compared to them not having it. The quality of the time you have left is so important. As others have said, it is an estimate based on statistics. Some people will live for more than six months, others may live less. The key is to stay as well as you can. Ensure you have good symptom control and all the practical support you need - your oncologist, cancer nurse and your GP can all help with this.

Give yourself time to be upset about this news but then focus on the things you need to sort and what you want to do and don't be afraid to ask for help if you need it. This forum is a great source of support as you know, so do reach out.

Best wishes,

I am so sorry to hear this and as they are statistics you can go way past them. I assume you will still be monitored? There are alternative therapies, I’ve not tried them a friend of mine has for bowel cancer. It’s a company called care oncology it’s worth a look I guess? I’m not sure if it will be any good ok your situation though but thought I would mention. Take care xx

Tike3 profile image
Tike3 in reply to Cockailschemocancer

Thanks so much for your reply and reassurance, yes they are only statistics and everyone is different. I hope your friend will be ok and I will look at care oncology.

Are you doing ok, can I ask what cancer you have and are you having treatment..

Love and best wishes.

Pam

Cockailschemocancer profile image
Cockailschemocancer in reply to Tike3

Hi Pam - like you NSCLC and like you treatment stopped due to Ulcerated Colitis but I was very fortunate that the immunotherapy worked and although not cancer free, remain stable. My friend has bowel cancer but also swears that Care Oncology is keeping things at bay and one of her medication is dog worming tablets I kid you not! Everyone is different but if the NHS have followed protocol and there is no options then you might find these alternatives useful. I wish you all the best Pam. Kerrie xx

sassassas profile image
sassassas in reply to Cockailschemocancer

Hi Kerrie,That's really interesting. When my husband was first diagnosed, we looked into the Care Oncology clinic protocol and then discussed it with his oncologist. He was pretty open minded and would not have had an issue if we'd decided to go down that route, alongside the chemo + immuno he was on. He said he thought the science was probably quite good but was disappointed that the team behind it had probably decided to go for profit rather than properly assess results in a clinical trial.In the end, because my husband's treatment is working well, we didn't look into it any further.

Its really brilliant to hear about your friend doing so well. I keep having a look at their website to see if they have published any results for scientific scrutiny but they still haven't which is such a shame.

Be interested if you know anything more.

Sarah x

Cockailschemocancer profile image
Cockailschemocancer in reply to sassassas

Hi Sarah - unfortunately I don’t - I just wanted to share a potential alternative if the NHS route had run dry! Hope that’s what we have so it might or might not be an option xx

JanetteR57 profile image
JanetteR57

Sorry to read your news - but as others have said, they can never be sure on timelines - I've met and worked with several patients who were told just 'months' or six months or less but they survived much longer and lived their lives - so not only 'surviving'..... there should still be support for you via the hospital and community - even if you're not on active treatment... please ask your oncologist and nurse how this can be set up, even if mentally it's a shock, it's better to plan and have such support available. thinking of you.

Tike3 profile image
Tike3 in reply to JanetteR57

Thanks Janette

For your advice and support. It was a terrible shock, Dr Summers said I'm too weak for chemo. I feel like I've been written off.

No, nothing is written in stone and I will try my best to stay strong. The support I get is amazing, doctor rings and even calls to see me. Macmillan nurse Sally comes 4 times a week and district nurse

Maria my lung cancer nurse says treatment is not out of the question so I'm hoping to be offered something to give me a bit longer, steroids are helping a great deal.

Thank you Janette and sending my love

Pam

JanetteR57 profile image
JanetteR57 in reply to Tike3

so pleased to hear you're being supported - nothing worse than feeling abandoned.... glad Maria, your CNS is also so encouraging.... and Sally, your macmillan nurse. take care. thinking of you. x

Tike3 profile image
Tike3 in reply to JanetteR57

Thanks Janette your very kind

I'm struggling tonight with shoulder pain, normally gabapentin and pregabalin kick in, perhaps I took them a little later. I never know if the pain is the cancer or my osteoporosis. I'll mention it to my macmillan nurse Sally if it carries on.

I just want to say again how nice and caring you are.

Best wishes

Pam

x

sassassas profile image
sassassas

I'm so sorry to read you message Pam. I agree with all the other comments - no-one can give you a definite prognosis. I know you have a lot of respect for Dr Summers and it sounds like the rest of your team is amazing too. And i know you'll do everything you can to look forwards and make the most of every day.

Lots of love to you.Sarah x

Tike3 profile image
Tike3 in reply to sassassas

Thanks Sarah Your so kind and thoughtful

It was a big shock, but like you say I do have a lot of respect for her team. Hilary the lung specialist nurse rang me and said they are still looking into treatment, I said I felt like I'd been written off.

I have so much support from the community team too they've been amazing.

Anyway enough about me, how's your husband doing

Sending all my love

Pam

xx

sassassas profile image
sassassas in reply to Tike3

Hi Pam

I hope you found some comfort talking to Hilary, knowing they are still looking into treatment for you. I am thinking of you

My husband is still doing well, thank you for asking. He had some good scan results last week and we now have 12 weeks until the next one - we can relax over the summer! Our girls have just finished A' levels and GSCEs so we'll all be enjoying a holiday xx

Tike3 profile image
Tike3 in reply to sassassas

I'm so happy for you and your husband Sarah and his good scan results, now you can relax, and enjoy a holiday. Don't they grow up quick A levels and GCSEs!Love and best wishes and thank you for keeping in touch

Pam

xx

Ellejayb profile image
Ellejayb

Pam, you are a legend on this forum - so supportive to everyone. I’m pretty sure you’ll do the absolute best that can be done. Do let your family know how much you are valued and keep posting, please. X

Denzie profile image
Denzie

I’m gobsmacked for you at this news. Perhaps they can better manage your pain through hospice services. I’ve no idea how that works in the UK. At the end, my mom’s cancer spread to her spine and the nerves into her legs. Hospice could give her a stronger dose of morphine with an plus she could use when there was breakthrough pain. (That was 2006 though).

You’ve been a dear, regular contributor here and I hope you’ll update us from time to time. I’ve sent up a prayer that hospice strengthens you enough to accept treatment. I’ve seen it happen twice and I hope you become number three.

Tike3 profile image
Tike3 in reply to Denzie

Thank you so much Denzie your a very kind and thoughtful person I'm still in shock, when Dr Summer rang me I thought it was about my next chemo and then she just came out with it. Hilary the lung specialist nurse rang me and said they are still looking into treatment but I must admit I feel written off

I have a brilliant community service, physio, macmillan etc. I'm still at home because of my great supportive husband and I'm still quite independent apart from my dodgy leg

Pain relief is gabapentin, pregabalin and Morphine it's funny though I don't get pain from the cancer it's the osteoporosis Dr Summers says chemo has aggravated it!

Thank you Denzie for your kind words, and prayers.

Love Pam

Red58 profile image
Red58

Hi Pam sorry to hear that your right they can’t put exact time. You keep going don’t give up I’m thinking of you sending love ❤️

Tike3 profile image
Tike3 in reply to Red58

Thanks Red

That's very kind of you

My macmillan nurse says I'm doing very well and if it carries on she may get in touch with Christie's for an out patient appointment fingers crossed

Thanks for your support and hope you are doing ok.

Best wishes

Pam

Red58 profile image
Red58

Hi paM I’m in same boat no more treatment gave me few month I’m the same so much to do and scared of what’s to come in next weeks I’m scared of pain all kinds thoughts going through my head. Hope your kind of bearing up I’m trying send u my love ❤️

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