Dad diagnosed with Lung Cancer

[Hopefull77]

Hi All,

My dad was diagnosed with lung cancer back in March following a chest infection. he had an xray too which detected fluid around the lungs. This was then drained and they found cancerous cells in the liquid. He had a ct scan but no tumor has ever been found. They have said that he has CUP (cancer of unknown primary) as they are unable to find a tumor, just the cells in the fluid. They thinks its adenocarcinoma but unable to tell from numerous tests. He is now on chemo, carboplatin and premextred every 3 weeks for a 6 time course. he seems to be doing well on the chemo.

Has anyone else suffered with CUP and cancerous cells in the fluid?

Still seems surreal especially given he's never smoked and was so fit and active

[Hidden]

Hi

its not unusual to have CUP, I have come across a couple of people who have had the same. It's even less unusual to get lung cancer when you have never smoked, arounf 20% of lung cancer cases are non /never smokers, i'm one of them.

have they staged him? Im assuming they have said stage 4 due to the pleural effusion (fluid around the lung) I had one too although I did have an 11 cm primary tumour too. I am also assuming they have done a full body CT scan?

Even though there is no primary tumour to be seen the treatment will be pretty much the same.

Don't get reading too much on the internet about stats and survival, the stats are based on old treatment regimens from around 5 years ago and progress had been made since then. I am now 16 months from diagnosis and am doing very well. One thing the survivors have in common is staying positive and keeping as active as they can.

Wishing you and your dad all the very best, stay in touch.

Lyn x

[Hopefull77 in reply to Hidden]

Thanks for replying Lyn. So sorry to hear your news but i am so pleased that you are doing well - i see you're travelling the states at the moment, sounds an amazing trip, enjoy

They haven't staged him or stated any survival period, just said that the short term looks promising. I've read far too much on the internet about stats and survival rates - scared myself so have stopped reading and just enjoying the time we have and focused on supporting him through the chemo. He is very strong and feeling very positive, his first grandchild (my son) was born a week before he started to feel unwell back in february so gives us all something to fight for.

I'm not sure if it was a full body scan - i will check with him. He's had a follow up xray and it all looked ok, small amount of fluid but that might of been where they couldn't drain it all. He's having another before his next chemo at the beginning of august.

Thanks again and have an amazing trip

Take care

x

[Hidden]

Hi, thank you, we are having an amazing time. We feet are in great need of attention, we've done so uch walking during the last 2 weeks i've got blisters on my blisters! So glad we have a memory foam mattress on our bed in hotel! Had to walk home this eveing in y husbands flip flops as thet were more comfy than mine, (he wlaked home bare foot) we;ve walked the whole length of 5the avenue (plus 4th and third) and around central park. That was my shopping day :). God only knows how i'm going to make sight seeing tomorrow lol (lots of plasters I think).

I'm so gald your dad is positive, it makes a world of difference he has so much to live for. Like i said don't look at any more stats, just look on all the positive stories, there are lots of them. The more I learn now the more positive I feel. last year I could only see the month ahead now I'm making plans well into next year.

Will be keeping you in my thoughts, take care

Lyn x

[LorraineD Partner Roy Castle]

Hello

I am Lorraine and work at the Roy Castle Lung Cancer Foundation. This must be a strange time for you with a new baby and your dad's illness.

Please do make use of the Foundation's website, or order any of our publications. You might also be interested in the information on CUP on MacMillan's site and also cupfoundjo.org/ which is an organisation specifically to support people with an unknown primary. Lyn's note of caution on web information is valid. Look for reliable and relevant sources, like ours which meets the NHS Information Standard. The medical team will also be a good guide to information that is specific to your dad's situation and treatment.

I hope you and your family are getting all the support and information they need,

best

Lorraine

[Hopefull77]

Thanks Lorraine and Lyn for your support and wishes.

i hope you're feet are holding up today for you Lyn, if not i'm sure your hubby will willingly give you his shoes again - bless him

Lorraine, i checked roy castle website back in March/April when he was first diagnosed. I gave dad the book around breathlessness and he has found it invaluable. He said it was something that he felt should have been given to him by the doctors when he was diagnosed. it seems that you have to go and find the information for yourself and you have to ask the questions and then they will tell you the situation. They don't seem to volunteer information too much but i guess that's because its different for everyone.

He hasn't had a full scan, just a chest CT. They are seeing the oncologist specialist next week before his 4th cycle where they are going to ask about a full CT and PET. I also saw your comment on another question Lyn about the EGFR which i'm not sure he's had or prehaps he doens't know the results.

The specialist and his specialist nurse are all very good, i think we are in a good area for cancer treatment from what i've heard so we're lucky in that sense. i'll have a look at that website - thanks again.

It's just all so surreal and unfair what with his first grandchild and all that but then never ideal for anyone.

Thanks again

x