Knowing you have an incurable cancer

[topgun]

OK, so the lung people have diagnosed my enlarged lymph node in the chest and armpits as cancerous and the ebus has come back stating the mestasis are from a primary lung cancer ( Not that I knew anything about that! ). Now waiting to see an Oncologist. My problem is not the cancer, but how do I shut it out of my mind when I go to bed - I just don't seem to be able to relax enough to get to sleep? What's even worse is waking up early in the morning twixt 4 and 5 a.m. and then not being able to get back to sleep.

[Hidden]

Hi topgun, we all know the what you are going through at the moment, it is an horrendous time for you just now. You will feel angry,scared and confused at various times. I assume your treatment is being carried out in Greece and I don't know if there is a similar website there for you to get information specific to your region. You haven't said where the primary cancer is and if the chemo is to reduce the tumour to see if surgery is viable. Please try not to stress yourself, I know it is not easy but it is a waste of energy. Try to eat healthily and exercise as much as you can, the fitter you are then the more able you are to cope with any treatments.

Good Luck

Rab

[topgun]

Rab,

No. I'm back in the UK. As yet the UK team don't know where the primary cancer is. In fact the biopsy result came as a complete surprise as they thought it was a secondary cancer from either my testicular cancer ( Not a chance! - clean for 8 years), or my Prostate Cancer ( PSA readings have been negligable over the past 3.5 years, so very unlikely) . In fact the day they confirmed the ebus findings as cancerous, the lung doc told me there was nothing wrong with my lungs. It was only when the final tests were done on the cells did they decide the primary cause was Lung cancer.

Anyway, I have my appointment with the Oncologist tomorrow - I'm expecting further scans to be carried out before they can make a decision on treatment.

Just as an aside , We drove home from Crete taking time out to visit Ravenna & Vienna and I was walking at least 5-6 miles a day staring at and looking round ye olde buildings and was never really stressed with breathing. It then took a week or so before I got an appointment with a lung specialist ( In the meantime I'd been referred to our local Ambulatory care centre who didthe 1st UK scan and Xray -it was then they decided to go down the lung cancer route).

From the day they did a breath test on me, I seemed to go downhill rapidly, by the time I had the EBUS, I was completely kernackered and even going downsatirs for a cuppa or upstairs to the loo, I was beathing as though It had gone out fashion -Not impressed!

David

[topgun in reply to topgun]

The visit to the Oncologist today went well. Definitely lung cancer ( adenocarcinoma - not sure what stage - we forgot to ask!) a small 2.5 cm tumour at the base of the left lung. that went on walkabouts. Still waiting for Birmingham to send back to see what my EFGR status is. Oncologist has started procedure for chemo treatment as he seems to feel my EFGR will be -ve. However if it's +ve we'll be going straight onto the Iressa (tablets ) path. I have to say the Lung team are now firing on all cylinders - my second scan in August has been referred for review as it is felt that it was not properly examined. Chemo ( cycle of 4 ) will start on 5th March - whoopeee!

Too early for Oncologist to give prognosis of life expectancy - just have to see how good the chemo treatment is.

[sheeni61 in reply to topgun]

EGood luck with chemo, I too am receiving chemo as cancDr ad returned stay positive

[Genie123 in reply to topgun]

Hi good luck with the iressa when yu start taking it I am on this and been taking for 14 months now and still here to tell the tale, and my cancer has shrunk by half, so stay positive .

[susanroe]

Hi Topgun,

Sorry to hear that you are having trouble sleeping and it's easy to understand why.

Just wanted to say maybe watch a film in bed before you go to sleep. That's what I do. I usually fall asleep well before film finishes and my mind does not go in to overdrive thinking, something relaxing though not an action film. Hope it helps a bit.

Very best wishes to you

Sue

[Rutheg in reply to susanroe]

Hi Topgun, I think we all understand how you are feeling at the moment, too many thoughts and not enough answers! I find that reading helps me to fall asleep and if I wake at 3 in the morning with all the thoughts going round, I read some more until I drop off again. Hope this helps. G

[jujuju]

Hi and sorry you are going through this.I found things got bad through all the tests and ended up coughing even more.I had surgery and was loads better.As it happened it is now in the soft tissue where my lung was and is incurable.I have had chemo and now on Tarceva and ok.I still walk and work.Its a massive shift when you find something like that out and it does occupy your mind.What happened to me is that I got used to it.Everything that's happened has seemed a huge hill to climb and I have thought I cant do it,but I have so far and life goes on.Sleeping is not easy for me but I have got used to that too.I don't lie awake worrying mostly...only sometimes.The rest of the time I lie awake thinking and planning or sometimes I read.Hopefully any treatment they give you will help with your breathing.Best wishes.Julie

[topgun]

To everybody who've replied, many thanks for taking the time to do so.

I start Chemo on 5th March, so some of the worry has been removed. I've got plenty of books to read, but that makes me tired, but as soon as the lights go out, the brain goes into overdrive. Hopefully this will reduce as I come to terms with it.

Cheers

David

[Madalyn10]

Hi top gun, my mum had adenocarinoma stage 4 her tests came back negative from Birmingham and so required the conventional chemo . After 4 cycles of chemo the tumours had shrunk and received her symptoms she is now on 3 weekly maintenance chemo and she is well with little side effects.

I wish you luck with your treatment x