Hi all. I'm one of those who only appears when I'm worried, I'm sorry about that. I do hope Hagg and all others I spoke with before are doing well.

Briefly - T4 tonsil cancer diagnosed 2009, spread to tongue, removed, neck dissection, tongue flap. Primary cancer seems fine. Small nodules in right lung diagnosed in 2012, snippet of lung removed. More the following year, they hadn't managed to get it all, so had about half the lung removed. They didn't scrub the lymph nodes, feeling it was better to leave them as a defence layer. That was 18 months ago.

My follow up scan now shows an enlarged lymph node at about the same level as the nodules in the lung were, so in the lymphs around the oesophagus. I have an exploratory op on the 8th Jan - amazing what they can do, send a mini scanner down to scan around from within the oesophagus. They'll do a biopsy at the same time.

Initial suggestion is radiotherapy and 'It's treatable'.

I'm not feeling at all reassured, I'm sure you appreciate that. I am afraid that suggesting only radiotherapy implies that it is not actually treatable, merely controllable - i.e. it can be reduced, but there is no longer a real thought of cure (which until now there has been). I would like to know more about it, about the likelihood of successful treatment, likelihood of chemotherapy or other treatments, I don't know. I'd like to know - well, anything, please?

Thank you so much
Original Post
Hi moptop,

I never got as far as having surgery on anything, even though the primary at back of tongue was T4. I had 33 sessions of radiotherapy and the chemo sessions were supposed to be six, but after the first session I was asked if there was anything wrong with my ears. I said that I was experiencing tinnitus, so they changed the treatment and I only had three sessions in all - though the second type did make me very sick. I am only two years out of treatment and all is supposedly well, but the whole thing is certainly not without its after effects - sore, stiff throat, very little saliva, dry, sore mouth - so it goes on. Then I was very ill back in the summer with pneumonia, pleurisy and empyaema. My Respiratory Consultant was 99% certain that this was a tumour (I wasn't told this until well after the event) but, luckily, the boys up in ICU didn't believe him and whacked in a chest drain - not nice at all, but the next stage would have been sepsis. Great.

I certainly wouldn't say this wasn't 'treatable' and one hopes they know what they are doing with radiotherapy only, but pleased to hear they are doing something in the way of biopsy pretty quickly.

Please keep in touch and let us know how things are working out.

Life's a bitch - then it has puppies
Hi Petronel, thanks for the response. The pleurisy etc. sounds scarey! and lung drains are horrible, aren't they.

I've had an endoscopy and biopsy since then, and have been told my condition is now deisgnated chronic, i.e. treatable not curable. Treatment is chemo followed by Erbitux for as long as I may last. I don't have details of the proposed chemo treatment - I intend to have a talk with the consultant this week, he told me all this in one go and it doesn't all go in, you know, when you're coping with being told you might last 10 years if you're lucky. But still, they can give me that and have already given me 5 years, so it's not so bad, is it. And who knows - further treatments may come on the market later. Trying to be positive but failing massively at the moment. Oh well.
Hi Moptop,so sorry from having tonsil cancer you have had all these added problems with your lungs.its been one thing after another for you,all the best for the treatment,hang on to the thought that every day new treatments are being found and many people with cancer have lived years longer than expected,try to live a day at a time,that's something we should all do what ever our circumstances becouse tomorrow is unknown for all of us.take care xx
Oh dear, oh dear Moptop. No wonder 'positivity' has gone out of the window - you must be feeling absolutely dreadful. When you see the Consultant is there any chance that someone can go with you to write down and help absorb all the information that is being bombarded at you? When I met 'the team' I was so grateful that my son was with me as what everyone was saying came at me so fast and in such great abundance that most of it went straight over my head. Tom wrote a lot down and also managed to remember a great deal, some of which he is still telling me - nearly three years later...

What, exactly, is Erbitux? Is it an oral type medication? You say 'treatable' rather than 'curable'. When does a cure become treatment? Is a cure ever really achievable? Personally I am slightly sceptical of the word 'cure'. There are plenty of people who are told they have been 'cured' of something, but haven't really. All this actually gives hope to 'treatable'. I remember this so well when I was looking for a new Chiropractor. I saw a lot of people who said they could 'cure' my back at two sessions a week for as long as it might take. Then I found the one I am still using (all the way from 1979) and he has never used the word 'cure'. He said he thought he could 'help'. I have told him many times since that if he had once said that he could 'cure' me he would never have seen me again. As it is we are firm family friends - I was at his wife's 80th birthday last week, not that I could eat or drink anything.

You need to make a bucket list (why is it called a 'bucket' list?). Think of all the things you want to achieve - that will keep you going, along with determination. PLEASE feel free to use the metaphorical shoulder whenever you need it.

Thinking of you -

Life's a bitch -then it has puppies.

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