OK deep breath - calm down!

Have you found the pages on Cancer research on these cancers?

www.cancerresearchuk.org/.../tonsil-cancer

There's no doubt that you've a serious condition and medium to long term it's life threatening but you seem to be reading "More often than not" as a racing certainty.

These sort of estimates can be highly variable and some cancers have much more reliable statistics than others.

Looking at the outlook and statistics here:

www.cancerresearchuk.org/.../statistics-and-outlook-for-mouth-cancers

More often than not in the whole population looks like a 40% 5 year survival ( which is about the typical longest that you seem to get stats for)

So yes, it's serious, yes it's life threatening but there are a lot of people on here who would kill for those sorts of odds.

Also those statistics are skewed by the a number of people who get late diagnosis and succumb very quickly.

A lot is going to depend on how you respond to treatment so it's really too early to say what your outlook is.

You may find it hasn't spread to your lungs, you respond well to radiation and chemo and it shrinks ant they can cut it out or you may be less lucky you're just going to have to wait and see.

I know it's incredibly frightening to be in this game of russian roulette but that's where you are and there are a few things you can do to give your odds a little tweak. 

These treatments will take it out of you and the fitter and healthier you can be for them the better you'll tolerate it so a bit of healthy eating and exercise may help.

Best of luck - you can beat this I'm sure

I live in USA and was from Coventry UK -  been here for 16 years;

I get pet scan Wednesday to see if its gone to my lungs - port being fitted monday ready for chemo and I signed up for a new trial but its roulette whether I get the trial;

In 2013 I got tonsil cancer they removed tonsils and did rad and chemo then a lump appeared in my neck below jaw around July last year 2015 and then I had surgery and then in January I noticed another stinging lump just below where the other one used to be and it is cancer too and now they say that usually when it return twice reoccurance that it more than definately goes to lungs and thats the killer - but I dont know yet if it has - if it has all i am trying to gather is if people have had chemo and rad when its in the lungs and neck and have been cured or survived long time? - telling me 6-9 months if its gone to my lungs is a nightmare to think about

I can't help you too much with the lung cancer I don't have too much experience with that - however I do have a neighbour who had a very similar cancer to yours that had not spread and that responded to chemo and radiation and was surgically removed and Chris has been as right as rain since - that was 5 or 6 years ago I guess.

I'd also caution about  trials if you still have conventional treatment options. Towards the end my wife and I went to the Royal Marsden Hospital which is one of the worlds most important cancer hospitals to talk about trials. She'd run out of treatment options then really - they were very honest and said only about 1 in 10 people got any significant benefit out of being on trials. Certainly her brother who died of bladde cancer 6 weeks before her and had been on immunotherapy trials found that it made him pretty unwell.

Remember too that some trials have placebo drugs that 1 in 2 or 1 in 3 get so if you're accepted onto one of those you're not even guaranteed to get the drug.

So my advice would be not to get involved in trials until you have to.

There are a lot of people on here who have been cheating the numbers - why don't you post on the living with cancer section and ask who is dealing with metastatic cancer in the lungs

My bowl cancer moved to both my lungs about 6 years ago has spread other places but the chemo has kept it stable in my lungs if that helps any

Hi Kevin

I'm in a similar situation to you. I've had cancer in my neck, jaw and salivary glands. I've had the surgery and removal of lymphs in neck to prevent it spreading followed by radiotherapy. However it has managed to get to my lungs. I have one node in my left lung, fortunately it has not grown any in the last 12 months. However let me give you some hope, even though it has spread, I am still going strong 16 months on. I've had further surgery just a week ago and dont intend giving up any time soon. Don't take any notice of the statistics or you may give up. I was told in my particular case 20% chance of living two years. But I'm going to be one of those 20% and enjoy every day to the full. There are many on this forum who are years past the survival times given them. Also as you must know by now cross one bridge at a time, wait for the results for the PET scan before you worry, it may well be clear, changing how you deal with the future. Wishing you all the best. Kim

I have your wife's brother to thank then ! Because of people like him I have had the Immunotherapy (BCG) for my bladder cancer and although extremely traumatic and symptomatic I am currently cancer free! :) I have also been part of a trial to test an anti-inflamatory drug and it's affectiveness as an additional bladder cancer treatment and you are right, I didn't know if I was actually getting the drug...(I had to stop taking it due to side effects also)...but I am happy to be part of a trial that will help future cancer sufferers. I understand not wanting to quit other mainstream treatment options but often they run along side anyway!

".but I am happy to be part of a trial that will help future cancer sufferers"

I have huge respect for that attitude - trials can have side effects and can be a real longshot but without people willing to accept the risks getting new treatments approved would be slower and more dangerous.

Really glad you got something out of it though, I hope you get more

I maybe going on the new Stage 3 part of the trial for Pembrolizumab

Pembrolizumab is classified as a monoclonal antibody. Monoclonal antibodies are a relatively new type of “targeted” cancer therapy.

Antibodies are an integral part of the body’s immune system. Normally, the body creates antibodies in response to an antigen (such as a protein in a germ) that has entered the body. The antibodies attach to the antigen in order to mark it for destruction by the immune system.

To make anti-cancer monoclonal antibodies in the laboratory, scientists analyze specific antigens on the surface of cancer cells (the targets). Then, using animal and human proteins, they create a specific antibody that will attach to the target antigen on the cancer cells. When given to the patient, these monoclonal antibodies will attach to matching antigens like a key fits a lock.

Since monoclonal antibodies target only specific cells, they may cause less toxicity to healthy cells. Monoclonal antibody therapy is usually only given for cancers in which antigens (and the respective antibodies) have been identified already.

Pembrolizumab is a highly selective humanized monoclonal IgG4 antibody directed against the PD-1 receptor on the cell surface. The drug blocks the PD-1 receptor, preventing binding and activation of PD-L1 and PD-L2. This mechanism causes the activation of T-cell mediated immune responses against tumor cells.

Note: We strongly encourage you to talk with your health care professional about your specific medical condition and treatments. The information contained in this website is meant to be helpful and educational, but is not a substitute for medical advice.

So this is the class of trial where a drug as already approved for some cancers and they want to get it approved fo others in this case its approved in the US for non-small cell lung cancer and Melanoma.

www.cancer.gov/.../pembrolizumab

It seems to have lengthened peoples lives in those studies and  seems to have been tolerated well which is good news for you if you're on this trial because my brother in law was on one immunotherapy trial like this and had bad side effects.

Sounds as if it may be random allocation of people with this drug compared to standard treatment www.cancerresearchuk.org/.../phases-of-clinical-trials

How is the tril designed do you know? is it a 50:50 split between this drug and another?

Good luck in any case I hope you get it and do well on it

Good luck for the PET scan!