Those who don't want to know, shouldn't read this thread, I guess...

to summarise, I was diagnose with tonsil cancer staged at pT4 N2 M0, it had spread to the base and front of the tongue. I had surgery, grafting skin from my wrist to replace the removed sections of the tongue; and a neck disectomy to remove lymph nodes. I had 32 radiotherapy session, and chemotheraphy with - forgotten its name - platinum based; aimed to improve the effectiveness of the radiotherapy, not a treatment directly for the cancer.

I have been diagnosed as having HPV type 16, which is strongly linked to causing cancers of this type. But I was also a long-term smoker (not heavy), and a drinker (not excessive but regular).

My surgeon is a genius, and my radiotherapist has been very very clear that the treatment was aiming for a cure; i.e. not just a prolongation of my life.

Nevertheless, I see figures flying around about survival rates that make me... frown; tremble; etc.. I believe some of these data are quite old, and that new knowledge about HPV related cancers versus other types, and improvements in the treatments (especially the radiotherapy, becoming more minute and exact, instead of just blasting everything) show an improved prognosis, for a larger % of patients.

Nevertheless, I was a T4 N2, which is pretty advanced. I had a scan in November; after my latest check up, they have just arranged for me to have another one, including thoracic scan. Although no-one has said anything negative, on the contrary - well, I want to know what my chances are.

If I am likely only to live another 5 years, I'm damn well going to go out there and start enjoying them!

I know, I know, that this is going to be 'every case is different' etc. - but I'd like an idea.

Thank you.

Well, I got no replies. I'm still here, 2 years on. That's the good bit. The bad bit is I have had a nodule identified on my lung, which has grown, so we're back into 'active' mode; I'm waiting to hear what they want to do about it, but they are going to do something.

So: I still want to know what my survival rate chances are. How long do I got! As I said before: if the chances are only 5 years, I'm damned if I want to hang around doing a boring job just waiting for an under-funded retirement!

Where can I find the latest figures, at least? everything seems to be based on stuff that is years old.

Thanks

Hello Moptop

I'm sorry about the nodule you must be very worried. I looked through the search facility and there's quite alot of stuff about statistics, but there was one particular post I've read about stats which I couldn't find. I'll keep looking for it and if I find it I'll post it here for you. I too am HPV and it's almost a year since I started my treatment. I know what you mean about wanting to know....
Good luck and keep us posted.
Vicky x

Sorry to hear about the nodule too but glad it is being looked at! Stats are a funny thing - they can be very informative but keep in mind if you have one foot in hot water and one foot in cold water, on the average you are comfortable. Also, it is funny when I hear things like "it affects 10% of of the population" well, if you are part of that 10% then it is 100% to you. I have seen past post with scary stuff on reports lead to bad news and others be able to simply cleared up. My father had a false positive at one point and until many further tests were done we were all in a panick although no one wanted to say it. Bottom line is no matter what DO LIVE LIFE!! This does not mean go off the deep end and be reckless but be bold and tell those you love that you do and if you have never danced and wanted to then, by golly, take some lessons!! I could be hit by a bus tomorrow - there are stats for that LIVE LIFE and let us know how you get on!

Hi Moptop so sorry to hear of your nodule. You might like to look at Maurice's story - he had a nodule and then had it removed and was doing fine when he last posted.

Hope all goes well for you.

Cathy

Thanks, guys, for your support and positive feedback. Wish me luck, I go in on Monday for my op on Tuesday. Saw the surgeon and anaesthetist for pre-op explanations on Thursday; surgeon explained it to me so clearly, I was really grateful. So, the nodule is in the bottom lobe of the right lung, just on the separation between that lobe and the middle one. They will initially remove the nodule by keyhole surgery, and analyse it then, and decide what to do based on that. He said there are 3 options (3 and a half really).
1) it's benign, they can patch me up and that's it - but he said 'we don't believe that too much'
2) it's a metastasis from the oral cancer. In that case, they scrub the lymph nodes all the way up the lungs and bronches, take the lot out, but do not remove the lung-lobe. Further treatment (radiotherapy etc.) would then be decided by the ORL team
3) it's a new primary - most likely scenario. In that case, they remove the lower lobe, and some local lymph nodes. That would probably require opening the thoracic cage, so post-surgery would be a bit more painful. I'll have an epidural type thing anyway.
3 and a half) the tonsil/tongue cancer was (I do not have the right term) but basically external - epidermal (skin). There are 2 types you can get in the long (non small-cell), epidermal and another type; it is possible, if it is an epidermal one, that they won't be able to tell if it is a new primary epidermal, or a metastased epidermal. In that case, they'd remove the lobe and scrub all they lymphs and decide on subsequent treatment after.

HelpingDad - yes, I have been feeling trapped by illness, not living (I used to live a lot!) and I need to make sure I damn well have that wonderful buzz that life can bring! Oh - it is very hard to decide, you know - if I am positive and decide I am going to survive (more than 5 years, more than 10 years) - then I need to carry on being sensible, to try to have somewhere to live and some income in my old age!

But if I decide, ok, cancer just likes me too much, I'm not going to make old bones, to hell with it - live live live - I would definitely want to give up work, and spend my time seeing my friends, creating, doing music, travelling... enjoying the beauty of it all, and spend my savings.

Of course, I should do all that as well, survive long term or not!

Hi Moptop
Well, first of all, GOOD LUCK!!!
Its a funny thing, this survival thing. Some people clearly have a very strong sense of survival, but I don't think I've got it. The strange thing is I am perceived as a 'fighter' by my family and I hear my sons saying things like 'oh that cancer doesn't know what it's taken on in mum' and stuff like that. Actually, inside I don't feel like fighting at all and seem to want to know exactly what the choices are, like you. I want to know is it coming back, would I have more treatment etc etc. The truth is none of us know and we can only make decisions based on the immediate choices. When my dad was dying he pointed out to me that we were all going to die, just he was going to die sooner, and since my cancer I really get that philosophy. Just know that the options will be presented to you as they appear, and you will make the right choices. As for living life to the full, I suppose that means different things to different people. I like you am afraid to spend my savings because I don't know how long it will need to last! Funny old world isn't it?
Once again, GOOD LUCK for Tuesday, and let us know as soon as you're able what's happening.
Love and hugs
Vicky

Hope all is going well for you Mop Top and that you make a speedy recovery from the surgery. Also thanks for sharing the details of your surgeon's description of options. They sound good; you seem to have a great team and the sharing was very educational.

Best
Cathy

Hi all - I'm still here, then! My update really shouldn't be in this thread - it's gone from a general question about survival rates to a personal 'me me me' one... I expect it always was, really. Well, it is as it is.

My op had to be post-poned because I had a cold (not really what you want for lung surgery); so had it on Friday 13th, which spooked me a bit too!

Anyway op went fine - on the plus side, I still have all my lungs. Have 'breathing gymnastics' with a rather eccentric physiotherapist every weekday.

On the minus side, that means they look at it as a metastasis... probably. Everyone has been very not-forthcoming about it, so far. The actions taken do not correspond to any of the options given me pre-op, haha - they removed the nodule (treated as metastasis) but only the lymph nodes local to the growth (treated as primary). I guess they really prefer not to remove more than seems necessary, so that suits me. I was told post-op that it was cancerous, of the same type as the prior cancer, so I would be referred back to ENT; but that the nodule/removed lymph nodes had been sent for further analysis which would take about a week.

The confusing bit is that I have still not had the results on that, I chased up, and latest is I have an appointement with my original surgeon on 8th Feb.

The WAITING!!! it's the worst. But I'm really pleased to be back with my original surgeon, I trust him and feel he takes me seriously.

However, having dealt with him in the past, since he has not called me to give me reassuring news, I am expecting this to be a precursor to further treatment - preventative, curative, call it what you will. But to quote the National Cancer Institute's delightully unsupportive page (I searched on treatment for epidermoid lung cancer), "For most patients with non-small cell lung cancer, current treatments do not cure the cancer". That just really made me feel better, thanks. And no mention of what current treatments are. I must find a more helpful site!

So... Vickyh, strangely, I feel very much like you. Everyone sees me as really strong, a real fighter, won't let a little thing like cancer get me down ha ha ha, and frankly for the first round, I lived up to it (at least, on the outside). But in reality, it is the lack of certainty that is hardest to handle, not the concept of dying. I had already come to the same conclusion as your dad, and I think it is an excellent attitude. Death is part of life, I will probably die relatively young.

Right now, I do not believe I am going to be a post-5-year survivor. And I'm really not that upset about it. I don't believe that makes me negative; I believe it makes me a realist. If I CAN survive, in reasonable conditions, I shall. I actually quite like life. But I can also accept my own death. I'm upset for those around me, though. In that, I am lucky to have no children; although I hate to think what my death would do to my parents.

Mostly, I don't want to be ill for ages, gradually going down hill, getting weaker etc., and above all being tied down by it. It's the loss of independence and control over my own life that I find hardest. I'd really rather go to Switzerland and have someone put me down. After I've had a few years having as much fun as I can manage!

I'll let you know what my hero (ENT surgeon) says.

Good to hear from you! Yes it is all about YOU - as it should be in this post. Funny, as I was reading your post it reminded me of a story I just saw a few days ago on the CBS evening news - a man in Oregon who was an angel is in his small town for the past 50ish years, doing work for neighbors for free just cause he was a nice guy, now his neighbors are helping him. They were stacking his firewood for the winter. Helping around the yard. Signing with personal notes on a box they had just made for him - sadly a pine box. he has just been diagnosed with ALS - it has already affected his speech but when he spoke I understood him right away. My mother has MS and I am used to deciphering slurred speach of those who have MS or ALS or had a stoke. Shocked, the reporter had to repeat what he thought he just heard, "Did you just say you are glad you are dying slowly?!?!" (he has less than a year) And the old man smiled and said YES - basically afterall if he had been hit by a bus he would not have had the chance to see all the love from his neighbors........

So when you first started your post you had asked about stats and I referred to the fact that I could be hit by a bus - none of us knows...

I am so glad you are seeing the doctor you trust. I agree with the fact you sound like a realist and KUDOS to you for that. you should love life but glad to hear you can accept your own death as all that are living will someday do so. Let us know how it goes with your surgeon - wish you did not have to wait but glad you can count on him. I will think good thoughts for you and your hero!!

Hi, HelpingDad. Thanks for your reply, and supportive answer. I appreciate the slow-dying: saying-goodbye bit. Whatever happens, there are always positives and negatives. Hit by a bus: well, at least she died in her prime, etc. Actually there are some conditions where I would find it hard to think of the positives, but mine is not one of them.

I've perked up again since I posted that - I had a bad few days, one does, when taking in something new like that. But it's just the likelihood, it's not a certainty: I could have a round of chemo and nothing comes back.

I actually find the known-unknown hardest to handle. We all know we could die at any moment, hit by a bus, of course: but we don't actually expect/believe it will happen to us, and we have had all our lives to adjust our thought patterns and risk-management behaviour to this knowledge. This is a new known-unknown, with the likelihood of bringing death sooner, and certainly bringing the certainty of ones own death into focus; but still now knowing when, how long. I think that's the hardest part. I can't plan anything.

So, I have to take some time to get used to that.