Dear God No Part 2

DanielMMS said:
So, thought I would start a new thread to avoid any confusion with my old problems (here). On a positive note, apparently I have nothing to worry about as regards my prostate although I am still awaiting some tests in relation to a problem I reckon is related but seems to be baffling the urologist – next up is a flow test which was scheduled for April but other issues might affect the timing of that.

I’m just going to detail events to date as even trying to go into thoughts, feelings, whatever, at this point is pretty raw!

I saw the urologist in mid-January and, for reasons I did not understand and he did not explain, he made an urgent referral to the ENT department. I saw the ENT consultant (who I know pretty well so thankfully has been completely frank with me since the beginning) the next day and was subjected to a nasoendoscopy amongst other things.

I could tell pretty much immediately that something was wrong and, sure enough, it was explained that I appeared to have a malignancy / tumour of the left base of my tongue probably with bilateral nodes. At that point the type and extent was not clear so I was booked in for a ridiculous number of procedures which took place just over a month ago. If I remember rightly I had a laryngoscopy, pharyngoscopy, oesophagoscopy, CT scan of my head and neck and an MRI of my tongue. Not bad for a day’s work.

The upshot of these was that I have, and I quote, an “enormous” oropharyngeal tumour covering the whole of the left tongue base, my left tonsil, my left epiglottis and something else but can’t quite recall. Nodes are pretty widespread but are relatively small.

The consultant was completely blunt and told me that, whilst I may seem asymptomatic and not noticeably “unwell”, the disease is too extensive for surgery to be feasible. In fact the only option is concurrent chemoradiotherapy and even then, as he put it, “I doubt that even with that you have much chance of surviving" - a phrase that was burnt into my memory and replays itself at random times! The biopsy results came back confirming T4 N2b invasive poorly differentiated focally keratinising and basaloid squamous cell carcinoma of the hypopharynx. The T4 N2b bit is not good news! The rest of the technical jargon still hurts my head but is a delight for those with Google-foo.

A few days after that, I made an appointment with a private consultant in the UK mostly just to see if there might be any new developments that were not available publicly and might improve my chances of survival. Unfortunately, he confirmed the treatment suggested – and the prognosis – although did provide a small glimmer of hope. Since I do not smoke and drink relatively little, it is likely that I have an HPV P16 virus related tumour (I almost choked at that suggestion) which provides some optimism of responding better than usual! Oral sex has a lot to answer for. At this point, as I was in London, I went a bit mad at the shops.

Then two weeks ago, I had a consultation with the clinical oncology consultant in Southampton (radiotherapy is not available over here so has to be referred there) who explained that I would have a couple of cycles of chemotherapy over here as an outpatient, then 6 weeks of radiotherapy with concurrent chemotherapy at Southampton and then “we will see”. He went to great pains to explain that the only option (other than the palliative route) is to go all out for a permanent cure but this necessitates an extremely aggressive form of what is a toxic treatment. As a result, the treatment itself could actually kill me! The chances of success are, at best, slim and I need to make some decisions about the way forward. At the moment I am well and asymptomatic. Going for aggressive treatment will be time consuming, limit my options as to how to spend what could be my last days and is likely to bring forward me actually being unwell to the extent of stopping me function. Alternatively, I could go down the palliative and just enjoy myself as much as I can – but that seems so final and defeatist!

Current situation is that I am hedging my bets to provide a little more time to reach a proper decision. I have gone ahead with chemotherapy – next session this morning – and, if I choose curative treatment, I am due across for chemoradiotherapy at the beginning of April.
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I would say a small chance is better than nothing. Give the Chemo a go. The worst it can do is hasten the worst case scenario.

My thoughts and prayers go out to you though, I'm sure I can speak for others when I say if there is anything we can do, just let us know.

Regards
 
Damn, that's terrible news :(

Just to put this out there, as a balance to the "a small chance is still a chance" sentiment:
My father underwent a very aggressive chemo course (oncologist said it was a notch below the kitchen sink option) for testicular cancer a couple of years ago. Fortunately for him, his cancer was one that responds well to chemo so, despite it being rather advanced (spread to lungs, and liver) he still had a better than 50% survival chance - and he did recover.
However, the chemo absolutely ruined him following the second and then third bouts of treatment. He had 3 in total, and I don't doubt that a fourth (as had been penciled in) would have killed him.
It made me reassess the "if there's a small chance" idea, and I realised that, for me, you need to have some expectation that the treatment could work because it's effects are so severe (for a strong course of chemo) that it will ruin your final days if cure really is a long-shot.
If cure was unlikely, I would seriously weigh up how I wanted to spend my remaining time.

Wish you all the best in whatever option you take.
 
what a tough read, and what a decision!

to my mind the only choice is fight.... sure you may enjoy the short term with palliative care but that's not really an option. i guess you probably already know this...

fight on and fight hard, make sure you believe you can win. the mind and body can work miracles.

best of luck to you. i hope you get better!
 
Is there any chance of getting referred to the Royal Marsden? They not only have a hospital in London but also in Sutton which may be reachable for you. It's where I was treated and continue to get reviewed and the care there is fantastic.
 
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DanielMMS said:
So, thought I would start a new thread to avoid any confusion with my old problems (here). On a positive note, apparently I have nothing to worry about as regards my prostate although I am still awaiting some tests in relation to a problem I reckon is related but seems to be baffling the urologist – next up is a flow test which was scheduled for April but other issues might affect the timing of that.

I’m just going to detail events to date as even trying to go into thoughts, feelings, whatever, at this point is pretty raw!

I saw the urologist in mid-January and, for reasons I did not understand and he did not explain, he made an urgent referral to the ENT department. I saw the ENT consultant (who I know pretty well so thankfully has been completely frank with me since the beginning) the next day and was subjected to a nasoendoscopy amongst other things.

I could tell pretty much immediately that something was wrong and, sure enough, it was explained that I appeared to have a malignancy / tumour of the left base of my tongue probably with bilateral nodes. At that point the type and extent was not clear so I was booked in for a ridiculous number of procedures which took place just over a month ago. If I remember rightly I had a laryngoscopy, pharyngoscopy, oesophagoscopy, CT scan of my head and neck and an MRI of my tongue. Not bad for a day’s work.

The upshot of these was that I have, and I quote, an “enormous” oropharyngeal tumour covering the whole of the left tongue base, my left tonsil, my left epiglottis and something else but can’t quite recall. Nodes are pretty widespread but are relatively small.

The consultant was completely blunt and told me that, whilst I may seem asymptomatic and not noticeably “unwell”, the disease is too extensive for surgery to be feasible. In fact the only option is concurrent chemoradiotherapy and even then, as he put it, “I doubt that even with that you have much chance of surviving" - a phrase that was burnt into my memory and replays itself at random times! The biopsy results came back confirming T4 N2b invasive poorly differentiated focally keratinising and basaloid squamous cell carcinoma of the hypopharynx. The T4 N2b bit is not good news! The rest of the technical jargon still hurts my head but is a delight for those with Google-foo.

A few days after that, I made an appointment with a private consultant in the UK mostly just to see if there might be any new developments that were not available publicly and might improve my chances of survival. Unfortunately, he confirmed the treatment suggested – and the prognosis – although did provide a small glimmer of hope. Since I do not smoke and drink relatively little, it is likely that I have an HPV P16 virus related tumour (I almost choked at that suggestion) which provides some optimism of responding better than usual! Oral sex has a lot to answer for. At this point, as I was in London, I went a bit mad at the shops.

Then two weeks ago, I had a consultation with the clinical oncology consultant in Southampton (radiotherapy is not available over here so has to be referred there) who explained that I would have a couple of cycles of chemotherapy over here as an outpatient, then 6 weeks of radiotherapy with concurrent chemotherapy at Southampton and then “we will see”. He went to great pains to explain that the only option (other than the palliative route) is to go all out for a permanent cure but this necessitates an extremely aggressive form of what is a toxic treatment. As a result, the treatment itself could actually kill me! The chances of success are, at best, slim and I need to make some decisions about the way forward. At the moment I am well and asymptomatic. Going for aggressive treatment will be time consuming, limit my options as to how to spend what could be my last days and is likely to bring forward me actually being unwell to the extent of stopping me function. Alternatively, I could go down the palliative and just enjoy myself as much as I can – but that seems so final and defeatist!

Current situation is that I am hedging my bets to provide a little more time to reach a proper decision. I have gone ahead with chemotherapy – next session this morning – and, if I choose curative treatment, I am due across for chemoradiotherapy at the beginning of April.
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I've read this several times now and have several times attempted a response before instantly hitting the DELETE key before posting. I've seen and commented on your posts before - I particularly liked the ones where you did NOT offer legal advice but instead 'shared an opinion' to those who could benefit from such - and I've read, with less gusto and even lesser delight, the ones where you've touched on your potential and then probable illness.

I think that there's little chance that I, in your situation, could have the balls, the intelligence and the words to convey the situation that you are now in, in such an immediate and meaningful way as you have done in the post I have quoted.

I really, truly hope things work out for you sir.
 
DanielMMS said:
*The worst news imageinable*
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You sir are a far far better man than i, quiete frankly if you dropped that kind of news on me ide crawl into a bottle & stay there for a week, what ever you choose to do, how ever you choose to approach this, i wish you all the very best.
 
[FnG]magnolia;25920434 said:
I've read this several times now and have several times attempted a response before instantly hitting the DELETE key before posting. I've seen and commented on your posts before - I particularly liked the ones where you did NOT offer legal advice but instead 'shared an opinion' to those who could benefit from such - and I've read, with less gusto and even lesser delight, the ones where you've touched on your potential and then probable illness.

I think that there's little chance that I, in your situation, could have the balls, the intelligence and the words to convey the situation that you are now in, in such an immediate and meaningful way as you have done in the post I have quoted.

I really, truly hope things work out for you sir.
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Exactly what I was thinking when typing. :(
 
I really feel for you; that is some curve ball! I wish you all the best at beating this thing. My prayers are with you.

On a more clinical note; there was an article in yesterdays Metro about a guy who beat 70 odd tumours which were a rare form of Non-Hodgkins Lymphoma using a new drug. Ahh my google-fu skills do not escape me; called Brentuximab Vedotin. Found article here:
http://www.dailymail.co.uk/health/article-2567455/Cancer-patients-lethal-70-tumours-disappear-just-two-WEEKS-thanks-pioneering-treatment.html

Might be worth asking your consultant about. They most likely would have thought of it, but never hurts to ask.
 
Two family members and a friend have recently gone through scenarios where they were told they may not have long left. Shockingly enough, 2 of the 3 are both alive and well (as they can be) and in remission. A small chance is better than no chance and I really hope it works for you dude.

*brofist*
 
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MookJong said:
Very hard to say anything that will be of any use, but I just wanted to acknowledge I had read this and tell you my thoughts go out to you.
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This^ I'm pretty useless in these situations and anything (including this) just comes out wrong.
 
As has already been said, not really anything I can add to the thread other than thoughts are with you and I hope it goes well.
 
I really admire the dignified way you seem to be dealing with this. You may be a mess inside, but I don't even know if I'd be able to string two words together never mind a coherent post.

I hope you have some quality time with friends and family in the days ahead.
 
That's chemo session number two out of the way. Thankfully no nasty side effects as yet!

Thank you all for your kind words. It means a great deal. Despite being surrounded by a completely supportive family, I don't think I have ever felt quite so alone. That said, tapping out some thoughts is surprisingly therapeutic. As regards the future, the thing that keeps coming back to me is that I'm simply not done with life yet. Quite what that means I am not sure! I had to face my own mortality rather abruptly about 15 years ago so that is something that I have in a way come to terms with. The biggest difficulty for me is thinking about those who would get left behind, ie my wife and kids, and how they would cope. ********.
 
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