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.
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.
