Back in June my dad who has just turned 79 was diagnosed with stage 3 HPV+ Oropharyngeal cancer. The tumor was large with 2 lymph nodes affected but no distal spread. He was told that surgery wasn't an option due to the size and location of it but he was offered radiotherapy which would be 35 sessions over a 7 week period and that the aim of the radiotherapy was to cure it. He started the radiotherapy at the beginning of August, had 4 sessions and then on the 12th August he ended up being hospitalised with Aspiration Pneumonia from.which he was really poorly and was on oxygen for a couple of weeks so his treatment was paused but against the odds he pulled through and was discharged back home last Friday. I should point out that before he started his radiotherapy he did have a feeding tube put into his stomach.
We are gradually bringing him back to health and he has now started walking unaided and is really getting back to somewhere where he was prior to the pneumonia but obviously it's only been a week since he left hospital so still early days. Strangely enough, since coming out of hospital his speech has improved a lot to what it was as that was quite affected beforehand due to the tumor location and he isn't in any pain from it currently which again prior to hospital he would periodically complain of pain to the area affected and he is managing to eat a level 5 diet along with having fortisips through his feeding tube. He was due to have an appointment with the head and neck team on the 23rd sept but they brought that forward to yesterday and as a result of that the recommendation was that he would be given palliative radiotherapy over 5 sessions but at a higher dose with the aim of managing symptoms and giving a better quality of life. I'd never heard of palliative radiotherapy before yesterday and I always associated anything palliative with end of life so I was obviously really upset with this. Dad signed the form consenting to this treatment and all he would say is that they are the experts and that is what they think is the best thing to sort it and when I tried asking him what exactly was said I felt like I was being shut down a bit. I just couldn't understand how we had gone from having radiotherapy with the aim of curing it to having radiotherapy just to manage symptoms etc. I know the pneumonia has obviously changed things but he is recovering from that and is getting stronger everyday, plus he's only been back home for a week. I did ring the hospital to ask further questions as my parents didn't seem to know all the answers and they said that the pneumonia had changed things and the ornocolgist had recommended the palliative radiotherapy for him but tried to reassure me that everyone gets concerned with the word palliative and after he has had it things would be reassessed etc to see what further treatments can be given and that even though the aim isn't to cure but to shrink the tumor , it doesn't mean that it can't be cured and that the dose he would be getting is basically the equivalent of 3 weeks standard radiotherapy but things can always change and that there is another appointment in a couple of weeks where further questions and concerns can be raised. I will make sure I go to that appointment but I'm just really confused and concerned by how this is going yet my parents seem happy that he is getting radiotherapy but I'm just not convinced they are fully informed with everything even though they said it was all fully explained. I know they were worried that he wouldn't be offered any radiotherapy at all when they went. For me as dad hasn't had any further scans, nothing has changed with the tumor from what it was and that won't be known until he has another one so it's not as if the hospital can even say things have changed other than the pneumonia which he had so I can't get my head around how things have ended up here and it feels like he's been given up on. I read about palliative radiotherapy and median survival rates of 6 months or so after having it but no one has even given him any kind of thing like that so I'm really worried, yet other sites say many can survive for years afterwards so has anyone ever been through similar that can offer some glimmer of hope because I am just past myself as things stand. Although he is 79 he's always been fit for his age and kept active so I'm just gutted but everything. Sorry for the long post but couldn't explain it otherwise.
