my dad was diagnosed with cancer of the larynx in september 2008. they told us it was a small T1 tumor and said 20 sessions of radiotherapy would give him a 95% chance of being cured. he finished the 20 sessions late november, and continued to go downhill from then on. he was in hospital on christmas day, and continued to be in and out of hospital even for his birthday in feb this year. he had a second biopsy at this time. they told us the cancer had got bigger, the radiotherapy had failed. a week later he had an emergency laryngectomy (and neck dissection?) we were told this was his only hope. his laryngectomy was on the 3rd of march 2009. two weeks later we received the biopsy results, and all sat in a room whilst his ENT surgeon went on about how he had actually had three tumors removed, one of which was paper thin to his artery, it had also affected his lymph nodes and buried into his thyroid which they removed too. but he went on to tell us that our dad's cancer was ALL GONE. we couldn't really believe it. over the following weeks we had to prise information out of them as we still weren't completely sure of what they had told us, not believing it. his ENT doc then told us he was to have 6 further weeks of radiotherapy IN CASE there were any remaining cells on the artery. his oncologist then told us there ARE cells, and that he MUST have radiotherapy. so we spent these past couple of months pursuading dad to go through with the radiotherapy, he tried to have it but he couldn't lie down for long enough to finish simulator images for the planning. he was sent back to his oncologist to see if he could have it done sitting up??? we never thought he could, and they didn't even talk to us about it. they went on to withdraw the radiotherapy saying "the window of opportunity has passed" ???! my mum and myself and brother questioned them on several different occasions about other options, further treatments such as brachytherapy, cyber knife, drug treatments, chemo etc etc as we had tried to research it ourselves. but they would not discuss these options with us, simply discarding them and saying there is no other treatment bar radiotherapy (which at 11 weeks post op they said he can no longer have). during these meetings they had also mentioned that if dad's cancer did come back they'd give him chemo to keep it under control. on tuesday of last week we asked for his prognosis as we were entirely unsure where we stood now, having had the treatment option withdrawn. his oncologist gave us two to three months... tuesday of this week (yesterday) my mum and dad went to see his ENT doc for swallowing difficulties, and they were taken by surprise when told the following (written down in a notepad by my mum as she was too in shock to take it in and respond, wasn't sure she had heard right but dad confirmed this was what they'd said):
- radiotherapy, his surgeon seems to think this is still an option
- BUT it's not going to happen
- oncologist thinks tumor is already coming back
- but they said they will not look anymore to see if it is progressing BECAUSE dad didn't have the further radiotherapy?!!!!!???!
- no radiotherapy so they have withdrawn all further treatment and further surgery, including the chemo they offered us, the only thing they will do now is give him drugs for pain relief when it comes to the end
we are desperate for help, we are awaiting an appointment at the royal marsdens for a second opinion, but we are afraid they will treat us in the same way and not discuss anything with us. we feel there must be something that can be done (as has been confirmed by dad's oncologist/surgeon but we are being denied this?!). we can't understand what is going on, my dad is 44 years old and i am the eldest of his 8 children, i am 21 this year and my youngest sister is just 4 months old, he hasn't had the opportunity to enjoy any of her life as he has been too ill. we simply want someone to be honest with us, and give us the answers we need to aid us in our fight to keep our dad alive.
thanks for taking the time to read, please don't hesitate to give us your advice or help with anything as my mum spends hours trawling the internet not even knowing what she is looking for, just knowing that someone out there must know something that can help us.
edit - forgot to mention that we were also recently told that actually his cancer was just a big mass wrapped around his artery ??