hi, KayKay
waiting does intend suck, but it sounds like he is at a wonderful centre. Best wishes from wintry Ohio!

good luck KayKay

A colleague of mine who has been working in oncology for years and knows everyone, told me that if she had cancer she would travel to the Peter McCallum Centre for her treatment and she lives in Sydney.

Alex did not have cancer in the same area as your Dad, but he did have "inoperable" cancer. Alex's was base of tongue (BOT), tonsils and lymph nodes (both sides). When I heard "inoperable" my heart sank because I thought this meant non treatable and, therefore, fatal.

Not true. Inoperable might mean that surgery would take out too many of his functions (eating, drinking and speech) and they are considering other options.

Alex's inoperable cancer was diagnosed in early 2010 and he was given chemotherapy to reduce the tumour and then chemoradiation to annihilate it. And it did!!

3 years on, Alex is back at work, and as enthusiastic about life as I have ever seen him. Despite his continuing sagas with eating. Thick soup which he euphemistically describes as "stew" is still his best effort so lives on Ensure Plus. He feels that 2012 was his best year ever and is looking forward to 2013 being even better.

Trust your tumour board, but ask lots of questions and the first might be "what do you mean by inoperable?"

good luck

well the results came back and are not good.. operation is to invasive and will cause too much damage and no guarantee of removing it all..radiation ,chemo or doing nothing = 6 mnths ,
the only option is intense treatment 5 days per wk for a period of 7 wks,with a possible 1-3 good years.so the last and only option is what he has chosen. This involves a feeding tube for 6-12 mnths,as in mouth will resemble ulceration and facial skin willbe like extreme sunburn..this trueley sux ,l have no idea how so many of you go and have been through it over and over,please tell me there is light at the end of the tunnell?
has anyone had to do this intense treatment,that can shed some light on symptoms and ideas how to help make this more bearable??

and i have read that recovery time is something like each week of treatment needs a month of recovering..is this true?and how long till he can eat again properly?

Hi there... As klo said inoperable isn't a death sentence, and no one can say for certain that he has 1-3 years his cancer may respond well and he may be NED at the end - all they are offering is an educated guess. That said your dad's treatment is standard. It sounds like a lot but most of us who have gone through rads and chemo have 6.5 weeks, to 7 weeks of treatment. I had 32 as opposed to your dad's 35. And anywhere between 3-6 Chemos (same amount just some hospitals break it up over 6 weeks rather than three)

Most of us have had feeling tubes, not all and some keep them longer than others. I was blessed, couldn't use mine so I sucked it up and chugged my nutrition (ensure, boost, whatever you have available there) I finished radiation on may 4 and by the 19th I had had mine removed as I wasn't using it. Everyone has their own experience with rads and chemo, some really suffer, some have an ok time with it, most fall in the middle. Usually things are ok for the first 3-4 weeks, its usually the last two weeks and the two weeks following rads that are the worst. (Radiation is cumulative) To get through it he needs to get high protein, good nutrition, and lots of hydration. He should rinse with flattened club soda (he can swallow it- it helps heal) or a baking soda, water and salt mixture (he can't swallow this) food with taste funky at first then he'll lose his sense of taste, at this point soft bland food are best.
He'll need a hearing test, and a visit with the dental oncologist for flouride trays, assuming they don't pull his teeth.
Chemo for me was nothing, a little nausea that's it, for some there's more nausea. Usually it is the thick mucous at causes problems later In treatment. If he keeps his mouth clean, and does his rinses it will help with the sores.
He needs a good cream for his neck as well.
There will be others along to give you more info. Best of luck our thoughts are with you,

thank you for some positive thoughts..im hoping he can bare with it and come through it as strong as u guys have .. x

What would the surgical option involve. Why are they discounting this?
It is possible to have a good life without being able to eat and or talk.
If they are offering radiation and chemo and then saying this would give him about 3 years why not do the surgery and radiation to clean up with a hope of a cure?
Thinking of you,
Tammy

I agree with Tamvonk, I would go for a cure. but a lot depends on age, overall health and quality of life post treatment. hugs.

My wife was also treated at Peter Mac here in Melbourne.

You are in good hands there and I am sure the tumour board (which is in association with the Royal Melbourne Hospital) will do whatever it takes to make things right.

Stay strong and vigilant. Be prepared and ready as the role of a caregiver can make a world of difference to your loved one who has to go through this treatment.

well treatment lasted its 7 weeks,unfortunateley dad only lasted 4 days after it.. wasnt the cancer or his heart we dont know yet,but sure makes me wonder if he hadnt given this treatment option a try would this have still happened?or would he still be with us? he had made it through so well,lost minimal weight kept up with everything as he was told,i seen him a week before and he was up and about trying to get on with things as normal as he could,other than a very enlarged tongue and swelling to his neck area he was dad almost back to normal and was so ready to start the healing...... i feel so cheated that he didnt get enough time and i didnt have a dad for enough time,how do you go on with your own life knowing he cant ,that he hadnt eaten a proper meal or sat and had a beer for 6 or so weeks,he hadnt done anything other than daily trips to the hospital for 7 weeks,we hadnt had a good old chat because he couldnt due to the swelling,life really does know how to give us challenges and my god this is one that i just dont know if i can beat it,i just want more time,normal time to have him as my dad xx