my dad has just been back for 12 mnth check after a scc removed from lip..hes had a swelling around the chin area where alot of reconstruction went on,hes been concerned for few weeks now and we all thought it was scar tissue as his 6 mnth check was fine..after a cat scan they came back with a diagnosis ... a tumour that is wrapped round his voice box lymph nodes and tongue organs,and they doubt its operable..and told us to prepare for the worse.from him getting first scan results yesterday hes been sent for pet scan today more tomorrow and then results again tuesday..what the and how the did this happen within a check up 6 months ago and now..please has anyone been or had close to this diagnosis, im unsure of the outcome and scared to death of it...is there a chance of survival with out an operation if it does turn out to be the case..other than slight high blood pressure hes fit as a fiddle at 67

Welcome to OCF! So sorry to hear about your fathers recurrence.

Its pretty difficult to try giving any type of prognosis over the internet. The best thing I can tell you is to find the very best medical professionals available and then finding some at a different cancer center for a second opinion.

The treatments to eliminate cancer are either surgery or radiation with or without chemo. If surgery and radiation are out of the question than sadly your father wont be curable. Chemo can be given as a palliative measure to help shrink the tumor and extend his life. But chemo alone will not cure his cancer. Some 'old school' medical professionals will say radiation is only a one time option. But there are several members here who have had it more than once. This is a very individual thing and varies on a case by case basis. If your father hasnt had radiation then I would suggest asking. Even if he has had it ask if a second round is possible.

Best wishes with everything!!!

thanks so much for ur response, he has more tests tomorrow and most of next week,hes of the oppinion tha he doesnt want surgery if it is even possible but hopefully he will change his mind once hes had time to take it all in..the strange thing is he is doin everything normally eating drinking,no signs of anything wrong which is making it harder to take in,is this usually something that grows rapidly or will it take its time before it starts changing his way of life,i guess im wondering which way is the better way of life , operation and sick/uncomfortable/miserable for too long a time(and maybe not get all of it anyway),verses let nature take its course and hope for the best and live what life is left comfortably..

Its a very hard decision to make! But until all the test come in and your father knows what he is dealing with and potential treatment plans, its not possible to decide his fate yet.

I walked around with Stage IV OC in 2009. When my doc told me to get my affairs in order as it was very serious and Stage IV, I could tn believe it. I really felt great, lots of energy and had no symptoms at all. Many times OC presents no symptoms until late stages which is why it is such a deadly disease and sometimes so hard to treat.

Kaykay,

Eventually this disease gets ugly and painful. I know that when my recurrence happened I developed severe pain when the tumor invaded a space occupied by a bundle of nerves. One day I'm fine and the next day I am in severe pain.

My brother had a diagnosis similar to your father. He went through surgery and radiation and is good now 1 year out. He still has his vocal chords but speaks with a gravelly voice. He eats soft foods and is working his way up to full meals but does not need a feeding tube.

Your dad will have to wait a bit before they give him a treatment plan and it will be hard for anyone here to give you much advice until then. I would recommend he get a second opinion no matter what they come back with. Different places have different approaches. Try and get to a Comprehensive Cancer Center if you can.

Kaykay

What part of Australia does your father live in? Do you know which hospital or Cancer Centre he is currently attending?

There are several members from Australia on this site. Has he had a second opinion? Perhaps we can provide suggestions regarding Medical specialists in his area.

Karen

he is living in victoria,goin to peter mac and has days of tests to go with some results early next week..theyve given appointments for a dietician speech and a range of other things,is this a sign that it may be operable?or will it need to be done reardless..eventually

also am glad your brother has come through ok...i pray for the same outcome for my dad,thank you

Kaykay

Peter MacCallum Cancer Centre is the right place for Head and Neck Cancer patients. Arranging appointments with a Nutritionist, Speech Therapist etc is standard procedure at Peter MacCallum CC. Once they have your father�s latest test results they will probably take the information to a Tumor Board within the Cancer Centre where his case and treatment options will be discussed by Surgeons and Oncologists. Tumor Boards meet regularly so treatment plans are provided quickly to patients.

Hopefully they will decide on a plan for him asap.

Karen

thanks so much,i thought that was the best place to be dealing with him...i pray to god that this is operable,its now just the waiting game..the worse bit

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

I am so sorry to hear about your father. I can only hope your pain becomes more bearable with time. Your dad knows you were there with him for the entire journey. Sometimes that is enough...or at least all we can do.

Im very sorry for your loss. It sounds like your father did very well handling the treatments. Losing a parent is never easy. I do understand what you are going thru, I lost both of my parents many years ago. Try to think about happier times and let those memories help you to remember your father before he was sick. Take time to grieve and try to remember to be good to yourself.

Oh Kaykay, life just is not fair. I really do feel your pain.
I don't know that you will ever get answers to all your questions.
I think that you just have to treasure the memories. Think of all the good times you had together and of all the love you shared. Know that he fought hard. You all did your very best to get him a good quality of life and to keep him with you. it just wasn't to be.
I pray you find the strength to get through these very difficult weeks and months.
Tammy

Oh Kaykay - I'm so sorry to hear of your Dad's passing. There is never enough time when we lose someone close to us. I'm sure your Dad felt the love and the tender moments you had with him as he fought so hard to make it through this tremendous challenge. Just know that his love is still surrounding you and helping you now, as you make it through these sad days and moments.

I am so sorry for your loss. I recently lost my father so I have an inkling of what you are going through. Much love hand hugs to you during this difficult time. It is never easy to lose a loved one.

the last 4 weeks have been very buisy,we've had alot of firsts,mothers day, first trip to a family holiday shack without dad,1st granddaughters 21st which dad had set as a date he wanted to be able to eat something and have a beer and generally feel well enough to enjoy the day,first stay at mums with out dad being there,i know there are plenty more to come and that each will be as hard as the other,this is the first wkend that we have nothing on and im not looking forward to it,keeping buisy seems to have helped,its the quiet times at night that my mind turns to dad,dont want a whole wkend of quiet !lm still struggling to come to terms with the reality of it all,l do know one thing for sure, so far it hasnt got easier its got harder, the crying just starts up anywhere any time and i cant stop it...i can hear him and see him like it was only yesterday ,l just cant get my head around the fact that i wont see him again, i honestly dont know how to go on with out him in my life...it trueley sux !!!!

Sorry for your loss, it does eventually get easier but you do have to allow yourself to grieve. Try to remember the good times. I lost my dad in March, it was heart breaking but he was suffering and unhappy. I love him, and miss him, but try to remember the good times with him. hugs, love and peace to you.