Posted by Jo X, 17 September 2009 11:52 PM

quote:

Hi everyone, im new to this site and wondering if anybody out there can help. My dad has just been diagnosed with Oral cancer he a been offered curative surgery which would involve taking a bone out of his leg and reconstructing his jaw, at this stage my dad has declined the operation as he is terrified he is 68 does anybody have any advice please much apperciated.

Have created a new thread for Jo X and moved her posts and replies here

Moved Reply:

Hi everyone, im new to this site and wondering if anybody out there can help. My dad has just been diagnosed with Oral cancer he a been offered curative surgery which would involve taking a bone out of his leg and reconstructing his jaw, at this stage my dad has declined the operation as he is terrified he is 68 does anybody have any advice please much apperciated.

Moved Reply:

Hi Jo,

I am no expert but I do know lots of people on this site and others who I have met, that have had the same operation and they are alive and well today leading a good life.

If the doc/specialists are offering "curative surgery" to extend his life then why not go for it. It is a tough operation to get through but I presume they feel that your father is strong enough or they would not have offered the surgery.

Hopefully some others will comment soon who have had similar surgery.

Hope things work out the best for you both.

regards

Ken

Moved Reply:

Hi Jo

I will echo what kenny has said.If the doctors are happy to offer the surgery then he should think very carefully about it.

There is no doubt that such a big operation will not be easy for someone his age as the healing process can be a bit harder as we get older,but when the doctors look at the options then they take age into account,they also take the general health ,likely success,alternative treatment options,mental attitude,whether it is contained to one area,wether there is any sign of it having spread ,family support,etc before they decide if surgery is a viable option.
the fact they have recommended surgery to your dad is indicative of his ability to survive this procedure and go on to lead an acceptable quality of life.jaw reconstruction with bone from aother part of the body will be traumatic and the recovery can be difficult,but it is quite a common method of treatment and he should think very carefully about it.

On the other hand your dad wouldn't be the first person to say no to this and if he is determined,then you need to know what other altrnatives there are.He could have chemo and radiation but they may be more pailliative rather than curative,and could actualy be tougher on him than surgery.
Lots to think about,but ask the questions ,and ask for a frank answer to the outcome if he doesn't have thesurgery.

Moved Reply:

Good Morning Jo,
I had the same procedure when I was 68 the only difference was that they took the bone graft from my left arm probably because I have long term vascular problems in both legs. I am now 73 and enjoying life to the full.
I go along with what Kenny and Liz have said and would like to add a couple of things. Firstly, in my book, doing nothing is not an option; life is far too precious.
When I was diagnosed the surgeon immediately went on to describe the necessary surgery, I was not given any options to consider and now I am glad because whilst the surgery is not very pleasant the long term effects of radiotherapy can be long drawn out. Radiation can not be repeated so, in my humble opinion, should be kept in reserve in case another (this time inoperable) tumour develops. I am not a doctor but I think I am entitled to my opinion , you & your dad must listen to the experts and form your opinion based on their advice.
I am glad I was not given any options because I might just have chosen radiotherapy.
The operation is quite major but the effects are not as drastic as our tortured minds would have us believe, I was agreeably surprised to find that I had little or no pain when I awakened after the operation, even though I had been told beforehand that this would be the case.
This site has members around the world who have seen this problem from all angles and now we all wish to help anyone who is at the start of the road, if you have questions please ask, someone will have an answer.

Keep Smiling

John

Moved Reply:

Thank you soo much for your replys, it means a lot to me. They havent offered any alternative treatment at this stage as they said it wasnt practical for the type and location of the tumour.At first i was releived that he refused the surgery as i was thinking it would be too much stress and trauma for him but he is a relatively fit man who goes swimming every morning, the doctor said this would put him in good stead for recovery. I am now thinking that surgery is the best/only option especially after the doctors and surgeons have said "you have a curable disease". Listening to your stories has helped me i now going to have to convinced my dad the same. I will keep you posted with his decision. Thanks guys x

Moved Reply:

Hi Jo

I hope you can convince your Dad, and agree with all the advice that has been posted to you.

I had my surgery on 25th July, and its my first night out with all the girls tonight, going to eat a chinese! Who would have thought that just a few weeks ago!

I to am in Lancashire so can you tell us which hospital and Doctor your Dad saw? Maybe just be same as mine.

Good luck to Dad and keep us all posted.

ps. I find this site very helpful xxx

Ann x

Moved Reply:

Hi Ann

That is fantastic news about you, we went to The Christies and saw Mr Musgrove and Mr Tim Blackburn. They were both convinced they could cure him and said it was 95% successful. He is just terrifed and weighing up his age and everything else. Did you have the same operation? Really glad i joined this forum to give me advice etc.

Thanks Jo x

Moved Reply:

Hi Jo

Yes I am under the Christie, no I didn't have same op, I had aflap and graft, and also removal of neck glands, had my surgery at Wythenshaw with a Mr Patel. All I can say is in my mind they have saved my life!
I really do wish your Dad all the best and as you have read on here lots of other peopl with same problems.I also agree that all though whatever surgery it is it not always pleasent, but hey only 8 weeks since mine and I feel great! Things don't always seem easy at the time but, there is a light at the end of the tunnel! Hope that helps you! Please feel free to mail anytime.

Ann x

Moved Reply:

Hi Ann

My dad was actually in Manchester Royal last week, we met Mr Patel there (really tall guy, very lovely?) he was due to have his PEG fitted as his op should have been this week but that was when he declined it as he was really scared. They have scheduled the operartion again for 20th Oct so we have until then to decide.
Jo x

Moved Reply:

Hi Jo,
Please encourage your Dad to have this op. I had exactly the same op done just 1 year ago and I can honestly say the chemo and radio therapy were far worse than the op itself. I'm not saying it was an easy time, but if I'd said no at the time, I wouldn't have been sitting here typing this to you right now. A positive attitude and a sense of humour will help you all through this horrible time. Good luck and lots of love.
Dian x

Moved Reply:

Hi Jo,
I'm so sorry to hear about your mum; no wonder you are both so worried. I am eating and drinking normally and all my bone and skin grafts have healed up very well. I've got a lot of scarring to my legs and neck, but none to my face. I have also been left with a slight speech impediment (which my brother refers to as 'talking with a limp')! I can send you a private message with my email address or telephone number if you feel it might help to ask whatever questions you like. I am more than happy to tell you of my experience if you think it might help. I'm off to visit relatives in Nottingham shortly, so I won't be around again until tomorrow evening. Take care and try not to worry too much.
Dian x

Hi All
Can anybody give me an inclination of what lenght of time it will take for him to recover/ get back to normal so to speak?.. At this stage the tumour is just on the gums/jawbone, nothing wrong with his lymph nodes and no sign of it spreading anywhere as yet.How quick does this type of cancer spread?.
How long is he likely to have his PEG in? i know every patient is different but a general idea would be greatly appreciated.
Thanks Jo x

Hello again Jo,

We are all different as we deal with with the word cancer in our own different way, and as you can appreciate we all have had surgery (ppl that have replied to you) all our surgeries are different, but they are all very involved, and no-one knows unless they been there! You do really need to chat with your dad and get him to go ahead with this surgery, it won't be nice for either of you, and I saw what you said about your mum, so I know because I lost my Dad last year to cancer, being without one parent is hard enough for me, so for you it must be a really hard time!

Mr Patel and his team are so nice, and your Dad will be in good hands.

You need to stay positive and smile, something I can now do without my left lip going where I didn't want it too lol!

I really at this moment in time don't know what else to say, only good luck and keep in touch.

Ann x

Hi Ann

You will pleased to know that my dad as decided to go ahead with surgery, the cancer nurse paid him an home visit today and it seems they are pulling out all the stops to give him the best care possible. We both no that there really is no other option other than surgery, the nurse said that the cancer is localised to just one area on the jaw line so i think that means its better/ easier to treat.His operation was scheduled for 13th Oct (day mum died) how ironic is that but we refused that date so he is now having it onthe 20th Oct. I will keep you posted on his progress, and thanks again to all of you. Jo x