Hi,

My Dad has a tumour in the floor of his mouth just under the tongue, he's 61.

The specialist has told him that he will have to have an operation which involves removing part of his jaw and replacing it with fibula bone from his leg. It all sounds terrifying!!!!

I would be really grateful for any feedback from anyone who has had this same operation, has anyone been given this option and gone for radiotherapy as a first course of action instead.

As you can imagine we are all devastated by this news but want to help and support him and mum as much as possible.

Many thanks

Simon

Hello Simon

There are lots of survivor stories on the MCF website. The defect left after removing the cancer is reconstructed with bone and tissue from another 'donor' site. The commonest donor sites are the forearm (radial bone) and the leg (fibula bone). Several of the stores describe this.

Tell your dad that's while the road can be rough, it is a road (unfortunately) well travelled. He/You will find the stories encouraging and the message board members very supportive.

Best wishes
Vinod

Good Morning Simon,
I had the same operation when I was almost 68, the only difference being that the donor site was the left arm.Seven years downline I am still enjoying a near normal lifestyle. A few adjustments are necessary but after a short while these are no longer noticed.
As Dr. Joshi says it is a bit of a rough ride but not as bad as you are probably thinking right now.
If you wish to speak to someone with personal experience of cancer surgery call the Mouth cancer Foundation helpline and someone with the appropriate history will call you back (01924 950 950).
Keep Smiling
John

My father's cancer was base of the tongue so in a different place. so I can not comment on his particular process but kudos to you to do all you can to help your dad. My father went from stage IV to remission - it can be tough but there is hope!!

Thanks for all the responses, greatly!

John, I understand each case is individual but can you give me an insight into how your appearance was affected if at all, as this is of huge concern to my Dad.

Kind Regards

Simon

Good Afternoon Simon,
As you so rightly say each case is individual. In all cases some element of disfigurement is inevitable but it really is far less than you might imagine. The prospect of removing part of the jaw is a daunting one to say the least and thirty or so years ago left the patient with considerable disfigurement. The passage of time has seen a vast improvement in reconstuction techniques and I think you will be agreeably surprised at the skill of today's surgeons.

I have met several people who have had this operation and in most cases the incision runs from below the ear to the shoulder then turns towards the centre line of the throat, curving upwards to the chin, there is no incision on the face itself. Please realise that I am speaking in general terms and largely from my own experience and I reiterate your comment that each case is individual.

From the previous paragraph you will see that any disfigurement is most likely on the neck.

As you might expect evidence of the surgery is most obvious in the days and weeks immediately following the operation and fades with time and ,of course, family and friends quickly come to terms with any changes.

Simon, you will have to decide just how much detail your dad can cope with and put it into terms he is familiar with, at this stage it would not be a good idea to describe the incision in the brutal terms I used, leave such details to the professionals they are pretty good at it. Right now your dad will have an exagerated view on all aspects of this problem and whilst no one is pretending that it is all jolly good fun, because it isn't, it is nowhere near as bad as one's tortured mind would have one believe.

My post operative appearance was low on my list of concerns, mind you I have to admit that I never was any oil painting,the possibility of not being able to enjoy a slice of pork pie in the future was more of a worry to me.

Keep Smiling

John

Hi Simon,
I can't really add much to what John has said; he could have been describing my scar and my attitude towards pork pies!! I too had this operation, using the fibula to replace my jawbone just over 2 years ago. Like everyone says, it's a rough road ahead, but it's all worth it in the end. I now live a more or less normal life, eating and drinking better than I had ever expected to after the surgery, chemo and radio therapy. I am happy to share my experiences with you, so if you would like to know more, please feel free to pm me and I'll give you my email address. Love and best wishes to you and your Dad.
Dian xx