Hello. I am to have free flap surgery on May 6th, removing a section of my jaw and rebuilding with bone from a fibula. I would like to hear from someone who has had this done and what effects it had on their appearance etc.

Hi Cyrano and welcome to our community. Sorry you have had to find us.

I've had a quick search for you and there is a thread HERE you might find useful to read.

One of our community members, Penrod has a blog on his jaw cancer. It's written with a good deal of humour and a fantastic outcome so do have a look.

It's Terry's Blog

One of our other community champions, chris2012 should be along soon as he had something similar.

Fingers crossed everything goes well for you

Best wishes

Good evening Cyrano, sorry for the late reply, as Beesuit mentioned i did have jaw reconstruction and a free flap along with skin grafts. Like you, they used part of the fibula, i found the operation not too bad to recover from although it can be a long operation due to the work involved and how has to be replaced. I had about two-thirds removed and reconstructed using the bone graft and skin grafts, recovery was not too bad, and did not suffer from bad pain just a bit of discomfort, i had a PEG feeding tube fitted because swallowing is an issue, to begin with until the swelling has died down and the bone graft knitted together. It all sounds scary to begin with but you will be in good hands with the consultant and his team, mine was done in 2009 and i have had no problems with the jaw functioning properly. Please re-post if you need more help or advice and we will try our best to help, wishing you all the very best for the 6th, take care.

                                                                                           Chris x

I have just had this operation, and was lucky enough to be in the hands of a really great surgeon, who got all the cancer out with clear margins, and with no cancer in the lymph glands.  This was against the expectations of all the doctors.  As a result I have been offered four weeks radiotherapy instead of six.  I am very scared of the radiotherapy, and worried about the side and possible long term effects.  I know I don’t HAVE to have it, it’s more a belt and braces approach, but I would value peoples’ comments and any tips for getting through it unscathed!  Thank you

Hi Goolden. Did you check out my reply on the “new to the community” section?

community.macmillan.org.uk/.../1571148

Hi Goolden welcome to the community and well done on getting through your operation and  the end result. As for Radiotherapy it’s not easy but I did 7 weeks 35 sessions and 2 chemo snd I came through the other side.  It’s not easy but it’s doable take it one day at a time if in pain use the painkillers if you need a n g tube during treatment take it. There’s lots of us on here who have successfully completed treatment and living our life’s to the max 

Hazel x

I replied elsewhere but here’s a summary 

Hi Goolden. I'll try to answer this here but please do pop over to the Head and Neck group Mike has pointed you to.

Absolutely brilliant that you managed to get through all this. 

Re the RT the side effects are significant but not everybody gets them and there are two things in your favour. One, the beam will  be targeted finely and should avoid much of your throat which is where we feel most of it and two, you are getting only four weeks instead of the routine six or seven. This will lessen the effects considerably. Please do talk to your consultant about this.

It’s also about probabilities. Ask your consultant how much difference RT would make to success of treatment.

 That is what I would be doing but to put it into perspective you mention your age and quality of life. David Attenborough celebrates his 95th birthday today 

Good evening Goolden, well done in getting through the operation ok and with your recoveryyou seemed to have been treated like me with an excellent consultant and team, my story is not as straight forward but i can offer my dealings with my treatment. My first operation was on the floor of the mouth so i had surgery to remove it along with lymph nodes and a bit of my tongue, although he was confident he had removed all the tumour and any stray bits he recommended chemo and radiotherapy as a belt and braces option, as you said, i did go for it and had 30 radio treatments and 3 chemos. Unfortunately it returned a year later on my lower jaw so had a similar op to you but could not have any more radiotherapy because i had used my limit. So this maybe it's worth saving this option just in case as a bit of insurance, im not sure if the second cancer was linked to the first one so i cannot say the radio and chemo did not work, maybe i was just one of the unfortunate ones. You should discuss this further with your consultant and asking him if he thinks its a good idea to keep the radio as " a just in case" . I think in hindsight i would not have had it the first time around, but we never think/or pray it will come back, plus at the time i just wanted it gone. I had mine done in 2008 and did not have a computer then so forums like this were not an option for advice. I hope this has helped you in some way. Wishing you all the best in what you and your team decide, take care. P.S  i understand you being scared as its all new and unknown to you but i did not suffer that badly from it, i think we all react differently depending on what area is to be treated. Just avoid looking at google for answers or advice as it can be very misleading.

                                                                                Chris                               

Hello Chris,  this is two years on from my original post, and a great deal has happened.  But first, I do hope that the two years have treated you well?  You had to go through so much with the two operations and the radiotherapy and chemo.  I hope you are doing well now.

I did go for the radiotherapy in the end, and I’m afraid I’ve wished every day of my life since that I hadn’t.  When I came home after my operation I was eating (slowly) and speaking normally, but I had agreed to have the radiotherapy after talking to my family and the radiologist.  The radiology eroded the skin over my prosthetic jaw, revealing the titanium support, so I was taken back into hospital and in a second operation, this was removed.  I developed an infection, and was in hospital for fifteen days while they sorted that out.  I was sent home with a PEG through which I had to feed myself nightly.  I wasn’t allowed to take anything orally, even water, for several weeks.  A fistula developed from the outside of my face to inside my mouth, and when I was eventually allowed to drink water, I had to be careful in case it came out of the hole.  I am left with an obvious facial deformity, misaligned jaws, which mean that I have to be fed by PEG for the rest of my life, a tongue which has been so affected by the radiotherapy that my speech is very indistinct, and people can’t always understand what I’m saying.  I also dribble and drool, and my saliva is so thick  and viscous at times that I have to go into the bathroom and clear my mouth of it at regular intervals.  I so miss not being able to socialise with friends and go out to restaurants and cafes to have coffee, plus I hate the way I look, but that’s not so important.

the worst thing of all occurred recently, four months ago, when my husband of 62 years died.  He’d been suffering from Parkinson’s, and had been in a nursing home for 8 months after he caught COVID.  For the last four years before that I’d been his carer.  Of course I miss him terribly, as even when he had Parkinson’s he was able to comfort and advise me.  He was a lovely man.

so at the moment I’m feeling very ‘down’, but looking for some light ahead.  People are very kind and helpful, and my family have been marvellous, but my three wonderful sons all live away from Wales, where I live (San Francisco, Brighton and London).  I don’t want to sound like a complete misery,  it it’s nice sometimes to be able to share one’s feelings, but I don’t want to depress you!

Very best wishes to you and everyone on this forum.

Goolden

Oh Golden I am so sorry to hear how things progressed for you. That really sucks and I am so sorry to  hear of your husband's passing. This must be a hard time for you.

I have had a reconstruction of my upper jaw ,not with bone but with a prosthesis attached by implants into my cheek bones as there was a high chance of failure using bone. I do understand some of the issues you are going through. The look is a definite improvement since having the prosthesis.The year I had with no upper jaw I looked like an old witch. I was so embarrassed about how I looked and would go out with a mask on. It also affected my eating and drinking so I didn't like to do it in public. Since my reconstruction although I look 90% better the top lip on one side does not meet the bottom one so I have ongoing issues with drooling and drink coming out of the side of my mouth. I am getting used to this now but it is a definite drawback. I do go out with the family to meals but I fill up before I go and just enjoy the conversation although like you some of my speech is hard to understand.It's amazing how many sounds you make by putting your lips together.

I realise my situation is no way as severe as yours but I empathise with you.

I have decided that as I will be like this for the rest of my life I need to move ahead so have got back to the activities I enjoy but have to think outside the box in relation to eating and drinking while I am out.

I do hope eventually you can move ahead but be kind to yourself. Macmillan have a counselling service that may be helpful during this difficult time.

Sending you hugs

Lyn

Thank you so much for your kind reply, Sophie66.  It was also very helpful to share something with someone who really empathises, as you do.  I know I need to move ahead, but there are days when I feel really ‘stuck’, unable to see the positives, so good on you for being able to do that.

Many thanks.  With love, Jo, (Goolden)