Is there anyone out there with a two year old flap? Anyone who is having problems along the join? Anyone with tethering of the tongue? I've been getting along just fine although my tongue looks multi-levelled and two-tone. Young doctor/registrar I've been seeing for my check ups lately is worried about "leukoplakia" on the flap and flap/native tongue junction. (Last time she thought it was thrush - it was a bit sore and got better after treatment)

I've just had a biopsy and know I will worry for the two weeks it takes to get the results. My gut feeling is that it's all right. Mind you,last time I had a recurrance was just within the two year period too. And at that time too I felt fine.

On a cheerier note she thinks I might be able to have the tethered part of my tongue released a bit. Hmmm

This is a wake up call!!!!

Maureen

Hi Maureen,
I have been having issues for 5 years with the join between the tongue and flap and it was pretty clear at my last visit that there was not much more that can be done.
Have had a few operations to try and rectify the problem with not much luck.
At the moment I am going to give it a rest for a while as the most important thing is that the last 2 biopsies stated that there was no evidence of a recurrence.
I saw my GP yesterday and got a copy of the 1 page report that was sent to him by the oral surgeon that I last saw in August.
Basically it starts with;
G presented with three concerns: (1) persistent leukoplakic changes; (2)
concerns regarding the cosmetic outcome following left forearm flap repair of her right
lateral tongue surgery site, post excision of two oral squamous cell carcinomas; and (3)
mild persistent burning sensations that tended to progress and worsen during the course
of the day.
Issue number 2 is not something I have worried about for some time now!

The diagnosis was ;
Previous biopsy in March 2011 demonstrated chronic hyperplastic candidiasis of anterior edge the skin flap repair. Importantly, there was no evidence of recurrence of malignancy.
I am so sorry that you are having these issues and need to wait for 2 weeks for the result but I know you have plenty to keep you busy
Hoping that it also comes up as NED for you.
Cheers
Gabriele

Great info, Gabe. That sounds exactly like my situation. I need to be assertive and see a proper specialist instead of the baby doctors I've been seeing this year.
You really are a gem.

Me too... hoping you are in the clear. Thrush is a BEECH... avoid sugars - it helps with eliminating thrush. Lekoplakia is also a BEECH.. ;o) sorry you both are having problems with your flap. I too have a swollen area still though it gets smaller daily! and I have a little fold where the old and new are joined... I see the plastics guy next week for the follow up. The last time I saw him ( first time I met him ) I was 1 week post rads and he said go home and come back in 3 months! since my mouth was destroyed... Apparently all is well I hope - my check up with him and my SO go well... always get a little nervous. ;o) I think you should go with your gut! and try not to think about the results. hugs!

Thanks people.I wasn't happy about the young registrars I've been seeing lately, the last of which seemed to confuse the flap with the tongue. I wrote a letter to her and her boss (whom I've never met) and pointed out how upsetting it is to be checked up by someone who is not an experienced docotor or specialist in the field. By the end of the day I had a very defensive phone call from the specialist whom I will be seeing form now on. He'll see me as soon as the results come out.

I should have done this a year ago. As they say in rugby, I took my eye off the ball.

And Gabe, I used your biopsy report and diagnosis to Google more information about the flap and "anterior edge of skin flap repair. It was very useful because I find it hard to find out stuff about the PROGRESS of the flap.

I feel more in control now and just have to have a great 2 weeks till the results arrive.

Wishing you both well.

Much love

No carcinoma! Thanks be ...

Fantastic news Maureen!
I am so happy to read this. Deep breath and celebrate
Love
Gabriele

Oh my god!!! That's so great!! What a huge sigh of relief it must be. Joyful hugs to you!!!

yaay!!

Hey, thanks everyone. Yes it was great. And today I saw a wonderful, enthusiastic surgeon/consultant here in Whangarei who has a real interest in tongue surgery. Why I didn't see him before I don't know.
Because of Gabe's big words in her biopsy report above I was able to talk to him intelligently about hyperplasia (?). He even showed me close up photos of flap joins and flaps gone slightly wrong so that I know that I fall within some sort of normal range.
I have a bit of a problem with my native tongue because of the way it is pushed against a gap in my teeth ... but for the moment I'm just pleased to be clear of cancer.
Best wishes
Maureen