I am new to the forums so I hope you can bear with me as I do so need some advice. I was diagnosed with oral cancer (T1 I think) in the floor of my mouth in October 2002 in Lancashire-I had only just turned 35 and was told by the consultant that it was quite unusual in someone of my age. I was advised by the consultant that surgery was 'strongly recommended' as opposed to radiotherapy. That same month I went into hospital to have the operation but at the last minute, I backed out and said they could not do it-the reason for this was that I had the distinct impression that I was not being told everything, and because it was my face, this was of paramount importance to me.
When the consultant came to meet with my father and I to try to change my mind I told him what my fears were, and that I had to know the risks as it wasn't as if I could cover my face up with clothing if anything went wrong. I told him that I had to know the risks so that I could go home and make an informed decision.
To cut a long story short-I finally agreed to the operation in december 2002. Even then, two of my close friends had to literally drag me to the hospital in a drunken stupor, as I still felt very frightened and unsure. It turns out that I was right and over the five years since the operation my worst fears were realised. I had not been told that my bottom lip could be damaged which means that my smile has been wrecked, as the lower lip does not move downwards anymore, I cannot kiss anymore as I cannot poke my tongue out at all-this has played havoc with me being totally unable to form any sort of close relationship as I am too scared. And I was told after the operation that my lymph nodes behind my ears had been removed to check for cancer-these were found to be normal. This I was thankful for-what I wasn't told was there would be a possibility of developing lymphoedema in my face, which has made me even more of a recluse over the past few years.
I moved away to Hertfordshire a few months after the operation to be nearer family. The level of care I received here has been such that I have had to fight tooth and nail to get any support. When I have asked my new consultant about my smile or if anything can be done about my tongue I never seem to get a proper answer, and have never had anything explained to me properly so that I can move on with my life. I must admit I do feel sometimes very intimidated and feel like I am making a fuss. Please don't get me wrong-I am very grateful to be alive but I wish that I had been given the facts when I specifically asked, so that I may have chosen to try a less invasive procedure first such as radiotherapy. Because although I am alive I am now seeing a counsellor due to finding it virtually impossible to socialise, form a personal relationship or go out anywhere.
My new consultant has been very good in giving me some reconstuctive surgery this year underneath my chin, where a big lump had been left, but I want to know whether anything can be done to restore the problems I have with my lower lip and my tongue-or is it too late?

Many Thanks

Hi Ant. I was diagnosed aged 28 in 1997 and had radiotherapy and extensive surgery for SCC in my upper sinus/jaw. The surgery left me with half a smile,two different looking sides to my face and some good scars and the RT left me unable to open my mouth more than about 20mm give or take (wasn't told that would happen). I had 3 counsellors which didn't help and ended up with a psychologist for just under 2 years. I completely get where you are coming from but hang in there. When I look at it now there are more poitives from my illness than negatives. Hard to beleive for some people but true. I know everyone is different and some might struggle more than others but there can be light at the end of the tunnel. Hagg.

Thanks for the words of encouragement Hagg-it is the first time I have spoken really to anyone else, who remotely knows what it feels like-And who is around my age!
Most of the time I am quite an upbeat person, but I've noticed that over the past few years especially I always am aware of this deep seated anger in my stomach-and it erupts incredibly quickly and without warning. I think it's because I had tremendous trouble when I first moved back to Hertfordshire where health care profesionals were concerned. I ended up having to find out what services were available and refer myself-this was while I was teaching myself how to speak properly again and all sorts!
I often felt like I couldn't win either-if I was too nice and submissive I never got my phone calls returned. Then when I would lose my temper with them and be leaping around like a tazmanian devil I would be labelled very aggressive!! Did you or anyone else have this sort of thing happen? I can laugh about it, especially when I read it back to myself here as it seems-well, laughable!!!

Ant,

It sounds as if you have had a hard time of it. Welcome to the forum, you will find that there are loads of people here who have dealt with similar problems to yours.

My personal experience of radiotherapy is that it burnt a huge hole at the back of my throat. Although it appears to be a less invasive procedure than surgery, it is intended to destroy the cancer and surrounding tissue, and you might have had just as much scarring from this. It took months before the bleeding stopped and the area started to heal.

We all have our personal hangups about our appearance. I recently had to have a passport photo taken, and although I don't have any visible scars I am very self concious when it comes to photos, as my jawline is uneven and still swollen on one side, and I also have huge dark circles under my eyes caused by the chemotherapy. There is a fabulous article on recovering from cancer - Dr J put a link to it on this site - which helped me understand the phases that you go through, emotionally as well as physically. This article says that for most illnesses you go to a doctor, and they make you feel better, for cancer you go to a doctor with what feels like a small problem, and the treatment for the cancer makes you feel much worse.

Hope someone here can offer you some useful advice.

Jenni

Hi Ant,

I can relate to a lot of your comments. I was 26 when I was diagnosed exactly a year ago with a tumour in my tongue. Fortunately, I have a wonderful team, including a consultant I completely trust, a very caring Macmillan nurse and a speech therapist who has been my rock. I felt like I was given all the information I wanted and needed and I knew surgery was the best option for me. The tumour was removed and the tongue reconstructed with skin and muscle from my thigh, but the reconstruction failed so I have been left with my remaining healthy tongue. My lips have been unaffected and the incision for my neck dissection was very skilfully done, so I don't notice the scar on my neck too much. However, kissing for me is also an issue (at least certain types!) as I can't extend my tongue. I imagine that for the older patients it is not really a big deal, but being 27 and single of course it is for me! Having said that, I hope that any guy I meet in the future worth having a relationship with will be able to see past the scars and poor kissing technique - remember there are a million other ways of showing love and affection! Hopefully people will be able to see that I am determined to live life to the full and that is always an attractive quality. So my advice to you is not to hide your light under a bush (some wise words from my speech therapist!). The more you get out and about, the easier it will be. All the best.

Hi Ant
Know what you mean
i was not told this time about all the effects of Rt

Have not been able to kiss my wife properly because of the surgery for 9 years

That really hurts

Regards
Dave

Hey Ant...
You've come to the right place to vent all those pent up feelings and emotions!
I too would have apreciated it mre if i'd been given the whole truth. I'd have preffered a worse case scenario - and then anything better would have been a bonus!
It wasn't until part of the way through R/T that i was told it would be unlikely for my saliva to ever come back. & everything seemed played down.
I think alot of doctors just see us as another patient. Where as for us, this is our lives!
Some day i'm sure you'll find someone that can apreciate you for who you are and what you've been thrugh. & i can totaly understand you wanting to get some kind of confidence back.
In the mean time... We're always here if you need a rant!

All the best to you,
Michelle

Ant, I only had reconstructive surgery because I spent 18 months trying to make people understand me and getting nowhere. I was fed up with hospital and definately didn't want another op but felt I had no choice.
I still smoked for a while after my initial treatments and one dr told me that I'd lose most of my face and never kiss my wife again if I carried on smoking. He nearly got knocked out. It might have been true but (in my opinion) it's not the sort of thing you say to someone who's recently had a cancer diagnosis.
This disease is a bitch but hang in there and kick its ass in to touch. Hagg.

hagg ant
after reading about your ops i feel like cancelling mine next monday , what is going to become of me do i need the phantom of the opera mask makin now or what i hope they give me a dam good pre med or i will be off, jokin aside i am shit scared not bothered about kissing ever again just to be there for my kids and husband kev

Bev,sorry if the conversation is putting you off. As you say,as long as you're there for your family,thats the main thing.
Its only natural to be shitting yourself with the unknown and obviously there will be trying times ahead, but with good support and a caring health team you will do ok. It's just out of order that there are such diseases in the first place. Good luck on Monday. Be strong. Hagg.

Hope I am not teaching my grandmother to suck eggs but did anyone listen to radio 4 9am this morning, 'Between Ourselves'. Two passionate doctors were talking about innovative reconstructive surgery. One was called Jatin, didn't get his last name, the other one Ian Hutchinson who also runs a charity 'saving faces'. From what they said they could be of great assistance to a lot of you guys, Bev, Paul, Ananath (according to Jatin you could be drinking a cold larger) SusieR (if you are still tuning in) I think it might be available on pod cast on the BBC web site.

Angie

<<I imagine that for the older patients it is not really a big deal, but being 27 and single of course it is for me!>>

Why would you think that? Older people like to kiss just as younger ones do and after all we have been doing it far longer so know what we are missing!
I'd like to say for 5 years I have considered it a big deal! Gradually the ability comes back, but it's like eating food it's never been quite the same pre treatment.

There is no doubt even if you have the least possible treatment there will always be some long term side effects. Having the treatment is a chance we all take and I suspect most of us would grasp that same chance again even with the side effects we know about.

But Susana I do understand how nerve inducing it must be to even contemplate another relationship. Even if I were in the market so to speak I would I think it would create a mental barrier and withdrawal from possible intimacy. I wish you good luck and am sure you will find someone who is every bit as kind as my husband has been and as some of the partners in this forum must be. You are correct there are men who can look beyond such difficulties. My husband says he never notices the red veins for example. I'm not sure how anyone could miss them, but we have to know people see more in us. Love breaks the barriers and you will find there are people out there who will be drawn to your positive personality.

This message has been edited. Last edited by: PaulineT,

Hi Everyone! Just wanted to say a BIG thank you to you all for posting back with some very good advice/reassurance. I am seeing my consultant tomorrow morning, so will be hammering out a few things with him and hopefully getting some answers! I will also be discussing with him the next stage of plastic surgery I can hopefully have-then at least that part will be over and done with!
Alot of people I know find it hard to understand why I would want to put myself through more surgery-Ive had alot of comments also from people I've only just met that don't think there is anything wrong with the way I look, and if I had'nt told them what surgery I'd had (such as my left forearm now being in the bottom of my mouth !!) they would never have guessed.
Even though this has been reassuring sometimes, I don't think people who haven't been through any sort of facial trauma can really understand (through no fault of their own)the sheer size of the psychological impact it can have on someone. I'm also left with the impression from some people that I am being vain. What i say to people like that though is: "Look in the mirror at your face today, and then try and imagine what it's like to not recognise yourself anymore" I also have said all along that it's a sad fact that all of us, in various degrees make assumptions and judge people on when we first see them-it's human nature. This is why it's always been important for me to get my face back to as near as is possible to the face I was confident with.
On saying all that though you'll be pleased to know that 90% of the time I am a really happy and lively guy! The confidence has slowly been returning and each day I always try and achieve something new-and one day I hope that I will be sharing that with someone special-as Susanah said earlier in the forum-hopefully their will be someone out their that sees past the exterior and sees the attractiveness inside!
Will post to let you know how I get on tomorrow with the consultant, and thanks to you all again!!

Pauline,

Apologies for my ageist kissing comments! No offence intended and of course you are right that it affects people of all ages. All the best tomorrow Ant.

Goodness not offended just glad someone here is brave enough to inform everyone that reads silently or lurks that kissing after the burning of radiation can be well - 'less' as well as 'less than satisfactory'. I think the radiation destroys sensory feeling in the patient's mouth. My husband says he has never notcied any difference. But for me it was there for a long time. Much of the feeling has returned, but it's taken for what seems like forever. I have yet to find a medic interested when I turn the conversation toward it. Are they embarrassed or feel it's of minimal importance to wish to kiss if you are alive.
Fortunately there have been sensory feelings left elsewhere - thank goodness for small mercies!