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Not being funny but is there something special about mouth cancer? I know people with all kinds of cancers - my parents died both had cancer, my sister in laws and so on. But not mouth cancer. I think there is something very different about it. It effects your eating, your speaking, your looks. You can't hide it likle other cancers.I don't think we should dwell on cancers but it just strikes me that this is something different. What does everyone else think?
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Hi Smiler

I read your question Thinking is there something special about it when I first got told what I had I was like no way, why I do not smoke drink or do or have anything that would relate to having to get oral cancer. But as the days went on and the surgeries and radiation happened I realized that life is too short to think why & how come. I always go back and remember that God does things for a reason and never gives you more then you can handle.I know what you are saying about not being able to hide it. you get people who look and stare but you can always say ya I got it/had it but I am a sirvivor. Big Grin
so yes we are special to be here to talk about it and help and support others.
I hope I did not offend anyone.
Take care
Last edited by mbt
Hi Tony.
I agree with mbt but to an extent. Most cancers are almost caught by the time its reached its apex. Oral cancer is one such which barely gives you any chance for quick realisation as the only thing different you will find is a hoarse voice. You appetite etc, remains the same. You go to a GP and he gives you some antibiotics and you feel it will settle down - however it does not but then you never accept it could be cancer and tend to avoid going to a Specialist. You are too stressed out with all the travelling, presentations, screaming at people or talking for hours on the cell phone. You just do not have the time. However, the cancer is making merry and going in deeper and spreading and by the time it is dicovered its in its last stages. Even then as its not painful you feel that the medication will be a cake walk - after all the work you have put in to reach the top of the ladder. Its only once the treatment starts and after a few bouts with radiation, a sore throat comes around and its time to really start worrying. However as we go along we find that the overall chances of surviving oral cancer is far higher then the other (they called mine the "lucky cancer'!!)

As long as the medication goes well and there are no complications you turn out pretty normal except for a bad tan on the area around the neck. However once there are complications - as mbt say people give you queer looks( there is no reason why you feel you have offended anyone mbt). Some have a terrible time and some- like me get away with the looks being more or less intact but other side effects like shutting down of the air and food passage and have to live on liquids for the rest of my remaining life.

I have noticed people giving mre wierd looks as I have gone from one extreme to another - from the Suave Corporate guy to the long haired, with a stud and always in jeans - and people who do not know my back ground can hardly say I have had the cancer and the battering my body has taken. However this is an one off an example but so many have had so many problems with their tounges, their teeth, - just name it. This is totally visable to the outside world and most are worried about what will people who stare at you say about you? My reply to this has been simple - the people who stare at me are strangers in my life and will not cross paths ever again - so what they see is not material to me. The ones who matter are your friends and family for who you are no different from the person you are pre cancer. And finally when you lie down and think back you realise the war you have fought with cancer and beat the hell out of hit making you a survivior. Do these strangers realise all this - NO. So if they dont I feel one should never even bother about anyone or anything and continue with life as normally as possible.

I am not too sure if I have managed to reply to your question and feel I have not really done so. However, I felt this was an important part of getting over this phobia of what other people will say.

Do keep writing in as you have a fantastic sense of humor and really know how to make things lighter for the over burderned. As I said we will get along like a house on fire!!

Love and hugs,
With warm regards,
I think everyones cancer is special and unique. Unique to the sufferer. Everyone here tells the same tale but with their own unique twist. The same for each breast cancer sufferer, the same for those lucky to survive prostrate cancer or bowl cancer or any cancer.

I can't imagine how it must feel as a woman to have a mastectomy. To lose the definition of what makes you a woman.
A man to lose one or both or his testicles.
The ravages to their body a bowl cancer sufferer faces.

& Head and Neck cancer sufferers have their own complications. We suffer the radiotherapy treatments harder than most because of all thats involved in the line of fire. We have the late detection and the facial disfigurements.

To say we are special though?
I don't know.

We are all unique, and we all suffer. But we suffer differently.

That's my Twocents
Hi everyone
Beem a while since I've been on. Still all clear but gotta go every month for the old check up.
Just wanted to point out I was not saying we werespecial just asking was there something special about this kind of cancer. Guess I meant special in the sense of different to the others. Yes all cancers are unque - even the same ones in differentpeople. As I said I lost two parents to cancer - just not oral. That's my prize.

I think it is special - and reading about the people on this site - I think you are all special. Very special. Okay? Love

Hi, I'm not sure 'special' is the right word - but certainly feel it is different. All cancers change lives and the treatments and after effects are unpleasant but oral cancer affects day to day life, not just because of scarring and fear of recurrence which are issues with all cancers, but because of communication difficulties and problems with eating in a way that most other cancers do not. In my early angry phase I am ashamed to admit that I thought people with other cancers had a better deal, somehow, as they could hide their scars - mouth cancer patients can't do this. It has affected my social life - I no longer meet friends for meals and planning days out or holidays now centres around where and what I will eat.

Also since completing treatment I have never met anyone else who has had tongue cancer - even my GP said she has never treated an oral cancer patient before. This leaves me feeling isolated, it is only on this site I feel supported by people who truly know the effects of this disease, both physically and emotionally.

I think that's right - so few people have even heard of it - even after the campaigns andso on. It's just not mentioned in the way other cancers are. My dentist and doctor had never had acsase before me and hadn't a clue. I was extremely lucky we had a specialist unit nearby.
I think this site is brilliant in giving people a chance to communicatewith people who KNOW - causeven the doctors andnurses don't really have to have ben there to know.
I have read all the postings with interest. I have been very lucky in that my appearance has not changed, but most things 'oral' have. And I have a very sensitive sense of smell and - despite the tinnitus - my hearing is sharp to the extent that some everyday noises actually hurt. I concur with the fact that 'the experts' struggle coping with side effects. They have very set views - such as the creams you can and cannot use; using salt mouthwashes only, despite the fact that bicarbonate of soda is much more effective and less painful (each to his own). This does not encourage the 'victim' to think independently, so every time I go for a check up I write about exactly where I am in the process; what I can and cannot eat/drink, etc. I also agree that outings and holidays have to be planned according to what one might be able to eat. Went to France a couple of months ago and actually took sufficient to survive on. Some hotels were really helpful but I did come across one which considered its cuisine was above catering for eating disorders.
Is mouth cancer special? I don't think it receives as much publicity as it should. Mine presented as a swollen lymph gland and when actually diagnosed was a stage 4 SCC at the left base of my tongue. Too far back for GP or dentist to pick up on immediately. No further symptoms, no voice loss, no swallowing problems, no weight loss, no pain. My neck hurts more now than it did at the time of diagnosis - 15 months on from the end of treatment. It is also special in that it affects each individual in a very different way.
The more we talk about it and get the information out there the more people might be aware of it and the less 'special' it will become.

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