Hi. I was diagnosed with tongue cancer on 21st Feb. On March 12th I had an operation to remove the right side of my tongue, replace it with skin and viens from my right forearm (flap and skin graft)I also had a neck dissection. I was 19 years old when i had the operation. I turned 20 2 weeks later. Its been nearly 5th months since the operation. I am interested in hearing from people who have had the same operation. I was wondering how they cope with their scars. The scar on my forearm (skin graft) feels horrible in fact when I or someone touches me on this forearm it makes me feel really sick. Also the scar on my neck feels really tight. Im always interested in hearing from people who have had this operation a few years ago and can tell me how their scars look now. I hope someone will be in touch as I would like to to discuss my feelings etc with people who have experienced the same operation as myself.
Thanks
PS I think that this site is brilliant and wish I had found it in the early stages of my diagnosis.

Hello Clare

Sorry to hear about your tongue cancer . You are not in the usual age group that gets these cancers. How did you know something was wrong?

Scars do improve with time. Regarding the forearm scar: Frequent rubbing of a moisturiser over the scar area helps soften it. There are also cosmetic (camouflage make-up, usually only advised later after the skin has healed well) and non-cosmetic (i.e. fashion accessories like a wrist-band, etc) measures you could take to disguise/hide the scar. Same applies to the neck scars. Remember that scars heal with contraction of tissue, so you need to gently keep stretching the affected areas to maintain mobilty.

Please don't feel sick when someone touches your scar - a scar only make you look different. You are still the same person and as beautiful as you think you are . Shelly's posts will inspire and encourage you.

I am sure someone will give you some more specific advice soon.

Best wishes
Vinod :coffee:
(Indonesian :coffee: for the last 2 weeks)

Thank you for your reply Vinod. Your right I'm not in the usual age group that gets tongue cancer. It came as a real shock. I had a ulcer on my tongue over a year ago, which didnt seem to go. I went to my dentist and doctors but they both said it was probably my teeth rubbing on my tongue. After awhile I noticed that most of my tongue seemed hard and lumpy. I went back to my doctors who referred me to the Ent, who lucky took biopsys and found out that it was cancer.

Your advice about my scars is a real help, thank you and I have read some of Shelly's posts and they are very inspirational!
Thanks again

Clare

#K0 the way, did you have radiotherapy? If so, protect the skin from the sun .

The common risk factors for mouth cancers are tobacco use and smoking. More recently, HPV is being implicated. It has been noticed that there are now an increasing number of cases among younger people. You can find out more at the Ben Walton Trust website Do you think any of the risk factors applied to you?

Your story, if you care to write it, would be helpful to others of your age. I could arrange to put it up on the website.

Have a nice weekend.

Best wishes

Vinod :coffee:

Hi

I did not have to have radiation, and none of the known causes such as tabacco use, smoking and HPV apply to me.

Thank you for your recommendation to the Ben Walton Trust. I have emailed Mike Walton and hope to help the trust in someway, fundraising or research. I was particuarly interested in this part about the recent research into mouth cancer "Other factors which emerged as significant in this group were a previous diagnosis of a mouth condition prior to cancer diagnosis; oral lichen planus, oral thrush, glandular fever or any sexually transmitted disease, for example." Do you know anymore information about this?

Clare

Hi again

I forgot to say that I am really keen to share my story, when I was diagnosed reading about people's experiences was a real help and I hope I can do the same for someone else. Please let me know how I can do this? Should I write the story and send it by email?

Hi Clare

Thanks for offering to write your story. I will get Krishan our website designer :geek: to get in touch with you. He wil tell you what he needs.

Best wishes

Vinod :coffee: izza:

quote:

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Originally posted by Clare:
[qb] Hi again

I forgot to say that I am really keen to share my story, when I was diagnosed reading about people's experiences was a real help and I hope I can do the same for someone else. Please let me know how I can do this? Should I write the story and send it by email? [/qb]

---

Hi Clare!

It would be great if you could email me your story. Could you send it in Microsoft Word format? I'll create your section on our website under "Experiences". Have you seen Paul's Story (DB's Story) ? It would be more colourful if you could include any photographs of yourself, places, etc. :wow:

:thinking: If you already have "digital" photographs then just include them in your email. However, if your photos are normal then just post them to me and I'll scan them in.

Email me at webmaster@rdoc.org.uk

I'm sure your story will help so many people looking for answers and guidance, especially during Mouth Cancer Awareness Week in November.

Look forward to hearing from you.

Krishan

Hi Clare

My name is Kelley and I was first diagnosed with tongue cancer in Dec 01 when I had just turned 27. Geez I thought that I was young, I am so sorry that you had to go thru this terrible stuff in your teens. People always tell me that I am a young at heart person (well my sisters tell me anyway & they are 18 & 21!) so if you would like to chat I would be more than happy. Unfortunately I was rediagnosed again last year at 28 and went thru with some pretty massive surgery and radiation. Even though it has been a year I still am not 100% but I intend to be let me tell you!! I am turning 30 in a few weeks so even though the 'C' has caused me much pain & despair nearly 3 years later I am here to talk about it.
Love to you, Kelley ( :

Hi. My name is Russell and im 29 years old. I went thru the op 5 weeks ago and am doing ok but need precautionary radiotherapy. I look at my scars and they remind me that im alive and am proud of them. My neck is tight too but they say its the healing of my neck but i dont quite believe them. The surgeon and his team are excellent but they are baffled at how i got cancer as i dont smoke. I have remained possitive all the way thru apart from being in itu as i thought why the hell did i put myself thru this. I look forward to hearing from you

Hello Russ and WELCOME to RDOC. Thank you for sharing some of you story with us tho I am sure there is a whole lot more to it. So how are you feeling today? Have the set up radiation for you yet? God Bless you for all that I know you have been thru, stay strong tho I also know that is sometimes hard to do. That is what we are here for. You--to talk to us and maybe we can help in some small way, or maybe you can help us as well. I know they are so quick to judge you when they find out that it is CANCER, they asume right off the bat that you smoke or drink...When there are so many cases that that is just not the case. They say that it is the cause of it, how can it be the CAUSE if so many are getting this and they never smoked or drank. EVER. And were not around people who did? They don't know what to say then. I feel for those who do smoke I asume that they are mad to feel like had they not have smoked---they would not have gotten this disease. And that is simply NOT the TRUTH!!!!!!!!! I too had the surgery in feb. of this year..This is my 3rd time with the battle. I pray that we can help each other thru this and all of the others that join this wonderful site...It has been a blessing to me..Always Vicki

Hi

Irradiation of the neck, by itself, produces little or no impairment of function but in the postoperative setting may exacerbate surgically induced limitations of head and neck motion by up to 20%. Physical therapy prevents contractures.

Patients should stretch the affected area prophylactically several times a day.

This practice is especially useful in preventing trismus (limited opening of the jaws). Fibrosis of masticatory muscle and TMJ can result in trismus. Stretching exercises may alleviate this problem. The Therabite jaw motion rehabilitation system provides anatomically correct motion of the jaw to patients experiencing hypomobility of the mandible. It consists of a mouthpiece and lever that exerts appropriate force to increase the interdental gap.

Best wishes
Vinod

This message has been edited. Last edited by: Dr Vinod K Joshi,

<<The surgeon and his team are excellent but they are baffled at how i got cancer as i dont smoke. >>

Russ my surgeons were the same - baffled because I have never smoked and only drank very moderate amounts, and as they said "looked after myself" -I'd had regular smears, BP checks and mammograms etc.

I've tried to think "how" I got this, but never "why".

I've got various theories, including spraying chairs and a suede jacket collar with a stain repellant a year before diagnosis; machine knitting as an evening hobby for about ten years through the 1980s when I passed industrial yarns over my tongue several times a day to enable then to slip into a thread holder more easily; having 2 relatives who died of throat cancer; having had a dental jaw operation where my lower jawbone was cut on both sides; having had a so called benign lymphoma 17 years ago on my clavicle and no chemotherpay; at much the same time having a plum size lump in my neck "cured" with antibiotics; havinga fondness for eating oven charred vegetables; and being in a high fallout area Chernobyl weekend - the list of maybes goes on and on - we all ponder such lists.

In the end I had to stop beating myself up about all the possibilities to have found myself with a disease that offended me because it was so associated with smoking which I loathe as a habit and I blame smokers in general for polluting my atmosphere. Soemtimes when I see people light up near me when I am out I feel I want to shout at them. I hate the way smokers direct their smoke at me!!!

I think at the stage you are at in your treatment you look for answers a great deal, but after a while you will feel a need to move on amd just adapting to a new way of living and eating and thinking.

I do wish you luck and all other people here who have so much to offer to the world.

Clare someone I know who is about 28 had the same op as you November 2002. Last week I bumped into him and he he showed me his wrist and I could not believe how good it looked compared to last year. He said it was no bother now although at the time of his op he found the wrist flap more bothersome than his mouth or the radiotherapy and I know he had trouble just lifting his arm. So maybe you are just going through the normal pattern of things.

Nice to meet you too Kelly and I look forward to reading all your stories. Maybe look forward is not the right phrase - but you know what I mean.

Hello Clare, I am 41years old woman and had exactly same treatment you had (looking forward your full story) & radiotherapy about 6 month ago.

About scar on forearm, it gets better but still ugly for normal life especially in summer. I am using 'tube type' bandage, dyed in beige (by Dylon no.22, just boil it in a pan - easy), cut it from wrist to end of the scar length. Boots is selling 'Scar reduction patch' and it seems reduce swelling well. You can put the patch then put on the tube bandage and it will be very well hidden and protected (the area is very sensitive, isn't it?).

I use it everyday to go to the office - essencial if you go to summer wedding (scar & hat doesn't mix well, I found).

Sounds unimportant compared to other serious comments on this site, I know (sorry!!), but we also have to face normal life & normal people!!

Best Regards to everybody, I am always reading when I have time & getting energy from this site!

R xx

Ryoko I don't think it is unimportant to feel disturbed and physically uncomfortable with your wrist scar.

I think we all know when diagnosed with this particular cancer that it scars the body for many, but in different ways, and if not now mayb possibly later. I feel it is very trivial of me to moan about all the very visible face to cleavage broken veins where I had radiotherapy as I know so many have real scarring symptoms, but as several have said here we catch people sometimes looking at us in an unusual way and it is alarming and disarming.

There is nothing wrong with preferring not to have that scar or skin discolouration so please don't think it trivial as our mental perception of ourselves and self esteem is important. You are quite right we have to live in the real world and it is natural to try to want it to look better and feel more comfortable.

Your idea of using a skin coloured bandage to cover the area is very good and I'm sure lots of others with such a tender area will welcome that idea and the scar product information.

But I do understand where you are coming from - I haven't moaned about what I once thought a less than perfect body since knowing how it could be cut about in life saving surgery - it's all relative!!!