What is Mouth Cancer?

Currently, there is no definition for the term 'mouth cancer'. We have used the term ‘mouth cancer’ to mean cancers arising in the head and neck (excluding brain cancers and skin cancers).

"Cancer can occur in any part of the mouth, tongue, lips, throat, salivary glands, pharynx, larynx, sinus, and other sites located in the head and neck area"

As I have got involved with head and neck cancer patients and see the common treatment modalities used to treat them and the common side effects they suffer and support they need, I feel that 'mouth cancer' patients have much in common. Saliva gland and squamous cell carcinomas can both present in the palate and both result in facial deformity and need for recostruction with a prosthesis. Patients with these rarer cancers are united by their similar concerns.

The Mouth Cancer Foundation represents 'mouth cancer' patients and, through awareness campaigns, helps educate the public of the early signs of these cancers and risk factors through 'Mouth Cancer' awareness events. It helps 'mouth cancer' survivors know that theirs is not a forgotten cancer. In the USA, they already have an Oral, Head & Neck Cancer Awareness Week. While the description ‘Oral, Head and Neck Cancer’ is technically more correct, it is more difficult for the lay person to grasp. As such, the Mouth Cancer Foundation sees no difficulties in talking about the head and neck cancers as 'mouth cancers'.
Original Post
I really would appreciate more members giving me their thoughts. Thanks.

The Mouth Cancer Foundation has been representing head and neck cancer patients and has been talking about head and neck cancer awareness all this while. See our website and media releases. So the term ‘mouth cancer’ has already being identified with ‘head and neck cancer’ by the media and the public and NICE. If we leave the other head and neck cancers out of the Mouth Cancer awareness campaign, how do we increase awareness of these cancers when there is no other campaign for them. I don’t think there is room in the year or support for a fragmented approach through of having a separate ‘Larynx Cancer Awareness Week’ or a ‘Throat Canccer Awareness Week’ or a ‘Nasopharyngeal Cancer Awareness Week’. And which organisation is going to do this?
As someone who started on this roller-coaster with a blocked saliva gland in 2004 which very soon turned cancerous, resulting in two major operations to replace my jawbone, half tongue, neck disection etc etc. I was then told the cancer had spread to my head which meant having Gamma knife treatment. Later it had spread to a different part of my head and lungs for which I had radiotherapy. I consider myself a 'mouth cancer' patient, I am still treated by a 'Head and neck' team at the hospital and I spend a great deal of my life raising awareness and raising funds for mouth cancer. I can't even get what's left of my tongue around 'Oral Head and Neck Cancer Patient'!! Please let me stay a 'mouth cancer' patient!

Dr Joshi and his marvellous team have devoted the past five or so years so setting up this Mouth Cancer website - receiving numerous awards and accolades along the way. The blue and white logo is now synonymous with 'Mouth Cancer' and well on its way to being 'up there' with breast cancer as a very recognisable charity.

Maybe I should start a 'Jaw-breaking, head, neck and lung cancer awareness week'!!!!!!!!!?

P.S. What would I do with all the tee-shirts?

Brenda
Personally, i think the term Oral, Head & Neck cancer covers the wider spectrum. & for me it's more relevant.
When i've been telling people i'm doing the "Mouth Cancer" awareness walk they ask "why?? You didn't have cancer in your mouth" & i then have to explain that the treatment for all H&N cancers are similar & we all face similar battles. & i explain that MY cancer is considered an oral cancer too.
I feel the term Mouth cancer is too specific, and although i don't expect a "Nasopharyngeal Cancer awareness week", the term mouth cancer feels a little exclusive & doesn't raise awareness of all H&N cancers.
Maybe it's just me, but i think it's important for people to be aware of ALL H&N cancers. & the point of awareness raising is to get others clued up. Not educate us that already know the terms used. To me, and others i know, cancer of the mouth conjours up an image of a tumour on or in the tongue or cheeks. But the symptoms for other cancers are different and it's just as important people look out for these too. & just as important they know these other cancers even exist!
Soapbox
Anyway, that's just my opinon! Big Grin

Michelle
Hi

I voted originally to keep the current title as I felt comfortable with it.

However following Michelle's post I am reconsidering.

I would not advocate a change of name in any event just for the sake of it, but if we are not reflecting our combined experience to those outside of our personal experiences then perhaps we may be missed by those seeking advice or information about symptoms they would not relate to their mouth per se as suggested by Chelle.

In Dr Vinod's explanation I was surprised that specifically brain tumours was excluded from the forum I had never even thought about that as to me head and neck would encompass in my mind mouth, neck, face, and brain.

When I had my symptoms which transpired to be carcinoma of the Larynx I was referred to the ENT (Ear, Nose and Throat) department of my local hospital, Aberdeen Royal Infirmary, which would excude by definition the head outside of its ears and nose and the mouth other than the throat/gullet. Oral is related to the mouth and dentistry and orthodontics, but may also confuse folk unfamiliar with the purpose of Maxillofacial Units of their hospitals.

On reflection then I am now in favour of the more simplified term of "Head and Neck" cancers which I could imagine to the layman, physician and patient be seen to relate to all cancers manifesting above the shoulders??????? Alan
This is definitely a tricky one. I also originally voted for mouth cancer, influenced by the fact that even if a head and neck cancer doesn't originate in the mouth, the treatment is likely to affect it in some way. Also, as Brenda has pointed out, all of Dr Joshi's hard work has revolved around the 'Mouth Cancer' foundation and so changing names at this point doesn't seem very feasible.

However, thinking about it, nobody at the Maxillofacial unit where I had surgery referred to mouth cancer, it was always head and neck cancer, which is much less of a mouthful - excuse the pun - than oral, head and neck cancer and I think quite easy to grasp. In fact the job title of my Macmillan nurse was Head and Neck cancer specialist not Mouth cancer specialist and all of the blurb I was given to read, like stuff from Cancer Backup, used the term head and neck cancer.

In conclusion, I am in favour of using the term mouth cancer to attract attention to the awareness campaign, as long as all cancers of the head and neck are then included in the campaign material. Hope that makes some sense.
Thanks for your comments and insights.

I understand the problem - we do need to raise awareness of Head and Neck cancers. My feeling is that since we already have a Mouth Cancer awareness week and other events, we should use them as the platforms for talking about Head and Neck cancers rather than start all over again for the individual cancers or the new term 'head and neck' cancer thereby losing the profile and goodwill already created.

If we clearly say what we mean, then the public will understand 'mouth cancers' to mean 'head and neck' cancer. The MCF website already refers to all head and neck cancers and the message board has long had members with the different head and neck cancers sharing much in common.

For those who haven't yet, please take part in the POLL, if so inclined, please post your thoughts.
Trevor and I have picked up that the treatment he is going to be having is likely to have effects on his mouth and although we don't know where the primary is, his initial symptom was a lump in his neck. Following the excision he has had a tonsilectomy and a neck dissection so we relate to his cancer as head and neck, not mouth.
Mind you, we came across this great website as a result of searching in vain for information. Mouth cancer was the closest thing we could come up with and as it's turned out, we've been able to learn heaps from the info posted here. For our experience, head and neck cancers is how we relate to it.
Hope this gives you a view from another angle
Deborah
As i posted yesterday, i went for my second check-up in 7months.
When i left the office Lorraine, a wonderful McMillan nurse,collared me in the corridor.
She told me they were writing a new PEG feeding booklet & would like my in-put. While discussing this, i mentioned this fantastic website & how the collective information on here is invaluable. I told her it was the Mouth Cancer Foundation forum & she said "Mouth Cancer?? Oh! I'd have never have thought of that for your cancer" Banghead
The Sussex Cancer Centre covers the H&N department for a huge section of the S/E & people could benefit greatly from the knowledge here,So explained that it represents ALL H&N cancers, not just Mouth Cancer. She said "oh, i'd have never have thought". So i think that demonstrates that perhaps people aren't quite as aware of the term Mouth Cancer representing the whole H&N spectrum. This frustrates me because many people must be missing out on our support and knowledge! Not just on the PEG feedoing issue. But every aspect of treatment. I hope now she's aware, she can pass on the info to other patients!
Dr. Joshi,
I made sure she was completely aware of it by the time i was finnished! Big Grin
Her & the group of ladies she was with (the people writing the PEG booklet).
I hope you don't think i was being argumentitive! I'm on your side!
& i sing the praises of this forum to anyone who'll listen. I really think patients should be told about these type of support groups when they are diagnosed.
Lets hope she makes use of her new found knowledge!
on the Scan information network ,here in SE Scotland www.scan.scot.nhs.uk you will find the oral cancers under the heading of Head & Neck cancers.
Glad to say that MCF is one of the websites recommended & is described as "a link to a comprehensive range of information covering many issues from preventative oral examination to mouth cancer treatment"
I'd like to see a Tongue Cancer Awareness week. Most of the people I talk to don't know there's even such a thing as tongue cancer. I've even come up with our own ribbon color: raspberry (in honor of that charming noise for which the tongue is essential). Twocents

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