Hi
I was Diagnosed with my mouth cancer at 21 years old my daughter was 15 months old and the first thought that went through my mind after the my consultant completed his joke as his ice breaker and began the sentence you probably know with 5 other health professionals in the room and my dearest friend by my side well infact i did know he was about to say one of the cruel words no one wants to say CANCER.My thoughts were not for my own well being and health but for my little girl what would happen 'when' i die it did not bare thinking about but i did and still do even though now 9 months on i am apparently 'cured'

I have scrolled through cancer websites on and off since December 2005 and witnessed on numerous occasions the the wide media coverage given to lung and of course breast cancer sufferers and the more i see read or hear their accounts and personal stories the more i become frustrated i feel isolated i have a disfigured face radiotherapy marks and scar on my face my speech is distorted and i feel like the only 22 year old to have experienced such a gruelling 11 hour surgical proceedure but i know i am one of the lucky ones and must pay tribute to evryone at Guys Hospital London my Daughter and Family but i want to know that i am not alone in the world of cancer someone please respond.

Sorry i did not specify my diagnosis Polymorphous low grade adencarcinoma palate and antrum Meaning a malignant tumour on the right side of my soft palate 3/4 of my soft palate tissue was removed as well as some of the bone it was replaced by soft tissue from my right hip

Hi M < I read your story with sadness. I was relativly young at 40 to have M & C Cancer and its still an onward struggle.
God only knows what went through your mind when they told you with your Daughter so young.
I aam glad that you seem to be recovering well in such a short time and do hope you keep us posted on here about your progress, Also anything to ask us older ones about how we cope diet ect ect

Cheers and keep smiling Paul

You are not alone and that is why this forum exists.... for Oral/mouth Cancer sufferers, though you were unlucky to have been diagnosed at such a young age. However there have been a few patients in their twenties that have come on to the site.
It must have been a harrowing experience for you to go through with the worry of your little girl in the back of your mind. Thankfully you seem to have come through this in reasonably good spirit.
It's understandable to feel a little bitter about the side effects and dry mouth etc as it effectively changes the way we deal with food and are forced to radically change our eating habits.
The point you raised about Breast Cancer, (as well as Lung Cancer) being given priority in the media is often fuelled by high profile celebrities like Kylie Minogue who have had to contend with the disease. Had she suffered oral cancer then this may have given Oral/Mouth Cancer some much sought recognition.
It would seem that dentists are to make more effort to check for signs of cancer in their patients due to the steady increase in cases but GP's also have a long way to go in recognising the signs of potentially fatal mouth Cancers. Quite often, (as was the case with me) people are diagnosed with simple infections or harmless ulcers which can drag on for months, although the patient instinctively knows something isn't right. Time, as we know is a precious element when it comes to getting this right, hence the need for more awareness.
At least you have discovered "the" mouth cancer forum with an experienced collective of mouth cancer survivors from all walks of life.
Top site for discussion, tips, help, and a shoulder to cry on.
Nice to meet you M
Steve

Hi thank you Paul/Steve for your replies and kind words
Thankfully I have not suffered with dry mouth, I can now eat almost normally apart from my loss of appetite and have to eat with a tea spoon this is due to my jaw/mouth not being able to open very wide so a big sandwich with salad is definitely out. It’s a far cry from the days of liquidizing and eating with a baby spoon and plastic beaker I could not even use a straw. The biggest affect which will never change is my speech which is now distorted. I find verbal communication challenging, not because I can’t get the words out but because the pronunciation has been altered due to my altered anatomy. People misunderstand me or can’t here me properly it has got better my speech and language therapist is extremely good oh and of course my subtle, but never the less disfigured face my consultant would never agree to such a term being used to describe me but its true. On the positive I am still here for my little girl who is two at the end of the month.

Hello Melanie

It is always devastating to be told that you have a cancer. Poor you, you must be worried about your little daughter and the future.

Fortunately,your cancer is a low grade slow growing adenocarcinoma. Read SW's story, she had her adenocarcinoma removed surgically 19 years ago and is now over 80 years old and was fine when I last saw here. I hope that cheers you up.

In most cases, PLGAs are salivary gland tumours with limited potential to metastasis and have a good prognosis after local treatment. Metastases to locoregional lymph nodes occur in only 6-10% of cases, but very occassionally cases are reported of the tumour giving rise to widely spread metastases, so it pays to be alert! But don't spend the days worrying about tomorrow, just live each day well. In the first 5 years, you will have regular check-ups with your surgeon. You can ask your surgeon to teach you how to examine yourself. This way if it ever recurs, you can catch it early and treat it.

Your limited mouth opening is probably a combination of scarring/fibrosis caused by the surgery/radiotherapy. You can improve your opening by exercising your mouth opening daily. Please see this post on Trismus Problems.

Mouth cancer patients suffer greater owing to various disabilities like facial deformity, loss of teeth, damage to tongue and throat with consequent difficulty in talking and eating in public places. Yet they do not receive the attention and support other cancers invoke. The Mouth Cancer Foundation was set up to provide a voice for head and neck cancer patients, so this forum is yours.

Best wishes
Vinod