Hi Everyone,

Firstly can I thank Dr Vinod Joshi for creating the website and giving everyone connected with mouth cancer whether a patient, survivor, carer, relative a home on the web where we can come together and support and care and discuss all aspects of mouth cancer. I only found the RDOC this afternoon and it's the best news that I have had all week.

Just knowing that YOU are there is very comforting and the RDOC will be, IS a very important part of my coping strategy.

My name is David and I live in the South West.

10 years ago when living in another part of the UK, I had growths on the floor of the mouth. They covered the whole floor. They grew upwards and would after a time burst. They were very painful and made eating and swallowing very difficult.

My Dentist and Gp didn't know what they were and over approximately 3 months I had 3 courses of penicilin. They did clear up but I am left with the scars, for want of a better word, of where they were.

Following this all was well until 2 years ago when the first patch appeared on my lip.
I saw my Dentist and Gp but neither were concerned and didn't refer me to the Hospital.

In January 03 I registered with my new Dentist who gave me an excellent check up and did tests that I had not had before. Needless to say my new Dentist spotted the patch and said that he was referring me to the Hospital and that we should get it checked out. He was very reassuring.

A few weeks later I received my appointment to attend the maxillofacial clinic on Tuesday 11th March, which is how I come to spend almost all my waking hours since Tuesday, 11th March, searching the web for information and support on Mouth Cancer.

I guess that makes my being here a bit premature as, although mouth cancer is suspected, I haven't had my biopsy.

My biopsy will be next Tuesday, 18th March.

It's is likely to be, I guess another 2 weeks following the biopsy before I get the results.

The consultant said that once we have the results that we can discuss the diagnosis and prognosis and discuss the possible treatment options.

The consultant was particularly concerned about the abnormalities on the floor of the mouth. He said that the lip was the most obvious indicator and that what they are testing for is cancer.

What started of as a single patch are now patches and during the time since I registered with my new Dentist the area of the lip affected has doubled in size.

I have lots of questions and thoughts buzzing around the head together with worries, feeling at times scared and frightened.

Once I know what I am dealing with I can fight and prepare myself physically and psychologically. It's the not knowing, the waiting which is difficult.

One of these unknowns that leads to feeling at times very frightened, is that these patches first appeared 2 years ago and have had all that time to spread. Has it spread and if it has where has it spread to I ask myself??????

Due to other health problems I am in pain and do get very tired etc. My health problems are both physical and neurological. I mention this because the pain that I am in, in both legs, hips, back has significantly increased together with pain now in both shoulders and arms which is new for me. I don't want to go off topic and forgive me for my digression. I mention this because whereas before seeing the Maxillofacial consultant I would have put this increase in pain and increased tiredness, lethargy and the spread to my top body to just a bad period or dismissed it, now I am thinking too myself, could this be cancer???? I know that I am crossing bridges and I am trying to just take 1 step at a time, day by day.

I am so relieved that I have found Dr Vinod's website and that I have a place where I can learn about and be with you, who know about mouth cancer, living with it and being able to discuss it. I have wonderful parents who are very supportive and we have discussed it but I don't want too upset or worry them more than can be helped. To be able to talk it through with you and to express my worries and fears especially in this very early stage will help me enormously and I do hope that I will in turn be able to help and support you.

Thank you again Dr Vinod and everyone for reading this. I hope it makes sense.

Take care

Amadeus

Hello Amadeus

Nice to know you found the RDOC website helpful. I hope this website will make it easier for visitors to access the information they need. I would be also happy to hear suggestions on how to make the site better. I hope that this message board will fulfill its potential of creating a community ( )that helps itself.

You are right about waiting and not knowing being the most difficult part. Hope your biopsy on the 18 March brings encouraging news.

Keep us informed of how things turn out. I will be here.

Best wishes

Vinod :coffee:

Hi Dr Vinod,

Thank you for your reply.

It's not long until my biopsy.

Please Could you tell me what happens at a biopsy and what to expect afterwards.
I am sure the Dr told me but apart from taking a sample of the suspect area I've forgotten.

Will they take a sample of the mouth floor?

Have you thought about having a chatroom.

Moderated.

There could be generalised chats -get togethers and other times where the chat would be about a specific area whether medication, treatments or a particular cancer.

As well as being another way of sharing information and supporting each other it would also be a great way, maybe, of cementing the community and making new friends.

I hope that I haven't been too bold, seeing as I only joined at the weekend.
It's an excellent site and very informative.

Thank you again

Amadeus

Hello Amadeus,

You asked
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What Is A Biopsy?

A biopsy is a surgical procedure that involves the removal of a piece of the suspicious tissue; usually part of the lining tissue (mucosa) of the mouth or the underlying bone that has demonstrated possible involvement through the examination process. Fortunately, most biopsies can be carried out in the office setting with Novocain or Lidocaine (local anesthesia) . Upon completion of the biopsy, the harvested piece of tissue, or specimen, is sent to a pathology laboratory for examination where the tissue is handled by a qualified specialist in oral pathology :geek: .

The pathologist will need to process the tissue and then examine the specimen under a microscope. In the majority of cases this tissue processing and examination by the pathologist will require approximately ten days. Great care is taken to insure and provide an accurate diagnosis. Upon completing the tissue examination, the pathologist will send, fax or telephone a report to your surgeon for review. Any questions that the surgeon may have about the report is then discussed with the pathologist prior to the patient returning to the office.

The report provided to the surgeon by the pathologist not only helps in establishing a diagnosis, but enables him to develop a treatment plan that specifically addresses the type of lesion identified in the diagnosis. Small lesions may have been removed in their entirety during the biopsy while larger lesions may have had only a small portion removed, thereby, necessitating additional surgery. In addition, it may have been necessary to place sutures (stitches) at the biopsy site which will need to be removed at a future appointment. In any case, the patient is required to return to the office to review the results of the biopsy procedure and discuss the need for future treatment if that is deemed necessary.
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Let us know your experience today!

Best wishes

Vinod :coffee:

I would like to say thanks to ALL of you for being here basically... i am so scared of losing my dad as i have only built up a good relationship with him for the past few years,( i was a rebel teenager what can i say? ) the thought of not being able to speak to anyone,the feeling that your friends may get bored of you keep going on about it,the fact that they dont really know what your going through is so isolating it's horrible,i am 24 and thought i would be positive and stay strong for my family but when i heard the words cancer i froze,i couldnt speak... just knowing there are ppl out there who share their experiences is great,and reading how cheerful some of you remain is an encouragement. Thanks to all of you.

Dear david....hi there. I too recently found this site and have received some great messages of support. I know what you are feeling just now and the prospect of cancer is indeed,frightening. I was diagnosed with cancer of the tongue and neck in march last year after being treated for months for what my GP thought was an ear/throat infection. In the end i carted myself off to hospital because i knew it was more serious. If your biopsy proves positive which could well be the case then i guess its likely that you may end being treated with radiotherapy as is the norm for head.throat and neck cancer. If this is the case then be prepared for a degree of discomfort such as problems with eating, radiotherapy burns and fatigue which seems to accompany this treatment. If any of the radiotherapy is being directed toward your tongue/throat then you may need to be fitted with a stomach peg for tube feeding which is a temporary measure as your ability to eat may be affected. Swallowing can be extremely difficult. Ive been through this treatment and can tell you that it is very harsh and councelling beforehand would be a good idea. I thought i would ride through it comfortably.... how wrong i was. You need to be strong for it...if it comes to that. Let me know the outcome of your biopsy and if i can help or supply any info,then i will be pleased to do so. Still tired and listless eight months on from mine but throat healing and i'm on the right tracks i think. steve