Hi all,

I am Avinash and i am from Mumbai, India.
Facts about Oral Cancer in India
1.India has one of the highest incidence of Oral cancer in the world. The high incidence of oral cancer and oral pre-cancerous lesions in India has long been linked with the habit of betel quid chewing incorporating tobacco.

2.Oral cancer ranks number one among men and number three among women in India. Oral cancer constitutes 12% of all cancers in men and 8% of all cancers among women.

3.Oral cancer is a major health problem in India. In India it is estimated that among the 400 million individuals aged 15 years and over 47% use tobacco in one form or the other, there are many interesting forms of tobacco use in India Annual incidence rate is estimated to be 64,460. However total number of cases at any given will be 2.5 to 3 times higher than this number

4.It is unfortunate that so far no proper epidemiological data on this disease is available in India. Information currently available is mostly on the basis of crude incidence rate available from three metropolitan cities(probably Mumbai Delhi kolcutta) covered under National cancer registry project.


The awareness about oral cancer is very low here mainly because people here dont tend to listen unless its thier own problem .
Also because most of India is rural they lack proper education, hospitals and also because they frankly cant even afford proper hospitalisation.

When my father got this dreadful desease even i paniced cause of lack of information , but as i went thru net i got alot of information specailly through this forum.
Ironically though i didnot find any forums or groups from india for OC. being the highest number of OC patients here , this was ironic.

So, i would like to spread the message here in India, create awareness ... also help people who need help starting from basic information as lack of information causes panic.

So i would like to get suggestions as to how do i start.
Any suggestions or coments are welcome.


Finaly,
Hats off to Brian Hill ur efforts and ur initiatives for OC is truely inspiring.
Hats off to people of this forum who are so helpful to all who need help.

Hats off to you Avinash and I'm sure Brian will give you tons of valuable info. I wanted to do the same thing when I found out my OC was caused by HPV so I contacted the most popular local newspaper and got a great article written. I contacted every local TV station and got on 2 of them. I also got on 3 am radio shows, one of them had me on 2 times. I also was invited and did testify before the Florida House of Representatives considering a bill about HPV. I have also tried to get some national shows interested to no avail but I have received a lot of feedback locally from my efforts and have touched many local lives so this may be a starting point for you as well.

Make a lot of noise and someone will hear you, especially if you make them understand that it may very well happen to them or someone they love.

Thanks David, and its amazing how you have done so many good things. Spreading the awareness is a major issue here in India and you have done well there, once my dad recovers from his weakness and after the CT scan next month, i would contact local news papers here lets see wats in store.
Till then i wld like to spread the awareness will try to get in touch with Tata Memorial Hospital which is the biggest Cancer hospital in India(for that matter Asia).
I would also like to know if OCF can be started here in India ?altough it sounds abit too optimistic but lets see what Brian has to say.

Thanks again David.

I went through the Tata Memorial Hospitals web site and found that there are no support groups, but a person can volunteer to help ppl/patients there.
Volunteering helps but its not wat am looking at, I/WE need a support group here in India. People dont know much about cancer except tat tobacco causes it. i bet if asked does anynody know about HPV and nobody will.
I just asked some of my friends in office(I work for Lehman Brothers some of you might know this bank) about HPV and they also were surprised to hear such virus exists, cause they thought its only cause of tobacco and if " I dont smoke or drink, So No Cancer !

Avinash,

Don't think that the public in the U.S. is any better educated than in India. I discuss oral cancer with all of my patients. Most have never heard of the connection of HPV with oral cancer. Many have heard of HPV because of all of the advertising about cervical cancer and the vaccine, Guardasil. I am hoping that Guardasil will soon be approved for boys and then the advertising will have to include the connection to oral cancer. Maybe this will make the public more aware!.

Good luck in getting something started in the way of a support group. I applaud your enthusiam and I wish your father good luck in his treatment.

Jerry

I agree ..the Public here in the U.S. is no more educated on the subject. I Never smoked and Mine was NOT HPV related and so many people I talked to had never heard of it . If by any chance they had it was only due to tobacco use . That is even some Drs here. Alot of them wouldnt even acknowledge the HPV factor. SO raising awarenss is Key all over the world !!!

^^^ yes raising awarenes is the key , and you have OCF there, but here in india we dont have anysuch forums or support groups.
Just recently we have one more member from INDIA who got this site after some heavy search. he has his surgery today.
he had alot of questions and we all helped him with atleast some of his answers.
So am just looking at a support group in India and there a lot of difference in treatment nad other factors here in India than in US.

Thanks all ! Any advise is higly appreciated

Avinash,
idea for a support group of oral cancer patients in india is excellent.i am oral cancer patient and was unable to find such a support in india .let,s do something some efforts for oral cancer survivours in india

^^^ yes i kno wat your saying , same goes with another member from Hydrabad whos just went thru surgery.
Anyways whr r you located and can you please give details about ur cancer ?

Avinash, thanks for this post! OUr papa is now diagnosed with OLP (oral lichen planus) and oral tongue cancer and is in new delhi and I am here in michigan usa trying to find a good team of docs for him. I have seen other people with lichen planus symtoms in their fingernails in india and i bet this is a pre-existing condition that also contributes t the high incidents of oral cancer because it is also in oral form most of the time too. i have sent you a PM to please respond with any help about getting some good docs for papa. since he has lichen planus we have also though seeing a dermatologist with olp specialty would be good but he has his surgery this coming week so time is of the essence.

tasha