Hello

Hello, my name is Helen Sheehan and I am a medical student from the University of Leeds. I am currently working with Dr Joshi in the hope of assessing the use of the internet as a method to support Head & Neck cancer patients. I am currently formulating my plan as this is a huge topic.
Any opinions you may wish to share with me in order to help with my research would be greatly appreciated.
(I will not include any names or personal information in my write up)
Thanks in anticipation!
Original Post
im victor53 /victor brown diagnosed 2 months ag after 5 months of bieng misdiagnosed.
Ive got stage 4 tonsil cancer 3cm plus agiant lemonsized lymphmass 8cm x5x4 i am panning on syarting treatment next week or so 6-9 weeks of erbitux carboplatin taxol then 8 weeks radiation and cheno the 4 weeks rest then surgey.
I im 52 never had a synptom or a sick day.
Just mad because 3 doctors misdiagb=nosed for 6 months then its taken 2 months nfor the overburon cancer doctor to get the ball rolling.
Any way my email is vb53@cox.net anyone can write me about anything pertaining to this head and neck cancer and treatment.
Thanks Victor Brown
Hi Helen
I would be happy to help once you get a clear idea of how you want do it. I joined this site following treatment for cancer of the tongue and it has helped so much to be able to share information with others who have had head and neck cancers. The emotional support is so important.
Good luck
Sheila
Hi Helen, I was diagnosed with SCC in the sinus in 1997 aged 28.
I didn't have a computer until well after I was recovered a good few years later, but I wish I had as I think the internet as a method of support is invaluable.
I joined the forum in 2007 hoping some of my positive experiences would help other people and have made good friends here.
If I can help let me know. Hagg.
Hello all,
My name is Corrina, I've never used a chat site before. My Mum has been diagnosed with mouth cancer. She is awaiting an opertion and they will take most of her cheek away. Apparently the operation us 8 hours and 4 week stay in hospital. I'm so scared I would love to hear some good news experiences. Kind Regards
Hi Carrina, obviously there are some tough times ahead for your mum and the loved ones around her but you can always come onto the forum and get some moral support when you need it. There is a wealth of knowledge here and some very positive stories. Regards, Hagg.
Hi Corrina,
why dont you change the location of your post. Once logged in take a look and press the bit for new discussion and you will find a lot more responses as these may of your questions tend too get lost amid so many responses to the original start of the discussion which in this case is POll.
Its just a suggestion and I may be wrong as well - but worth a try.
Take care,
Ananth
Hello Helen, I am not a caner patient but a carer. I have found this site a place of tremendous support and solace during my husband's illness. I have also been able to communicate with others in the same position as me who I could compare notes with. I really don't know what I would have done without it. I would be more than happy to assist you.
hi helen

anything you want to ask just fire away. not sure if i would be any use to your research because although i have had surgery and am due to start RT next week, my tumours are benign. infact i hope people dont think im a bit of a fraud being here. this site was recommended to me by DR joshi and i have got such a lot of support from it reading peoples experiences and stories. if you think i can help please ask.
Hi Helen

I've found this particular site to be the best support group I've tried. I used to belong to one run by Yahoo, but it seemed to be kind of exclusive to only those people who joined at the beginning. I also tried a "bricks and mortar" support group at the hospital where I was treated (and where I work). I felt like a fish out of water because I was the only one who was not a throat cancer survivor, and I found very little in their program that applied to me. Most of their meetings revolved around pain management (I have no pain), various treatment methods (beyond surgery, I've had none). Twocents It's good to meet other people who've had tongue cancer--I know I'm not alone.

Julia
Good Morning Helen,
I agree with Ananth, you are welcome to ask me anything you wish.
Click on my name in this posting for my history.
I am all too familiar with LGI and Pinderfields and I have an appointment with Dr Joshi in an hour so I better be off.
I wish you well with your research.
Keep Smiling
John
hello helen
i would be happy to answer any questions i am a surviver of two mouth cancers each 9months apart 06 and 07 i have had treatment for 9 years pre malignacy leukaplakia and dysplasia and numerous biopsies and radical neck dissection i was nursing for 22 years in the nhs but have been medically retired due to cancer and all my limitations ie arm palsy due to nerves being cut at dissection i am 46
bev
Hi Helen, a good project under the auspice of Leeds University. I think you will find a quite amazing calibre of people here that have been through all sorts and have a huge potential to help others perhaps less fortunate. Appreciating your posting replies to date, well all I can add is wish you the very best. Same for everybody really.

Nigel
Hi Helen, you can count me in also. I have cancer at base of tongue and have just started treatment of radiation and Erbitux a few weeks ago.

I'm still a 'beginner' in using this site, but so far I've found it to be very supportive and informative.

I do have a suggestion though if it can be done. Maybe you could speak to Dr. Joshi and a new category could be added to the forum for your research. That way the different posts you receive will all be in one place and not mixed in with the general chat area. I think this would be beneficial not only to yourself but to others who would like to be kept up to date on this wonderful idea of yours.

All the best on your venture, Cricket
Hi Helen

I think this sounds a really interesting project. I wasn't sure from your post if you were looking for suggestions from us or if you are going to produce something like a questionnaire to which we can respond to. I am happy to do either (or both!)

I have all sorts of ideas as to why internet forums are so helpful to cancer patients in general and to head and neck patients in particular. Can say more about this if you want, but not tonight as I am too tired, having just got back from a week's holiday.

Regards

Gwyn
Hi Helen (and everyone else),
I'm new to this site but would be happy to help if I can. I was diagnosed and treated two years ago and have used the internet off and on since then but didn't join a forum until now so I don't know if I'd be any use to you.
Good luck with it all.
Dub

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