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Joined: Oct 2003
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Joined: Oct 2003
Posts: 1
Hi Everyone,
Before I get to my questions, I should briefly explain my situation b/c I'm rather bizarre.... I was diagnosed with stage 4 tongue cancer at 21 (actual final diagnosis Stage 4 T4 N3 M1) while on a school exchange in Charleston SC this February. I am a non-smoker and do not drink. I have a # of connective tissue diseases that run in the family and know I have 2 of them. I had my first surgery in SC in March (we did NOT do a functional neck dissection) and then came back home to Toronto to start radiation. Then we found the cancer in 4/5 lymph nodes in my neck, stopped radiation and did a radical neck dissection in May. Just an FYI, a PET scan I had in the US was clear 1.5 weeks before we found advanced cancer in my neck via a needle biopsy... thus I will always believe MRI's are the scans of choice for this type of cancer.

I've been through tons of treatment and have reacted very strangely in a bad way... i.e. my doctors have never seen blood levels stay so low for so long after chemo finished and although I finished radiation 4 months ago I have not healed at all which makes my doctors think I have Lupus (like my Mom) and they are booking me to see an immunologist. I'm struggling to get my life back on track. I have something that appears to be recurrent cancer on my tongue again - I go for a biopsy Nov. 13th when my tongue is better healed from treatments. I love life too much to let it go....

Here's my question for any experts out there.... I understand the HPV may trigger cancer in non-smoking young people... but how? How does it affect the cells? I know this type of cancer is very agressive with a high recurrance rate. I want to understand as much as possible in order to be as proactive as possible. I suspect I am missing a piece of DNA and that may be another cause for my cancer at a young age.... are there any alternative treatments other than surgery, radiation and chemo that you can suggest? At this point I'll look into anything.

Thanks for taking the time to read this posting.... look forward to hearing back from some of you.
~ Jen smile


Two surgeries; tumor removal and a radical neck dissection, high dose chemo (cisplatinum and 5FU) and high dose radiation (daily for 8 weeks) - here I am baby! 22 and loving life (except on the days I feel like crap). :o)
Joined: Jul 2003
Posts: 1,163
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Joined: Jul 2003
Posts: 1,163
Hi Jen,

I'm no expert but you seem to have a good grasp of your condition compared to most of us. I will wish you all the best and hope you can survive your cancer, There will be alot of people on this forum pulling for you. Dan


Daniel Bogan DX 7/16/03 Right tonsil,SCC T4NOMO. right side neck disection, IMRT Radiation x 33.

Recurrance in June 05 in right tonsil area. Now receiving palliative chemo (Erbitux) starting 3/9/06

Our good friend and loved member of the forum has passed away RIP Dannyboy 7-16-2006
Joined: Jun 2002
Posts: 206
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Joined: Jun 2002
Posts: 206
Hi I to wish you luck. I had tongue cancer in my thirty's in 1989 did not smoke or drink. Had a smoker on a bookmobile smoke in my face all the time and the docs think that's what did it. If you want someone to chat with let me know. I now have neck pain due to nerve endings trying to come back. Hope all goes well for you?
Cathy


Cathy

SCCA Stage IV diagnosed 01/90
base of tongue with 1/2 removed.
With neck resection, radiation and chemo
Joined: Mar 2002
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First go to the main body of the web site and there is an entire section on HPV along with a link to tons of scientific articles on the mechanisms of its association with oral cancer. Actually this virus is the primary cause of 95% of all cervical cancers and it has been studied at great length. There is also an excellent lecture link by Dr, Maura Gillison who is one of THE authorities on this subject. In all cancers there is an alteration of the genetic code of the cell (also discussed in the main site) caused by some outside factor, chemicals, radiation, viruses, whatever. It would appear that in many instances including HPV, a particular gene, p53, which is responsible for apoptosis, or natural cellular death, becomes defective during a mutation caused by one of these agents. Apoptosis, or cell suicide if you like, is a normal process by which the body replaces cells on a regular schedule, and also kills off ones which it recognizes as defective in some way. Without p53 which controls this, the cell becomes immortal, which is essentially the most basic definition of a cancer cell. With this natural mechanism gone, the cell replicates and the daughter cells carry the defect with them, until there are enough to form a group, or tumor. This is a very simplified description of the process, which has been an area of great interest to me, as I too had none of the conventional risk factors for oral cancer, No tobacco, no alcohol. I wish you well in your treatments, and in your search for answers. Just remember that the reasons why right now are not important to you. The only thing that you have to focus on right now is making good treatment choices, and fighting the fight. Why is essentially an academic issue. We


Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.

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