I'm new to the forum and am seeking help and advice. I am an oral cancer survivor ....and so happy to find this site. It is the best!

My cancer was and is still considered an "unknown" oral "very agressive" cancer located in my "chin". Yep in the chin. After 6 months of extensive testing and doctors and biopsies on various body parts, the decision of the second, third, fourth, fifth, sixth and seventh opinions all agreed that it was unknown, agressive, and could not be located in my chin (even though it was). It could not be the primary (not in my chin!) so therefore the primary had to be located somewhere else. After months, the hunt ended for another location and the chin was considered the primary and the tumor remove March 2001. 20+ hours of first round surgery! Glad I was in a comma for 3 weeks and don't remember nothing about the surgery!

I've been dealing with years of reconstruction, implaint problems and removal, radiation and horrible mouth sores, HBO Therapy and more reconstruction due to bone loss and more skin grafts and more reconstructions. I still do not have a workable prothetic or denture that is comfortable or usable. My lips cannot come together, I have constant dry mouth and food sentativities. With that said....I am doing fantastic...it is truly a mircle that I can walk talk eat and be somewhat normal,considering all of the repairs and donated parts! Absolutely amazing technology and incredable doctors. Also such a grounding experience to have such basic human functions taken away and then be given these life gifts back (talking, eating, tasting, swallowing, breathing with a tube, walking, use of arm for writing and feeding self, etc.)Definately much to be thankful for.

I have had no test such as a PET scans since the tumor removal from my chin in 2001. Only chest x-rays and a panoramic x-ray annually of my mouth. Should I be getting some type of "other" scan done on a regular basis? Especially since this is considered unknown cancer shouldn't more scans be done a a regular basis or does a chest x-ray and blood test show evidence of ??

Mine is a great story with a fantastic dentist who is a true lifesavor. Any suggestions or info or wedsites that might help me with my concerns about reoccurance and prevention would be soooo welcome! I feel so much better just finding such outstanding info on oral cancer in one locations...thanks thanks thanksD!

Happy,

You need more than my knowledge for help and youo will find it on this board. Your story is truly an inspiration to me.

Best regards,

John

Hi,
I had an unknown primary also, with a met to one lymphnode in the neck. Promptly had surgery to biopsy lump in neck followed by neck dissection and 36 XRT rad treatments. My surgeon does not believe in CT scans. RO ran several the first year, I think every 6 months. Never had a PET scan until I got a new cancer in the larynx 4 years later and then I had to request it. I wasn't about to get a total laryngetomy if the cancer had spread to toehr parts of my body.

My point is, some drs prefer not to do the scans and rely on visual scopes. Gary has posted the guidelines which are available on the NCI cancer siteas to how often these are normally done. If you are uncomfortable with not getting the tests, I would ask the dr why he doens't think they are necessary. Usually if I ask mine for one, he will order it.

Take care,
Eileen