Hi everybody,

My mom (Barbara) is just ending week four of her six weeks of radiation. She stopped chemo after the second week because they said the radiation was doing the job on its own judging by all her sores. She finally started taking the pain killers and went to fill her perscription for the patch. She just saw her ENT on Tuesday and we asked him some questions on staging etc. and if this was a reccurance or an occult cancer. He said it was a reccurance and since she originally started out with the lukeplakia (for the past 10 years and it only became cancer in 03) and that she has shown that the cancer has not spread to her lymph nodes that she is a candidate for cancers in the oral cavity and that this is a reccurance and he cannot stage it because it was a reccurance. That doesn't make much sense to me and since my sister saw the original pathology report that she swears did not show a clear margin where this new cancer came up I am still unsure of what he says. I strongly believe they should have done the radiation the first time around considering she has had the lukeplakia for years now so we definately know that just the surgery has not worked for some time because of the fact that it has recurred so often. Does anybody else have any experience with the lukeplakia eventually turning into cancer. It seems like almost everybody else just got cancer and never had this precancerous condition. I'm a little confused any input would be helpful.

Thank you,
Danielle

Hey Danielle,
My husband had SCC mobile tongue and surgery in July/03. About a month later he had a few "spots" taken from his tongue. Turns out he has a very rare disease called proliverative verrucous leukoplakia (no known cause and no cure), but all spots that show in his mouth will be precancer and must be removed. It might have been what he first had before the sore on his tongue got big (didn't get it checked for a while) and turned into SCC. We were trying to find a study for the PVL disease, but meanwhile Dan got a swollen gland and was diagnosed with neck cancer, had a radical neck dissection and now is heavy in chemo/rad treatments.

If I can be of any further help, just let me know. We are praying for a full recovery and will pray the same for your family!

Debbie

Hi Danielle,
My dad has had leukoplakia for 10 years prior to his diagnosis in Oct.03 of SCC T2, and now is concerned about recurrance because of the leukoplakia. He just finished 30 IMRT treatments, followed by 3 boost treatments to the lymp nodes. He is to begin brachy therapy March 8th.

I'll be thinking of you and your mom in my prayers.

Deb