Please let me introduce myself. This is my first time in a Forum of any kind. I was thrilled to find a Forum which appears to be so legitimate, factual , sensitive and particular to the topic.I was diagnosed with squamous cell carcinoma of the tongue 5 years ago. It looked like I had survivedit and moved on with my life. Unfortuanately it just returned and I have been through round 2 these past few weeks with a tongue reconstruction, another neck dissection etc. Since I do not fit the profile of an oral cancer patient not being a smoker or drinker and am in generally good health, this recurrence is a mystery to all of my doctors. I don't knkow where to begin to start over again. I don't knowhere to get any good advice as towhat to do now and I can' find anyone who can tell me how to start a program of prevention so that I don't have to confront a round 3. If anyone can give me any advice it wold be greatly appreciated. I've found that my surgeon, although one of the best, leaves me at the end of the surgery to fend for myslelf. What do I do now?
Marianne

Hi Marianne,
and welcome to the forum. I take it they are calling this a recurrence since it was in the original region? If this is a recurrence than prevention is not the issue - they need to kill this thing once and for all. You need to hit this with all they've got.

First, I need to ask did you have radiation and chemotherapy? Many consider that to be the "first-line" treatment for tongue cancer.

Secondly, are you being treated at a Comprehensive Cancer Center? I would take a recurrence in the original tumor bed very seriously, especially after five years.

Third, do you have a medical team- radiation oncologist, medical oncologist, surgeon, etc., and did they conduct a tumor board to thrash out your best treatment plan and options?

Statistically 25% of H&N patients had no environmental exposure such as tobacco and alcohol. They have also found that EBV and HPV can be causitive factors.

Marianne,

I'm glad you were able to find this site, but I'm sorry you needed to be in a position to have to look for it. Now that you're getting over a recurrence, you should not be "left to fend for yourself". From your post it sounds as though you may not have been treated at a major cancer center, and unfortunately this is the type of illness that very often needs the full expertise of head and neck cancer professionals -- not just a surgical solution. All too often, there are microscopic cancer cells outside the main tumor site that are not caught by surgery alone and can survive to cause more trouble down the road.

On the homepage of this site, under the "Other Resources" heading, you can find a list of NCI-designated cancer centers. If you haven't gotten the input of an oral cancer team (surgery, radiation, and chemo doctors), I would urge you to get to one of these that's reasonably close to you.

In a way I'm surprised that this recurrence is a "mystery" to your doctors (and that suggests to me that maybe they don't see enough oral cancers to provide what you need at this point). The fact is there are many people, including myself and lots of the posters here, who have gotten oral cancer without fitting the traditional "risk profile", and the head-and-neck cancer teams at the major hospitals are well aware of that.

There's also a great deal that you can read on this site (beyond just the forum) to familiarize yourself with oral cancer symptoms, treatments, nutrition issues, post-treatment care, and lots of other useful information on the subject.

Please keep us posted on how you're doing as you continue your recovery.

Cathy

Hi Marianne,

my wife is just now having her initial MRI
scans, and awaiting final diagnosis.

I can recommend two other oral cancer sites:

1. the Uk based Mouth Cancer Foundation:

http://chat.mouthcancerfoundation.org/

2. the relevant Acor mailing list:

http://listserv.acor.org/archives/head-neck-
onc.html

Take care!

God Bless!

Mike