Hi Paul
So sorry that you had to find us, but we are not a bad crowd LOL
Sorry that your job has negative vibes at this time but for everyone you hear about a 100 walk on the path of life, maybe with some twists and turns, and a few rocky places to pass, but they walk the walk and so can you. It will be hard but you will fight and claw your way there...
So stay with us, and when you have a new question, post it. Someone will have walked the road before you..
Sunshine... love and hugs
Helen

I thank all of you for taking the time to reply. My first task is to prepare for my first consultation with a radiation oncologist. The appointment is set for Thursday July 14. I have begun to read the vast number of messages on this board but any quick advice would be appreciated.

Paul ...take your wife ,and lots of notes. or even record what the Docs are telling you.
Have you checked into IMRT ? A lot of the guys had that and do not seem to have suffered as much with salivary gland destruction. Of course the other side of that is, the wider field radiation may find any loose cannon cells out there . Not exactly a technical term !
We have a lot of very knowledgeble members in here who will be able to guide you , I am sure you will be hearing from them soon.
Take Care
Marica

Paul,

Here are a few areas the radiation oncologist should cover (and you should ask about in any event):

1. Dental issues -- Since radiation tends to make your teeth and gums more vulnerable down the road, your doctors may want to deal with any existing dental problems now to get them out of the way. However, if anyone suggests pulling a number of teeth as a "preventive" measure, I'd be skeptical and get another opinion. FYI -- 16 years after radiation, I still have all my original teeth.

2. Nutrition -- The effects of radiation can creep up on you (frequently somewhere around the midpoint of treatment, if not sooner). Dry mouth and increasing soreness in the lining of your mouth can making eating very difficult. You should have a nutrition consultant readily available to help with any specific issues you may encounter, and if you need a PEG tube to help with feeding, your doctors should be prepared to give it to you. In the meantime, I'd suggest "bulking up" a bit in anticipation of this. There are many suggestions on this site for a variety of foods that are easy to swallow (and fairly high in calories) to help you get through the radiation phase.

3. Saliva issues -- For the long term, you want to preserve as much of your salivary function as possible to help with eating, speaking and overall dental health. As Marica mentioned, it's possible that your doctor can use IMRT, which is a form of radiation that can lessen the permanent effect of radiation on salivary glands. However, even if you find that IMRT isn't an option for you, there are various medications that can help to counteract the dryness problem. I had a number of salivary glands removed during surgery, and IMRT wasn't even available when I had radiation, but over time I've been able to get back a reasonable amount of saliva with medication.

4. Fatigue -- It's impossible to know in advance how your system will respond to radiation. Some people find that they can continue to work (at least part-time), while others find it really disabling for some period of time. Ask your doctors about what they've seen with patients in situations similar to yours, and try to have a plan in place, in case you need it, with friends/family who can help with errands, etc. during your treatment.

This list isn't all-inclusive, but it's indicative of some of the issues you should plan to discuss. Please keep us posted on how your consultation goes, and what your doctors are recommending for you.

Cathy

Paul,
I would add to the advice that Cathy listed to ask your radiation oncologist about amifostine, a medication that can sometimes preserve salivary gland function, although nausea appears to be a strong adverse effect.

You didn't mention if you would be receiving chemotherapy with your radiation. Recent studies seems to show that this is a more effective treatment. See, for example, in the news section:
http://www.oralcancerfoundation.org/news/story.asp?newsId=826
and
http://www.oralcancerfoundation.org/news/story.asp?newsId=809
and
http://www.oralcancerfoundation.org/news/story.asp?newsId=768

Good luck with your consultation and best wishes for a successful treatment. - Sheldon

Hi Paul,
Well I wasn't going to brag about this since there has been so much bad news on the board recently, but I just celebrated my 4th and 8th cancer free anniversaries on July 2 with a delightful dinner. Since you wanted to hear from a survivor, I thought I'd check in.

If you will note from my signature, they never found the primary the first time and the second, while SCC, was not related. Yes, we can survive this and I truly expect I may have another reoccurence, but I will deal with it when it happens and not worry about it until then.

While cancer may make you make financial and other long term decisions that you had not been ready to make as yet, it should not control your every waking moment until necessary. Regardless of the diagnosis, it is important to have a will and a living will while you go through treatment.

At this point, do you damnest to beat this disease. We are all pulling for you. Don't ley your job get you down.

Take care,
Eileen

Hi Paul,

Welcome to the club nobody wants to join!!! Glad you found us though. You won't find a more informative site on oral cancer than here. Alot of the above posted replies are sound and I don't want to repeat them.
I can tell you that this is a beatable diaease. Many of us have been around a lot longer than predicted. A good positive attitude has proven to help along with all the information you can glean from this website.
Use the search engine at the top of the page, just about every topic on oral cancer has beem discussed in the past. This knowledge will empower you to ask the right questions as well let you know what to expect during treatment.
You can beat this just like so many other members have. The road ahead may be bumpy for awhile but soon you will see some light at the end of the tunnel.
Remember to measure your progress in weeks not days. Radiation is the gift that keeps on giving. When radiation ends you may feel worse for two or three weeks. After that you will start to feel better.
Are you being treated at a comprehensive cancer center that sees alot of what you have? If not I would recommend a second opinion at one. You want to throw everything at this the first time. It can be a most unforgiving diaeae.

All my best to you and your family as you start on a journey you never expected to be on.

The main goal of Brian Hills Oral Cancer Foundation is EARLY DETECTION!!! We hold fund raisers to help defray some of the cost of running this site. Brian and Ingrid Hill have carried the finincial load since it's inception.
If we can educate as many people as we can we can make a Difference in the survival rates of this diaease.

Best Wishes, Danny Boy