Paul,

Welcome to OCF -- you'll find a great deal of information and practical experience here to help with what you're going through.

I have to agree with several of the previous posters about going aggressively after this cancer. I also had a stage II tongue cancer with clear nodes, and my surgeons felt quite confident about the margins. Nonetheless, the consensus of the doctors at my cancer center was that I should also have radiation, because of concerns they had about the seemingly aggressive nature of the tumor. I went ahead with their recommendations, and so far the cancer has stayed away for 15 years.

Of course, radiation treatments can have nasty side effects for awhile, but if you do need to have them, you have to use whatever resources you can to help with nutrition, pain management and fatigue. You didn't mention whether you are being treated at a major cancer center -- if you aren't, many of us here would urge you to be seen at one of those so that you can get a comprehensive approach to your particular case.

Cathy

Hi Paul,

Wanted to welcome you and add my 2 cents worth. I was diagnosed with stage IV tongue cancer and underwent a total glossectomy with right and left neck dissection last July. Five out of 53 nodes tested postive for cancer from the right neck dissection, no nodes out of 34 from the left dissection. I underwent 37 radiation treatments combined with 3 chemo treatments of cisplatin. I also had a peg and trach which I'm happy to say I had removed on April 1 of this year. Radiation was by any means a picnic in the park but I felt that I went in with all the amunition the doctors could give me. I remember meeting my surgeon after diagnosis (and scared as HELL)and he gave me two options: they could try radiation and chemo first with surgery afterwards if necessary OR I could have the surgery followed by radiation and chemo. To be honest the first option sounded a hell of a lot better to me but the doctor was honest in telling me that surgery after radiation would be much more difficult. I've only been out of treatment since November and with all I've been through I can honestly say I'm glad with the decisions I made and felt that I gave it my all. Anti-nausea meds helped me through chemo and although I was tired towards the end of my radiation treatments, I still drove myself to them. I was home from work during treatments but still managed to get out and walk a couple of times a day. I obviously can't tell you what's best for you, but for me I feel good knowing I did all I could to beat this ugly monster.

My time is also up on my soapbox so thanks for listening. Believe me when I tell you that everyone here is great and very knowledgeable in what you are and will be going through.

Nancy

Is nice to hear from all of you.Oral cancer is one thing I never gave any thought.I am 44 yrs old,non smoker and now here I am.Am sure I will be chatting with all of you alot in the future.

Welcome Paul!
My hubby had his tongue surgery with an oral surgeon who believed he got clean margins and never even talked about radiation as a possible option. Not 4 months later he ended up with a very aggressive tumor in his neck and even with radical neck dissection was not able to get it all. Fortunately, at that time we were referred to U. of Md and a tumor board, etc. We feel like he has had the best treatment possible now and things are good at this point. Rad and chemo were hard, but now 3 months post treatment, it's going well and Dan can eat some things again. I didn't find this board until after Dan's inital surgery...I would have been so much more informed to ask more questions about possible rad treatments then. Thank God you are so much more equipped to make the right choices. There are obviously no guarantees, but I do believe radiation will help! My prayers are with you and your family.

Debbie

It's your choice totally, but since you asked I would opt for the radiation. You found this site so you won't be alone. So many of us have gone through exactly what you are going through.

Radiation/chemo is no walk in the park, but you can get through it. Since I have been in your shoes, so to speak. I'll tels you what my doctor told me at MDACC. He said If I were a 40 year old woman who got oral cancer with no risk factors I'd be doing everything possible to prevent a local reoccurance. He said if you don't get it all, oral cancer has the tendency to keep coming back locally and you may never get rid of it.

I think a second opinion is also a good idea.

Sorry so long! Welcome to the boards. We're here to help.

Why do you half to lose half your teeth? I wouldn't let them pull mine. Unless your teeth are in really bad shape, I would get a consult with your dentist first. You will have to go the distance with scrupulous care if you decide to keep them. Having an extraction after radiation can have serious consequences.

It took me a good 6 months to recover from radiation. 6-8 weeks is being highly optomistic.
Closer to a year for 95%.

Paul,

I wondered the same thing as Gary -- I don't understand the point about having to lose half your teeth (unless there is already a problem with them apart from what's going on with your treatment).

Before I went through radiation, I heard plenty of stories from the dental people in my cancer center about what can go wrong with your teeth after radiation if you don't follow the regimen they give you. The stories came complete with some pretty nasty pictures. Fifteen years later I still have all my teeth -- during that time I've occasionally needed a crown or a bit of gum surgery (I'm constantly fighting receding gums), but so far it's been minor stuff compared with cancer surgery and radiation.

Cathy

Well I have strong teeth as I have regular cleanings,but I have been told with treatments to the tongue that the teeth have to be removed because they can not hold up to the treatments and can cause a serious bone problem that cannot be cured,only by removing the jaw bone.

Paul

If you have no teeth that are marginal in health, that would mean primarily periodontally compromised in particular, and you are a person with excellent oral hygiene habits, they should not be automatically removing teeth. I have all mine after radiation to the max. The fear is that you can develop osteoradionecrosis (search main web site) if you develop a problem after radiation. The bone loses some of the micro vascularization during radiation treatments, (this doesn

Paul,
they told me the same thing and 15 months post Tx my teeth are still there and and no sign of ORN. Pulling the back teeth seems to be SOP at some treatment centers. I would get a second opinion. Some people consider losing their teeth to be the worst part of the whole experience. The risk of ORN is about 10% and some get it in spite of having their teeth pulled. They just want to avoid liability if you are not in the 90% that don't have a problem.
The ways that doctors are sued these days they have to strongly emphasize any and all risks no matter how small or absurd.
The dental oncologist first recommended pulling ALL of my teeth, then when I told him that it was only the molars they (the radiation oncologist) were concerned with, he changed his tune. I had a panorex x-ray done by them. Then I went to my regular dentist had bitewings, repairs, cleaning and impressions made for dental trays for the in home flouride treatments. I go in every 4 months for cleaning, also use a WaterPik and floss at least once a day. I have had 2 small repairs (fillings) since treatment. It will require a lot more work to maintain your teeth. It may sound crazy but I did much homework on what path to take with this and I opened up the bible to a scripture verse that said "...the Lord will protect all of your bones" - that was what tipped the balance in favor of keeping my teeth.

You need press your dentist for the truth about the real condition of your teeth and also let him know the risk you face if he is not rigorously honest with you.

So many tough decisions - so little time to make them...