Hello,
I have just been tols that I have T1 oral cancer. This is the 3rd go round for me. The first was cancer on the tongue, then a year later a lymph gland and the muscle on the same side. It has been 7 years since the last inconvienance and now its back. I have kept a possative attitude through everything in the past. However, this time it is more difficult. The doctors have said my only option is to have surgery. Radiation is not an option because I have had that already as part of the treatment for one of the previous go-rounds. The radiation caused many complications and that seems to prevent any further use of it as well.
All the reading I have been doing that past couple of days does not give me much encouragement on a long term survival rate, 5 years at best. I am hoping that someone can tell me this is not true.
Thanks
David

First of all, David, Welcome! You have come to a place where there are many caring, and experienced people. Secondly, take a deep breath. Now, a T1 staging seems like it was caught early and small, which is very encouraging. It seems to me, and I am not a doc, that if it is small and nothing else is involved, surgery to remove this small tumor is just the ticket, and then you get on with your life. Do NOT get caught up in the statistics game, for heaven's sake. What happens to you is the only important thing, not what happens to others with different circumstances. The fact that you caught this new one early means that you have remained vigilant, for which you are to be congratulated. If you read the posts on this forum, you will see that early detection is the key to long-term survival. You are at that point, David, so it is not time to panic. You have a 100% batting average thus far, and you can beat this one too! Let us know how things go for you. We are group of people who all wish we did not qualify for membership, but I have found that fate or whatever determines these things, has placed some very special people here. Let us know how we can help.
Joanna

Thanks Joanna, that was just what I needed at this time, some positive feedback from someone. I guess the surgery has me very concerned as well. They are talking about an airway(temporary), a feeding tube(temporary), speech therapy and changing what I will be able to eat as well as a long road to recovery. I trust my surgeon,as he has done all my past surgery. He is a well respected plastic surgeon that has been working hand in hand with the clinic. But, they are so evasive about giving you answers. They just kept telling me they will not know anything more until they open me up and get inside to see what they are facing. In any of the past procedures I was not as nervous/scared as I am now. I would like to get more definate answers before surgery and wake up after the surgery to a lot of surprises. This may not be at all realistic on my part, but that is how I am feeling.
David

David,
the reason you can't have radiation again is because you have received your "lifetime dose". They always give the maximum amount. If you had IMRT radiation sometimes they can repeat it, if it's not in the same immediate area. Thank God they caught the recurrence at T1. I agree completely with Joanna that you have every reason to have a good outcome. Being a stage III, SCC, right tonsil survivor, I can understand your frustration. My experience was that its a lot more than just an "inconveience" -it's a whole new, unwanted, lifestyle!

I am going to start deferring my answers until Joanna posts hers...she has said it all perfectly. The psychological debris that come from repeated occurrences really wear on people that go through them. But remember that those that make up the poor survival statistics, are the vast majority of the time, NOT T1's. You are catching this at the optimum time to have a positive outcome from the procedures, and a surgery which should be easy to bear given what you have been through already. Ditto my kudos for an excellent follow up protocol, or this may be a different story. By the way, while IMRT is the hot ticket these days in the right hands, (there is a big issue here that I can't address in this post but will add as a permanent part of the site) 7 years ago this was not a choice.

Dear David,
I have to agree with the other posts. You are so very fortunate. You caught this early. Please stay on the bright side. I know this sounds so superficial, but we're all here for you. And we also fight every day to stay positive. My husband was a stage III before we ever knew he was sick. Thank God that you had good doctors who followed you closely. Hold on tight, ok?
Mandi

David,

I can't add much to what everyone else has said, except (that's kinda' like "but") I'll say "give 'em hell"
You have stayed vigilant all this time, which tells me you're a fighter. Sure maybe you felt a bit down and the uncertainty was weighing on you, but (see there's the "but") you must have a strong core or you wouldn't have fought daily for the last 7 years.

I try to remind myself frequently:
"Cancer is a word, not a sentence." You take care, and keep us posted.

Dinah

Hello again, David. See what I meant when I told you about good people here?

You have expressed some concern about a trach, and a feeding tube, aka PEG tube. You are just like everyone else in this regard, but I can tell you from experience that neither of these will be a problem. Do a search of this site and you will find out more information than you ever wanted to know about both subjects. You will see that occasionally some people have problems, but the vast majority of us did not and are just grateful to have had both. In my case, the trach was removed before I left the hospital and healed in a week. The feeding tube was a lifesaver, not only for nutrition, but also to get pain medication in me fast when I needed it. You will read that some people went through radiation with no PEG, which is wonderful, but if you are having mouth surgery and will not be able to take food or medication orally, the PEG is a necessity.

You can do this, David! And we will be here to answer any questions you have.

Joanna

David,

I had sugery on my tongue(1/3 removed)removal of the floor of my mouth and rebuilt, partial removal of the jaw bone, all of my lower teeth on the same side, and a radical neck dissection. Both sites were stage 2 and removed with clear margins. I had a feeding tube in my nose and a trach while I was in the hospital. Both were removed prior to my leaving the hospital one week later. Eating and speaking were painful in the beginning, but I just took my time. Within 8 weeks I was back to work and eating pretty much normally. To this day I have a few small problems, but all is well 2 1/2 years later. You are in the right spot your encouragment and advice.

Take care and hang on to that positive attitude.

Anne.

Thank you everyone for the wonderful words of encouragement. I feel a little more at ease. I have been spending as much time on this site as I can reading and learning. I am so thankful I found it.
David