HI. First, thanks to everyone for their support in getting me this far and my eternal thanks for the creation of this site! I had a partial glossectomy on 3/8/13 and my pathology came back with clean margins and 1 out of 61 lymph nodes came back involved with cancer. That lymph node was encapsulated. (I do worry that there may be more lymph nodes left behind in my neck that they missed. I didnt ask doc how he knew when he had taken enough, etc.) I am thankful that there was only one and that it was encapsulated. Now I have to have radiation. Thankfully without chemo. I have my first appointment with a RO on march 28. I also have an appointment with a DO to determine the fate of my teeth. I am extremely anxious about all of this. I have heard horror stories about mouth sores. I have had my share of mouth sores in the past. I have oral erosive lichen planus (in remission now) and my whole mouth would be so sore that I could barely drink water. It would even involve the front part of my throat and tonsil area. Parts of the top layer of my mucous membranes in my mouth would be gone exposing the raw underlayer. Are the mouth sores akin to this or worse? I'm hoping not worse because that was unbearable! I would get steroids for it although I realize that wont be the case in rad treament. The unknown is scaring me and causing great anxiety. I dont know if I can take it if the mouth sores are any worse. I do know that I can get a feeding tube but that scares me almost more! Dont know what to expect from that either. And my teeth! Do they usually pull most of them and what is the criteria?. I have tried to research and I will know soon enough as I have an appointment with the DO on April 3, but if anyone has any insight now, it would help ease my mind. Anyway I am trying to map this journey that I am on. After the rad tx am I done? I mean with this cancer episode. I realize that the cancer can come back and the percentage is high that it will. And that will be round 2. But as for round one, is this the last leg of the treatment or is there more. What's next? Do they do a final cat scan at the end of radiation and do they do follow up scans like twice a year to make sure it hasnt returned? I apologize for bombarding you with questions! There are just a lot of them! Thank you in advance for taking the time to respond!

Hi Monica

First the disclaimer, everyone is different, but this is what I experienced. I had induction chemo first, then surgery, finally the radiation. The radiation was by far the worst to get thru for me. I did keep and still have my teeth. My tumor was on the right side of my tongue so the mouthpiece was setup to allow beam access with minimal effect to my teeth.

I was one that had the privilege of having the worse case of Mucositis my doc (RO) had seen in a long while. I do not know much about lichen planus but I was in the position of anything my mouth was impossible except the occasional sip of water. So I was grateful for the PEG tube and had no problems using it.

After the radiation treatments are done, you're typically given time to heal before a scan (PET/CT) is done. If I remember correctly 3 months for me, and then annually for the fist couple of years. I haven't had one now since I crossed the 5 year mark.

Kevin

Monica - my son had surgery, then radiation. He did not have a feeding tube and didn't have any teeth extracted and he is doing great now, six years later! We didn't find OCF until Paul was already into his Rad Tx so at the beginning when the docs mentioned feeding tube, we didn't get many details on how long or how it could save a lot of sore mouth problems. I think that if we had known then what we have since learned here, he probably would have elected to get the tube. Lots of people here have had experiences with feeding tubes so if it is needed in your case, I'm sure you will have lots of help and support. Try not to worry about things that "could" happen because they might not ever happen. Try to think about all the things that could go Right! instead. When my son had his first meeting with the RO, they showed him everything and how it would happen and even invited me into the room where he would be. They also invited him to bring a music CD for them to play for him during his treatment or they would play some they had there. I'm sure you will feel a lot better after you meet with the RO. Between now and then you could get all your questions ready. It might help lessen the anxiety if you bring someone with you and another set of ears can help you remember what they tell you. Between now and the 26th, try to keep busy with things you like to do. And let us know how your appointment goes.

Thank you Paul and Anne-Marie. While I know every case is different, hearing your experiences helped. And I am going to take your advice Anne-Marie and try and think of all that can and will go right. I am glad that your son is doing so well and that you are doing well too Paul. I will let you know how the appt goes and thanks for your feedback and interest. As you two have proven, this too shall pass.

Its only natural to be concerned about the unknown but try not to worry too much! Yes, Kevin is correct everyone is different and responds in their own unique way.

Mouth sores can be controlled with rinsing a few times per day with a mixture of 16 oz warm water, 2 tsp baking soda and 2 tsp salt water. Some members have found manuka honey works on the mouth sores. Magic mouthwash will help as well.

As far as a feeding tube goes, think of it as a tool to help you get thru this. Some need one, others dont. Its a personal decision. Some can get away with just a nasal tube. Magic mouthwash will help you to continue eating and drinking. There are always liquid formulas like Boost Very High Calorie drinks to have instead of solid food. Take this as it comes as its too hard to predict what will happen.

We are here to support you thru this. Spend some time reading and educate yourself. An informed patient is a good advocate for themself!

Best wishes with everything!

There are approximately 300 lymph nodes, mostly microscopic, in the neck, and everyone has a different amount, and location of them, so they may never get them all. For oral cancer, it's usually levels l-lll or with lV, that are removed in a modified radical neck dissection, MRND, so there are four other levels, but they remove where the metastases will likely go in the lymph chain for oral, tongue cancer. There are other types of neck dissection that are similar with more or less like a radical neck dissection, RND, selective neck dissection, SND.

Going into treatment with prior or existing mouth conditions, may effect you more than usual, so prepare for that. I'm sure the doctors will explain all the oral care that is imperative, as some were mentioned here.

As far as teeth, any that are defective, have to be removed before radiation, and will need at least 10 days healing before the start of your treatment. Ask about fluoride trays, fluoride rinses to help protect your teeth, as well as mouth guards to protect your oral cavity from radiation scatter if you have any metal dental filling. After radiation, if any teeth need extraction you will have to do 30 HBOT treatments, 20before, 10 after extraction, to help prevent OJN.

I wonder why no chemo, being its advanced cancer, stage lll or IV, but is debatable with some doctors, and may depend on the patients condition. I had radiation alone for that reason. Chemo acts as a radiosensitizer to make radiation work better, anywhere from 2-20 percent or more, depending on the chemo or targeted drug, and may get at any loco-regional or distant microscopic, although. there are more toxicities with concurrent chemo radiation, than radiation alone, so that could be one reason, and or after surgery, neck dissection you were restaged, and feel it's not necessary having bern down graded with TNM.

As far as recurrences, no one knows, but the surgeries look like it was all removed. For now, I would concentrate, and put all your energies on the current treatment, and your recovery. It's hard to be in two places at once thinking about recurrences.

A post treatment scan is usually done after 3-6 months, no later than a year. After that, there is no standard for scanning, other than for an indication of cancer, and depends on the doctor or hospital. You will follow-up with your ENT 1-3 months the first year, up until 5 years, with each year spaced further apart, who will do a visual, palpable and flex scope exam.

Good luck with everything.

HI there an experienced ENT someone who deals in Oral cancer all the time generally knows which nodes to take and has a good idea what paths along which cancer moves. Mine removed 40 and I had one involved but some of it had broken through the capsule. I had chemo with the rads. Tongue cancer is PAINFUL. I had a partial glossectomy - losing about a third to half of my tongue. And the pain difference for me wasn't much. It's just that instead of an isolated area, it's kind of all over your mouth. I was blessed in that I was able to maintain my fluids and nutrition and despite it being bad, I was blessed that it wasn't the horror story I heard about from some people. We are all individuals so everyone responds differently. It was no picnic, but it was doable. I had maybe 3 weeks of real pain. the rest of the time was uncomfortable - but I am not the average. You do lose your taste, and desire to eat. Mucous can become very thick making you gag. Get a good neck cream, and try using flattened club soda to rinse and swallow, it has similar healing properties to the baking soda, salt and water mixture recommended, but this is drinkable where the mixture is not. So you are getting fluids too. They will give you pain meds. There is no reason to suffer, ask for them up front. They gave me a massive bottle of liquid codeine which I tried once and promptly threw up over my husbands car... so I never touched it again. I actually only used magic mouthwash (a prescription available through your rads dr) up until the end of radiation then needed low dose oxy for a week or so - the second week I weaned myself off of it and was fine after that. Some people need far more pain meds, it is nothing to be ashamed of it all depends on your tolerance level for pain. So if you are hurting let them know.

do try to maintain fluids and nutrition it is super important... take care!