Again, I just discovered this site yesterday and am not familiar with a lot of the details as some of the vets here might be. I don't guess it's necessary to give all details with every posting but I am a base of tongue, stage 3, SCC, and am just over 4 weeks out of treatment. 33 radiation, 1 Cisplatin, and 3 Carboplatin(sp?) along with 3 Toxol. I seem to be recovering as well as can be expected with no complications at this point but am curious about one thing. I am still having discomfort with one particular spot on the right, underside of my tongue. There are time of a strong stinging or burning sensation and it is also to where it rubs against the chewing surface of my lower right side teeth which causes more discomfort when talking. Is there anything that can be done to speed along the healing of this problem or does it just take more time to clear up on it's own? I can eat by mouth pretty good now but I have to try and keep food to the left side of my mouth while chewing to avoid this spot as it will really burn and sting.

Thanks,
Bill

That's pretty normal. I also had burns along the sides of tongue which hurt like hell when the tongue rubbed against the teeth.

This is also the time that thrush will show up so have the ENT check for that as well. That can also cause those symptoms.

Bill,

Those kinds of strange sensations can continue for quite some time. I found that there were lots of nerves that had been temporarily deadened by treatment, and as they returned I noticed stinging and pain in spots that had been numb for awhile. I also found that my tongue stayed swollen for months afterward and therefore was more likely to rub against certain teeth when I talked or ate.

As more time passes, if you find that you do have a sharp tooth that is rubbing and causing problems, your dentist should be able to file it down to minimize the risk of further irritation.

Cathy

Good morning! I just discovered this site, and was so happy to find that I am not the only one that needs to find someone who understands my concerns. I had a Left Hemiglossectomy just this past February 2006. All it was was a white spot!! My local oral surgeon did 3 surgeries over a year's period, and it kept coming back. I guess they didn't know how to identify it locally. When he approached me about doing a 4th surgery, I finally said I need to go to a Cancer Center and went to NYC to the Head and Neck Dept, and they performed a Left Hemiglossectomy!! What a word.

Well now it it August. I sailed past 2 checkups, with various levels of discomfort during the healing. But...now I found 1 white spot again, and it immediately scared me. Should I panic???

My mouth is always dry, (I use Biotene toothpaste and Mouthwash.) My Tongue feels like a snakeskin; cracked and dry. I find certain foods bother my mouth and makes my tongue feel swollen much of the time.

I was hoping for normal. Maybe it's a new normal.

I just read, on this site, about swishing with Green tea. I'm trying it. Can't lose anything.

Nanci,

Welcome to this site. I'm glad you found it, even if it's a bit late in terms of your treatment. It sounds as though you had surgery, but not chemo or radiation -- correct? What did the pathology reports show from your hemiglossectomy as to the stage and nature of the tumor? Is your mouth dry because you had some salivary glands removed during surgery?

Recovery from this kind of treatment can be slow and frustrating at times, although it seems to vary from person to person. You should continue to watch for anything suspicious that shows up, such as the new white spot. Generally, if something like that doesn't go away on its own within a couple of weeks, it should be checked out promptly by someone on your H&N team. Often it turns out to be benign, but it pays to investigate it sooner rather than later.

Cathy

Hi Bill, Jack still has some mouth discomfort and he's 3 months post radiation. It's much better but still there and it's just taking time to heal. Directing your food to the non stinging side helps. He also found he needs to avoid spicy foods as that makes it worse. It's a lot of trial and error in eating but you may want to stick to bland and soft right now, and cut your food into small pieces to minimize the chewing.

Have you tried baking soda and salt rinses several times per day? You can make it up in advance and carry it in a small bottle. I think Jack also had lidocaine gel that he applied to the area for the first 2 months and that helped him. He had magic mouthwash but it didn't do much for him. He carries a small bottle of biotene mouthwash and uses it after he eats because food gets stuck against his gums due to the dry mouth.

It's still early and radiation keeps on "cooking" so side effects continue to develop. We've been told it will take several months to heal after the radiation/chemo combo and we can already see that's true. Jack was frustrated because he just wanted it all over but cancer has a mind of its own and he's learning to be patient - sort of.

My family lives north of Atlanta in Kennesaw, Alpharetta and Roswell. It's real pretty down there.

For NJCONTR - don't panic, but call your head and neck surgeon and let them know about the white spot. There are non cancerous things that develop in your mouth - Jack's got one now - but they all need to be checked out by your doctor. Our surgeon told us don't wait for your next appointment, call when you see anything and let me diagnose it.

Regards JoAnne

Cathy,

I did have surgery and they removed a 1.5 cm tumor from the left side of my tongue. They removed a portion, sort of like a pizza, and pulled it together.

The Dr's felt they got it all and did not recommend further treatments. They did not stage my cancer as it was a very early catch . The pathology called it Benign Squamous Mucosa, Verrucouos Carcinoma. I am not sure about the names, and understand somewhat what that means thru internet research. I feel blessed.

I was out of work 5 weeks, and the The healing is very slow, and yes very frustrating. The Dr's told me it could take up to a year to find out how much feeling I would get back. My speech is somewhat impaired, and much worse when I am tired. The Dry mouth was there before, and is now worse. Sometimes my mouth feels very sore and tongue feels swollen.

I always watch for suspicious spots, but don't want to appear to be a big baby about it.
When I noticed new spots I went to my dentist, and we have been watching it for 14 days, but I just don't feel comfortable with his examination.

He is wonderful, don't get me wrong, but he didn't recognize it the last 3 times either.

I pulled my next exam with the H&N in a few weeks to help me with the anxiety of it all.

Joanne,
Thanks for your reply. I needed that sentence, "don't wait, let me diagnose", that you got from your husband's surgeon. My husband says, "its all OK", but he does not look at it all the time. My family wants to make believe its done, its over and there is nothing to worry about. That is not quite where my head is!!

My best to your husband, as you plow thru these things that come up!!

Nancy,
I had two bouts of SCC tongue cancer, 13 years apart. The first one was very localized and they did not recommend further treatment. In retrospect I still feel that was the correct decision. I had lots of problems when I had to have radiation with the second cancer and I was glad to have had a pretty good 13 years. I used to get some soreness on the tongue and it rubbed on my teeth. As far as getting scared when you see a spot, it was that terminal paranoia as I called it that saved my life. My doctor always saw me quickly and biopsied anything suspicious and we found my second cancer very quickly also. My dr with my first cancer had been reluctant to use radiation if not necessary so that it could be used later if I had a reoccurance and I was glad to have 13 years without the side effects of radiation.
Ilene

Ilene,

I have lingo issues with this site. Please Explain SCC - Stage 1, so I can begin to discuss things like all you professionals.

I am happy to hear you went 13 years without re-occurrance. I was really praying it would not come back at all. Am I crazy to think that? or is it inevitible???

Terminal Paranoia is definitely what I have. It is not always fast to get the Doctor. He just happens to be on vacation, so i had to wait almost a month!!

I am hopeful and prayerful every day. There is so much going on in life, I really don't have time for all this.. Doesn't that sound crazy? How in the world do any of us have time for Cancer or anything near it.

I oversee health issues for 3 80+ loved ones, and don't really have time to be sick or 'down for the count' . I need to do anything to stay healithy, they need me. !!