Hi Everybody.

Thanks so much for creating this forum, it's really helpful to be reading other folks' experiences.

My dad was diagnosed this week with tongue cancer,mid way between his front and back tongue, between stage 1-2. The doctor thinks that it has been caused by friction from his wisdom tooth that has been rubbing against his tongue for almost a year now. In two weeks he's going to get 1/4 of his tongue removed, as well as his lymph nodes. They say they're not convinced that the cancer has spread to the lymph nodes, but better to be safe than sorry. The dr. says he doubts radiation will be necessary.

Anybody out there gone through this sort of surgery at this stage? Also, how common is it for cancer to be caused by irritation, such as friction from a tooth? Does this sort of cause make the cancer less dangerous/aggressive, since it's source is clearly environmental?

We're also very anxious about what sort of long term effects this sort of surgery will cause. Will my dad be able to eat? swallow? talk? The doctor says yes, but we can't help but be worried.

My whole family is pretty much in shock right now, and my dad is scared. He's only 59, just getting ready to retire, and is terrified that his quality of life is going to be ruined.

I'd love to hear any comments, suggestions or words of wisdom from folks that have been through this sort of thing before.

Thanks,

Magen

Welcome to our club, sorry your family has to become part of it. There is a world of information here so poke around and ask alot of questions.

This is almost exactly what happend to me. My cancer was either caused by a rough edge of a tooth not fixed and/or I was a smoker for many years. They removed about 70% of my tongue and nodes on one side. The surgeries I had were difficult, but thankfully no radiation or chemo treatment was nessesary. It was a difficult time, but I am now almost 3 years cancer free. I eat anything I want and although my speech has been effected, it's not horrible. It can take awhile to comes to terms with the lasting effects of this disease and the treatment of it. I think that being greatful for beating cancer can and will help alot.

Hi Magen:

I had 1/4 of my tongue removed in June 2010. There is still a divot on that side of the tongue although most grew back in the first couple of months after the surgery. I was not able to eat anything solid the first week or so after the surgery. The sensation on that side of the tongue is different, eating/chewing from that side is not the same, and the tongue tends to feel a little heavy at times (especially if I've done a lot of talking). But, I wouldn't say that eating or speaking is difficult, or that quality of life has greatly diminished. I can pretty much eat anything and only some words may have a bit of a lisp.

Even after all that I have learned about cancer the last 2+ years, I had never heard of cancer caused by rubbing of the tongue on the teeth until this week when an ENT I saw (on an unrelated issue) mentioned it after seeing my medical history and inquiring about it. That could very well have been the case for me since the oral surgeon who did the initial biopsy thought that is what caused the canker-like sore on my tongue (he didn't even think it was cancerous) -- and since I never smoked, was a social drinker, and was HPV negative. I myself thought I may have been rubbling my tongue on my teeth when I slept since it always hurt first thing in the morning.

My signature line has more information, which may or not be relevant for your dad at this point. Feel free to ask any questions you may have, and you can send a private message if that is your preference.

Tim

Welcome to OCF, Magen. Sorry to hear your father has been diagnosed with oral cancer. There are many members who have no known cause yet have developed oral cancer. I dont know statistics about the odds of recurrence with those patients who have been told it was caused by some type of mouth trauma. The cause really does not change how its treated so I would think it doesnt eliminate the chance of recurrence. Im not one who is hung up on statistics as it can happen to anyone and unfortunately it can return if just one teeny tiny cell gets missed.

Depending upon how invasive the surgery is will determine how your father fares with the side effects. He may have a trach and speaking could be compromised. He may need a feeding tube and have to relearn to eat again. Right now I would suggest he focuses on eating all his favorite foods and then having seconds as eating may be difficult for a while. Especially with spicy food and things that need to be chewed alot.

Even if your fathers eating and speaking arent the same as before the cancer diagnosis he can still live a good life. Many of us have life long after effects and different handicaps due to our treatments but we still make the most of our lives. I have become disfigured but I have turned this into a positive by helping others and promoting early detection. Its all boils down to how you look at things. Some people may look at me and feel sorry for me while others can see that I have a meaningful life, I see myself as very lucky to be alive. Your dad should join OCF and educate himself to better understand whats coming up and how he can get thru this easier.

Wow, Wendy, that's great that you're still able to eat and talk pretty well after having so much removed. This is all so new to us, it's hard to imagine what its going to be like for him once he loses even an 1/4 of his tongue. Thanks for your input!
-Magen

Thanks for the info, TimD.

Most of your tongue actually has grown back? That's interesting... didn't know such a thing was possible.

How long did it take for you to recover from surgery and begin to eat normally? What about your speech...did it take a while to get back to normal? Any side effects from the neck dissection?

Thanks for sharing your story, I really appreciate it.

-Magen

Magen, I wish your father luck and courage. It's great that he has you as his advocate and helper and I admire you for being so caring with him.

I'll let those experienced with it help you with the tongue surgery issue.

As far as a neck dissection, I'm fairly sure we all have different experiences. I'm about 3 1/2 years out from mine and at this point figure I've reached the plateau of how I'll feel from now on. Lingering side effects for me have been the usual chicken neck look and a certain concavity to the left side of my neck as well as numbness under the chin and loss of beard there. In my case too nerve damage has left half of my tongue largely numb.

All of it is a small price to pay for being here and I know you appreciate that too. As others have suggested, even though your dad won't be having any chemo or rads it makes good sense for him to eat as much as he can now. One always loses weight after surgery, especially radical stuff like this.

I think my rather slow return to real food was more a function of the after effects of radiation rather than the actual surgery.

Keep us posted, keep asking questions and I'm very glad you found us!

Hi I'm the same story as your dad but I did have rads and chemo. I had one now involved (after the biopsies and scans it was found and popped up pretty quickly. My cancer was also likely caused by long term irritation.your dads surgery is a long one but recovery should be quick... Best of lock to all of you.

Hi Magen, sorry you had to be here for your dad.

I am not sure how much details you got from your doctor, I have few questions for you:

1. Did your father get a Head Neck CT done? This will tell whether any lymph nodes look suspicious.

2. You mentioned that the cancer is midway between his front and back tongue, is it on left or right side?

3. Did the doctor tell you about the procedure? For tongue they will perform a partial glossectomy. When my dad had, his tongue length was reduced.

4. Depending on whether lymph nodes are affected or not, your father may have selective neck dissection. This may cause issues with neck movement as well as shoulder. It takes a while to recover.

5. Has the doctor planned to fix the tooth as well with the dentist? Should your father receive radiation, dental issues must be resolved before that.

Since things will change a lot and it will take some time to recover from treatment (more should he receive radiation and chemotherapy), please ask him to take good care of himself and eat very well and eat whatever he likes.

I was surprised, but relieved, that most of it grew back, because if you make a "c" with your hand, that's what the gash in my tongue looked like after surgery. For the first week or so, it was impossible to eat anything other than soups, puddings, yogurts. I tried pancakes after a few days, thinking they're soft, but that didn't work well at all.

My speech was never affected too much. If I'm talking to someone on the phone, they may have a problem differentiating between words I say or spell with "f" or "s". My tongue tends to feel a little heavy if I've talked for awhile, and it has a "numbish" feel to it.

After the first neck dissection, my neck healed beautifully and you could hardly tell I had surgery. The second one pretty much followed the path of the first incision, and I had a neck muscle removed; so it's much more noticeable. I have noticed that the incision scar has healed a bit better the last few weeks....strange since it's over a year and a half since the second surgery. I get twinges and tightness in the neck, but I think most of that is due to the second surgery (I don't recall much of that after the first surgery).

Thanks to everyone for your tips, advice and support! My dad recovered from his surgery like a champ with only minor scarring on his neck and a slight speech impairment.

All along the doctors were saying that he wasn't going to need radiation, but alas, there was a possibility that the cancer could have moved into a nerve and so he is now 4+ weeks into radiation therapy.
He's pretty much lost his ability to taste anything but fats, his throat is sore all the time, his tongue is swollen, he just got put on antibiotics for thrush, he's losing weight, he has no appetite...the usual. However he said that the hardest part of all of this is the constant dry-mouth. His salivary glands have pretty much stopped working, and his mouth is always dry. He wakes up 3-4 times per night to drink water because his mouth is so dry. Apparently cough drops and lozenges don't help either. Any ideas or suggestions would be greatly appreciated!

Thanks,

Magen

Try Biotene mouth wash. Its made for low saliva patients. I kept some on my nightstand when it was bad for me. I would swish some before going to bed and then have it available for later if need be. It helped some but nothing got rid of the dry mouth like time. I can sleep through the night now without any problems and a good deal of my saliva has returned but it took months.

Try a nose spray before going to bed. The key to sleeping with dry mouth is to sleep with your mouth closed. A stuff nose was my biggest problem.

Also a vaporizor nearby will help too. Bet of luck - there's only a few more weeks to go.

Like Kelly mentioned, I used biotene products too...Biotene no alcohol mouth wash for dry mouth, dry mouth tooth paste, dry mouth gel at night, and dry mouth gum. It was just easier to get in most stores, but there are others out there. Drinking water all the time is key too... before going to bed, before meals, even just rinsing, using a humidifier at night like Cheyrl said. Some use saliva meds, like salagen. Smelling lemons, putting lemon in drinking water helps produce saliva, chewing gum, citric hard candy,,preferably sugar free, but I stopped all the sugar substitutes. Hockeydad mentioned sleeping with the mouth closed. The salivary glands shut down or reduce so much even in normal people, and reason why people wake up with a funny taste, and morning breath. I even heard of taping to the mouth closed at night to help keep the mouth closed to help prevent dry mouth, which sounds funny, and some use the cpac..for snoring anyway, but founds it's also good for dry mouth. Alcohol, even with mouthwash, dries the mouth, so does caffeine, peroxide. I hope this helps. As always, check with your doctors, especially with the tape lol. Good luck.

Yes to the biotene as well. I used the toothpaste, mouthwash and gel, and found the gel the most helpful.