My family member had SCC left oral tongue diagnosed early this year. She had surgery to tongue and neck dissection and finsished chemo and radiation to left right neck in late July.

There is still a lot pain in the tongue on the left side.

Is this normal or could it be a sign of a recurrence.

I would appreciate any help.

I don't know how normal it is, but I do know that my radiation ended at the very beginning of June and I had a very painful tongue through mid-September. Part of it, it turned out, was my tongue was swollen and rubbing sgainst some sharp teeth edges--when tehe dentist filed those teeth down just a little that helped a lot.

But I still have tongue pain sometimes, though not nearly as badly. Either when my mouth gets very dry or certain things, like something minty that would makes someone else's mouth feel tingly, will actually sting on one spot on my tongue.

I've had a few follow-up exams with my ENT and he's been very careful to look at the left side especially (which is also where I had cancer) and all he sees is some scar tissue. Also I've had a follow-up MRI and PET scan and he says these don't show any signs of new cancer. So even though I do get worried when I have some pain, I can say it isn't always a sign of recurrence. Still, I think if your family memebr is worried she should called her ENT and ask for her or him to look at the tongue, just to be safe.

Vin,

With her finishing treatments in late July, I'm sure that there is still a lot of healing going on. How often is she following up with her doctors? If she has followed up, has she mentioned the pain to them. There is no reason to be living with pain. In my estimation the best thing to do would be to let her doctor know about her current condition.

John

Vin,
I didn't have radiation, but do clench my teeth in my sleep. After my glossectomy healed I had a really severe ache start in my tongue. I was sure it was a recurrence, but it was my tongue tensing up along with the other muscles in my neck and jaw. My dentist prescribed diazepam at bedtime and I don't have that problem anymore.

Sincerely,
Lisa

Vin - The mouth pain continued for several months after the end of treatment. Like Nelie, I don't know about normal, but I have heard from many others that those pains are common.

Every cough and ache is cancer for a while, then the dread starts to recede and its possible to just have a cold, or sore throat again - the regular kind. The healing takes a very long time. Mine seems to continue - two years after treatment stopped. Be strong. Tom

I had a problem with an old truck where with no warning the ignition system would just die -- Being a stubborn guy I kept working on it for months and it took a long time to finally fix (with the help I might add of a group very much like this, devoted to Slant Six engines, and one of the two people who helped me get it was in Argentina!)

Each time I thought I had it fixed, the darn thing would pop up again (After a while I learned that all I had to do was cycle the ignition off/on and restart while rolling) and my stomach would drop right thru the floorboards.

I finally fixed the truck more than two years ago, and have gotten a newer one more than a year ago, yet if I am going up a hill and my new truck downshifts in just a certain way, my stomach feels that trigger, remembers the stress of waiting and wondering and being ready for the next ignition cut-out and drops right thru the floorboards of my "new" truck.

What I'm saying here is that we are building up a new set of stressors for our bodies to deal with and it's going to take some time for our systems to decide what's real and what isn't...

See the Doc and maybe even get a second opinion -- Once you have done all YOU can do, a lot of anxiety seems to melt away.

Pete

PS For gearheads, the ignition problem turned out to be a faulty Run pickup coil in the distributor -- Apparently when it got hot enuf, it would do some sort of electrical field sieze-up and no longer respond to distributor magnet pulses -- Cycle on/off and sieze-up cleared for a while, sometimes minutes, sometimes days.

Thank you to all for your reply and your suggestions and input.

We went to go see the ENT and he examined the tongue by both touch and sight. He said that there is still quite a bit of scar tissue but no sign of cancer.

Also a CT scan was done and the ENT read the results and said it was normal. We visited wih the tx doctor also and she wants to repeat the scan in three months.

Tom,

Thank you for your encouragement about being strong.

Being a caregiver to my family member has been by far the hardest thing I had to do in my life in this fight against cancer. I have relied upon every ounce of strength I can find within me. At times, though, this has been very difficult and trying especially at time of first diagnosis and during the many following doctors consultations and their opinions about prognosis and treatment options.

There have been times where I almost lost it. I wish in retrospect that I had found this site from day one and been able to communicate and share experiences with so many caring and wonderful people.

Pete,

Thank you for sharing your story about your old truck. Soooo true and I can totally relate.

We have been conditioned to respond to certain situations in a similar manner to Pavlos' dogs who began to salivate at the first sign of feeding even though there was no found present.

Your story though brought some laughter as I can picture your experience with the old truck.

John,

We are following up with the doctors every month by alternating between the ENT and the radiation oncologist and in between sometimes we see the medical oncologist.

We were finally referred to pain management little over a month ago and given morphine and Nortriptylene which is used normally for depression but in low dosage (10 ml daily) can be effective against pain.

We were also given the fentynal patch (100 microgram) but the pain persists.