I finished radiation on July 10th, 2003 and still have some issues that I worry if they are normal or not.........I probably worry enough for two people! Three months out I am still having pain in my ears, mostly my left ear. It seems to come and go and is a sharp pain at times and a feeling of "fullness" at other times. My neck on that side is also sore on that side along with my jawbone. One thing I have noticed is that I have gotten more active the past month and I wonder if I am using and turning my neck more now then I was before?? My neck was pretty tight and stiff until the past few weeks and now it seems to be getting better in that aspect. Anyone else experience any of this? I guess it scares me that ear pain is a symptom of oral cancer. I told my oncologist at my Sept. visit and he looked in my ears and said they were fine. I had a CAT scan done on Sept. 23rd and the results were clear.............6 months from surgery and all fine so far. Just wish some of these "odd" things would go away so I could maybe take just one nice, deep breath for the first time since April 1st when I was diagnosed. Any information would be much appreciated.

Also, now that I can finally post here again, I have so many questions. Is it normal for the inside of the mouth to still be sore three months out of treatment? I am eating alot better now but still use the tube to supplement.

Just to give you some idea, my father is 5 months post rad treatments and is still in alot of discomfort. He also is experiencing sharp ear pain, throat ulcers and is still unable to eat. He tried to keep his weight up with shakes, etc. but had to have a PEG tube put in about 3 weeks ago. My dad is 71, so his recovery is going to take alot longer, but we were told for every week of radiation, plan on a month of recovery. Sounds like you are making great progress!! Best wishes on your recovery!!!

My husband finished radiation of SSC of the tongue at the end of April. His jaw is still very sore, and tongue is still burning. He had a visit with the oncologist last week, he said this is very normal and my husband is still healing.

Take Care,
Cheryl

Minniea, mouth sore can last very long after radiation depending on the dose you received. With a very dose of radiation and concurrent chemo, there were plenty of ulcers in my mouth which made eating and drinking water painful. The ulcers would gradually disappear without your noticing but you will feel eating and drinking becoming more tolerable. I am almost two years post treatment and there are still minor ulcers on my tongue which give me a burning feeling if I eat spicy food. I have said goodbye to pepper, curry and chilli for a long time already. This doesn't bother me because I still have a long list of food I can eat. So be patient, mouth sore is very normal and will take time to go.

Karen stage 4 tonsil cancer diagnosed in 9/01.

Minniea, I had (and sometimes continue to have) many of the sensations you are describing. I also noticed they seem to be more noticeable after being more active. I have found things get gradually better with time.

For those folks having a "burning" sensation while eating you may have a yeast infection. They are common post radiation, and do not always exhibit visable symptoms. I was plagued by them up until recently (over 2 years) and the only symptom was a burning sensation while eating or drinking. Nystatin swish (prescription) was all it took to knock it out for weeks at a time.

Minniea I'm almost a year out from the first surgery/rad/chemo and still have tighness etc on the left side. Right side is less from the second go round, but for some reason that side has more issues with ears fullness feeling, ringing etc. Asked ENT about it, he blamed the radiaton/chemo. I think they dropped my on my head transferring me from operating table to bed.

Did you by chance have cisplatin for chemo? I did, and one of the side effects of cisplatin is it can cause ringing of the ears. Oncologist stopped the chemo immediatly after I told him I was having ear problems during treatment. The ear problems continue on and off.

Also still a little sore in the mouth at times. I don't expect that to ever go away fully. I have heard that because of the reduced saliva and dry mouth, the membranes in the mouth develop very fine cracks, much as dry skin would. Thus the cause of the pain with spicy foods. I used to be able to eat even the very spiciest of Thai food, etc, now, not any more.

So guessing what you are experiencing is normal for what ever passes as "normal" in this situation.
Bob S.

Thank you all for the replies. I often wonder if I need a shrink right now rather then a medical doctor. Seems I spend all day chasing down the latest symptom and worrying on it. Once I get one checked out, I find another one to replace it. I am driving my husband bonkers with it. I live in Virginia Beach and this time of year, with the season change, lots of sinus and allergy issues crop up. Even though the entire population around me is suffering from sinus headaches, I will convince myself that mine is cancer in the brain. Guess it's a stage in the process of becoming a survivor. On the brighter side, I am able to "forget" about it for a few hours at a time now which makes me very happy. And my children treat me like "mom" again rather then some stranger. My 9 year old even had a temper tantrum yesterday (she's youngest of 7 and very spoiled) and didn't feel guilty about it for hours afterwards! Life is normal again and for that I am grateful. Everyone have a beautiful day.

Bob S., I didn't have chemo, my team didn't feel it was warranted. I did, however, have radiation to both sides of my neck even though nodes were only taken out of the left side. Gary had told me that he also had ear problems after radiation but I am wondering if it's normal for it to last this long. It's not a ringing in my ears nor do I notice any hearing loss.

Minniea if you are just 3 months out from radiation you probably are still "cooking". Kind of like when you take food out of the microwave it still cooks for a while afterward. Sounds kind of gross, but the radiation still works for a few weeks afterword.

Then the rule of thumb around here is side effects for a time of every month per week of radiation. So if you had radiation for 6 weeks, then figure on side effects for 6 months.

You're not going crazy, all of us experience the same feelings for a while after treatment.
Bob S

Hi Minnea,

I am a little over a year and a half out of radiation and still get surprised sometimes by the shooting pain in my ear. My head and neck scans are normal also. Hope this helps. And no you shouldn't ignore symptoms but if it's good that you are learning what all of us have an are going through. Not every pain is a recurrence or spread.

You know I never had a sinus headache during radiaotion - see there is a bright side...there were a lot of old aches and pains that all of a sudden subsided during radiation. I just figured my body was too focused on the radiation to pay attention to the rest (or was that my mind?)

You take care,
Dinah

This board helps me so much. I have been reading it for a few months now but couldn't seem to be able to post anything. I have that figured out so I'm glad I get to ask questions.
Now another question: How is Daniel Bogan doing? Hope his radiation is going well.

I don't know if this helps at all, but perhaps someone has a similar experience.

I was told that there are nerves in your tongue that go through the ear. Thus, whether it be tumor or the side effects of radiation, the nerve is effected causing shooting pain in the ears.

Several weeks after my radiation treatment and I'm having shooting pain every once in a while in my ear. Not horrific, just bothersome.

On the other hand. My radiaiton treatment was delayed because I had pneumonia. When my radiation was a few weeks in, I had a lot of pain and fullness in my ear. The radiation docs who followed me, my oncologist and bmt doctor all said everything was ok.

I went to my ENT doctor and she said right away that I had fluid buildup behind the ear drum. She said that most doctors didn't want to do the procedure, but that if I was in pain she would. She poked a hole in my ear drum with anesthesia and then sucked out a bunch of mucous using a vaccuuum tube. I felt better immediately.

I'm starting to get that feeling again, and will be asking the ENT about this possibility again. I know radiation treatment gives you sticky mucous and I've had sinus problems.

Anyway, just a random thought. Wouldn't hurt to ask a doctor about it.