I was diagnosed with squamous cell carcinoma almost a year ago. 40% of my tongue along with the lymph nodes were removed. I had no problems until March when the Doctor found a suspicious white spot in the rear of my mouth. A biopsy was done the results were negative.
The problem begins, people who have had biopsies know that they can be quite painful for a period of time until they heal well the pain from the biopsy has not gone away in fact the pain is much worse and eating has become painful. After several visits to the Dr. they did a Cat Scan last week and I will get the results tomorrow. There are no lesions and no visible evidence of a reoccurrence. Is their anyone with a similar experience, maybe nerve damage from the biopsy?

Mac,

I had my biopsies done on 4/18/05, and one spot still hurts. In fact, I find it a little ironic that spot bothers me about as much as anything else I had done. One thing, I had the biopsies done under a local and the spot that hurts was also the most painful when they did it. It was like they couldn't give me enough local for as much tissue as they were taking.

I'm glad to hear you are following up on it just in case. Just curious...I see you're in OK City. Did you have your surgery done there as well? I had mine done at the OU Med Center.

Good luck and I hope your results come out good.

Jennifer

Hi Mac,

I don't have any pain from the site of biopsy or from the area of my alloderm graft when my Dr. removed 25% of the right lower side of my tongue. (Under and part of the floor of my mouth). I do have a muscle pain or tiredness when I talk too much (imagine that!) or try to manipulate something difficult to eat. I do grind my teeth and 10 mg of valium at bedtime has done wonders to relieve the muscle pain I had in my tongue from the tension of biting my bite guard. I was convinced "IT" was back when my dentist prescribed the valium. My ENT said it was a highly underutilized medication for that type of problem.

Sincerely,
Lisa
2 years 2 months cancer free!

I discussed the results of the CAT scan with my Doctors today and the CAT scan indicated a large mass under my tongue on the same side as the surgery. The Doctors ordered a PET scan. The sugery was done at the VA hospital by Doctors from the OU Medical Center. I will get a second opinion after the PET scan from a Doctor at the OU Medical center.

Mac
Our best wishes are with you at this scarey time .
Let us know how things turn out for you.
Take Care
Marica

I got the results of the PET scan back this morning. The cancer has come back in my tounge and one lymph node. I see the radioligest tommorrow afternoon to develop the treatment plan. Chemotherpy will also be used with surgery as a last resort because of the location of the tumor. If you have had surgery to remove a tumor and you start having pain almost like an earachae or your tounge starts hurting have it checked out fast. More later.

Mac,

Did you have radiation? My moms situation sounds similar. Her doctor wanted to keep radiation as a back up and she had her first surgery and partial glossectomy done with no radiation. About 7 months later she had what her doctor called a recurrance but we strongly feel it was just some of the cancer that grew out something that the ENT left behind. Since she had the second surgery December 03 and then radiation and chemo ending in March 04 she has been cancer free. My mom battled 10 years of precancerous lesions on her tongue and now she is finally able to live without some annoying sore on her tongue. I strongly feel that the radiation was a key factor in making this go away.

Dani

I did not have radiation or chemo the first time I had a partial glossectomy (40%). The new tumor is 3.3 cm and is buried in the mass of the tpunge. If the radiation and chemo do not work the only path is removal of the tounge, but we will not know untill appx. 5 weeks of treatment. If the tumor has started decreasing in size then the entire 37 radiation treatments 2 chemo treatments a week will be done. Yes, I also feel the from conversations with the Doctors that the return was a result of something left behind.
I start radiation treatment 7/6/05.

I am so sorry to hear of this recurrence. Having had doctors from the same facility, similar surgery, and also the recommendation for no followup treatment, you can believe I'm really spooked! I'm going to get a second opinion on radiation/chemo.

I hope your treatments go well with minimal side effects. I'll be thinking of you daily!

Jennifer

I am scheduled to start radiation tretment and chemo this week. So from now on I will post in the under treatment section. The folks who are on this terrible and scary journey wirh cancer really help each other by telling about your experiences. Thanks

I had a biopsy that came back mild Atypia, and I do feel tingling and a kinda werid sensation even after a year later. I work with knives and have some scars on my finger too prove it. Even they ache once in a while. I suppose its kinda like nerve damage. Once you cut things never are the same. However the slight tingling or disscomort I feel from the surgically excision is nothing like how much the white leukoplakia(which was very small) pain and annoyance gave me. I realize Im not currently going through most of you all are going through but I thought Id tell you.

Stay well, Carl

I am having pain and discomfort on the flap side of my tongue. I had a thing removed from the flap about two months ago and biopsied, came back negative and my flap has felt swollen and sore a lot lately. I am seeing my oral surgeon Tuesday. I wear a mouth guard at night but can still feel myself grinding away, I am going to ask about valium since I read it helped another poster. Thanks, Carol
p.s. has anyone ever noticed swelling in their flap side? (4 years since diagnosis and treament).

Carol
Is 2 years since my surgery and recently have been having problems, so am see Doc on Monday. I presume it is the scar tissues shrinking. I will let you know what my Doc says.
Sunshine.. love and hugs
Helen

Thanks Helen.....my flap almost seems larger, I don't know....I will get checked....let me know what your doc says...Love, Carol