Hi,let me say that this site is awesome! You people are truly inspirational.I found an ulcer last month in my mouth that wouldnt heal,went to my family doc,he referred me to an ENT,he said it wasnt cancer(yeah right),gave me Nystatin for thrush.4 days later it is still there,so I make an appt. myself for the oral surgeon.He told me he was 99% sureit wasnt cancer,but if I wanted a biopsy he would do it,of course I did ,so I went back that afternoon and he did it,2 days later,I get the call,I was right,it was cancer.It was very small,less than 1 cm,so he said for me to go in the next day and he would take out enough for clear margins.Went in,he took out a big chunk of my tongue,which is still healing up,with mild pain in my ear and throat,but I can at least eat now,(this was 2 and half weeks ago)I am also seeing an new ENT and she consults with her hubby who is an oncologist.They all seem so sure that they got all of it and that n0o further treatment is necessary except to watch me.I go to my ENT tomorrow and my question is,shouldnt I insist on a CAT scan or something more definitive??? I had no node involvement,but after all of the things I have read about tongue cancer,I am so scared,...has anyone else had no treatment except surgery??? BTW I'm 39 and have smoked for 25 stupid years,down to 10 a day and bought the patch to start using on my quit day next week.Thanks

Hello justlilomee. Welcome and you are right, this site is so awesome. Many kudos to all of you that make it happen!

Give yourself peace of mind and get as many opinions from cancer specialists that you need. There is a very high rate of complete survival if caught early and many complications if not with many not surviving. It is your life, not theirs and nobody has your interests in mind quite the way you do. They should at least do chest xrays, an MRI or CAT scan with contrast or a PET/CT scan. Consult with someone that deals with this every day instead of you guiding them. Good luck and as Jimmy V said, NEVER GIVE UP!

Ed

Thanks for such a fast reply.I am very pro active in my own healthcare.Had I not made the appt. myself for the oral surgeon 3 weeks ago,I would still be sitting here with tongue cancer.I am going to talk to my ENT tomorrow about my concerns and if she doesnt order the tests I think I need,then I will find someone who will.I have a wonderful husband and children that I pray to be around a long time for.

It's a contradiction to say that you are "pro-active" in your health care when you have smoked for the last 25 years. It's more like "negative active". I applaud your decision to quit now. My step mother and sister (at 47) both died from smoking related cancer (both lung).

You didn't mention the staging or type of cancer you had. Assuming it was squamous cell carcinoma. You should have had a complete workup prior to treatment. That would have included an MRI or CT scan, PET scan, biopsy, chest x-ray, bloodwork and lab tests. They should have "scoped" you to determine that this was the only site and that there isn't an "occult" site elsewhere. The reason for all this testing is that SCC has a tendency to shed and set up new primary sites, especially in the respiratory system like the esophogus and lungs.

Tongue cancer can be more aggressive then say tonsil cancer and you must be very careful in how you deal with it. I would get a second opinion from a comprehensive cancer center (and radiation oncologist) about whether you should get a prophylactic treatment of radiation therapy.

I am kind of surprised about the attitude of the first ENT and also that you had your surgery done by a oral surgeon. Head & neck cancer is nothing to fool around with. The outcome is usually always better by seeking treatment at a comprehensive cancer center where they are highly experienced at diagnosing cancer and treating head and neck patients.

I had an oral surgeon, dentist, hygenist and an MD (who I specifically went to for the tumor which was large and highly visible). NONE of them accurately diagnosed it. Many of us here have had to learn this lesson the hard way. I am sure that this "earned" for me the late staging for my tumor.

I am not trying to frighten you , just convey that one cannot use too much caution in dealing with head and neck cancer.

Yes,I have smoked for 25 years and do feel bad about it,thanks for being so supportive(not) and yes you have scared me,why do you think I am still so worried about them not testing me?? I am starting to be sorry I came here,people need the facts,yes,but done so with some support,my cancer was TIS SCC,localized,guess I will find somehwere else to get some advice where they dont judge me..peace

Don't leave!!! No one is judging you at all. Get a CT Scan of your lungs, first hand information. I have a biopsy tomorrow to determine if my spots are lung mets. I would see a radiation oncologist. Take your surgery/pathology report to be sure you don't need some radiation therapy post surgery. How far from surgery are you? We are here for you!

Hi Lynn,I am sorry but that last post was very insensitive to me.I had my surgery 2 and half weeks ago.I am under the care of the oral surgeon,an ENT doc and her husband,who is an oncologist.They sat down together,went over my pathology reports and decided on a treatment plan of watching me every 2 weeks now then every month,I admit I am not satisfied with this,that was my reason for posting,not to be lectured on why I shouldnt have smoked ,I think I realize that Thanks so much,I need some reassurance now,not judgement and Gary's post was very rude

Lynn,prayers are with you that your scan comes back good

Hang On There Girl...........Frank was nurse and smoked and continued to smoke for 2 years after diagnosis. What`s done is done, wanna know something? I`m an RN, lived with oral cancer for 5 years, watched the love of my life die, and I smoke.......do I know the risks, yes, I`ve quit lots of times. No one on this board is perfect, everyone knows I`m not. The important thing is you stopped, you can`t change the past and right now you need all your energy for the fight ahead. Feelings great hurt on a pretty regular basis on the board............mine included.....i know you`re new to all this, and overwhelmed at this point...........there are lots of here for you........Just give us a chance..........Hugs, Dee

Dee
Thanks I have been so depressed of course,at times I feel secure in what my docs have told me then other times,I feel like I need another opinion..Im so sorry to read of your husbands passing,I cant imagine life without my hubby.I am still smoking but have cut down about 80% till my quit date next week.The American Cancer Society sent me some really good adice on quitting smoking.My hubby is going to quit also.We all make choices in life and have to someday pay the dues for them.I pray everyday that my time isnt up and that they are right when they tell me I have a 90% recovery from this..blessings to you