hi, im sonia im 44 been a smoker for years and in november 2013 was diagnosed with tongue cancer scc. on 11/12/13 i had surgery to remove. results after the surgery was that they removed it all. i probably lost about a 1/4 of my tongue. not a real lot. they have stretched the top of my tongue, (the taste buds) around and underneath. it has healed very well. i was then to go see rad doctor who said radiation not needed as the size 19ml by 7ml and the location did not justify radiation. and the fct that i would lose a lot of teeth as well. but he looked at my ct scan and said some glands were bigger than normal. so sent me for PET scan. this came back with a red blob where the cancer was. this is 6 weeks after surgery. my tonsils were also red on the scan. he said that is quite normal. He said the red on the scan in my tongue could be just scar tissue, but he is sending me back for another scan on the 1st of may. Event hjough i have healed very well i have a number of lumps round the scar from surgery, and some quite painful. i also have been having a lot of pain like sharp stabbing pain in my tongue which i also get in my bottom lip in the centre. i get pain in my ear and my jaw absolutely kills me and so does my tongue. my Doctor sent me for ultra sound thinking it could be a blocked salivary gland. but it wasnt the cause and that is normal. . i have to take strong pain killers to stop the pain. i am unsure of what is causing this. and my Gp doesnt seem to have any idea. i am going back to my ENT on thursday. maybe he can help. but he also isnt one for talking and very hard to get any info out of him. any suggestions would be great. and also THANK YOU for having me and listening to me ramble

Welcome to OCF! So sorry to hear what you have been thru. You are young which should help you to recover quicker.

What you are describing is very normal with recovery from the type of surgery you went thru. Scar tissue can be quite painful. You have many nerves in the area of your surgery and the stabbing pain you described reminded me of the pain I went thru after a major surgery. Its nerve pain which hurts like heck! Ask for a prescription for gabapentin. Im not 100% sure of the spelling but this medication will help (your doc will know what it is), its for nerve pain. This was originally used to help control seizures but it works very well on nerve pain. It even comes in liquid form to make it easier to take.

As far as the scan lighting up, I hope its a false positive. That can easily happen after having a major surgery recently. Inflammation can take months to completely recede and it will light up a scan. Not only swelling but also an infection will too. You dont have a white coating in your mouth do you? If so and you can scrape it off with your fingernail then you could have thrush. That is another very painful mouth issue that is common with us OC patients.

Hang in there! It will get easier as time goes on, plus now you have us in your corner. We are here to help you with info or even to lend an ear and a kind word.

Thank you thank you when I get home I will check on that medication and will tell my ent on Thursday

Sonia where are you being treated.? I'm going to say the pain is somewhat normal post op but at six weeks you should be better - the highlighted glands to me are a warning sign - 1.9 cm is big not small mine was 2.4 and I had nodal involvement - I absolutely would not wait until may to have my neck checked - you need to see an ENT who is a cancer specialist this could mean the difference between living and dying. Lots of ENTs who aren't overly familiar with cancer make the mistake of thinking they've got it all after removing the tongue tumor. Sometimes they do but a lot of the time the cancer has already seeded to the nodes. I would absolutely NOT wait until may.

Best of luck.

Sonia, I'm sorry you too have to be here.
I absolutely agree with Cheryl. Get yourself to a CCC where they deal with this daily. A local ENT does not solely treat oral cancers.
Your life is worth it. Do not wait for May.
Tammy

christine i do have some white on my tongue especially round where the surgery was but on top of my tongue. before it was diagnosed i had a thrush like thing under my tongue that wouldnt go away. and a little bit that was really bad that ended up like an ulcer. that was the cancer. i will try some thrush treatment see if that clears it. this mornign it is extremely painful, infact has been since it woke me at 3 am
Cheryl i am in Tasmania Australia. my ENT is Mr Ghali and and he referred me onto Dr Byram who is radiation Doctor.
Thank you for the advice i will see if i can find some one else as i am not really happy with the ENT doctor i have

We have quite a few Australians here. You are set up similar to the way the Canadian medical system is (British premise) get a referral from your family dr. To a cancer center. Someone here may be able to tell you who or where to look. My dr, taught a young Australian dr. His surgical technique and he has since returned home - hhis name is dr. Gundulak... Maybe look him up? I have no idea where he practices and Australia is a country but maybe you'll get lucky.. hugs. Do push.

i have the worst ENT in the world. i went to see him today told him about the pain im having. his response was well you have had surgery nothing i can do about that. then he proceeded to attack my tongue with a wooden stick that was so painful. felt my neck said all lookd good. i will see you in 3 months. took less than 2 minutes
back to my gp tomoro and i will getting a referral to another specialist

What empathy! Unfortunately, some of the best doctors have lousy bedside manners. Its a shame that more effort isnt given to instilling into the future physicians heads the importance of empathy to a patient. Hope your next doc is better with understanding you and showing they care.

Please add a signature when you can. Ive sent you everything you need to make one. Thanks!

Christine my gp just gave me some of the tablets you recommended! I just took one ! Hope hope hope they work.