Hi All
I have recently been diagnosed with tongue cancer and have spent a lot of time reading all your posts so thought I had better stop looking and say hello.

In Oct 2013 I noticed a small lump (less than 1 cm) on the side of my neck. Doc sent me for a FNA which came back inconclusive. I then had a scan assisted FNA which again came back inconclusive.
By this time the lump on my neck had grown to approx 5cm and I had a consistently sore throat.

Dec 30th 2013, I had another scan assisted FNA and they took a core sample. The pathologist was not happy with the "material" so I wasn't expecting too much as far as progress with results.

Results came back positive for SCC with 2 involved nodes and one suspicious.

I then had a PET scan which showed uptake in my tongue but no where else. Strange what can pass for good news sometimes. On visiting the ENT specialist he has me scheduled for removal of my left tonsil and surgical tongue biopsy... that is in 6 days and counting. He did say I would then be on a course of Radio/Chemo.. but yet unknown how much. I will have the results of the biopsy on 26th Feb so I guess they will know more then.

I'm in good positive health and when I read everyone's stories I can't help but admire your courage. I am worried most about the effects of Radio. I'm in Sales, I can't imagine not being able to talk! Yes, I know that might not happen. I hope to share good news.

Welcome to OCF!

Where is the primary? Is the 5cm tumor one of the nodes or the tonsil? Sounds like BOT (base of tongue)?

Glad you have been reading up and getting informed. Rads and chemo are rough as you have surely read but you will get through it. Your voice may be weak for awhile but should return fine. There are a lot of factors but your case has little complications.

Good luck next week. Don

Hello Dith - Welcome to the family, though I'm sure we would all rather meet under different circumstances.

Don't worry too much right now about the radiation or chemo. In fact, don't worry any about it. It won't help to do so, it will just keep you awake at night, sleepless over something you absolutely have no control over. It will be what it will be (didn't that line come from a song somewhere). That being said, there is no guarantee it will be bad. I read what everyone wrote to expect and for me, little to none of that stuff happened. Radiation truly wasn't bad for me. Now, everyone is differnet, so we can only hope it will go smoothly and easily for you. The best thing you can do to prepare for it is to maintain a positive attitude and eat, eat, eat. You will lose weight and the more you can put on right now the better off you will be at end of treatment.

Here in the U.S. seems I've heard most people get either 33 or 35 treatments, five days a week, so it usually takes 7 weeks to finish. That you are also having some chemo, I'm not sure whether that wil extend the time it takes to complete your radiation.

Right now, don't worry about whether it will affect your ability to work. Some people are able to work without time off, others it affects badly, requiring sometimes significant time off. Like before, it will be what it will be, so wondering or worrying about it won't help any.

Dith,
Sorry you had to find us, but this is the place to be. More will be along soon. The fine people here help me thru it, and we will do the same for you. You are going to be very busy for the next few month. Use you time wisely. Get an apointment at your nearest CCC. There is a list on the main site. You will not feel well for several months. Doing jobs around the house will become difficult. You will need help. Make sure you get as much stuff done while you can. Battling cancer is a full time job for now. Get to the dentist ASAP. You will need a clean bill of health before you begin.

I am 15 months out and doing very well. You will get thru it. Good luck and keep us posted.

@ Don
It is base of the tongue and know I'm very lucky to have a non complicated case.

@Tony and Hockey Dad... thanks for the encouraging words. It is good to hear your thoughts. I will make sure I get to the dentist, at least that is in my control so far. Will have to see if there is an equivalent CCC service here in NZ.

Mere(dith)

Hi Meredith,
Welcome and also sorry to meet you here.
NZ does indeed have the equivalent of a CCC. These are the tertiary referral hospitals of Auckland Hospital , Waikato, Palmerston North, Wellington, Christchurch and Dunedin. Not sure on Invercargill.
Your ENT should refer you to one of these centres to see the Head and Neck Tumour Board. They will come up with your treatment plan .
Usually BOT is treated with 7 weeks of radiation and 3 chemos of Cisplatin.
You will be referred to the teams dental oncologist for treatment and in fact will meet them at your H&N meeting..
Hope all goes smoothly.
Tammy ( in Whangarei)

Welcome Dith. They should also test if it's HPV-16 or not from the samples of the biopsies, which if positive, has better outcome, prognosis than non HPV related oropharygeal cancer, although treatments are usually the same, except for clinical trials, which some are doing deescalation of treatments.

Good luck.

Welcome to OCF! Im sorry you have joined the club but glad you are here. You found the best place online to get info and support for OC. We will help you get thru everything you are facing.

Best wishes!

Welcome... it seems everyone here has everything in hand!!! so I will just say... sorry you have to be here but it is a great resource... hugs and luck to you.