Well a lot has happened since I was diagnosed again with tongue cancer in Jan 2013.

- my recurrence occurred on the opposite side of my tongue. So I basically had my tongue removed and a tongue flap created from my forearm/wrist. I also had a trach in hospital for preventative measures. Nasal feeding tube for total of 2 weeks.
- i had brachytherapy radiation on my tongue where the area of the flap is located for prevention. This radiation was done in hospital and I was there a total of 3days for that.
- of course I lost weight again and have yet again another new normal. I am on a soft food diet and maybe like this indefinitely.
- both recurrences were stage 1. My dr team believe that a cancer cell was lurking from first time. Genetics play a role in why I may have this disease and why my tongue was highly dysplasia .
-the 1st time I dealt with my cancer, surgery wasn't too bad but radiation was brutal (external beam). This time around, surgery was very difficult but radiation not too bad.
- I am sure I will be in the after treatment issues forum. This is very hard to believe that I went through this again. I am hopeful that this is the last and I'm happy to be alive.
- no chemo needed and will have my usual follow up visits with ENT and oncologist for the next 5 years- at least. I have to admit, I am very anxious still and stressed about this. I don't recall being like this the first time.
- I have a young daughter so this was very difficult for her. I was in the hospital from surgery for 8 days and radiation for 3. Although we had family support, she missed her mommy and it was hard for her to see all my "owies." But we are close to being back to everyday life and hopefully she will soon forget all this happened.
Thanks for reading.

Sounding good Lola. So lucky that both your tumours have been stage 1.
I'm with you that you do not ever have a recurrence again. Once is enough.
Sounds like you' re making a good recovery.
Tammy

You sound strong. I wish you and your family the very best. Sending all my prayers your way. -Michelle

Kudos to you for getting through it! hugs

Hi Lola, I hope you don't mind me asking, how did the cancer on the left side show up (the re-occurance)? I have lost about 70% of my tongne on the right side and I don't have very good feeling in what is left of my tongue. It kinda burns all the time. Anyway, I can't really see into the back of my tongue cause of limited visibility, so how did you know that something was wrong?

Wendy are you being followed up? I check my mouth fairly regularly so I know it quite well, but I also see my specialists every three months it's their job to confirm you are okay. hugs.

Thank you everyone for well wishes, thoughts and prayers.

Wendy- My tongue showed signs of irritation on the left. The irritation got worse as months went by. Then it started to hurt and eventually affected my eating and speech due to pain. I wasn't regularly seeing an ENTat that time because I was into my 6th year. So when it started to hurt and not really heal or get better, I went to see my ENT. He did a biopsy on Friday and I got my results the following Tuesday showing it was cancer. My ENT was quite surprised I had a recurrence and even visually he said 50/50 it could be cancer. Of course to be safe, he did a biopsy right there and then.

I thought the irritation was from chewing on the left side all the time.

Hi Cheryl, yes I am being followed up. You know how we are though, for me I am alway looking to try and see whats going on in my mouth. Unfortunatly, since my tongue is always kind numb and burning at the same time, I am always afraid I will miss a problem and go as long as 6 months before finding it.

Lola, thanks for your reply. I will just try to remain diligent in keeping an eye on things. It will be 4 years for me in November.

There seems to be a fine line for me between being diligent and obsessing over my mouth. LOL, I am sure I am not alone.

You definitely aren't alone I check it weekly for the most part. My tongue with graft is a little too big for my bite. And I chew on my right side (the good side) so If I chew what I call difficult foods too much (chips, crackers, hard stuff like bread crust etc), then my tongue gets irritated and inflamed or if it swells and I speak to quickly I bite it by accident. I had a BIG ulcer after treatment but I didn't notice it until it got really deep and then painful. It took about three weeks and several nervous breakdowns to heal. But it finally did. I had my teeth on that side filed down to minimize irritation and the minute it becomes irritated I revert to safe foods, mashed potatoes, eggs, bland stuff for a bit until it is feeling better. You have to try and be diligent but it's hard not to let that rule your life... best of luck and heal well.

I'm so sorry to hear about your 2nd bout with this. If you don't mind me asking, what did your lesion look like?