Tongue cancer

Hi there, sorry to hear your news, you are in the correct place. I'm F, 50s, non smoke/non drinker.

I was diagnosed with tongue cancer last Dec following a referral from my dentist regarding an ulcer on the right side of my tongue.

Biopsy confirmed cancer; MRI and CT scans indicated small with no spread. So mine was T1N0M0.

I had surgery (it's called a partial glossectomy) in January and found out a few weeks later that it had been successful, so I am now on a follow up schedule with ultrasound scans.

I was fortunate that as my cancer was small, my surgery just involved removing part of my tongue and I did not need the larger surgery which involves a reconstruction (using muscle/skin from your arm).

Some hospitals offer a special scan/procedure called a Sentinel Node Biopsy which examines the lymph nodes (I could not have this as the wait would have been too long). Alternatively, if they do suspect there may be spread to lymph nodes, you may undergo a partial neck dissection to remove some.

After surgery they examine what they removed, and based on this and any lymph nodes that have been biopsied you may then need radio or chemo therapy.

I hope this info helps! If you are on FB, there is also a helpful group there called Young Tongues.

Hi SuzieQ28 

welcome to our little community. So sorry to hear you have cancer at such a young age and you must be truly shocked. I promise you’ll feel better about it once a plan is in place. There are a few of us here like teee7  who have had a tongue tumour. Can I recommend you look at https://www.youngtonguesglobal.com/ who have lots of young patients and an active FB group. But do stay here with us. 
These cancers are nothing to do with smoking or alcohol. There are other putative causes and unfortunately they are being seen in younger age groups. It’s awful. 
Stay with us and let us know how you get on. 

Hi! That was rly informative thank you  unfortunately I have a fixed metal retainer which messed up my MRI so they couldn’t see clearly if it was in my top lymhnodes or not. Most of the neck was clear but 20% chance of it having already spread into the nodes they can’t see clearly! Unfortunately my hospital don’t offer the biopsy and I was considering a referal but I’m concerned it will take too long and in the time I’m waiting it could spread. My surgeon has offered a neck dissection on the affected side! I got the impression he suspected it had spread but without proof  he couldn’t say anything. I’m gonna join the fb group now! Thank you so much for the information

I was absolutely shocked to be honest, my first biopsy came back as pre-cancerous so after the second biopsy I thought they would have got all the abnormal cells out and I would be in the clear. Was absolutely not expecting to be told it was cancer, but then again I guess nobody is! My treatment is left to me to decide, I can either get referred to Bristol and got a sentinel node biopsy or I can get a neck dissection done at my hospital as they don’t offer the biopsy! If I go for the neck biopsy option the surgeon said the nodes will be sent to the lab and if they come back cancerous I will have radiotherapy on my neck! 

My advice would be to go for the SNB. RT can be left for another time if it’s needed. I’ve had it and I wouldn’t wish it on anybody, though five years later I’m well. 
There are members on here who had neck dissections and coped very well yet others who have been left in permanent discomfort. You pays your money! 
A few weeks won’t make much difference. Much to think about! 
what surgery are they doing to your tongue? 

Hey Suki

I had 2/3rds of my tongue removed last June. I had a neck dissection but they didn't find it in the 58 nodes that were removed. I still had radiotherapy on my neck which finished last October, under my chin is still numb but the rest is fine just need to exercise it. I've added progress in my profile if you want to have a read.

Dee