Hi Noonie64,

sorry to hear your news, I had a lateral partial glossectomy on the right side of my tongue. As it was a stage 2 they also did a selective neck dissection on the same side and found a very small amount of spread into the lymph nodes. 
 

I believe a partial glossectomy can be anywhere from a small snip through to removing a large proportion of the tongue with reconstruction it will depend of the size of the tumour. I found my tongue healed fairly quickly with plenty of ice cream. Just stay on top of your pain relief.

taste can take a while to come back and if you have the radiotherapy it can be a very long time. I had my op in May last year and radiotherapy finished in July and whilst my full flavour profile is back on the side of the tongue which wasn't removed I'm now starting to get some taste back on the other.

a watch out though I've just been told the cancer is back on the other side of my neck now, there's about a 5% chance of a lateral spread which is what I've got so I'm back in surgery on Monday and probably back into radio and chemotherapy.

All the best for your treatment and this is a great forum throughout we are all with you

Joe

Hi Joe

Sorry to hear the cancer’s come back on the other side, as you mentioned and the same thing I was told, that’s pretty unusual (less than 5% is what I was told too), so you’ve been really unlucky! How did they find it, in a scan? I’ve just had my second follow up and all ok so far, but my doctor doesn’t want to do another scan until the one year mark. That sounds a bit too far off to me. 

Hi Dan

Sorry to hear your diagnosis. I had a partial glossectomy, selective neck dissection and RT. Luckily there was no spread to my lymph nodes, but I had RT as I had 3 risk features - depth of the tumor, one margin was a bit narrow, and peri-neural invasion. If you go a few pages back through this thread you can read about my experiences. Hope your surgery goes well!

Selina 

Hi Selina,

I hadn't actually had any more scans since the end of treatment, I found a bit of a hard lump in my neck a week or so before my December check up and I thought it was because I had a cold and a bit run down but thought I'd mention it anyway.

my consultant had a feel and sent me straight for an ultrasound which was then biopsied on the ultrasound table and a CT the day after.

Thanfully I have 6 week check ups with my consultant and it wasn't present at the last one so it's flared up quite quickly. 
I'm really grateful that they've managed to jump on it so quick and get me into surgery so quick too.

dreading going back into RT and concerned about the potential for Chemo this time too. But if it's what I've got to do then I'll push through it once again.

Joe

Hi Joe

So sorry to hear of your latest diagnosis.Its the kind of news we all live in dread of.

Its good that you are on 6wk checks too. I find treatment etc varies so much some people get scans some dont,I only had a CT scan before surgery none since.My origional surgical oncologist wrote to my new Dr and said he wanted me seen 6weekly but no he put me straight onto 3mthly.No rhyme or reason to it.

Anyhow I hope all goes well for you and you get a good outcome.I really feel for you facing RT and possible chemo.Take one day at a time as they say stay strong xxx

Hi Joe

Ah I see. Great that it’s been seen so quickly.

i had a scan just prior to my first 6 weekly check up, about 8 weeks after the RT ended. This was what they called a “baseline” so they can monitor any changes in future scans. After all the treatment a lot of areas show up on a scan when it’s just scar tissue. My doctor said for this type of cancer nothing beats a careful examination by an experienced doctor.

selina 

Hi Joe

thanks for the reply and I’m sorry too you have just got that news it must be hard after going through that already. I was concerned that the doctor is only doing my tongue surgery and not the nodes because how can they be sure it hasn’t already spread to some of them?! 

Thank you for your information, the surgery im Having is removing the lump right at the back of my tongue so they are using the robotic method and the doctor didnt mention anything about reconstruction. It is booked for a months time it seems like a long time away but they don’t seem too worried as it hasn’t shown to spread on the mri and ct scan.

I hope your surgery has gone well.

Hi Selina

thank you for replying to me I will definately read back on your posts to see your experience hope you are doing well now. 

Danielle 

It must be a worry but I’m honestly not going to say don’t worry as it’s natural , I myself just became the opposite I went out and socialised. , spent time with my family , deep down like you I had that gut feeling , I’m now 5 months on from sugery for partial tongue removal and neck dissection , won’t lie has been a long recovery , but I’m a live cancer free , my speech good , apart from stiffness in neck and shoulder as you can get post op probs when nerves getvdussruopted I’m goid , going back to work soon and very happy and I’m just saying everyday I’m going to live my life now , I do hope all goes ok and you are in my thoughts lots of love my friend xx

Thank you for the reply I have already accepted that it basically is cancerous so if the results come back negative it's an incredible bonus and relief. Nice to hear another positive story and really happy for you. I know what you mean about worrying I'm the biggest worrier about and I'm Dr Google as well and having the 4 little ones doesn't help as keep thinking what if this is worse than I think and I don't get to see them grow up