hello nicola, first of all the most important thing is staying positive,yes there are horror stories out there but the number of people ive meet over the past 6 years with the same condition have come through it to lead a near normal life ,obviously i understand your concerns especially as you have a young daughter ,which is why i suggest not to hide your symtoms,the more people that now will be able to help you when you need it, true its going to be a rough ride the next couple of years but you can pull through this, if theres any info on what the proceedure is for the op or the possible follow up treatments after please let me know , i was stage 4 tongue and lymph in neck ,im 6 years post op and although at times its been difficult im here and doing my upmost to lead a normal life again ,you can too,please let us all know how things go all the very best x

Dear All

Finding it hard to have to be posting here at all but my husband is waiting for treatment for tongue cancer, surgery at least (including some lymph node removal) and then maybe radiotherapy if he needs it. I'm focusing very much on practicalities at the moment... he's a teacher so speech is important to him, how long in your experience before he might be able to get back in the classroom? Should he be thinking after Christmas or longer (assuming things go well). What impact would radiotherapy have on his speech recovery?

Thanks :)

you are doing doing do well , I’m few months in  my sugery was September the 9 th , had a few hiccups but partial tongue removal and neck dissection luckily no RT or chemo needed , recovery been  hard my tougue feels strange , I’m pocketing  found , and it feels tight and quite thick , biting tongue and gums on odd occasions , diet a little better , I’m 12 lbs Weight  loss  , but have coeliac too do diet very limited , my neck still hard and uncomfortable , but my shoulder bern the biggest problem , having physio now , still needing some sting pain killers occasionally , not back at work yet , but my job very physical as I’m a heakthcsrecwith complex and end of life children and young people , im

missing my job so much , but know it’s not worth the risk I need to be safe , emotionally I’m better now ,but I would not wish it on anyone , my health never bern simple , but this as really took its toll on me , but im

here and I’ve rnjoyed Christmas with my family do to be able to see my grandchildren open pressies it was worth it all , love to all you

liveky cancer hero’s best wishes for 2020x

Hello, this is my first time posting here. 

I have recently been diagnosed with tongue cancer on the base of my tongue, it hasn’t spread anywhere else according to mri and ct scans and am awaiting a date for my surgery (robotic partial glossectomy). Has anyone else had this? I won’t know if I need radiotherapy yet until after surgery so that’s a possibility. 

Thanks

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 

Hi everyone I have been reading this thread all night as I'm struggling to sleep at the moment with worry. 

I have a lump on the front left hand side of my tongue which has been there for a few months and I have been to the doctors and had my first appointment at the maxofacial in the hospital to be told they had no idea what it was and I'm booked in this Monday coming the 27th January for my biopsy. I have 4 young kids and I'm absolutely petrified of the outcome I'm not sleeping I'm snapping at people and I'm just hiding away from it all. I'm hoping and praying that it's not cancer but I kind of know deep down it is. 

It's very reassuring to read all the positive posts on here and how so many of you are living a normal life

I'm very anxious even about the biopsy is it as bad as I have read on some threads. 

Thank you in advance for any response I get I didn't know else to speak to about it. 

Hi everyone I have been reading this thread all night as I'm struggling to sleep at the moment with worry. 

I have a lump on the front left hand side of my tongue which has been there for a few months and I have been to the doctors and had my first appointment at the maxofacial in the hospital to be told they had no idea what it was and I'm booked in this Monday coming the 27th January for my biopsy. I have 4 young kids and I'm absolutely petrified of the outcome I'm not sleeping I'm snapping at people and I'm just hiding away from it all. I'm hoping and praying that it's not cancer but I kind of know deep down it is. 

It's very reassuring to read all the positive posts on here and how so many of you are living a normal life

I'm very anxious even about the biopsy is it as bad as I have read on some threads. 

Thank you in advance for any response I get I didn't know else to speak to about it. 

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

My pleasure , i have 2 small grandchildren , it’s so hard lots of emations go through your mind , I have a dissabled  son to who was worrying before my cancer diagnosis  about  me not being here , but all I can say is keep moving forward , I hate the word positive because how can you be , all I can say is speaking to cancer sufferers on here made me realise we not on our own and never will be , and there is far worse out there , keep going take  things day to day .

Thank you so much I'm dreading the biopsy on Monday I read somewhere it's very sore. Will keep posting and update after Monday I'm hoping the support on here will help me though this 

Hi 

First advise keep off dr google please   I am 17 month post radiotherapy for tonsil cancer and living my life cancer free . Don’t pre empt anything biopsies are done to rule out cancer just as much if not more than rule in. 

Enjoy your 4 kids this weekend try and put biopsy to back of mind you can’t worry about something u have no control over .

Hazel xx

Thanks Hazel I guess I'm just trying to prepare for the worst and anything else is a bonus. Lovely news to hear your cancer free. 

I'm only 35 and all my wee ones are all still young I guess that's where my worry comes from as my kids are my life I do everything and anything for them and I suppose I worry what if I can't anymore but yeah like you say I can't control what happens so just need to have the biopsy and take it from there. Thank you xx

No problem, please come back when you get results and if there is cancer cells it’s no longer the death sentence that head n neck cancer was even 10 years ago . Breathe deep you can do it  

hazel d

I will definitely come back when I have my results.

Thank you x

Hi Jamie

Sorry to hear you’re worried, fingers crossed it will be nothing. The biopsy is sore but not too bad.

i know what you mean about worrying about not seeing your children grow up - my baby was only 7 months when I was diagnosed last May. I’m 39.

I’m doing pretty well now. Finished my treatment at end of August, I was back at work part time in October and full time in December, I was eating almost normally by early December too. 

Good luck and I hope it’s nothing, but if it’s not you’ll gave it and find lots of support here. 

Hi there and thanks for the reply I'm glad to hear that you are doing well and it's nice to hear. It may be nothing but I'm preparing for the worst and anything else is a huge relief. My lump is on the front left hand side of my tongue and bleeds occasionally. It's been there for a few months now. Thanks and yes already appreciating the support