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 :)

Belt and braces just means they gave me radiotherapy and chemo to make sure i had the best outcome incase there were cells in the nodes they had left behind. My tongue cancer was just over 5 years now.  My face is still numb and my neck has all the nerve endings feeling your describing but it does get much easier as time goes on and you get used to a different way of life. I believe in being positive and like you I have grandchildren to keep me going! Keep in touch with your progress as it’s so good to talk when you have so many questions going on in your head.

Hi all

Although haven't posted previously,  have been often reading through and following this thread during last 6 months, when needng a boost/reassurance during treatment/recovery.  In April I had third tongue removed, reconstruction (from forearm) plus right side neck dissection.  So very inspiring to read of all your experiences, courage, support and friendship, helped so much, thank you!  Think I'm doing OK, swallowing still a bit tricky, due to tongue shape and dryness.  I also had base of tongue cancer (T4)  2014 treated with hefty chemo and radiation, which apparently makes recovery a little slower.  Tongue still feels really so prickly, cumbersome and speech tricky, seems more so now than the earlier months, am hopeful of further improvement over coming months, trying to be patient!

Thanks all again.

Mary62

I’ve not been on here in a while, but thought I’d come back to post an update for anyone reading this thread. I had a partial glossectomy for T3N0 oral tongue cancer on 11th June, plus reconstruction. 6 weeks of RT which finished on 30/08/19.

Here’s a summary of my experience post RT. By the end of treatment i’d managed to maintain the weight I’d been at the start of RT (I did lose some post surgery), and I didn’t need a feeding tube. The painkillers made that possible - fentanyl patches, oramorph, and in particular dissolvable aspirin multiple times per day. I was on a completely liquid diet but managed to get enough shakes down me. I continued on shakes for about 10 days post treatment, when I started to eat some soft food. Eating hurt a lot at first - particularly when I swallowed, in the back of my mouth. Some of the mucositis started to clear up at this point, in the parts of my mouth where it appeared last, ie on the opposite side of my mouth. From that point it was very slow progress, and I stayed on the strong painkillers for a long time - however, they enabled me to eat, and I gradually ate more varied and normal foods. 

About 8 or 9 weeks post RT ending, I started to reduce the painkillers, and by 11 or 12 weeks I’d stopped them all, including paracetamol. Basically, I took them until my diet was pretty much back to normal, or about 80/90% normal.  A week after stopping the last painkillers I went on holiday to Thailand where I was able to eat in restaurants with friends, lots of Thai food, and have a couple of glasses of watered down wine. Spicy food however has to be extremely mild, or it burns like hell! I’m not drinking much now - my cancer wasn’t caused by smoking / drinking so there’s no reason I should avoid it totally, but I don’t have much inclination to drink. However when I do, it no longer needs to be watered down (4 months post treatment ending). 

So where am I now? My treatment area wasn’t extensive, it was the left side of my mouth only. Side effects from RT that I still have - tightness in the left side of my jaw at the back, and the back roof of my mouth is still quite tender - that’s where the spice burns! My first MRI showed I have a bone marrow hematoma in my jaw. It’s quite painful and tender in that area, but the doctors aren’t worried. That’s about it, as I think the other side effects are actually from the surgery, not the RT. They are:

- tightness and hardness in my neck from the neck dissection - but this is continuing to improve.

- a slightly crooked smile from nerve bruising - also improving

- dry mouth at night, as one submandibular gland was removed. My saliva is fine during the day.

- the free flap reconstruction has left my tongue slightly tethered, so I don’t get quite as much force when I swallow. This makes certain foods tricky - salad, foods with lots of fibres like meat or fish. But really good quality, perfectly cooked meat and fish are fine. :-)

- I can’t properly clear parts of my mouth due to lack of tongue reach, so have to swish with water after I eat.

However, I’m only 4 months out, and I’ve only been eating (almost) totally normally for a month or so. Things are improving all the time. I was on the painkillers much longer than the doctors said I would be, but that enabled me to get my normal diet back fairly quickly. 

I’ve had my first follow up MRI and there’s no sign of any cancer. I have a pretty good chance of it never coming back, so I’m crossing everything. I’m only 39 and we’d love to have another baby (I also have a 14 month old), so I’m hoping it all continues on the right path. I’m pretty happy, and life is returning to normal. I’m back at work full time, having started to ease back in slowly from about 5 weeks post treatment. My speech is 95% normal - just the odd word that takes a bit of effort, and marginal lisp. 

I hope everyone on this thread is doing well. 

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

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