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 :)

Hi Joe

How are you doing post treatment? Did the side effects continue to get worse, or plateau? Do you mind if I ask where you were irradiated?

I’m now 3 treatments in. Am amazed how quick it is- maybe 30 seconds of treatment, two arcs. I’m having VMAT. Having the mask made was horrendous for me, I got really claustrophobic, panicked and freaked out. Had to try 3 times! Finally they decided that as I was only being treated on my tongue I didn’t need the full head and neck mask, so they gave me one usually used for brain tumours. The eyes, nose and mouth were already cut out and it doesn’t cover the neck or shoulders. That was so much better, I think it was the face being covered that made me panic!

hi SW80

post treatment the first 2 days were the worst, the heat of the days didn’t help as they were the hottest days on record. From about day 3 it all changed. Then on day 4 I started to manage some normal food again rather than the foul fortisip drinks! Since then every day I’ve felt a lot better. I’m now 2.5 weeks since it ended and I’ve plateaued a little but I have some taste back it’s not very whole at the moment but it will take time. For example I can’t taste anything sweet at all. But tomato pasta and pizza or anything with lots of garlic I can taste enough to enjoy it.

still have some pain which I’m working on, but I’m on fentanyl patches at the end of treatment I was using 50 micro grams plus some morphine, I’m now down to 37 micro grams and maybe a dose of morphine before bed as that’s when it can get a little stingy on the tongue. 

As I’ve been on quite high doses of morphine and fentanyl I have found I’m getting come downs and withdrawals but I’m not too concerned as I’m gradually reducing the doses.

I had treatment at hospital. It was a great facility. 

Im really glad they’ve helped with the mask it was awful and I really hated it. As you get towards the end of its anything like me up to week 3 I was fine and I’m the first few days of week 4 it was me a switch and bang I was really ill in loads of pain and feeling generally awful, I lost 6kg a week in week 4-5-6 I could certainly afford to lose a bit but a lot towards the end came from muscle so I’ve got a bit of work to do to get back to being fit again.

i hope the next few weeks go by fast for you and before you know it you’ll be out the other side. Stick with it there will be days where you want to just day no more but push through there is a light at the end of the tunnel.

all the best

Joe

Hi Joe, wow you’re doing so well for this stage, that’s given me lots of hope! Thanks for coming back to update us.

I’ve just finished week 3, so halfway through. The first 2 weeks were fine, no side effects at all and I gained 2kgs since the start of treatment. Then on day 10 the lining of my mouth started to break down and ulcers appeared. It’s got progressively worse over the course of this week. The worst one being an ulcer on the right side of my tongue that rubs my teeth. That’s the side of my mouth not being treated, so unfortunately means I’ve had to move on to mainly purreed food now. The pain has got worse too - I have a burning sensation most of the time. Swallowing is ok, I have some Mucositis right at the back of my mouth that hurts when I swallow as it makes contact with the base of my tongue, but my throat is so far unaffected. Taste is weaker but not gone fully at this point - I can taste on the right side of my tongue, right inner cheek, roof of mouth. 

I’m currently still on paracetamol, aspirin mouthwash and topical anaethestics, expect I’ll move on to stronger painkillers next week.

Keep us updated with your progress, it will give me something to aim for! 

Today I finished my final RT session 30/30, so I came to post an update.

I started taking morphine in week 4, and now at the end of week 6 I’m on 24 mg/hour via fentanyl patches and top up with 4-6 5ml Oramorph per day. I’m told this is a fairly low dose of morphine. In addition I take paracetamol and use an aspirin rinse multiple times per day.

I’m in a fair amount of pain. My pain is an intense burning / stinging feeling that is worse when eating and after eating. Until the last few days the ulceration was almost all on the left side of my mouth (side being treated), but completely covering that side, including inside of my cheek, lips, soft palate and back of my mouth. The last few days I also now have ulcers on the right side of my tongue. 

For the past 3 weeks my diet has consisted of Fortisip / Ensure, Scandishake, Calogen and chocolate mousse. They’re very pleased with me for managing the mousse, as apparently this counts as real food and will help to protect my swallowing function. I haven’t lost any weight since the start of RT. “Eating” burns like hell, but I rinse my mouth with aspirin beforehand and that enables me to get 2,500+ calories down me per day.

The outside if my face and under my chin is red, but not open. I have the feeling of mucus at the back of my throat but it’s not too bad. No mouth dryness so far, in fact I currently have excess drool! Except for nighttime when my mouth feels a bit dry. I’ve still got some taste remaining, in the part of my mouth that’s not ulcerated. 

Now I’m hoping I’ll be one of the lucky ones for whom things don’t get worse over the next two weeks! I’ll give another update on progress. 

Joe, how is your recovery going now? 

Hi, so I’m a little over a month past treatment my taste buds are back if not a little odd and confused about different flavours at the moment . But I’m feeling great in myself it didn’t take long once I started eating properly again.

i lost a total of 20kg which a lot was muscle mass as I used to be a big swimmer. I’ve just signed up to run an ultra marathon in June (100km in 20hrs) as a target to really focus on getting better

hows your treatment going? Must be nearly at the end now

Hi Joe, wow your recovery has been super fast! Do you have any pain remaining? Are you eating fairly normally? What was your surgery, did you have a reconstruction?

yes I’ve just finished, I posted my update a few posts above.

an ultra marathon, impressive! Which one are you doing?

Hi my name is Tracey I had surgeryv2 weeks ago today cancer of the tongue , I’ve had partial tongue removal and  left neck dissection but m my scary in neck is basically ear to ear now await g results tonsee uf soread to tisdues and nodes , mynpsun after 5 days was not to bad but but over the weekend I’m in agony spasms in face ear and neck , my tongue still feels thick so I’m only managing soft foods still , just need to know if all this is normal , my shoulder is giving me so much discomfort ,I’m strughking to lift and even get comfettabke , feel like I’ve gone backwards instead of forwards , on 10 mg of oxycodone quick release 4 times a day and they have started me on slow release every 12 hours 10 mg as a top up , can you give me any advice if this is all normal , im

trslky struggking today andcquite emotional x

H Tracey 

Welcome and so glad you have found this forum   as you will really find some wonderful support here. Your surgery sounds like you’ve had very similar to mine (5 years ago). I would say that at the moment everything that your feeling sounds pretty normal. I don’t know if your going to have radiotherapy/ chemo after your neck op?  Hopefully not, but don’t be too alarmed if you do as many of us have. It normally depends on your lab results on your lymph nodes. I had cells in some of mine but they were well contained so my treatment was labelled as a belt and braces job in case there were any undetected.

Your tongue will be sore for a while yet but it will recover fairly quickly, like you at the stage you are now ,I just had to eat soft food and took plenty of painkillers and mouth wash. Eating will be more of a problem if you have to have treatment?? 

Your shoulder problem is normal and will be painful and stiff so you do need to do your exercises.  Stand facing a wall and walk your left hand up the wall as far as possible to strengthen the shoulder muscles on that side otherwise it will be very stiff  and difficult to raise your arm long term. I did it every day and now my arm raise is only slightly less than the other. 

The surgery is all over now so keep looking forward and think of that Christmas dinner! 

Well done brave lady, always here with any questions 

kindest regards

Carol

Hi Tracey. I had same op on right side. Its not that long since your op so you will be pretty tender.

I was told to expect nerve pain as they cut through them getting to nodes,and yes you get quite a belter of pain at times. It takes time but it does improve.I am numb on right side of face and neck I think it is now going to be more or less permanent. Having the area touched at checkups was and is torture.

I began stretches and facial excercises as soon as I could,they do help.Also when the scar was well healed I massage with bio oil gel that has helped alot too. My shoulder gives me trouble too again I do shoulder lifts and it does help. Theres some physio videos online that are really good too.

Hang in there it does get better.xx

PS> my facial pain was trigeminal nerve pain,no painkillers touch it.

Hi Tracey. I had same op on right side. Its not that long since your op so you will be pretty tender.

I was told to expect nerve pain as they cut through them getting to nodes,and yes you get quite a belter of pain at times. It takes time but it does improve.I am numb on right side of face and neck I think it is now going to be more or less permanent. Having the area touched at checkups was and is torture.

I began stretches and facial excercises as soon as I could,they do help.Also when the scar was well healed I massage with bio oil gel that has helped alot too. My shoulder gives me trouble too again I do shoulder lifts and it does help. Theres some physio videos online that are really good too.

Hang in there it does get better.xx

PS> my facial pain was trigeminal nerve pain,no painkillers touch it.