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 Hazel - we have two Gary's in our 'gang' Gary J (AKA Guzzle) and Gary V (AKA Vatch).  I've forgotten the order of our treatments/diagnoses but we are all 5 years all clear round about now or sometime very soon.  Met Vatch and his lovely wife Claire in Edinburgh a couple of months ago and he regularly posts on Facebook so I'm delighted to report that he is fit and well and just celebrated his daughter's graduation from Portsmouth Uni with First Class Honours in Biomedical Science - what a clever girl!

Hi

Great news all way round   It’s Gary aka Vatch whose blog I found just over a. year ago who helped me in my early days  of  diagnosis n treatment . If u contact him let him know Hazel aka Radioactive Raz is now one year since treatment started and am doingbok I still update my blog . 

Plus like you we’ve s small tight bunch of us who have already met up and send private messsges almost daily. 

pass my congratulations on as well re their clever daughter

Hazel c

Hi Joe

How is it going? You must have nearly finished your radiotherapy? I’m about to start mine a week on Monday. I had my surgery on 11th June, they removed the tumour and I also had a free flap reconstruction and selective neck dissection. Final staging was T3N0. I’m going to be having radiation to the left side of my tongue.

I’ve lived in Hong Kong for about 10 years and had the surgery there but I decided to get the radiotherapy at the xxx in the UK, mainly as I was so comfortable with the oncologist there who’s a specialist head and neck guy. He’s told me that loss of taste is temporary and should return 3 to 4 months after treatment ends. He said there might be some foods that don’t taste the same anymore but that taste buds are constantly regenerating so there shouldn’t be permanent loss of taste. Let’s hope he’s right!

Like you I’ve never smoked, don’t drink much and I’m only 39, so not a typical tongue cancer patient. My biopsy was p16 positive, and although HPV has no impact on oral tongue cancer (unlike base of tongue, throat etc), my consultant said he thinks that’s highly likely to be the cause. 

Nicola and the rest of you who posted on here 5 years ago, I’ve read the whole thread and am pleased to see you’re all doing so well. It gives me hope!

Selina  

Hi Selina,

Glad to hear the surgery went well! A T3 mustn’t have been ideal but good to see it was N0 so the nodes were clear.

I’ve got 7 sessions left of 30. 

I was warned about the pain that the radiotherapy was going to cause but for the first couple of weeks it was fine I was managing the pain with 30/500mg Co-Codamol by the middle of week 3 though I took a big dip and started the Morphine which was upped straight away and then on to Fentanyl patches it took a week or so to get the the point where I was able to manage the pain properly. My taste went around 2.5 weeks too, now everything tastes awful, apart from spinach and ricotta pasta with tomato and marscapone sauce which I have found to be ok it tastes a little odd but it’s manageable. Water tastes salty and my mouth is always tacky. Hay fever hasn’t helped.

Tge worst thing is the mask for radiotherapy, you have to really take a moment to make sure you’re happy with it before they start the treatment otherwise it can be very uncomfortable. I’m in a Tomotherapy machine - it looks like a cross between a CT scanner and an MRI I’m strapped to the bed with the mask put in the machine to scan me to make sure I’m in the right place then I’m brought out the machine whilst they check the scan against the cost CT then back in for treatment all in all it’s about 15/20mins a day.

my best advice is to make sure that you stay on top of the pain relief as that’s what really makes a difference between a good and bad day for me. Also whilst you still can, eat eat high calorie and fatty foods you’ll need to stores for when you can eat properly I’m on mostly nutrition shakes at the moment and dropped 4kg last week. 

If you have any questions just give me a shout happy to answer any you may have! It’s going to be really hard so I wish you all the best and strength to see you through it

Joe

Hi Hazel, I'm in touch with Gary via Facebook and have just passed on your message.  I think his 5 year anniversary must be around the end of this month or early August.  Wonderful to read that you too have a tight-knit gang who have supported each other all along the way. I've just had a quick read through your wonderful blog (methinks inspired a bit by Gammraygary ;).  I still have a few weird food issues, which I doubt will ever leave me now, but with the 5 year all clear under my belt , I consider it a small price to pay.  As you quite rightly said at the start, when you get that bloody scary diagnosis your first thoughts are the darkest.  I thank my lucky stars that I was born in the 50s and not a decade or two earlier, otherwise I probably wouldn't be here to sing the praises of CRUK and the ever-increasing number of cancer survivors.  I've just sent a wee donation to your justgiving page.  Sorry it's not more but I just sponsored several folk doing wonderful fund-raising stuff (for CRUK, Macmillan and other cancer charities).

Well done you - good luck!

Hi

thank you so so much  I haven’t received notification yet but will keep my eye out the amount doesn’t matter like Tesco say every little helps. Our grandson gave me £1 st the weekend which lol I gave back to him Sunday morning plus a bit more as he stated in bed past 0700 am.   Yes gamma ray definitely inspired me. Our little gsng really motivate each other with tips and jokes. Agree glad we were burn in the 50 s as have heard horror story’s if wall bricks being used to hold your head in place   Shudder the thought. 

Thsnk you once again it means so much 

h xx

Sorry Hazel, don't know what went wrong, I must not have finished the transaction.  Took me a while to find your donations page again, but it should be through now.  Best of luck, Irene x

Hi Irene

Thankmyou very much for your kind donation I will report back ca after I’ve done  the ride in the 27 th. yes they have notified me that you’re donation is there thank you investigate again

Hazel xxx

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 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.

Thankyou so much , your  advice is very welcomed , im

awating results from my lumps and tissues , what does belts and braces mean please , I just wish I  had asked earlier about recovery , I honestly thought I’d be well after a few weeks , they make it sound so simple ,  I also have a numb ear  , and feel like my nerves are all  out as even my clothing hurts my skin at min ,then you come back from theatre and you seem to have lost part of what ever they say to you , im struggling a bit today my emotions getting the better of me , but if I cN be as strong as you and everyone take on here then I will be good , I can’t wait for Christmas , how many weeks months or years are you now from surgery please , I m greatful for you’re reply xxx