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, 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 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, 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 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