Hi nicki

I had the same back in 2017 and my tongue still tingles, not painful either but like ive burnt it on hot food

Hope everything is healing well and that the rest of your treatment goes well. Its tough but you will get through it

Nat :) 

How long did your swelling take to go down and  yeh mine is tingling loads atm. I had my surgery 5 weeks ago I’m hell of a jumpy worrying over everything I still have to undergo radiotherapy yet , did you have that? 

Think it was six days before they removed my drains it certainly made going to the toilet easier. Ten days before they removed the massive bandage on my forearm where they took the flap from.Had to return to hospital for that.

Sounds like your doing great I never needed a Trachy..

Keep taking the meds and get some sleep..

Hi everyone.. I'm not sure if any of you are still going to be looking at this thread. But I'm hopeful others will be looking for information too. I have just been diagnosed with tongue cancer too (T1 thankfully), the tumour appears to be fairly small. I am due to have a partial glossectomy (no reconstruction needed) and sentinel node biopsy. They are optimistic at this point it hasn't spread and that could be the end of my journey, however only the results after surgery will confirm whether anything further is needed. I feel ok so far, but I am worrying most about the impact on my speech and eating. Apparently impacts should be temporary, and I should be back to almost normally eventually. I'm quite young to have this diagnosis apparently, and speaking is a large part of my job. 

Hi Esuma

Sorry to hear about your diagnosis. I had a partial glossectomy and reconstruction for T3N0 tongue cancer, followed by radiation 2 years ago. I am also quite young (39 at diagnosis) and speak a lot for my job.

My speech was 95/90% back to normal within a couple of months. I was confident enough doing business meetings only about 6 weeks after the surgery (with people I knew). I was say 95% normal within about 6 months. I spit a little more than I did before, but I have no concerns speaking on the phone, presenting in person or on webinars (so with a camera on me).

Eating is also 90% normal. I was on a liquid diet for about a month after surgery and my eating was about 70% normal by 6 weeks when I started radiation. Radiation caused a lot of side effects with eating for a few months so it's hard to say what would have happened with no radiation, but I guess I would have continued to improve from that point. Even with radiation I was about 85/90% normal by 6 months (struggled a bit with things like salad and dry food). By about 12/18 months I'd say there's nothing I wouldn't eat, although very spicy food still hurts - but that's due to the radiation. I still eat spicy food, I just feel it more than the average 41yo (more like a child say), so I choose less spicy. 

Thank you so much for your reply. I'm sorry to hear you also had to experience this. I'm 31 but have had oral lichen planus for many years (apparently the cause of my cancer). It's really reassuring to hear how quickly you were able to go back to work and feel confident talking. I've been told around 1-3 months off work should be about right, which in the grand scheme of things is not so bad! 
 

Did you have a neck dissection too? I was given the option to choose between this and a sentinel node biopsy, I am hoping to have the sentinel node instead and keeping fingers crossed nothing comes back from those to need further surgery / radiotherapy. Given my luck so far though I'm not ruling anything out! 
 

Has your taste been effected at all? I already have to avoid spicy foods due to the lichen planus so I guess at least I'm used to that! 

I have had my surgery now - in the end did go for a sentinel node biopsy (and potentially lucky I did as the nodes identified were on both sides of my neck and on my collarbone). Thankfully my biopsy results came back clear and there were good margins from my partial glossectomy so I don't need any further treatment - such a relief! Apparently I'll be followed up every 6 weeks now, and reviewed for 5 years - I guess that must be fairly standard? 
 

My speech was much better than I was expecting and eating gets a little bit better every day. I still don't have my appetite back but it's getting there! I'm on a soft diet, not sure how long for. 
 

I still feel in shock and disbelief, and feel so unbelievably lucky that I've had a 'simple' journey. Hopefully my speech will get back to as normal as possible, I've noticed the last few days I feel like I'm producing excess amounts of saliva! Not sure if that's just in my head though and I'm just more aware of it due to the heightened weight of swallowing. 

I had full reconstruction in April 2021 and had to go back for chemo and radiation in Jun and July.  Although a significant part of the swelling has gone down, when I talk or eat, it aggrevates my new flap and the flap/tongue swells up.  It makes talking difficult because it feels like there is a ping pong ball in my mouth.  My the end of the day, after having done limited talking and eating 3 to 5 feels, my tongue is very swollen.  My guess is the tip of my tongue is sensitive and it rubs on the back of my lower front teeth.  Has anyone experienced anything similar?  Thanks.

Hi All - finished my chemo/radiotherapy in May. Stopped eating mid April due to the radiotherapy and didn't start eating again until early July so I was chained to the tube feeding pump for 16 to 20 hours per day and still lost 41kgs! (Every cloud as I was 130kg on the day of my operation!

Anyway - nearly 11 months out now, eating as much as possible and as much variety as possible, struggle with meat and salad, too dry plus they took alot of my molars out too.

Some days I can swallow well other days struggle to swallow my tablets but other than that back to work full time, speech 97% and so conscious of how much more I talk now. Still can't roll my Rrrs (my spanish isn't that good anymore!) and have to concentrate on some words but most people I speak with don't even realise what I had to have done and my work mates just call me Frankenstein now (due to my scar from ear to ear) so all good.

There's a whole life to live out there - let's go and get it!

Bring on 2022 - Happy New Year all - we made it!

Very good Martin, excited for you.  I would die for a slice of pizza or a hamburger :-)

I can swallow and chew but I can't eat that way.  I have to puree everything in a blender.  My tongue has no feeling right now so it doesn't know where the food is to roll it around my molars or to push it to the back of my mouth to swallow. 

My tongue tingles so I hope this means sensation is coming back.  I also lost my saliva glands and there's a 50/50 chance they recover.  If I could chew, I could still use water to help get it down.

I lost 20 lbs but never had to go on a feeding tube.  I have put 10 lbs back on so far.  Speech is still difficult with the swelling.  It starts off good at the beginning of the day but deteriorates as the day progresses and the swelling sets in.  I am very optimistic this will correct with time.

All the best! 

Slowly slowly my friend. The recovery is a horrible journey with new experiences. My salivary glands played absolute havoc - horrible!, but seems to have settled now, I kept getting thrush on my tongue too in the first 6 months but that's all part of it.

My graft (they took it from my arm) is on the very back of my tongue and down to the root and because of the lack of sensation I don't know where the food is in my mouth so it's confusing when to swallow and unless I concentrate hard on eating I sometimes choke but I guess that's all part of adapting to new ways of eating. I guess if I had pureed food it would be different but I'm too inpatient! Plenty of custard and ice cream is what my dietician wanted me to eat! I crave butter on everything because of the salty taste - lovely.

I speak to someone who is 11 years out, only on the phone though, but her speech is perfect and she says as long as she has lots of gravy or sauce on her pasta then she's fine.

The one BIG thing that this experience has taught me is patience. Its major stuff we've had to put our bodies through (I smoked for 36 years so it was my turn to pay!) but it will recover but unfortunately it takes time.

I'm in Spain at the moment and eating most things that I throw at myself, full english this morning, it's cold by the time I've finished but I would have not even have contemplated that three months ago.

It will come, as I say, not a nice journey but set yourself small goals and look back at the progress you've made - you'll get there - soon.

Always remember we're the lucky one's - I keep putting my foot in it when asking people I haven't seen for a while 'How's........?' - I've also learned that everyone makes it so I for one, will be making the very most of it.

Keep going, bit by bit and hopefully this will be a blot in our history.

Catch me on WhatsApp if you fancy a proper chat?

Hi 

I had a partial glasstomy and neck surgery 3 weeks tomorrow. I'm awaiting results this coming Tuesday on lymph nodes. 

Can I ask how long was your tongue swollen for and how long did it take before you could eat normal food to a certain extent??

I'm hoping I don't need further treatment

Hi 

I had a partial glasstomy and neck surgery 3 weeks tomorrow. I'm awaiting results this coming Tuesday on lymph nodes. 

Can I ask how long was your tongue swollen for and how long did it take before you could eat normal food to a certain extent??

I'm hoping I don't need further treatment

Hi - first of all - be proud of yourself - you may well have come through a traumatic time so well done .

If you allow me to elaborate on my surgery please as it may add some context on recovery.

My surgery was 14 hours, bilateral neck disection (literary cut front ear to ear - no pun) tounge dropped out through my neck, next to my larynx, directed and rebuilt from  free flap from my left inner forearm and then put back together. Plus they took eight teeth out - mostly from the upper jaw.

I was on the ward for three weeks until they released me and all the drains and tracheostomy has been removed with and I hadn't been allowed to eat or drink for those three weeks, then nothing to eat for another three weeks so they sent me home with a liquid food pump and gallons of twocal to feed myself via my nj tube.

Had to have a swallow test to ensure if I ate I wasn't going to be a danger to myself which, thankfully, was OK - milestone one achieved!

Was given the OK to start eating again, lots of yogurt, lots of soup, custard - basically anything to get my strength back, supplement the twocal and get strong again and heal from the aggressive surgery.

Had a couple of weeks on the soft diet then got bored, my gums had healed and the ENT & plastics team were really pleased with the way my graft had taken so move on to solid food!!!

I was eating everything from a bowl of cereal right through to pret tuna baguette & even a nasty old macdonalds cheese burger - just because I could.

My SaLT therapist told me that I was  'hard core' and doing well, I'd lost 9kg in those 8 weeks which I was glad about and could afford to do so too so all good all round.

Things were healing well (apart from my trachy hole) but was told that was normal.

Words of wisdom - my neck aches, especially at night and been told that this is 'me' now! OK - I thought all part of the adaptation, after all I'm still lucky enough to be standing up and facing forward.

What I want to say is - keep up and keep going with your neck physio - super important.

I started my follow up chemo/radiotherapy about this time last year, 30 daily sessions!

At the end of week two I started to notice the effects of the radio and had to back off on the solid food and then my body just said NO. Didn't even want anything in my mouth, even water, thereafter until August time where it was very very slowly back to what ever I could tolerate, which was not alot, dieticians were telling me off, but I was listening to my body and not some grad who had not even a hint of personally experiencing what we've been through bit they do their very best to help with whatever they can - lost a total of 41kg up until September last year (from Feb before my op).

Lots of changes in my mouth and throat from the radio - secretions were horrible horrible but hey that was then. By Nov/Dec start eating again what I could and wanting to eat too. Actually ate Christmas Dinner too and also my taste had started to come back.

Now I'm just off to eat my shears pie, loads of garlic, horseradish and mash - three months ago I couldn't have eaten the horseradish and still can't eat anything spicy but maybe that will come back one day too.

Thank you so much for your comments. Gives me hope that I will be able to eat eventually.

Can I ask how long tracky hole took to heal as mine was a very big hole and seems to have gone quite small but doesn't seem to be healing as quick?

Hello again - I was worried that my trachy hole wasn't healing after reading 5 to 10 days and it would be closed!

I woke up with mine on 19th Feb last year and was worried that it hadn't fully healed by the time I started my 'treatment' at the beginning of April- I even asked the nurse if they'd stitch it up for me but was told 'your doing fine - leave it, be patient.'

Patience is key in this journey and I'm not a patient person so just getting my mind around the fact that I wasn't going to be better all at once - and quickly, was hard so little by little my friend, your not going to be able to eat the elephant all in one go, small steps - small milestones, one at a time & use good old hindsight to measure your progress from week to week, month to month.

How's your shoulder? They had to move my accessory nerve out the way to get to some of the 67 lymph nodes they took out which made my right shoulder drop, 14 months later I'm just about to finish up with the specialist physio who's really helped me get nearly 100% movement back (another milestone reached) (I'm a 53 year old 16 stone guy) just lacking the strength now which just needs building up with some good old resistance bands.

Not sure if they used another part of you to patch your tongue up but I also woke up with some heavy surgery on my left fore arm - literally from elbow to wrist so that's been some intensive therapy to get that back to where it can be, it's getting there, slowly, slowly but 'be patient' as they expect another 3 months therapy yet to get nearly all the mobility back.

How's the swelling? I suffer with lymphoedema round my neck now, different day, different swelling but the specialist keeps telling me 'be patient'.

Having to have patience, for me, is frustrating but my journey has been little wins, small improvements and reflecting on where I was a couple of weeks ago to where I am today.

It's not an easy journey but keep going.

If you want to talk rather than chatting in this forum then happy to 'buddy up' but warn you, I'm so so conscious that since all of these challenges- I do not stop talking!

Keep strong, keep going, don't stop and never give up and you'll get there!

Speak soon!

Hi again

So my left arm is where they took the vein mussel and skin for my tongue. That seems to be healing fine I've got my first physio on Thursday for left arm. Can't feel much of my thumb but rest seems ok.

My tacky hole is healing but seems to be taking doe ever District nurse said it was fine this morning.

With regards to my neck it's defo swelling especially at night time. Stitches look to be Healing fine at the moment as well.

Tomorrow is the big day for results of lymph nodes my sister coming with me. Feel tearful today presume it's all normal that as it's only 3 weeks today from operation

Hey Winter 168 - you stay strong.

I had 67 lymph nodes taken out - 3 of which has cancerous cells in them. They take them as a precaution so the pesky varmit  doesn't have chance to spread 

You'll be fine and sounds like you're on the same journey that I was on and had the same,rare cancer that not everyone gets..

I have my pictures of my op which apparently they are now using to teach so I'm a bit of a photo shoot model!

You stay strong - if you'd prefer to talk on the phone say so.

Everyone's journey is different and it's not the nicest.

I smokes for longer than I haven't (38 years a smoker 53 years of age) so I guess it was my turn - some people don't even smoke or drink and are as healthy as a butchers dog and they still get caught.

Small steps and just keep looking back to where you are now to where you were in two week periods - you'll see the difference..

My chops got really swollen, and they're entitled too, at the moment, but the swelling goes down. I came back from Spain the other month and the automatic passport reader didn't even recognise me, I had to come through with the rest of the rabble but I took it that I must be getting my new rugged looks back.

I've been welcomed after and we'll monitored and they're starting to push my MRIs further apart as there's all the signs that things are good and getting better.

My dad had lymphoma - twice- 5 years apart but that was twenty years ago.

Easy for others to say but keep your chin up, keep strong, keep fighting and if you prefer to talk I'll drop my number on here (is that allowed???)

Good luck for tomorrow

Hi 

Well over the moon got my results yesterday no further treatment needed I cried and so did my sister when the consultant gave us the news.

So I've been really lucky I'm aware of this but I did go dentist straight away when noticed lump on tongue.

So now it's rhe hurdles of trying to eat still on a level 4 purée diet, as tongue swollen and talking is hard work as tracky hole still healing.

Left arm where skin graft etc taken still aches and sore and been told to be very careful for next 6 weeks and don't over do it with arm. Physio tomorrow for shoulder

Can anyone advise how long it too for tongue swelling to start to go down and how long took to be able to eat normal food. I know it was only 3 weeks last Monday I has operation but feels like a life time ago already and I'd kill for a normal meal 

Congratulations - well pleased.

Wouldn't be able to comment on the tongue swelling as I had 30 hi power radio therapy sessions to deal with but didn't make my tongue swell passe but as I mentioned, between 18th Feb and April 5th I was back to eating anything and everything. Just be careful around swallowing where you may not have any sensation in that part of your tongue as I get caught out where the food is in the back of my throat and tiny little seeds from granary bread make me cough them back up again.

Make sure you do as the physios tell you to do and above all - go and live your life that others aren't as lucky to have the opportunity to do so.

Take care!

Hi everyone

Well operation was 6 weeks ago today and my tongue us still swollen but managing level 5 moist and minced meals now.

I have a hard lump now under my chin and left side of neck under jaw line is swollen now and feels hard. I had my lymph nodes taken out on the left. I'm wondering if this is internal bruising or the start of lymphedema??? Any one any ideas??? If lymphedema do I need to try and move the fluid to the right where the lymph nodes are???

Also last night my tongue was that swollen struggled breathing slightly. How do people sleep I've bought a wedge cussion and put a pillow on that???

Tracky hole still not healed just a very small hole now.  Can't wait for that to be done and left arm where flap was taken hurts but district nurse says healing well.

I'd love a normal meal, to sleep without neck hurting and tongue swelling any advice please

I know I need to be patient but seems a slow process

Thanks

Hi Winter 168 - me again. 

I've a couple of tiny nodules right underneath my chin, had them ultrasounded and they said on was a blood vessel the other was a cyst - my surgeon had a look and a feel and he's told me to leave them alone as this is where they stiched my muscles back to my jaw.

I've a scar literally from ear to ear (or 'ere to 'ere) and stiff neck, neck ache most nights every night by radiotherapy and resulting muscle fibrosis  apparently means that's me now for the rest of my days but uf you've not had to have radio them plenty of physio and stretching does help.

Lymphodeoma - buy a babies hair brush, nice and soft and then gently brush down towards your collar bone - I find that helps but the lymphodeoma nurse can verify that for you plus show you some other exercises to do to stimulate the system. Mines worse than other days but it's been OK last few weeks (I'm 14 months out from my op and nearly a year out of chemo/radiotherapy) 

How's your taste? I would have though you would have tried to include other textures by now, have some yogurt to hand as a spoon full of that helps even the pain killers go down.

I'm just getting my sleep apnea sorted as my tongue stops me breathing at night so back on the CPAP for me.

Hi 

Thanks for reply. I've managed Weetabix, cottage cheese , a bit of chocolate that tasted bitter, a pasta pot, trifle defo yogurt, creme caramel, mousse and custard. Can't manage rice pudding.

Thanks for info on neck and lymphedema. 

Doesn't sound great your sleeping hope my tongue goes down at night time 

Thanks again