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? 

The tumor on my tongue was very small so thats probably why my recovery was a lot quicker. Do you have any appointments coming up so you can mention your concerns and they can check the healing.

I didnt have my neck dissection at the same time as my tongue op as was given the all clear after tongue op then they found it had spread to my lymph nodes 3 months later after a check up so maybe that could be another reason yours is taking longer to heal.

Hi Nicki

i had a partial glossectomy and free flap reconstruction, plus neck dissection on 11th June. I’m now one third way of the way through radiotherapy. It had not spread to my lymph nodes so RT is to my tongue only.

my surgeon told me the tingly tongue at the point where they cut is nerve regeneration and I believe it can last a long time. Most of the swelling went down over the course of a few days and weeks, but they also said the flap will continue to reduce in size for months, as the skin becomes thinner. Did you have a reconstruction too?

selinz 

My husband is due to have partial glossectomy, neck dissection and reconstruction from his arm in a few weeks, would really like to chat with anyone who has had the same operation to let me know how you now are and anything you can say to help me get my husband through this, he is so worried. Thank you 

Hi,

Wishing him luck I am sure he is in excellent hands to get him through surgery.

My dad is going through the same procedure next month. Would like to know if anyone knows what the recovery process is like and how much has it impacted on speech and eating.

I had this operation in December speech is fine but I struggle with the s sound

Sorry for my slow reply, I missed this. Has he had the surgery yet? The first few days and weeks were tough. I had radiotherapy after which definitely set back my recovery by several months. However my speech was about 80% normal once the swelling had gone down, and 90% within a few months. 19 months or so post surgery it's about 97% normal.

As for eating, I was on a liquid diet for a few weeks post surgery, and then post RT finishing, and then it slowly returned to normal. Now it's 95% - I can eat pretty much whatever I want, but spicy foods are more spicy (that's due to the RT), and certain foods I need to eat a bit more consciously - eg salad. I also eat more slowly - but that's not a bad thing!

It was tough at the time but there are no long term effects that I would say impact my quality of life. 

Thanks for your reply [@irate]‍ . That's great to hear you had no problems with speech.

Would you be able to share your experience of the post-recovery and anything which help the recovery process. We are very anxious as my father is 85 and feel his recovery might be slow. 

I had a partial glossectomy (small tumour no reconstruction from arm muscle needed) with sentinal node biopsy in June 2020. The sentinal node biopsy showed up 3 positive nodes so had neck dissection as second op in July followed by radiotherepy Augist/Septebmber. 

Recovery from the surgery was not too bad at all. I had ice cream  within a couple of ours of waking up from the op, liquid diet for a few weeks - lots of homemade soup helped - then soft diet for a few weeks more eating was close to back to normal by the time the radiotherepy started.

Recovery  from radiotherepy was much tougher - started to have a really unpleasent taste in my mouth from about half way through which made food taste unpleasent lost quite a lot of weight, (was overweight before so not all bad) and eating very difficult for for latter half of radiotherepy treatment and about six weeks after - subsisted for a while mainly on hospital prescribed ensure drinks (mixed with coffee and suger helped with taste for me). had a feeding tube for a couple of weeks at the end of the radiotherpy - was quite opposed to the idea of  this beforehand but it was very temporary and actually really helped me.

Now, 4 and a half months after the end of radiotherepy I can eat and drink pretty much anything  though still can't really tolerate spicy food. 

Speech for me was close to back to normal by the time the radiotherepy started but them went backwards during ratiotherepy,  but is now close to back to normal again. The speech therepy and dietician team are a really important supportive part of the process following their advice and exercises to stretch mouth and tongue and preserve swallowing function are really important  s, l and r sounds were the ones i found most difficult -

I think recovery time probably  does depend  on the amount of the tongue they need to remove though mine was small and didn't need a reconstruction from arm muscle - I guess if the tumour is larger, recovery will probablly take longer. It  can feel really frustrating at times, communication and eating are such basic things to have impacted - and i do remember moments - particularly after the radiotherepy - of wondering if things would ever improve - but looking back now where i am 4 months after radiotherpy is a whole world better than where I was just a couple of months ago. 

Wishing your father best luck for the operation.

Hi thanks for your the response my husband had the op on Wednesday (17 hrs ) as the flap would t take fourth attempt it went ok, chest infection Friday and then Monday flap failed and had to have the op again and part of his breast used, he is still in ICU because of chest infection . It has been a horrendous week and he has been poorly, I have everything crossed he turns the corner soon he is so fed up.  It helps reading that you are ok because at the moment I am so worried 

I was in hospital a total of eight nights after removal of tumour on floor of mouth and partial glossectomy and neck dissection with removal of three lymph nodes.

Trying to eat as much as possible on a sloppy diet which I am still on  8 weeks later whilst under going radiotherapy.

Flap inserted under tongue taken from wrist is still swollen and with the removal of seven teeth eating very hard.

I had no issues that the district nurse could not solve my biggest issue being hungry all the time.

Coming home as soon as possible helped me as I got no rest or sleep in hospital

All the best

I was in hospital a total of eight nights after removal of tumour on floor of mouth and partial glossectomy and neck dissection with removal of three lymph nodes.

Trying to eat as much as possible on a sloppy diet which I am still on  8 weeks later whilst under going radiotherapy.

Flap inserted under tongue taken from wrist is still swollen and with the removal of seven teeth eating very hard.

I had no issues that the district nurse could not solve my biggest issue being hungry all the time.

Coming home as soon as possible helped me as I got no rest or sleep in hospital

All the best

Hi - thanks for all the responses. Been a tad busy past few days and have a really sore throat all of a sudden and a sore arm too which the extent of that was a surprise - the extent of 'work' on my arm  - I reckon they must have rebuilt someone else's tongue too!

So it seems like there was quite a long shallow resection right back to the root of my tongue. The graft seems to be pleasing all of the surgeons plus the doppler probe they've put in is still making a reassuring beat.

Tracheostomy is definately not my favourite part or being fed through a tube at the moment.

These people are absolute professionals - just wonder if there's a really effective way to say thank you to these people?

Hi Martin

You got that arm up in a sling ?

That Doppler was the reason I never got any sleep checked on the hour every hour for the first few days to check the flap has taken.

Keep taking the meds you'll be out of there before you know it.

Don't forget to use the mouthwash regularly I kept forgetting nearly died when surgeon said could smell faint air of corruption never forgot again.

Relax now

Hi irate  - doing much better today than last night were my trachy shifted however nurses and doctors got me comfortable for the night. In fact it probably the most comfortable I've been with it in place. This morning they tried to reposition with no such luck so they removed it along with a couple of drains. 

What joy - just about got used to breathing through one of them then they took it out so need to learn some new tricks now.

All very pleased with my new two tone tongue now such just got to look after it and recover.

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.