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? 

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 - very new and this is my first post as my partial glossectomy and neck disection is this Thursday - gulp.

It's really heartening to be able to read about other experiences so I've half an idea what to expect.

Apparently my treatment plan is going to be really aggressive so I have one question - 

How long after surgery and getting home do they start the chemo/radiotherapy?

M husband has turned the corner and should be home soon. The operation part hasn't been the problem it has been pneumonia.  We won't know about radiotherapy until we get the results from pathology but have everything crossed he doesn't require it. My husband has been in hospital for 13 days now but that's because he's had two operations.

Mine was about five weeks

Hi Martin

They will start no later than 6 weeks, but they'll want to give you a few weeks for healing before they start and likely want to see the results of pathology. 
 

dejavu

glad to hear your husband is on the mend. RT was very painful but the surgery was by far the worst part for me.

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 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.