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Partial glossectomy

30 Jun 2019 05:06

was diagnosed with tongue cancer end of May had partial glossectomy and neck dissection on June 4th 2019, the bloody cancer had gone into 3 out of the 47 lymph nodes removed but from scans the cancer has been contained locally in the neck. I am due radiotherapy soon which I’m bricking!!! Also been reading that people are still struggling to eat months post op. I am not too bad but my appetite is Poor as my stomach shrunk and I lost 3 stone (was overweight so it’s not been all bad news and I have more energy ironically) , is it normal to have a tingling sensation on post operation site of tongue. Not painful in anyway I am assuming it’s healing. They don’t seem concerned at the hospital. 

I have been given some pretty sound advice on how to protect your mouth from severe ulceration during radiation treatment so I am following said advice also rehydration of skin  before during and after treatment. Has anyone else have it in the lymph nodes?

Partial glossectomy

30 Jun 2019 18:40 in response to Nicki-D

Hi there ..

Sorry you've not had an answer to your post .. but maybe it's a rarer cancer so not so many on here with it .. I'm answering your post to say welcome to our chat room .. and this will take you back to the first page where hopefully someone will pick it up who can help you with info ...

Chrissie x

Partial glossectomy

30 Jun 2019 19:51 in response to Nicki-D

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 :) 

Partial glossectomy

2 Jul 2019 07:40 in response to Nat712

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? 

Partial glossectomy

2 Jul 2019 10:10 in response to Nicki-D

Hi nicki

I cant remember how long the swelling took to go down but dont think it was very long as i was back at work 4 weeks after my op on my tongue and i worked speaking on a phone at that time.

Yeah i had chemo-radiotherapy so 6 weeks radio and chemo once a week. It was really tough as it made me very sick but everyone is different and other people i met in treatment didnt have many issues with it at all so everyone will go through it differently.

Partial glossectomy

2 Jul 2019 13:52 in response to Nat712

5 weeks and swelling is still there my talking isn’t that great but I’ve lost a significant part of my tongue and lymph nodes my only concern is  there’s swelling and tingling around the site where the tumour was. 

Partial glossectomy

2 Jul 2019 23:00 in response to Nicki-D

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.

Partial glossectomy

2 Aug 2019 17:20 in response to Nicki-D

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 

Partial glossectomy

15 Jan 2021 14:31 in response to SW80

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 

Partial glossectomy

28 Jan 2021 22:41 in response to Dejavu71

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.

 

Partial glossectomy

9 Feb 2021 18:59 in response to RB27

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

Partial glossectomy

10 Feb 2021 00:19 in response to Dejavu71

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. 

Partial glossectomy

10 Feb 2021 00:30 in response to irate

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. 

Partial glossectomy

10 Feb 2021 03:43 in response to RB27

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.

Partial glossectomy

10 Feb 2021 07:17 in response to SW80

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