Tongue Cancer

Hi Glad it worked just keep on top of it for now. you have good  days and not so good days it’s all part of the process. Once you’ve been had  had your results  and know what the next stage is going to be yiu will get your head in gear In the meantime if you need anything if just a rant popmon 

Hazelx

Thank you Hazel, will do! Carol

Hi Guys, well not such good news about me! I had a call from my Surgeon this morning to say he wanted to have me back in to hospital next week to remove my lymph nodes from one side of my neck!

The reason being is that although he managed to remove all the tumour from my tongue, it was so deep that he feels it best to remove the lymph nodes as well. He is also going to remove a bit more from my tongue to make sure the margins are safe!

I am devastated of course as I really didn't expect this to happen because, before the op the scans showed that it hadn't spread, so now, they basically do not have a definitive answer to say whether it has or not. hence a neck dissection!

Is there anyone who can help me with regards to my next procedure that I have to go through, it would be very much appreciated.

Thank you.

Carol x

Hi Carol

I had a small tumour on my tongue that was lasered off, clinically there was no spread to my lymph nodes and scan was negative but my surgeon decided to do a selective neck dissection at the same time as my tumour op to check it hadn't spread as a precaution.....I am pleased he did as it had spread to the nodes, microscopic hence why it wasn't picked up on the scan and on clinical assessment but all the same better to know now than later.

I was fine after my tongue and neck op, only in 2 nights and bounced back pretty quickly the neck site is not painful after the op, in fact there is usually some numbness as the nerves are bruised during the op.  Ask for exercises to do as these will help keep the neck/scar supple and improve things going forward.  My smile was a bit crooked after the op, but it has come back now (took around 5-6 weeks).  My shoulder was a bit droopy too but that has improved too - I just keep doing the exercises to keep things moving.

Good luck with your op, I am sure it will be fine, I think it sounds and looks worse than what it is.

Sue x

Thank you Sue, that has been a big help to me, it has put my mind at rest a little. Will let you know how it all goes. Carol x

Hi Carol 

Sue has given you some sound advice.Be guided by your team they have your best interests at heart. 
Sending  hugs and keep in 

touch 

Hazel xx

Thank you Hazel, your comments have been taken on board, and I certainly will keep in touch.  Carol x

Hello Carol, so sorry you have to go back in, in just trying to work out why it was not done during your first operation with clear margins it seems a bit unfair. Are they going to do a full neck dissection or just one side where the lymph nodes are. A neck dissection is where they open up around the neck and see if they can see any sinister or iffy nodes, glands, etc. I had full neck dissection from ear to ear during my first operation when i had floor of the mouth cancer, they removed a bit of my tongue along with lymph nodes and saliva glands as they were cancerous and repaired the floor of my mouth with skin grafts, etc. Yours is not as severe as mine but i just thought i would tell you my experience.

The operation is not too bad and heals up fairly quickly but does look a bit puffy/swollen where they use staples and stitches to hold the dissection together, this is common and is just the healing effect. Sometimes they remove halve the staples /stitches then send you home if they think you are well enough and after about two weeks you go back for a check-up and more staple removal if the consultant is happy. 

When they do the dissection they try and follow the creases in the neck so when it heals it helps hide the scar, i had mine done in 2008 and if you did not know me you would not know any surgery had taken place. I have had three big operations in the same area and the neck dissection was by far the least hassle. Feel free to re-post if you want any more info, you could also read my profile as it might help. Sorry for rambling on, best wishes, take care.

                                                                                          Chris xx 

Hi carol. I didn’t have a neck dissection so can’t help there, the other guys have done a good job but I just wanted to send you my best wishes. It’s so hard to get through this disease even if it’s straightforward then to have such a dip in the roller coaster is a real challenge. I had an avid PET/CT at 16 weeks so I do know how it is to be pitched into the machine again. 
I’m sure you’ll get exercises from physio. They are really useful in keeping you supple and out of discomfort. 
How many layers of nodes are they looking at? 
Best of luck and keep in touch with us 

Hi Chris, Cricky! sounds like you have been through the mill and back again!

All I can say about mine is, he is going to do one side of the neck to remove lymph nodes, he explained about maybe a droopy lip on one side for a little while and a stiff shoulder.

Unfortunately it was only a telephone call, so I had to try and take it all in and make a decision there and then as he has a slot to do it on the 18th February, it is at a private hospital where I went for part of my tongue removal, so I didn't want to lose this slot because one never knows how things will change so quickly with this covid, and put back on the list.

He did not bully my in to a decision, but clearly advised me that after speaking with his team he felt that would be the next best step for me.

I can only assume he didnt do the neck dissection in the first place was maybe because the lymph nodes showed up clear on my scans.

Anyway, he is an excellent surgeon with lots of experience, so I have put my faith and trust in his hands.

Have to say its like a bloody nightmare that I am going through at the moment, in the hope that I am going to wake up soon!

I am a very happy go lucky person generally, wear my heart on my sleeve, and live life to the full. I feel now like my personality has been taken from me and I am being punished for whatever reason.

Sorry about that, rant over!!! he he

Good luck to you Chris, and thank you for your excellent input, it really does help.

Carol x