Reaching out

Hi Screech Owl Welcome to our small community group sorry you’ve  found yourself in here, First bit  if advise please please keep off Dr Google you will only scared yourself more than you already are. I am 3 years post treatment for SCC  tonsil cancer with several affected lymph nodes. Surgery wasn’t an option for me as one of my lymph nodes was too close to spine for comfort. Will tag Peter @PFJTHS he had neck dissection.for lymph nodes. 
Hazel 

Hi Screech Owl

I am sorry to hear about your cancer and that you need to have an operation.

I have a different cancer to you but it was also SCC. I have had at different times a neck dissection on both sides of my neck and during my last operation had a lymph node removed from near my collar bone.

I found I had a quick recovery from all of these operations and they did not greatly affect me so I hope it is the same for you.

It was the larger operations on my jaw that took longer to get over and the radiotherapy.

I hope that you have a quick recovery from this operation.

Wishing you all the best

Lyn

Thanks so much, Lyn - that is very reassuring.

Thanks, Hazel.  I will take your advice!  It is so reassuring to speak to people who have been through all this already.

Hi  I would concur with Lyn.  I had 2 RHS dissections and both I managed well.  In the last they removed all the lymph nodes as a precaution.  I've not noticed them gone!..  My surgeons were very good with the scars and they are hardly noticeable.  There can be some lasting side effects, but I've not found them limiting in any way.  Physio and determination will help.

Hi Screech Owl

I too had a neck dissection but it was in conjunction with robotic surgery to remove a tumour from the base of my tongue. This was in June 2018.

I experienced a numb face on the surgery side together with a numb ear and down into my neck.  I also couldn't lift my arm out to the side.  All pretty much normal for this type of procedure due to damage to the nerves that get moved about while the sugeon is removing lymph nodes.

I was given gentle exercises to do from day 4 after the surgery to help keep my neck supple.  I also saw a physiotherapist for at least a year afterwards to help get my arm working again and work on increasing the movement in my neck and shoulder.

I still have a numb ear and neck and part of my jaw but a lot of the feeling has largely returned as the nerves have repaired themselves.  The scar is barely noticable.

All the best.

Linda x

Thanks, Linda.  I'm assuming they will remove all the lymph nodes as well as the two tumours.  I've got an appointment with a surgeon next week to discuss the operation.  Are there any questions you think would be useful for me to ask?

Sorry you’ve found yourself in here Screech Owl. All I’d add to the above is - write a list of questions down before you go and take a notepad to jot down the answers, and any other info, when you’re there. Believe me, in the stress of the moment you’ll likely forget half of it — especially any positive bits and especially if you’re on your own. With very best wishes, M

Full removal I think will depend on what they find.  They took my cancerous one first time around and then the remainder as a precaution because they were not sure where the cancer may have gone.  In your case it may just be the 2 tumours.

I would be asking for a clear explanation of any issues that could arise.  As Linda said there are key nerves running through the dissection site.  Some control the arm movement at the shoulder, some the front chest and some the muscles around the jaw and lips.

The surgeons will do their upmost to not cut them but even gently moving them out the way can cause issues that are relatively transient in most people, but may last 18+ months.  Like Linda I had problems with arm movement, but after 18 months I suddenly realised I had that movement back.  I can scratch my neck and it feels like I am touching the top of my ear!  That will never improve and is kind of a novelty.

I would also be asking if they think that they will get clear margins around the tumours and if so what is the need for radio/chemo.  The full answer will only be once they have the pathology back.

Clearly you will need to know what the expected length of stay is.  I was only in overnight for each dissection.   Your hospital may have a different protocol.

As Mark has said take a notepad and write down any questions you think of before hand and note down the answers.  NO QUESTION is too silly to ask.  Once home if you are unsure of anything contact your CNS ( make sure you have their details) and they can go over things for you.

Thanks - good idea, my memory isn't brilliant at the best of times.