Hello all, new here! F37 in Scotland

Hi RowanBerry 

Welcome and glad you found yourself in a place to talk to us.

I had a tongue cancer but likely a different kind to yours. Mine was in the tonsil tissue at the base of my tongue. I couldn't have surgery so I had six weeks of RT. I was T2N0M0 ( that a small tumour with no nodal or distant spread) The MRI showed nothing in the lymph nodes and while tiny cancer can't be picked up so oncologist couldn't be sure it didn't matter as the RT would have dealt with it ...and here I am nearly six years later

RowanBerry said:

I would be interested in the community's view and experiences on this. I am also not sure if there are other options besides these 2.

Yes. A Sentinel Node Biopsy. This involves injecting dye into the tumour and seeing which lymph node is draining it so you just get that node removed. It's technically a dissection but not invasive. It would mean a short wait while it was organised but to tell you the truth with a T1....if it was mine...I would take the chance. Not many places do it for head and neck but it's pretty standard for breast cancer 

If you go for the dissection you need to ask what level the surgeon is going to take and what the likely side effects will be.

It's difficult. Lots of people here have had them and recovered pretty well. Some have been left with shoulder issues. It really depends on how invasisive the surgery is.

Have they suggested a PET/CT to check for metastasis either to your neck or distantly? that might be an avenue to pursue.

Thank you Dani. 

The consultant surgeon did mention Sentinel Node Biopsy but said it is not recommended and not reliable... Maybe because if the nature of it being left to chance and the tumour is already out? Don't know if this is a blocker. 

The neck dissection does sound very invasive and after I have been told "there is a huge tumour -no tumour-actually there was a small" one it has been so scary to hope for anything. 

The external lesion was detected in end August. I had 1st biopsy mid Sep (got results end Oct that was inconclusive), then MRI 1 week after that which is why they thought there was a large growth. CT in November showing there was nothing visible. End Nov had a surgery to remove the lesion a d exploratory which discovered the small 34mm tumour. 

And here I am given 2 main options to leave it and worry all the time ot do neck dissection which seems to be "go big or go home" approach and very scary. 

I am supporting the family and currently in middle of pending redundancies at work (impact unconfirmed) so having more time off and physical change adds to the worries. 

RowanBerry said:

End Nov had a surgery to remove the lesion a d exploratory which discovered the small 34mm tumour. 

I beg to differ on the description of small. Mine started out at 18mm and ended up 24mm by the time the RT was planned and that was classed as a T2 

Cancer research has an explanation of Classification here. 

https://www.cancerresearchuk.org/about-cancer/mouth-cancer/stages-types-grades/stages-oropharyngeal#:~:text=There%20are%204%20grades%20of,not%20much%20like%20normal%20cells

Do you know the HPV status? 
I can’t advise you but to be honest if no radiotherapy was planned I would seriously consider a dissection 

Good to know. Interesting it was classed T2. I was told anything under depth of 40mm or something was T1. 

I don't know the HPV status but I have asked for clarification. Just had the appointment yesterday and it was so much information and confronted by these options, my brain just locked down. 

The tumour is now removed with clear margins, I think this is good and means from the tongue it is 100% gone and can't grow more?!

Thank you. 

RowanBerry said:

The tumour is now removed with clear margins, I think this is good and means from the tongue it is 100% gone and can't grow more?!

Yes if margins were good that’s right. 

You could ask on young tongues. They are a charity specifically for tongue cancer. 

https://www.youngtonguesglobal.com/

let us know what the members there say. They have a very active F B page you could join. 

I will do! 

Thanks for pointing this out. 

Hi and welcome from me.

Dani has given you lots of good advice.  I will say the practicalities of my journey.

My cancer was found from an enlarged lymph node.  Since that day five years ago they have chased the primary tumour and eventually found it a year ago.  8 surgeries and full chemo radiotherapy.  My profile lists all the twists and turns.

Neck dissection - I have had 2. The original one to remove the enlarged node and a subsequent one removing all the lymph nodes looking for further evidence of the tumour.  Both dissections I recovered from really well.  The main effect was in my shoulder.  It is a slow recovery but a good one.  Depending on what they have to do it could cause other issues, but if it is just the lymph nodes and not a tumour embedded in your neck then probably they can get those out with minimal issues.  Unlike what you may have seen on Google my neck dissections have left minimal scarring and you have to look closely to see where they went in.  If you have not yet been on Google - DON'T - what you see is generally old techniques or very extensive cancer surgery.

Watchful waiting - which is again what they suggest - was the route I took once there was no evidence of the tumour.  I was seen every 1 - 2 months and had a few scares as well as 2 further instances of the tumour appearing.  When they actually did find a tumour in my tongue, about a year in, it was about the size of a grain of rice and I knew nothing about it.  That subsequently disappeared on its own accord.  Last year it again appeared, but much larger and again I did not really know it was there, and thus CRT was the preferred route with a proper target to zap.

I am comfortable with my choices.  I have always found during watchful waiting that the hospital would get me in really quickly if I was concerned about anything.  I felt quite safe taking that route having had all the evidence from the dissections saying that there was nothing there at that time.

Hope that helps.

Hi RowanBerry

In relation to the recommended possible neck dissection. In my experience I found the procedure quite easy compared to other ops I had for my jaw cancer.

 I have had 2 neck dissections at different times on either side of my neck. Each time I was only in hospital 2 days until the drains were taken out. The side effects for me are not severe. There is a numbness from the bottom of my ear to my collar bone that  has improved over time although I still have some altered sensation and a feeling of tightness in my neck. Immediately after the surgery I had reduced range of movement in my arm and could not lift it above my head but this improved spontaneously over a few weeks. I now have normal range of movement in my arms. I have got used to the altered sensation and it does not cause me any concern now. I know that others have had more issues with the range in their arm and have had physiotherapy for this. It depends on how much the accessory nerve is bruised during the op.

Discuss with your surgeon the possible side effects from a neck dissection as it can vary. The neck dissections were highly recommended for me to reduce the risk of the jaw cancer I had spreading so I took my surgeon's advice and have not regretted it.  I am currently on  3 monthly reviews with my surgeon and am doing fine.

Really just to reassure you that a neck dissection is not all doom and gloom if you decide to go down that path.

Lyn

Hi

Dont Worry about the neck dissection. I’m a week post op now and am ok. Just had 20 stitches out. My lump was big! No issues. Shoulder fine. Tongue fine. 
I’ve had two surgeries in a month and I’m ok. Think the not knowing is the worse.