Tongue cancer surgery and neck dissection

I had a T2 (1.8cm on presentation but 2.5 cm at treatment ) SCC at the ba ck of my tongue. Inoperable so I had 6 weeks of radiotherapy alone. No chemo

This is what I would do

If I was having radiotherapy then no neck dissection. 

If not then it's a difficult decision......There are grades of neck dissection. You need to ask what the likely long term effects are.

Look your consultant in the eye...Ask what they would recommend for their child ?

Hi KitiKat welcome to the group, I can't really give any advice on having a neck dissection, as I didn't have it myself, however I would say like you I was of the mind to throw everything at it to get cured. There are many on here who have a one so I'm sure someone will be along soon to give you some advice, and tell you their experience of it. I wish you well with whatever you decide. Any worries or questions, just ask away.

Regards Ray.

Hi KitiKat

I had an operation to remove the primary from my tongue and a neck dissection. The decision route was different though. 

My cancer first presented as a lump in my neck, but they couldn’t find the primary and initial test results suggested HPV negative. Rather than delay while more tests were run they decided to start treatment with a neck dissection. The primary was found a few days before this operation so that was removed at the same time as well as some teeth. There was extra capsular spread from the infected lymph nodes, so I ended up having chemoradiation on my neck which started about 6 weeks after the neck dissection.  If there’d been no extra capsular spread it’s likely I’d have had just radiotherapy. Others have taken the decision just to have a neck dissection and no radiotherapy.

Neck dissection was on 12.12.22 and I finished chemoradiation on 07.03.23. After the op i had very restricted movement of my left arm, but time and lots of physio mean its more or less fully recovered now. Overall life is pretty much back to normal. I can move my neck well but it’s still stiff because of some fibrosis and lymphoedema - which I’m working on! It’s difficult to know how much of this is a result of the neck dissection and how much from the chemoradiation. 

So no easy answers and it’ll depend on your case - but the neck dissection worked ok for me.

Catherine

Hi. I like Dani would look consultant in the eye and ask. I did this with regard to my 3 rd chemo session I had 35 radiotherapy and 2 chemo I had lymph node involvement. 
He said it was up to me if I had 3 rd chemo so I said ok role reveal I’m your wife what would you recommend her to do?aHis reply was I had coped  well with 2 and lymph nodes had gone, I had no tinnitus so why risk it with another chemo but my choice. I didn’t have the 3 rd chemo. So ask him or her to be honest. There’s varying degrees of neck dissection, How many lymph nodes would he be taking us one question to ask.It’s unfair to be put in this position in my opinion, ask what likely side effects.

Hazel 

Another thing crossed my mind. Ask him to discuss sentinel node resection if your cancer is indeed small enough for you to decide whether you want ( not need) further invasive surgery 

Hi KitKat

My cancer was found through an enlarged lymph node that was removed (after a clear needle biopsy) through a neck dissection.  Pathology found it to be a secondary SCC HPV+.  They could not find the primary despite scans indicating probably locations.  In the end I had a further neck dissection and the remainder of the lymph nodes removed with no trace of cancer.  A year later they found a tiny tumour in my tongue (as you have) and I opted for surgery.  When it came to the surgery the tumour had gone and that surgery abandoned!  An unusual case, but the message is that I have had 2 dissections - one quite significant - and have (for the moment) got away without radiotherapy.   Radiotherapy is in reserve for the if/when the cancer returns.

The dissections did not worry me and the scarring is minimal and hardly noticeable.  I really have no significant side effects that I can't live with and have a very good quality of life.  I found initial recovery quick and good.  2 1/2 weeks after the first one I was in Florida doing the roller coasters, after the second one there are a few more limitations I put on such things, but not many.  Much the same as with radiotherapy recovery does take some time.  I found I got to a good place after around 18 months of gradual improvement.  Patience is the key!

There is no guarantee that you will have the same outcomes or have clear margins and be able to avoid radiotherapy.  Only you can make the choice with advice from your clinical team.  I am glad I made the choices I did and they were fully supported by the team.

Hi KitKat

It is interesting that you have been given a choice about whether you want a neck dissection. I was not given a choice and at different times have had neck dissections to both sides of my neck as well as ops and radiotherapy. My second neck dissection was done as a stand alone op  as a precaution as I did not have any affected lymph nodes. I was only in hospital for 2 days and had a very quick recovery.I don't know how many lymph nodes I had taken out either time and did not think to ask. I was told it was to reduce the risk of the cancer spreading and it seemed to do the trick. 

I had a reduction in arm movement for a short time on the side where I had the neck dissections but this improved quite quickly and I now have good movement in my arms. There is still numbness and altered sensation where I had the neck dissections and this wont change. However this does not worry me and has not affected my quality of life at all.

It would seem that your neck dissection would be precautionary to prevent a spread of cancer or you wouldn't be given an option. I would say that any precaution is worth it even though there may be some side effects.

Lyn

But surely lymph nodes stop the spread of cancer 

Strange 

Hi Dani

I had the second neck dissection after my surgeon had completed over a couple of months 2 biopsies on the roof of my mouth and had removed small cancers that were there. He discussed with me having a maxillectomy at that stage or do a 'wait and see'. I opted for 'wait and see' as I knew that once I had the maxillectomy that would be a game changer in relation to the way I ate. He then decided to do a neck dissection on that side to reduce the risk of spread of the cancer through my lymph system to my lungs if it returned. Unfortunately it did return and so I then had the maxillectomy.

I don't understand anything about the physiology involved but put my trust in him that he knew best as he has been with me since my first cancer diagnosis in 2013.I'm still with him and he has been wonderful in every way.

Lyn

For what it’s worth, here is my experience of a neck dissection.
Although I was offered a choice of treatments, once I’d opted for surgery there was no discussion about the neck dissection. That said I’d decided to put full trust in my surgeon, a decision that so far has proved to be very well placed. I had 39 nodes removed. 
It’ll be 3 years in a couple of weeks since the surgery, which was followed by chemoradiation. Recovery from the ND for me was gradual and involved a lot of neck care by way of exercises, massage, moisturising and protection from the sun. 
I still do neck exercises now and again as it does stiffen up slightly at times. (I met up with one of the people in here recently who had the same treatment and she described it as having a stiff rod in her neck.) However, as time has gone by my neck care regime has become much more casual and takes up very little time. I still moisturise before I go to bed (a great way of daily checking for lumps) and I now always wear a hat and moisturising suncream on sunny days.

There is no doubt that for me there are still side effects, but they are very minor. My neck is sometimes sore and sometimes itchy (due to the RT) and always a bit stiff. The scar is pretty much invisible and any lymphodema I had afterwards has now disappeared. I have regained full movement in my shoulder and I suffer nothing that limits normal life. I run, cycle, swim and enjoy playing the piano just as I used to with no problem.
Hope this helps. M