Radiotherapy after a neck dissection

Very impressive diary. So informative. Great positivity for others.

Totally agree, I never imagined seven years ago that my life would be so "normal" 7 years on.

That's so good to hear . I love to hear this. It's good to hear all the things people did to help recovery knowing you are on the right road. X

Hi Screech Owl,

I'm new here and just seen your post. I am of a similar mindset to you regarding quality v quantity. So I hope you don't mind if I ask you some questions?

Bit of history....I had breast cancer 14yrs ago, surgery but refused chemo and radiotherapy and I'm still here which I'm very grateful for. In that extra 14yrs I've done and seen a lot. 

Now I find myself with tonsil cancer with spread to left nodes. I've just had tonsillectomy and neck dissection, day 11 post op. Sadly the results are not showing clear margins so there is a possibility of a particle having escaped. MRI showed no tissue involvement. I'm being pushed to have radiotherapy but am so reluctant to do it as a just in case. I see you refused it the first time. Would you have refused if there was a possibility of spread? Do you regret not having it the first time or do you feel you've made the most of your extra 2years? 

Thanks

T

Hi T

Have a look at my profile rather than me rehashing it on here.  I was similar although they initially could not find the tumour - only the secondary.  I had 4 good years after surgery and no CRT.  It reappeared last October and with a target tumour I went for CRT.  I am 6 months post treatment and doing really well.  On a personal level if there was evidence that CRT would have been useful to me in the first instance I would have taken it.  In your case I would have taken it and that was the agreed route with my surgeon before surgery. 

It is a personal choice and I always put quality before quantity in my priority list.

Hi Peter,

Thanks for the info. The trouble is that I have no target so it really would be just a broad hit and who knows if there even is a spread. As I said the MRI and CT scan showed no tissue or fat involvement at all. I know we only get one chance at radiotherapy so I'm considering whether to take my chances, have regular follow up scans and if a tumour appears then we have a target 

T

Exactly me on cycles 1 and 2.  I kept it in reserve for when it came back (there was a 70% ish chance of this).

Hi T, it's a very very difficult decision to make. I had to make the same decision in march of this year. After my head and neck dissection for stage 1 N0  tongue cancer. My surgeon said he always does neck dissection whether it's in nodes or not . I was given three choices one to leave it and monitor two go back in and take another few mm from back of tongue as they got it all but would have liked few more mm in margin although very happy with what they got but as aggressive type would take few more mm. Third choice RT. I was torn what to do. I discussed it with my children and husband and they suggested as I was a worrier in general I would wake up every am and  worry it would come back. I asked the oncologist if it was his wife what would he do. He immediately said take RT. That's when I made my final decision. I'm going into ten weeks post RT now and I think I'm doing really well considering it's early days. I actually had a fillet steak etc for dinner last night lol . I won't lie I'm finding it hard at times to cope with the neck stiffness, the swelling and the water blisters but in the long run I am glad I took it. I know my symptoms will improve over time but I'm back at all my yoga, pilates and exercise classes and walking 8 km every day . All this keeps my mind active and feel I'm back to normal. I'm also attending counselling to help me get my head around taking this cancer as I never knew anyone who ever had it. I know all this will take time but if I hadn't have had the RT I know I would sit worrying about it's return. Everyone looks at their choices in different ways and it's not easy by no means going through the RT but my choice gives me more peace of mind for now. As I'm writing this I'm doing my exercises for my head , neck and mouth. When I'm having a bad painful day I think why did I take the RT then I hear the oncologists voice telling me it's belt and braces and I know I made the right choice. It's a very hard decision but I felt I had no choice for me personally but to take it. Plus reading the amazing stories on this site people have made great recovery and led full lives again. So that alone gives me hope and makes me realise I made the right choice for me. Good luck with your decision and take care xxoo

So would I be better off having it done now or you think wait for a recurrence as you did? I wouldn't like to have radiotherapy without a target, which may mean less effective. Then a recurrence would leave me with no option of fighting it

Thanks for the information, every little helps towards a decision. Great to hear you're back on steak so soon. Well done x