Help with decision - surgery or chemoradiation for tonsil cancer

I have had neck surgery, full (and ghastly) tonsillectomy (everything removed including secondaries) and mucosectomy and despite scans and biopsies not being able to find the primary, I am on the path to radio/chemotherapy. If I decide to have that. I have a little time to decide what to do having been advised that after all this with or without the massive trauma of radio/chemotherapy that if the cancer moves out of the head/neck area, it will be “untreatable” and only palliative care available.   

I think you're right there it feels like whatever decision you make is traumatic. 

He just wants to know how likely it'll be that he'll need radiotherapy after surgery so he can make an informed decision on which path he will take 

Fry7b5361 said:

Does anyone know what the chances of having to have radiation after surgery are ? The surgeon would not answer the question, although it was put to him 3 different ways ! 

It depends entirely on the pathology in the tonsil and lymph nodes, if there is no cancer in the nodes and the primary in the tonsil is small enough to have good margins then you could avoid RT/CRT

The surgeon doesn’t know till the lab results are back 

Hi

Thank you for your response. 

We know that it depends on his pathology. We just wanted an idea on past patients so we had something to go on. 

Fry7b5361 said:

We know that it depends on his pathology. We just wanted an idea on past patients so we had something to go on. 

I know it’s hard just waiting. We want to get on with this and plan. I was the same. I explored all eventualities but soon discovered that we are all different and you can’t put a figure on chances. I couldn’t have surgery so I had no choice. 

How did you find the radiotherapy? He was told if needed after surgery it will be for 6 weeks whereas chemoradiation is for 7 weeks with very little difference in drug dosage. It feels like an impossible decision to make. 

I guess I meant that RT/CT treatment is traumatic/brutal as is having to make these decisions.

We are struggling to deal with it at the moment. We feel like the bottom has fallen out of our world. Can't sleep, eat, feel sick with worry. 

Fry7b5361 said:

How did you find the radiotherapy? He was told if needed after surgery it will be for 6 weeks whereas chemoradiation is for 7 weeks with very little difference in drug dosage. It feels like an impossible decision to make. 

Hi 

RT is a challenge. I was 68 and managed pretty well with adequate pain relief and a nasogastric tube for food and meds. I’ve made a pretty uneventful recovery. CRT can be six or seven weeks. It depends on how far advanced the cancer is. Whether you get chemotherapy is a recommendation by your oncologist. It makes the cancer more sensitive to the radiation. It increases the chance of cure by around 6%

My oncologist told me that the cancer would take a year out of my life but that he would cure me. It did and he did 

Fry7b5361 said:

We are struggling to deal with it at the moment. We feel like the bottom has fallen out of our world. Can't sleep, eat, feel sick with worry. 

Take a breath. This cancer is eminently curable so hold onto that.