I'm back....I had my surgery on 5th Dec, margin removed around the tonsil and neck dissection, I'm still recovering eating ok very slowly though but my mouth on the right side still very sore when I eat there's nothing to see it's under the tongue and the gum top right side, that's the side where the surgery was done. I stopped pain killers about 2 weeks ago.
The surgeon told me the cancer been taken out, the margin around the tonsil was clear and only one lump was cancerous encapsulated and it measured 36 mm. The treatment plan after the surgery is 60 weeks of radio therapy, the surgeon said that if it was 29 mm I would not need any RT and keep me watched but because it's 33 mm I should have the RT also said these are facts based on very 'arbitrary knowledge it's not gospel' protocol says there have to be a cut off..the surgeon did say it would be risky but not reckless if someone decides not to go ahead with the RT also said the cancer is gone and the RT will be getting rid of any particles that might be still there.
I'm on the Pathos trial (though it has closed now) and I know there would be rules for the trial, I never felt I had a proper chance to speak to the oncologist properly before the surgery to explain in more detail what the treatment etc would be if not having the surgery.
Anyway relieved the surgery is out of the way now and cancer is out but I'm not sure about the RT and I'm thinking of maybe getting a second opinion .Does anyone know how to go about this as I need to do it quick before my starting date of the RT 23rd Jan, might have to be private? If its best to have it I will go ahead with it, I know its very invasive but I want to make sure it's the right decision. I only know it's 30 sessions but don't know for how long each day, was told between 5 to 10 minutes and also the strength of the dosage/beam.
Serenata xx
Hi Serenata. Well done on getting through the surgery.
Second opinions are easy. You just phone up your chosen consultants secretary and arrange an appointment it’s done all the time. They might not even need to see you in person.
For me I would go for the radiotherapy. It would tidy up any lymph nodes for a start. After all they can’t remove every node in your neck.
But it depends how risk averse you are. If you are happy sitting with that risk then you can keep RT back for any recurrence.
As for time on the treatment table I was usually clipped down for about ten minutes though the treatment lasted only about five. The total dose is usually around 70Gy so you’re getting two and a bit daily with a break at weekends.
I hope you can get a decision fairly quickly and good luck.
Let us know how you get on.
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
Can second opinion be from another hospital
Absolutely.
Look at a major cancer centre maybe.
The Royal Marsden or The Christie spring to mind but there are lots of other regional centres.
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
happy to go for checks every 2 to 3 months.
Is that for life, Peter, or for five years?
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
Dani
I was told back last summer that it would be for life. I suspect that it is because they seem to think of me as a medical curiosity 
and good training material, but I am not complaining at them keeping a close eye on me. Anyway I occasionally negotiate longer between checks if I need to, but if I have any concerns they bring me straight in.
Thanks Peter. Keep them on their toes 
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
