My name is Les Harrison I was diagnosed with floor of mouth cancer about 3 month's ago. I have been under surgery at princess Alexandria hospital Ipswich Brisbane. Although I reside at Mourilyan 100 ks south of Cairns. The operation involved removal of 2/3 tongue and floor of mouth and scrapping 1/3 jaw bone. I have been home now a couple of days and am looking at 6 weeks radiation. My concern is the after effects of radiation. I am having difficulty eating at this time and can only swallow things like scrambled egg and mashed potato., my jaw and back of throat are still half numb and now I read radiation can make it worse even to the extent that you may not be able to eat at all and have to have a ring installed to inject fluid food. They seem to be in a hurry with this radiation and want me to get started next week, I don't know why it would hurt to leave it until things heal up a bit more. After the operation they said we believe we got all the cancer out , then a couple days later they said we have look at some results and suggested 6 weeks radiation. They now tell me they can't see any cancer it would be to small and the radiation is a sort of guarantee for it not to return. What worries me is if radiation makes things any worse I may end up with permanent swallowing problems worse that I now have. I would appreciate any contribution to this conversation.
I had a much less drastic surgery than you (partial glossectomy, just a notch that causes a diversion of the tip of my tongue). The margins were clean with my second surgery and prior to both surgeries they thought I wouldn't need radiation, but due to depth they now say I do -six weeks, same as you.
I did a lot of research and found scary things, but here's 2 things to keep in mind:
1. Many people get longer doses and more doses = worse effects.
2. With newer technology radiation can be more targeted to try to spare tissue where spread is unlikely.
I go for my first treatment on Wednesday, so I can't help with what it will be like, plus our areas and cases are quite different. My doctor and the person she put me in contact with said your mouth does get sore, you lose your sense of taste, and eating is difficult, so I'd definitely talk to your doctor or people in more similar positions about what to expect there.
I'm trying to focus on the fact that 6 weeks isn't long. I will have an inexpensive trip planned about a month after to celebrate and at 6 months, a year, I'll be back to normal even if it is a new normal.
Good luck, we're definitely on as journey we didn't ask for!