My name is Les H. I was diagnosed with floor of mouth cancer about 3 month's ago. I have been thru surgery in Brisbane, although I reside a distance from there in a rural area. 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 recovering for the next step, 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. 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 (feeding tube) installed to inject liquid 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 than I now have. I know of one poor fellow who has this for all time and has a ring (feeding tube) in his stomach, he also will never speak again. I would appreciate any contribution to this conversation.
Thank you,
Les

Les: I can't give you an answer to your specific question. One important thing I've learned is that since oral cancer hits so few people it is important to deal with a hospital that has specialists in oral cancer.
Given where you live you may be limited in your choices but hopefully you have experts caring for you. Tom

Hey Les,
So sorry to hear you're struggling. I would contact your consultant and ask lots of questions. Every patient is different and reacts differently to treatment.
Is there anyone else who you can talk to?

Hi Les,

Many oral cancer patients who go through radiation have difficulty eating and swallowing towards the end of the radiation treatment and during the first part of the recovery period after the radiation. Many do eventually get back their swallowing ability. My husband had to have a feeding tube because his esophagus was closed by scarring. But he had a lot of radiation and his cancer was in the throat.

What you might like to do now is to continue doing the swallowing exercises that the hospital has given you diligently. Swallowing muscles, if not used, can become atrophied. Can you speak to your doctor about the swallowing problems you’re having and ask to be given a swallowing assessment? That’s usually done by a speech and language pathologist.

It seems like there’s not been a clear explanation for why you needed radiation. Again, you really need to ask your doctors directly. Does your family physician get copies of your medical report from the hospital? If it’s too much for you to travel to Brisbane, maybe a chat with your own family doctor can clarify things for you.

Welcome to OCF, Les! Im sorry to read about what you have already been thru! We will try to help with giving you info and support. Just remember... everybodys different!!! Every person you meet who has been thru something similar will react in their own unique way to medications, surgeries, radiation, etc... That said, its very difficult to make a truly equal comparison even with someone who appears the "same" on paper. Theres still far too many variables to use the one person you know who has been thru this and is now on a permanent feeding tube and is unable to speak. This may seem shocking but please consider this person is fortunate to have survived and may be leading a full, happy life even with their permanent complications. Its amazing what some people go thru as routine, where others view it as a negative experience.

OCF was founded and is based out of the US but we have many members from all over the world. Im sorry, I am not familiar with the differences in each countries medical system and treatment specifics. Here in the US, patients frequently seek a second or third opinion, sometimes even more. This isnt the same as when someone is "doctor shopping" to find the specialist who does what the patient thinks is needed instead of what must be done to eliminate the cancer. Second opinions should be done at top treatment facilities where they have all the brightest and most talented specialists along with cutting edge procedures and is not affiliated with the first doctor/facility the patient has been to already. If you are now seeking another opinion, dont be surprised if doctors are more reluctant to come in during the middle of everything so quickly after your surgery.

To do radiation or not to do radiation has been discussed many times here. You arent alone in fearing the long term issues from rads can negatively impact your long term life. Many patients with oral cancer (OC) that have their tumor removed surgically will still need to go thru radiation about 6 weeks after the surgery. This is done to eliminate any possible stray cancer cells. All it takes is for one little "straggler" to be missed to cause a recurrence. Radiation compromises healing and an area with recent surgery removing cancer would be the same area radiation treatments would be focused towards. Prior to doing anything, I suggest asking the doc about if your healing from surgery would be compromised from the rads. Id also ask your current surgeon about if the surgery was successful with obtaining clear margins.

I understand your concerns about life altering after long term after effects radiation MAY cause. Not every patient experiences every side or after effect. Every patient is different but one common factor in those who get thru it easily vs those who have problems is how well they can do with their daily intake. Some will sail right thru rads with barely a sore throat recovering quickly and easily to have a long, happy life without any major long term issues. Patients need to be aware of anything that could cause long term after effects. But... what one person goes thru does NOT mean the next patient will follow the same path. Some patients struggle after surgery with eating difficulties as well as with rads. Most patients Ive seen do NOT have permanent feeding tubes. I know it sounds horrendous but a feeding tube is just another tool to get the patient thru a rough patch. But, yes it could happen but nobody knows if it will or not. All these things arent something anyone can predict or change. Focusing on what is within our control and avoid borrow sorrow from tomorrow. All any of us can do is to eliminate the cancer... every teeny tiny cell and do the best we can to follow our doctors advice. Prepare for the worst but hope for the best.

Best wishes with your continued recovery and everything else coming up!!!