Hi Danielle,
Thanks for your kind words (I'm blushing)
Your mother will need something for pain in the very near future. There are several different options available from topical swish & spit to long term patches like Duragesic. I used three different types of pain meds. "Long term" (opioids) for consistent pain, "short term" (opioids), fast acting for "breakthough" pain and the topical I mentioned earlier. It kept things pretty much in check. Pain management is a basic patient right. Demand it! There is no need to be pain over this. My oncologist coordinated all of my meds (he also gave me whatever I wanted). I researched and had my meds lined up before I actually needed them. Opioids are notorius for causing constipation as well so that will have to be carefully monitored.
I am also 56 and haven't smoked since 1976 (I did drink a bit though up until 1995). I worked in the electronics industry and many substances that I used to work with, like TCE 1,1,1, are banned now. This is a common age for these types of cancers to appear. Whether they are genetic or environmental is anybodys guess.
About the staging, I would ask the doctor if they have revised it. I would also ask whether this was actually a recurrence or if the cancer was already there (like an occult cancer where they can't locate the primary). You want to ask these questions "off line" if your mother is already in fear of the whole business.
Many of us feel that radiation in addition to surgery improves the outcome. Recent studies in breast cancer survival have demonstrated this to be the case. Whether this is transferrable to head & neck cancer is still being determined.
More about the side effects. Some had had severe swallowing issues, some have had none. Some had had severe burns (2nd & 3rd degree), some have had a minor sunburn effect. I was always able to eat (liquids) and drink (albeit with some discomfort at times) where others relied solely on their PEG tubes. Some have had to be hospitalized from secondary infections and some have just skated through it. Some like myself have lost a lot of weight, some have actually gained weight. Certainly many who post here are concerned with severe side effects but that doesn't mean that we all have them.
Much of our fear comes from the unknown. My wife gave me a book "Living Well With Cancer" by Katin Moore and Libby Schmais that that helped to explain a lot of the details of surviving through treatment and recovery.
Unlike Anita's friend and a few others here, I was driven to my appointments with the LINAC. I took almost a year off from work. It took me up until now (11 month post Tx) to get back to 95%. Your mothers experience can vary widely as you can see.
These are things you can do to mitigate the side effects: Keeping your doctors informed, journaling the experience, keeping records of food and water intake, etc. Keeping the bathroom and kitchen thoroughly disinfected, keeping sick people, especially children, away if they are sick (and if you are the driver and sick people have been in your vehicle, insure that you have disinfected the door handles and things that are commonly touched), managing pain and constipation, insuring 2-3 liters a day of fluid intake, working closely with a nutritionist, insuring that there in NOTHING on the neck prior to radiation sessions (some substances can cause a "bolus" effect where the skin effect is dramatically intensified). Put the radiation ointments on AFTER treatment sessions and NEVER scratch the neck area. Extra attention to the oral cavity, i.e. flossing, WaterPik, Biotene toothpaste, dental hygiene, etc. A humidifier is a good invetment also. A healthy dose of prayer doesn't hurt either. These kinds events in our lives have a way of opening spiritual doors. They certainly teach us that we aren't the ones in control.
