I see you’re from Toronto, so am I. My husband was treated at Princess Margaret Hospital.

I think it’s a positive step to have an appointment to talk to your doctor about the new spot. It’s true that radiation has side effects, however, it depends on the dosage you are getting. So, if radiation is ever suggested, do ask the doctors about how many grays (unit of radiation) you will be getting and what the possible side effects are. They should be able to tell you. If you are worried about the radiation getting too close to your eyes, I can tell you that the radiation is very precise. In fact, they do a simulation session prior to radiation starting to check that it hits the spots it is supposed to and no more. So, they won’t hit your eyes by mistake.

Another point I would like to bring up is maybe you can ask your doctor next week when you see them if you can transfer to Princess Margaret Hospital — that is, if you can travel to PMH easily or treatment and the transfer is something you want. The reason i’m suggesting this is that PMH seems to have a larger Head and Neck Cancer Department with top notch surgeons and doctors/researchers. I am, however, by no means saying that Sunnybrook is less good, it has a very good reputation as well. We chose to go to PMH when my husband was diagnosed because he was diagnosed by doctors at Mount Sinai Hospital and he was automatically in line for treatment there. Of course, I don’t even know if our medical system allows you to transfer to PMH even if you prefer going there.

The other possibility is to find out from your doctors at Sunnybrook if they will let you do a consultation with the doctors at PMH, or if they themselves will consult with the doctors at PMH. Who knows, maybe there is someone at PMH who has seen this cancer before and knows what to do with it.

All this you can find out by talking to your doctors at Sunnybrook. I am all for patients being proactive and advocate on their own behalf and your case, it seems to me, is one of those where you can benefit by talking to the doctors at length. Good luck and do keep us posted about your treatment so that we can all learn more about this rare cancer.