Newly 28 years old, diagnosed 2 weeks ago with 1.3 cm AN in right ear. Symptoms at this point are basically only mild tinnitus and small amount of hearing loss at higher frequencies, doesn't really affect me in a functional hearing sense. This forum has been great for information and support in this stressful time, thanks to all.
So I've been sending out my MRI images and scheduling meetings with a lot of doctors, and am a bit confused as to the messages I've heard so far.
Drs Selesnick from Weil-Cornell, Brackmann from House, and Friedman from UCSD all recommended surgery, retro-sigmoid, not radiation, due to my age. The doctor from USC (can't remember her name) believed I was a candidate for middle fossa as well, but said to wait and get another MRI in 6 months. Scheduled to see Golfinos, Sen, Kondziolka from NYU and Sisti from Columbia next week.
However, I met with Dr. Chang from Stanford and his team today and they confirmed what I had already thought. Here are the stats as he laid them out (for my tumor size and current hearing ability :
Cyberknife- 97% tumor control rate, basically 0% chance of facial issues since they do fractionated, quick recovery, no long term side effects etc, chance of hearing preservation in the 80% range if not higher. Change of malignancy 1/10,000.
Surgery- 98% tumor control rate (I guess if they have to leave some on facial nerve and it regrows) Chance of facial issues- 5%. Hearing preservation- at best 50% chance although I've heard as low as 10%. Plus all the associated time in hospital, recuperation afterwards, balance issues.
I understand that we don't have studies ranging so so far for radiotherapy, but as per Chang, if its controlled after the first few years, chances of it growing much later on are small.
The choice to do radiotherapy seems fairly clear to me. I'll take the 3% chance of having a potentially more difficult surgery later on, if it lets me have a better chance at hearing preservation and no chance of facial issues, and no complicated operation.
So my question is: Why are all these other doctors telling me not to? Just because they are surgeons and not oncologists?? Am I missing something?