This post is sort of a part 2 of my trying to make a treatment decision. I've had 4 consultations so far: House Clinic, Dr. Chang at Stanford, Dr. Thompson at U. of Michigan, and UPMC. I've heard different arguments for and against having radiation treatment.
Has anyone out there ever had a large AN radiated and/or had radiation at a younger age? How did you decide and what was your experience like?
Some background: I'm 31 years old and have a 3cm AN on the left side. I still have near perfect hearing, and perfect speech discrimination, on the AN side. I have very subtle balance problems every so often and a little bit of facial numbness. Below is a brief summary of the four opinions:
Dr. Slattery at House: You should have translab surgery. If the tumor was 2cm or less I'd be more likely to recommend radiation, but because its 3cm there is only a small likelihood the radiation will work. In addition, you are too young. We don't know what the effects of radiation are 30 years post treatment (if it could become malignant).
Dr. Chang at Stanford: Not only could you have radiosurgery, you should have radiosurgery. Radiosurgery will give you a 50% chance of keeping your hearing 10 years out, and there is only a 1-2% chance radiosurgery could cause facial paralysis. There is a 95-96% chance the radiosurgery will control your tumor. Even if it didn't control your tumor, post-radiation surgery is not necessarily riskier, sometimes it is and sometimes it isn't. The chance of malignancy is 1 in 10,000. It is so rare there aren't enough cases in history to have a study on it. You are more likely to die due to the operation, a car accident, or anything else. People who say there is a risk of malignancy are either fear-mongering or uninformed.
Dr. Thompson at U of Michigan: You should have surgery. Specifically, we should do a retrosigmoid approach to see if we can get the whole tumor out, and if needed do a second stage translab approach to access the tumor from a different angle. The goal of surgery is facial preservation, and the two stage approach gives you the best odds. Radiation is certainly a choice you can make but I can't recommend it. Radiation would have a 90% chance of working. With radiation you'd have a 50% chance of keeping your hearing, a 2-4% chance of temporary weakness, and a 1-2% chance of permanent facial paralysis. With surgery, the risk of temporary weakness is 33% and permanent paralysis 5-10%. I disagree that the chance of malignancy is 1 in 10,000. In my practice I've already had a patient with AVM who had malignancy transfer 8 years after radiation. I agree that it's rare but would say its as high as 1-2% lifetime. If the tumor became malignant, it could be treated and there is a high likelihood you would survive.
Dr. Altschuler at Pitt: You should have surgery. Specifically, we should do a retrosigmoid approach, and if the tumor doesn't come off the facial nerve easily, we should leave a little bit and watch to see if it grows or radiate the little leftover piece if needed. Retrosigmoid would at least give you a minimal chance of saving the hearing even though its pretty unlikely. Your tumor is larger and has several cysts in it. We know that larger tumors don't respond as well to radiation, and cystic tumors don't respond as well, so that's two strikes against you. Thus the chance that radiation would work is less than the 95% others may tell you, but I really don't know what the likelihood is (I tried to pin him down but he refused to guess what the odds were of success in my case). Furthermore, if the radiation failed the subsequent surgery would be much riskier because the facial nerve would be more sensitive due to the radiation. The chance it would become malignant is so incredibly rare its almost impossible. The reason to not have radiation is because its less likely to work; malignancy should have nothing to do with it. In summary, having radiation isn't a terrible idea for you, and it could work, but its not my recommendation.
So, 4 different very well known, highly respected surgeons, and 4 different opinions. Only Dr. Chang recommends radiation, but the other three don't even agree on their rationale for rejecting radiation. Furthermore, the three who recommend surgery all recommend slightly different procedures. I am really getting frustrated! I can't decide what I'm most comfortable with because each physician's sense of the risks and benefits are totally different! I very much want to believe Dr. Chang but don't want to decide based on wishful thinking. Has anyone else ever been down this road? Is there anyone who had a larger AN and considered radiation and either did or did not do it? And if so what was your outcome? Thanks so much!