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CONFUSED.....

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marshfield71:
Hey all,


 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?

Gtmochi:
Hi! Depending on with whom you speak, you’ll get different answers. So here’s my attempt:

Because CK or any radiation is fairly new, there are only 30 years (I think) on the record of its use and effect on the brain. So, some people feel that depending on the age of the patient, that’s a risk, as there is not data on what will happen when you are 58. Meaning what if something malignant happens with the surrounding tissue, or what if the tumor starts up again.

Because of the size of my AN, Dr. Chang quoted my success rate at 93%. I like those odds. I am not overly concerned about what happens in 30 years (I am 43). All sorts of medical advances will have happened, and who knows what else fate has in store for any of us?

Additionally, some patients hate the idea of an AN hanging out in their head - they want it gone. It is scary for many to have radiated tissue just sitting there for all eternity.

I too met with many doctors, and the breadth of conflicting recommendations as well as information was fascinating. My independent (and biased!) conclusion was that doctors are most comfortable with where their training and  experience lies.

So. In a nutshell, everyone has their own bias and perspective. Research, understand the pros and cons, and go with your instinct. My only recommendation is to talk with an equal amount of CK or GK focused doctors as surgeons.

Best,

Jessica

ANSydney:
I like the idea of doing a follow up MRI after 6 months. I was told, if it's not growing, there's no need to do anything.

Greece Lover:
It sounds to me like you've done the right thing: accumulated as many reliable medical opinions and options as possible.  One of the frustrating things about an AN is that you have choices.  But, you also have time, which can be a blessing. 

the only thing I might suggest is to make sure you get some statistics on hearing preservation with middle fossa.  They're usually much better than with retro-sig.  (but, I'm biased because I had Mid-fossa and am incredibly glad that I did.)

Also, my understanding is that hearing can deteriorate even if the tumor doesn't grow. 

This forum can be helpful, but you'll also find people trying to justify and push for their own choices.  Most of the info you'll get here is anecdotal, which can be helpful, but its good to also think of the statistics.   

Good luck!

WhiskyJoe:
I've spoken with several neurosurgeons/neurotologists and radiosurgeons over the past two years, and they've all tended to recommend what they've been trained to do.  My symptoms are getting worse, and my hearing in the AN ear has declined markedly over the past six months.  The radiologist's report from an MRI I had six weeks ago says the scan shows "subtle but definite increased focal protuberant enhancing tissue" and "subtle but definite increased enhancing tissue with complete CSF effacement of the IAC fundus."  The radiologist who reviewed that scan is the same guy who's reviewed all of my other MRI scans.  Since the tumor is growing and my symptoms, particularly the decline in my hearing, are getting worse, I've decided to proceed with surgery.  My surgeons intend to use the middle fossa approach because it has a greater chance of preserving the hearing I have left.  Watching and scanning is a prudent approach, but based on where I am now, I wish I'd pulled the trigger on the surgery a year ago.

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