Are you aware of any published studies summarizing prevalence of side effects?

[Scottap]

Hi team ,

I have a 13mm AN with essentially no symptoms except tinnitus, and the AN appears to be growing.  Since it is currently on the smaller side and since I am healthy with no significant symptoms, I want to be proactive in getting this addressed before it starts creating problems.  Doctors have recommended retrosigmoid, though I also want to consider CyberKnife.  However, as we all know, treatment itself can sometimes create its own set of problems post-treatment.  I have read a large number of people's stories on this forum, and they are all informative and appreciated.  Nonetheless, they are all over the anecdotal map from "ran a 5K race 2 weeks are surgery" to "feel like hit by a bat in the back of the head years later".

Are you aware of any published larger scale studies that show the prevalence / percentage of patients who got specific side effects after specific types of treatments?  It would be great to see aggregated/summarized data with a matrix that shows this information on a larger scale.

Thank you for any help and pointers.

Scott

[Scottap]

Angela from ANA provided me with some terrific resources:

ANA Patient Survey Reports:
https://www.anausa.org/resources/research/ana-surveys

Current results from the Patient Registry (good for everyone to participate in, if you have not done so already!):
https://www.anausa.org/resources/research/patient-registry

Both involve self-reporting, are not randomized, not peer reviewed, etc.  Nonetheless, they provide some very helpful information in aggregate, and I have not seen anything else yet in reviewed publications that provides this type of information.  Mayo Clinic is apparently performing something similar as well (https://www.anausa.org/index.php?option=com_content&view=article&id=161:mayo-clinic-prospective-quality-of-life-study&catid=2), though it appears to be in process and not available yet.

If you know of any other good sources, please share them as well.

[chrisabbott]

Hi - each of us has our own experience, and like you say those are all over the place.  I would keep in mind as you do your research, how recent each experience is, as it seems that both surgery and radiation options have come a long way in the last few years.

My own experience was that the surgery is no walk in the park, but after a few months, I have less symptoms than I had prior to surgery.  Also, there was no pain that I couldn't manage with the prescriptions they gave me to manage with.  (I think 3 or 4 times total I was watching the clock for half an hour or so before taking something).  I needed longer off work than they originally told me - 14 weeks vs 7, but I couldn't return while experiencing fatigue as I travel out of state and must be on the ball the entire time I'm working.  I've been back a couple months and fine.

I couldn't advocate one treatment over another, but I wish I'd know about my tumor earlier (it was 3.1 cm at diagnosis) as I think nixing these things early should make treatment easier and more likely to succeed.  You've found the biggest body of information on these tumors on this website - lots of bedtime reading that should help you form your own opinion as to which way you should go, so poke around, watch the webinars, and make a list of questions for your physicians.

Good luck!