28 treatments over 5.5 Weeks

[Fender3131]

I have an AN that is 2.8cm and has cysts inside the AN. I had the MRI done just this February and I am now deciding the right approach for me. I know it really comes down to what I am most comfortable in doing...Microsurgery vs. Radiation Treatments, but I wanted to get some opinions from all of you.

I have seen a Neurosurgeon and a Radiologist. The neuro suggested microsurgery and the Radiologist suggested SRS of 28 treatments over 5.5 weeks.

What do you all think?
Have any of you dealt with a cyst filled AN?
Is there any difference in Radiation Treatment for a cyst filled AN?
Is the re-growth rate different for a cyst filled AN?

Any thoughts you may have would be great!

[jaymatt]

Hi Fender,

I am in the midst of a 5.5-week, 28-treatment fractionated radiation plan at OU Stephenson Cancer Center. My AN is 1.5cm right side, but I am young (32) and still have excellent hearing. After consulting with my tumor board (neurotologist, neurosurgeon and radiation oncologist) I decided this was the best decision for me because any other option, including Gammaknife, would have almost certainly caused significant to total hearing loss in my right ear.

I am writing to say that lots of people on this message board will try to tell you what's best for you, but only you know what's best for you. My radiation is a piece of cake, aside from the minor inconvenience of a 3-hour round-trip drive every day for six weeks. At first I was leaning toward retrosigmoid surgery, but all options offer pros and cons; it's a matter of deciding what is most important and what you can handle at this time. It's also a matter of which doctor you think is looking out for your best interests. I was lucky enough to have three doctors very experienced in ANs agree on one treatment plan.

Good luck in your decision-making – it certainly is not an easy one.

[Jim Scott]

Hi, Jaymatt ~

I also underwent FSR treatments (26 over 5 weeks) but mine followed Retrosigmoid surgery to 'debulk' a large (4.5 cm) AN.  The surgery was successful, my symptoms disappeared immediately and I suffered no real complications.  I was driving (with my doctors permission) within a fortnight.  My radiation treatment, like yours, was also uneventful.  Subsequent MRI scans indicated tumor necrosis and the beginnings of shrinkage of the remaining tumor.  My symptoms never returned.  Unfortunately, my hearing in the affected ear was lost due my procrastination about addressing the gradual unilateral hearing loss.  You're fortunate to have avoided such a loss.

I do have to correct your statement: "lots of people on this message board will try to tell you what's best for you" because it is inaccurate.  We are meticulous about never telling any AN patient what is best for them.  The phrase "the decision is yours" is seen often in various forms on these boards.  This is a peer-to-peer forum and we are very clear about the fact that none of our posters are physicians and that no one can make another AN patient's treatment decisions for them.  Doctors will recommend treatments but not presume to actually decide the treatment decision when options are available.  We offer our experience and what worked - or didn't for us as individuals.  We collectively may suggest looking into various options and occasionally offer our personal opinions but we never tell another AN patient what is 'best for them'. 

Your concluding remarks in your post were absolutely correct.  I assume that as a new member to these forums, you were not familiar with our policy of never attempting to tell another AN patient what treatment option is 'best for them'.  A perusal of some of the posts will confirm my assertion.   

I wish you the same kind of success I experienced with my fractionated radiation treatment and hope you'll continue to contribute to the forums.

Jim