SRS after 2x surgery; fast-growing tumour

[xiphias]

Hi! Does anyone else have experience with a slow-growing AN that turned fast-growing after surgery? This is my situation:

October 2013 – Went to the doctor with an “ear infection.”

November 2013 – Diagnosed with very large (~5cm) AN on left side. Neurosurgeon figured that since I had only noticed symptoms a few months before (and had never had great hearing on my left), I had probably had a very slow-growing tumour for all or most of my life. At this point, I was 37. The tumour was too large for radiosurgery and was pressing on my brain stem so immediate action was necessary. I freaked out on your boards and you were all very nice.

December 2013 – Suboccipital surgery to remove 90% of tumour, preserving facial nerve. Assumption was that tumour might regrow slowly over 10-20 years, and if so, debulking could then be repeated or other treatments could be discussed. Almost no side effects post-surgery. Tumour biopsy came back grade 1/benign. Everything was chill and I went back to my life.

January 2015 – Surprise! Routine follow-up MRI showed that tumour had regrown ~2cm in a single year and was again pressing on brain stem. Immediate action again necessary.

February 2015 – Suboccipital surgery repeated, bulk of tumour (90-95%) again removed and fully cleared from brain stem. Surgeon was more aggressive (with my permission) so some facial nerve damage. SSD. Tinnitus. Biopsy still came back grade 1/benign.

May 2015 – Follow-up MRI shows that tumour again shows signs of growth. This sucker will not go away. A third surgery would likely result in serious side effects. Tumour is currently small enough for SRS, so I’m now scheduled for radiosurgery (LINAC) at the end of July, before the thing grows too big again.

I don’t even know what to do or ask here. It’s not like I have a ton of options – seems like this thing is a constant emergency and everything needs to be done right-now-immediately. I’ve done a lot of journal research over the past year and a half so I know a fair bit about ANs, treatments, radiosurgery effectiveness stats, etc. But I can’t find any data on post-op tumours that go crazytown in their growth rates but still test benign. I’m worried that since my little friend has already turned weirdly aggressive, it may have a greater chance of future malignancy post-SRS, particularly since I’m only 38.  I’m also worried that SRS may degrade my current and still ongoing improvements in facial function, tinnitus, and dry eye – they’re not 100% yet, but they’re workable. 

Has anyone been in a similar situation? I will of course lob these questions to my radio-oncologist as well, but I’d love to know your experiences.

[xiphias]

Possibly this post would've been more useful if I'd asked more specific questions. Here's one:

Has anyone here had permanent facial nerve damage post SRS? My facial nerve is already slightly damaged from prior surgical resection, and the radio-oncologist figures there's a 5-15% chance that the upcoming LINAC treatment (single dose surgery) could make it worse. If it does, when would I know? Would it show up in the first few days, or could it be months away? Might it improve?

I know there can be issues when/if the tumour swells; here I'm wondering about straight-up radiation damage. 

[Sheryl]

So sorry to hear about your ongoing problems.  I cannot testify personally and although a different type of tumor, my husband went through almost the same situation.  He incidentally found a meningioma in 2003 - 6 months later it had doubled in size.  Immediate surgery was done with a pathology of "benign meningioma" - no grade or anything else.  When it regrew in 2007, we sent the slides for a second opinion and the pathology came back as "grade 2, atypical" which would mean a higher possibility of regrowth.  In retrospect if we had known that, radiation should have been done after the first surgery.   He opted for Cyberknife at the time of regrowth.  Once again in 2009, it reared its ugly head and regrew in his head!!  Another surgery, this time more "aggressive" and he spent two months at inpatient rehab.  He came away with "challenges" but we adapted.  Unfortunately, it showed up again in 2012.  This time he refused another surgery as it would cause more permanent and increased problems.  Opted for 30 sessions of IMRT radiation.  Now, in 2015, there's another questionable area in a completely different spot.  They are not sure what it is and he is being watched with MRIs every three to four months and we are to keep tabs on his symptoms carefully.  One possibility, we were told, was "radiation scatter" or a possible stroke so small that it would not cause any problems or symptoms.  They do not feel it is a new tumor or metastasis from another area. 

Your young age makes radiation questionable - Larry started all this running around when he was 61.  Please keep us posted and I hope you will hear from other AN posters.
Sheryl