DO REMNANTS REGROW, AND WHAT NEXT?

[v357139]

Like to hear from those who have had subtotal removal, which I mean as 90% removal.  Did the remants regrow, did you use GK (or something to control), and how effective was that?

How often do remnants regrow?  How effective is GK at controlling remnant regrowth? 

[LakeErie]

I had a subtotal removal, 95% - 97% according to the operative report. A sliver was left along the brain stem as the surgeon could not find a clear plane between the tumor and brain stem to dissect along. Also tumor was left on the facial nerve for the same reason.
My surgeon told me the chances are good I will need further treatment for regrowth, his preference is for GK. Using GK as secondary treatment for regrowth of residual tumor after subtotal surgical resection has a tumor control rate at the Cleveland Clinic of 98%. UPMC has a similar control rate. Complication rates are minimal ( 1% for transient facial palsy for example.)
Not all residual tumors regrow. I found four studies that followed subtotal resections. Med schools at Harvard, Loyola of Chicago, California at San Francisco, and Florida Universities all have done studies. The first three found mean time to regrowth was 4+ years. The studies found 50 - 60% of cases had regrowth. The Florida study was for age 65 and over at time of surgery and found in older people that regrowth occured in only 33%.
While stating my chances for regrowth were higher than not having it, my surgeon said no one can predict which residual tumors will regrow and if they do, when it will occur. Dr Chang at Stanford is running clinical trials on using sub total removals of large AN's, >3.0 cm's, then following the patients for regrowth and then using radiation. It is a multi-center treatment trial involving Stanford, Univ of Cincinnati, Baylor, Cornell medical centers to determine if sub total removal to preserve nerve function and then treat if necessary with radiation has better results in  outcomes in treating large tumors.
My surgery was Oct 6, 2011 and my one year MRI last Oct showed " stable residual tumor size."
One year down.
I found all the information I summarized above simply googling the subject of residual AN tumor regrowth. And the stats are from my memory, not from the studies themselves, so reliability is in a general sense I have.

[v357139]

I found this one from Johns Hopkins:
"significant portions of the tumor left behind present a significant risk of regrowth). In some cases, however, radiation treatment of the tumor may be an option. With radiation treatment, however, tumor control can only be insured with repeated scans, each year, for life. Few studies to date have documented the effects of radiation beyond 5 years."

Does this mean the long term effectiveness of GK or other types of radiation treatment are not really known?

[Jim Scott]

The short answer to your question is 'sometimes'. For what its worth, here's my story:

I was diagnosed with a 4.5 cm AN in 2006.  It was pressing 'hard' on my brain stem although my only symptoms were dizziness, fatigue and loss of taste.  My hearing in the affected ear had been lost some time previously (the price of procrastination on my part).  My neurosurgeon, reacting to my clearly stated desire to avoid facial nerve complications, offered a plan (I accepted) to perform a partial resection (Retrosigmoid approach) of the tumor, in effect to 'thin it out' and then radiate it via FSR to spare adjacent nerves and brain tissue.  He didn't believe it was a good idea to wait until possible re-growth to begin radiation.  He wanted to dispense with it as soon as possible.  During the surgery, the doctor severed the tumor's blood supply, further weakening it. I liked that. 

Long story short:the surgery was successful.  My symptoms immediately disappeared (bi-ilateral hearing never returned).  I recovered quickly and underwent a five week regimen of FSR 'treatments', totaling 27 Gy.  No complications whatsoever with the FSR.  Subsequent MRI scans at six months, a year and two years post-surgery/radiation indicated tumor necrosis and the beginnings of shrinkage.  At the seven year mark, I'm doing great (no AN symptoms).

I'll likely have a follow-up MRI this year but have no symptoms so I'm not concerned with re-growth at this point, although I'm aware it is possible, if not probable.  However, I have to add the usual caveat that we're individuals, many factors are in play and one person's AN surgery/radiation outcome is not a template for anyone else.  It's just my experience and I wanted to share it as a form of, what I hope, is encouragement as you face a decision on your AN treatment.

Jim

[v357139]

In a realm filled with alot of unknowns, its a very encouraging story.  Thanks Jim.