ANA Discussion Forum

Pre-Treatment Options => Pre-Treatment Options => Topic started by: keepingthefaith on July 25, 2009, 10:38:34 am

Title: Decision Finally Made is FSR, Question Now is Where?
Post by: keepingthefaith on July 25, 2009, 10:38:34 am

After three years of W&W, I've finally made a decision....Procedure: FSR......Treatment location:  this is where I need input.
 
As an update, my wife and I recently drove 1,200 miles to Philadelphia to meet with Dr. David Andrews at Jefferson University Hospital.  We had previously attended the ANA Symposium in Philly in 2007 which was a GREAT learning experience.  At that time we met briefly with Dr. Andrews.   We both really felt comfortable and confident with him.
 
Since the Symposium, I have had discussion with the University of Miami and the Mayo Clinic in Jacksonville.  Both Drs. said mine was a difficult choice because of the size of tumor (1cm).  That said, I have now experienced significant hearing loss and am down to 30% remaining and have a continual worsening "fullness" in my head, gagging, and general lethargy.
 
Back to Dr. Andrews.  He stated "it is not the size of the tumor and how fast it grows. It is the effect it has on you and the symptoms you are experiencing that should determine your type of treatment and when."   
 
For me, he recommended 5 weeks of 5 days/week of FSR.  Unfortunately this came as a shock as I was expecting 5 days of radiation for one week only.  While my MEDICARE insurance will cover the treatments, 5 plus weeks living in downtown Philly is both very expensive and not what I expected while undergoing this type of traumatic experience.
 
Question:  Has anyone had the 5 day/week, 5 week FSRT somewhere other than Philly?  If so, where and how did it go?

Title: Re: Decision Finally Made is FSR, Question Now is Where?
Post by: Jim Scott on July 25, 2009, 01:23:12 pm

Keepingthefaith ~

I underwent a 5-week, 5-day-a-week FSR treatment in the autumn of 2006, following a partial resection of a 4.5 cm acoustic neuroma.  This was a carefully planned course of, first, the surgery, intended to debulk the tumor, making it amenable to radiation and also to avoid facial nerve damage.  I'm pleased to report that the plan worked perfectly.  No facial nerve damage following the surgery and almost no other complications - followed by a fairly rapid recovery.  Then, after a 90 day 'rest period', a 5-day-per-week 45 minute session with the LINAC. My FSR was performed at the Hospital of Saint Raphael Father McGivney Cancer Center in New Haven, CT.   http://www.srhs.org/body.cfm?id=605 (http://www.srhs.org/body.cfm?id=605)  The sessions were uneventful and I suffered no ill effects.  I live about 30 miles from the facility and was able to drive to and from every session.  I can only relate my own experience, which was quite positive.  The LINAC system at Saint Raphael uses 3-d technology for more accurate targeting of the tumor.  My neurosurgeon and a sharp young radiation oncologist programmed the FSR.  It was highly successful.  I hope you'll have a similar experience, wherever you decide to go for your FSR.  

Jim

Title: Re: Decision Finally Made is FSR, Question Now is Where?
Post by: Tumbleweed on July 25, 2009, 07:48:58 pm

Have you considered CyberKnife (CK)? It is a type of FSR (fractionated stereotactic radiotherapy) often delivered in 3 doses but sometimes in 5 doses (or as little as 1 dose). Perhaps your mind is set on a different type of radiation or equipment. But if you are simply sold on fractionated radiatiotherapy and want to keep the number of doses to a minimum for convenience/expense sake, CK may be a good alternative for you. There are a number of facilities in the East that have a lot of experience with CK. Johns Hopkins comes immediately to mind.

Best wishes,
TW