Hi, Julie:
Welcome to our forum.
I was finally diagnosed eleven months ago (after having symptoms for over 7 years) with a 1.9cm AN. All the doctors (3 neurosurgeons and 3 radiosurgery doctors) who looked at my MRI and gave their consultation agreed I could wait six months for a followup MRI to reveal whether or not the tumor was continuing to grow. As all forms of treatment have potentially life-altering consequences, I wanted to know that treatment was absolutely necessary before proceeding. As it turns out, my tumor was growing about 5 times faster than normal. My followup MRI made this clear and prompted me to seek treatment. Fortunately, I had researched my options thoroughly in the interim period between initial and first-followup MRIs, so when I found out the tumor was still growing -- and quickly -- I already had a strategy in place.
I was initially against radiosurgery, until I found out that the statistical chance of it causing malignancy (cancer) was virtually no greater than the risk the general population has of getting cancer. Then came the question of whether I could accept living with the damn thing still in my head (hopefully dead in time, after radiosurgery) or felt I must have it removed for my peace of mind. That was actually easy for me. I figured I'd already lived with it for probably well over 10 years at that point, so it was no big deal to still have it inside my head -- as long as it didn't continue to grow. "Who knows what other tumors I might have elsewhere in my body that haven't been found yet," I mused. "Should I get a full-body scan and have every tumor and cyst removed?" I was the same person I was before diagnosis. I could live with my "ten-year companion" inside me. Especially considering the alternative:
I opted for CyberKnife (CK) radiotherapy instead of resection because statistics indicated (and my doctors advised) that, for my size tumor (which had grown to 2.1 cm) and its location, I had a much greater chance of preserving my hearing and facial-nerve function with radiosurgery: 75% chance of hearing preservation and 99% chance of facial-nerve-function preservation with CK, vs 100% chance of hearing loss and 31% chance of permanent facial paralysis with resection (either translab or retrosigmoid approach). Please keep in mind these exact percentages are based on my particular circumstances; surgery can yield much better results in other patients presenting a smaller tumor and few symptoms).
I chose CK instead of GammaKnife (GK) because statistics show CK has a slightly better record of success at preserving hearing, is non-invasive, and is fractionated (the treatments are split up into mulitple smaller doses, which I thought I might tolerate better). Also, CK delivers only 15% more radiation at the center of the tumor vs at the periphery. In comparison, GK delivers fully twice the dose (100% more) of radiation at the center than at the periphery of the tumor. Because neither form of radiosurgery attempts to avoid hitting important cranial nerves that the tumor may be encasing, GK will deliver a higher dose of unwanted/unnecessary radiation to those healthy structures located at the center of its radiation cloud (this is thought to be the reason why the especially sensitive hearing nerve has a slightly better chance of surviving treatment with CK than with GK).
That's my personal story, but yours should and will be your very own. The choice of what treatment (if any) you should seek is rightfully totally up to you and is a very personal choice. After all, you're the one who will have to live with it. So make it your own.
As far as where to have your chosen treatment performed, I'd say go wherever feels to you like you'd likely get the best results. I traveled far from home to have my CK treatments performed at Stanford University Medical Center in California. Considering my hearing and facial nerve function could potentially be affected for the rest of my life, I felt the benefits of having the very best (from my perspective) doctors and facility treating me far outweighed any inconvenience travel might cause me. My wife and I made it an adventure, eating out at a different restaurant each night and staying at a wonderful Bed & Breakfast in the Stanford area. I am completely happy with my decision to get CK at Stanford. After a rough 4 weeks immediately post-treatment, I began to rebound quickly. I now feel I am 100% back to where I was before CK in terms of well-being. In one particular way I actually feel better than I did before treatment: my tinnitus has decreased in level and its pulsatile component has virtually ceased. (You should know, however, that this is not a usual outcome of CK; I guess I got lucky!)
You're going to be okay. Research your options thoroughly (this forum is overflowing with great research-based information and empirical observations), lean on everyone here for support, and follow your gut instinct on what to do and when, and it will all turn out okay. It's good to have you join us.
Best wishes,
Tumbleweed
