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A robin's-egg sized tumor (2.9cm x 3.6cm) was found in my left cerebellum, near the bottom of the skull. I was told that surgical resection/ craniotomy was the only choice available, due to the large size of the tumor, and because systemic chemo doesn't pass the blood-brain barrier.
I'm very frightened of going under general anesthesia. When I asked what would happen if I refused surgery, my oncologist painted a very grim picture of increased pain and possible paralysis, as the edema and tumor pushed against the spine. I was also told that SRS (stereotactic radiosurgery - CyberKnife) would be used a few weeks following surgery, to "clean up the margins".
I was told that surgery would take about 4 hours, and they expected to be able to remove the encapsulated tumor whole. That I'd need to take 4-6 weeks short-term disability from my job, and would not be allowed to drive for four weeks while healing from the surgery. That I'd be in the ICU following surgery, for monitoring, and then moved to a room. That there was a very small chance of peripheral brain damage, due to the location and encapsulated nature of the brain met. The radiation oncologist & neurosurgeon on the CyberKnife team consulted with me, and told me what/when to expect the SRS.
The craniotomy was surprisingly painless. However, a 9-month-long staph aureus infection prevented healing of the surgical incision, and caused seepage, which was messy, sometimes uncomfortable, and very discouraging. The neurosurgeon offered to "go back in" and clean out the wound â€“ another craniotomy - but at that point my trust in him was destroyed (he'd ignored the persistent nature of the infection, and didn't tell me he'd had a titanium plate & hardware installed in my skull to hold the bone plug in after surgery).
I was seen by a wonderful Infectious Diseases doctor, put on three strong, focused antibiotics. When that didn't clear up the infection, she suggested that I see a neurosurgeon about having the bone plug, which was by then dead and infected, and the covering titanium, removed, to allow healing. It took me about 6 weeks more to find a new neurosurgeon, and then a few consults and 1-hour follow-up craniotomy to remove all the infection and its possible causes (one of which was, according to the I.D. doctor, that my immune system was rejecting the titanium hardware).
After the craniotomy, CyberKnife was really quite quick and uncomplicated: two outpatient sessions, one to fit the mask, and then the next day, to administer the SRS. The CyberKnife fitted foam mask avoids the frame screws of other SRS procedures. I was told it was okay to take a sedative beforehand, and after the first (of 3) procedures, I was able to refuse the Decadron offered post-procedure.
The cerebellar tumor was removed with clean margins, and hasn't returned in 2 years. One small (.5cm) spot on theright caudate, close to the basal ganglia, was treated with SRS in July 2005, and is now showing up on routine quarterly brain scans, growing by mm s each scan. No one is sure whether the spot is due to radiation injury or growing cancer, which information would, of course, guide treatment.
Meanwhile, I have started on Tykerb along with the Herceptin I've been on since bcmets diagnosis, and otherwise we're "watching and waiting". A neuro-oncologist with whom I consulted advised strongly against further SRS to that spot, and said that there is a risk, if it grows further, that it could interfere with blood flow to the brain. His opinion is that the spot is a mini-hemorrhage due to radiation injury. He advised whole-brain radiation, which I am reluctant to submit to.
I've had two more small lesions show up on routine scans - asymptomatically. One, as described above, in the right caudate, the other in the right cerebellum. Both were treated with CyberKnife SRS. No other brain mets have as yet been detected.