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My first SRS procedure: MRI previous to treatment showed a second small lesion of 6mm in size. That is not unusual. Having the headframe placed with four 'pins' or screws was painful briefly. I was given an IV pain medication after the frame was placed at 7 am. Then the pre-treatment CT scan. Into a private room for the rest of the day to wait until 6pm for the treatment.
As the pin sites became painful again, I was given a bit more pain medication. The SRS was only difficult in laying down with the frame on my head. The procedure is painless, with length depending on number of lesions treated and dosage of radiation. Getting the headframe off, pins removed is in itself quite an ordeal, with a 2 hour bad headache that nothing will touch but time. I felt certain that the treatment would be totally successful. I also knew going in that there was a high risk of recurrence to the brain.
I had a bit of pressure that a small dose of Decadron dealt with for just 7 days. No hair loss, memory issues nor fatigue.
MRI with contrast at two months showed much shrinkage to both lesions. My six month follow up MRi showed more shinkage to treated mets, but an additional 14 lesions were now visible, with one on my brain stem measuring 3mm. I was still asymptomatic.
Over the course of the next 12 months I chose to have the remaining lesions treated in batches, refusing WBR throughout. I had no evidence of disease in my body and was on no other treatments for my breast cancer. I stayed asymptomatic from the brain mets.
The second SRS procedure treated the brainstem and three other lesions. This day was more difficult for me as my pain meds were held back, though the pin sites became very painful and had me in tears. This was as a result of going against the radiation oncologistâ€™s continued push for WBR.
To my delight, a CyberKnife clinic had opened locally when I had brain mets remaining to be treated. I found a new radiation oncologist and neurologist. My experience with CyberKnife was for 6 brain mets, in two sessions, two days apart. All mets were in my cerebellum. The face mask forming was hot when put on, but just as I thought I couldn't stand it, began to cool to acceptable.
I was on the table for between 90 minutes and an hour per each session. Because of that, I had some pain on the back side of my head from the amount of time it was in that position. They clamp the mask down tight. I found that purposely pursing my lips, tongue over teeth the second day while getting clamped to table gave me just enough room so I wasn't sore in mouth afterwards. (I've read that a space is cut into mask now over eyes and mouth areas). Also, I had some Ativan that round. Much better, although my head was sore again. In at 10:30, out the door at noonish. I much preferred the CyberKnife to SRS with headframe.
This was the only time I lost all hair to the radiated area, and I believe it was from the area treated: low back of head. All the hair grew back in a normal time frame.
All of my focalized rads were 100% successful. I had a minimal amount of head pressure, some dizzinessm that low dose Decadron for 7-10 days handled quite well.
I recurred for a third time with 8 brain mets, one again on brainstem/pons. Was told that more focalized raditaion would be dangerous (as it is cumulative), yet I was still advised to have whole brain radiation. That makes no sense to me, even now more than two years later. I waited until I became symptomatic (six months) to begin any treatment. By that time I was dizzy 24/7 with no relief.
Between my research and my medical oncologistâ€™s experience, I began treatment with Xeloda/Temodar. It was a dosage and schedule that was created just for me. After two rounds of chemo, my mets had shrunk near 50%. Minimal shrinkage after that, to stable for the past 18 months. Have tweaked my dosages and schedules somewhat a number of times. I feel quite blessed to have responded so well to this chemo combo... for brain mets no less!
I have been very lucky to remain with no evidence of breast cancer in other areas of my body. I have fatigue at times, fluctuating moods, but overall a good quality of life. I had major surgery for cervical cancer three years ago. No other treatments needed. I complain about my memory, but so do my friends of my age, too. I believe mine is worse to an extent, but I can't prove it.