My name is Gillian and I'm 55. I was diagnosed with metastatic high grade ESS in Oct. 2006.
I worked at Kaiser-Santa Clara, as a member of the radiation oncology team where I was a medical dosimetrist. My job was to figure out how to deliver the radiation while sparing as much normal tissue as possible. My specialty was high dose rate brachytherapy. How ironic that the last treatment plan I would do was my own. Having been in the cancer treatment business for 30 years, I know quite a bit about cancer. I knew what I was up against and so did my colleagues.
I requested my surgery be done by a gyn onc surgeon who I knew was excellent. Within a week from diagnosis, I had my TAH/BSO. Lymph nodes were clear. I was told the tumour was within 2mm of bursting through the uterine capsule. I also had a lesion on my vaginal wall which was resected. A subsequent PET scan showed a 2.5 cm mass lying against my right ilium and several lung nodules. When I recovered enough from the surgery, I started 6 cycles of Taxol/Gemzar, followed by 45 Gy to whole pelvis with a 5 Gy boost to the pelvic mass and three HDR sessions to treat the vaginal wall. It was so weird to be receiving treatments from my co-workers. The radiation oncology staff at Kaiser-Santa Clara are wonderful. I tolerated my treatments quite well.
I was my med onc's first ESS patient. I was told that with my stage disease, I might not see more than two years. Not wanting to spend the rest of my life sitting at a treatment planning computer, I retired.
I responded well and was in remission for 14 months. I have a PET scan every three months. The PET scan in Sept. of 2008 showed a single, 4mm reactive nodule in my right lung. My doc didn't want to take chances and neither did I, so I had another chemo course of 6 cycles of Taxol/Gemzar. My second remission has lasted a year and I have another PET scan in a couple of weeks. I feel good, although I've put on 15 pounds since I was diagnosed due to less physical activity and a what-the-hell attitude towards having that piece of cheesecake.
Well, it's been three years since diagnosis and in that time I've enjoyed life at much as possible. I paint,(www.galafineart.com). Even when I was getting my chemo I brought my watercolours into the infusion center. I bike ride, hike, travel with my husband of 33 years and go to Shark hockey games. I got to see my daughter graduate from college and hopefully will see her get accepted to a medical school this year. I have become used to living in three month intervals between PET scans and plan my activities accordingly.
Hoping to hear my PET scan is `all clear' again...
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