When Samantha’s uterine fibroid was diagnosed in 2000, Focused Ultrasound was just being developed as a new diagnostic/treatment technology. Sam (as she likes to be called) was the General Manager of GE Women’s Health Care business and remembers getting a phone call about Focused Ultrasound as a business opportunity for her company. Only a few hours earlier that same day, her OB/GYN had found a 6 cm fibroid during Sam’s annual exam.
“Talk about coincidence!” Sam says. If this were a story or a film, Sam would immediately put two and two together, decide to enroll in the early Focused Ultrasound trials at Brigham & Women’s Hospital, and be one of the first patients with fibroids treated by Focused Ultrasound. But real life rarely works that way.
“I really didn’t know much about fibroids at that point,” Sam recalls. “I wasn’t having any symptoms, so my doctor advised me to use ‘watchful waiting’ – just wait ‘til my pants got tight and I felt low on energy before doing anything more about the fibroid.”
Sam was 32-years old and hadn’t had any children, so she wanted to preserve her reproductive capacity. “My doctor said that when the time came for treatment, I would have two options: uterine artery embolization (UAE) or myomectomy.”
The fibroid grew two centimeters each year for the next two years. During this time frame, Sam obtained ultrasound and MR images of her uterus to monitor the fibroid’s growth. Once, at a radiology tradeshow in Chicago, she shared images of her uterus with people at InSightec who talked with her about Focused Ultrasound and fibroid treatment. At that time, little was known about maintaining reproductive capacity after Focused Ultrasound.
When her fibroid reached 10 cm in diameter, Sam decided it was time to act. “I still didn’t have any unusual bleeding, but I looked like I was 4 months pregnant,” she said. “My doctor said that I could continue to monitor the fibroid, but I was afraid that if it got much bigger, I’d need to have a hysterectomy. I still really wanted to have children at some point.”
In 2003, Sam decided to have her fibroid removed by myomectomy. “For six months before the surgery, I took Lupron to shut down my hormones and try to shrink the fibroid. I had hot flashes sometimes – mostly on airplanes during take-off! – but that was the main side-effect.” Unfortunately, Lupron didn’t shrink her fibroid at all.
“I was single at the time, so my mom took three weeks off work (in Italy) to help me after the surgery. The surgeon had also operated on a friend of mine,” said Sam, “so I felt very comfortable with that. But the four days I spent in the hospital after surgery were extremely painful. When the nurses told me to get up and walk around the second day, I thought they were crazy!”
Sam can’t imagine how women cope when they have families to care for or a boss who is less understanding than hers. “I had the luxury of recovering in front of ‘bad TV’ for five weeks,” she said. For the first few weeks she didn’t lift anything heavier than a gallon of milk. “It was four weeks before I felt human again,” she remembers. “The fifth week I worked three days, and the sixth week I worked full-time again.” The myomectomy cost $20,000 – thankfully, almost fully covered by my insurance company – and required two follow-up visits.
Since then, Samantha has had two successful pregnancies. Although she is at risk for developing more fibroids, her pregnancies have probably provided some protection. One of her deliveries was by C-section. “I think the myomectomy was a much more disruptive life experience than the C-section,” Sam says. She is glad that Focused Ultrasound is now an option for women in her situation.
“My advice to other women is: Understand all the treatment options and don’t be afraid to get a second opinion,” Sam urges. “You need to pick the treatment that is best for your own situation, so don’t make that decision until you’ve collected a lot of information.”