I can advocate for better care by staying up to date on the latest advances in treatments for GIST and working with my oncology team to make the best medical decisions.
Six years ago, at age 62, I was feeling in great shape. The year before, I had taken over custody of my 2- and 3-year-old great-grandchildren and decided to change the course of my career from motivational speaker to motivational coach to be home more often with the kids. It was during one of our playtimes that I discovered I wasn’t in such great shape after all. I was on the floor with the children, and my great-granddaughter straddled my stomach and sat down really hard. The pain I experienced was something I had never felt before. It was so unexpected and so unusual, I knew immediately something was wrong and saw my primary care physician.
Although my doctor could feel a mass in my lower-right intestinal area, neither a sonogram nor an MRI clarified the scope and exact location of the mass. Because the tumor looked like it was on my uterus, I was sent to a gynecologist, who then sent me to a gynecologic oncologist. A new CT scan showed that the tumor had moved from my right side to my left side, and it was growing. I was told I needed a complete hysterectomy.
As I was being prepped for surgery, and while I was under anesthesia, the tumor burst. Once the surgery began, my doctor discovered that the tumor was actually located on my small bowel, and he called in another specialist who biopsied the tumor. The diagnosis was gastrointestinal stromal tumor (GIST).
Getting Disease Control
Although my oncologist never gave me a prognosis, I later learned from my own research that overall survival with this cancer was usually less than 2 years. I’m glad I didn’t know that then.
Because my mutation status involved KIT exon 9, I was eligible to participate in a randomized double-blind, placebo-controlled trial of imatinib (Gleevec). Six months into the trial, my oncologist called to say that I was on the placebo and that he wanted me to start taking the drug because the trial had shown that it helped reduce the risk of tumor recurrence. But six months after that, the tumor recurred on my bladder, and I was put on sunitinib (Sutent). While the drug seemed to stabilize the growth of the tumor, it didn’t eliminate it, so I had a second surgery in 2008.
Since then, I’ve been whipsawing between imatinib and sunitinib to keep the cancer at bay, but the side effects from both drugs are difficult for me to tolerate. In January 2012, I had a third surgery to remove another tumor recurrence—this time back at the original site on my small intestine—and I’ve been on a lower dose of adjuvant sunitinib ever since. I’ll know soon whether it has kept the tumor from recurring.
Staying Ahead of Cancer
I know that there is a possibility that sunitinib will fail, but I also know that GIST is getting a lot more attention now and that there are several promising drugs being tested in clinical trials. That gives me hope. Any anxiety or worry I have isn’t for me; I’m not afraid of dying. I see having cancer as one more challenge in my life, and I never ask, “Why me?”
My concern is for my great-grandchildren and making sure that I’m around long enough to see them through their adolescent years. I can’t change the fact that I have cancer any more than I can change the fact that I have blue eyes. But I can advocate for better care by staying up to date on the latest advances in treatments for GIST and working with my oncology team to make the best medical decisions—and even challenging my doctors when I don’t agree with what they want to do.
Although I expect to live a long time, I’m also realistic that that may not be possible. Having that realization has created a sense of urgency to live my life more fully, give back to my community through volunteerism, and enjoy every day. Raising my great-grandchildren has given my life even more purpose and an even greater desire to make sure that I do whatever I have to do to stay well. ■
Margo Chevers is a motivational coach living in Wales, Massachusetts.