Benign fibroids? YEAH, RIGHT!
Debie Gurkin lives in Belleville, Michigan and was diagnosed at age 49 with uLMS. That was over nine years ago. The original diagnosis was benign fibroids, and to that Debie says ,”Yeah, right!” So what happened?
Debie’s journey began with bloating and occasional pain, two years before her August 5, 2010 surgery. The results of an early ultrasound wand indicated fibroids. When she started to have more pain and bloating, the results of another ultrasound indicated a cyst that appeared to be “building walls.” A follow-up test was scheduled two months later. The diagnosis? Benign fibroids. Shortly thereafter, Debie’s menstrual cycles started getting longer. The response? Most likely this was a side effect from the fibroids, or possibly pre-menopause.
She was also told that during menopause, the fibroids would shrink. However, her cycles were now lasting two weeks, and her OBGYN suggested two options: ride it out until menopause or, though she was young for a hysterectomy, have the operation. She chose the former, but that decision didn’t last very long. Her clothes were getting tighter and she could feel a hard spot around her pelvic line. Her OBGYN scheduled an urgent scan and a follow-up appointment. During the appointment, she learned that her uterus was the size of a woman’s who was 20 weeks pregnant. Options? She could have the hysterectomy or try a new treatment that involved injecting the fibroids to cause shrinkage. Again, she was assured that the fibroids were benign.
Since Debie had been feeling unwell for so long, she chose to have a hysterectomy, and her surgery team agreed to do all they could to save an ovary. This did not happen, and Debie was grateful, for the pathology report that she received ten days post-surgery confirmed low-grade LMS. After an anticipated 1.5 hour surgery turned into four hours, her surgeon declaring that her insides were a train wreck, and a diagnosis that morphed from fibroids to sarcoma, Debie was devastated. Her doctor was equally shocked. In tears of fear, she called her husband.
In retrospect, Debie feels she was blessed that her operation was done at the University of Michigan which, post surgery, referred her to their Cancer Center. She later learned that University of Michigan is on the list of recommended Sarcoma Cancer Centers. The tumor board elected a wait/watch approach since her sarcoma was confined to the uterus, removed with clear margins, and performed without morcellation. This meant no chemotherapy and no radiation. Instead, Debie found the LMS group and joined the ACOR “listserv,” the precursor to the LMSDR Facebook group. The Cancer Center connected her internally to a psychologist who helped her deal with a difficult and sudden onset of menopause and with the fear/anxiety/depression of the cancer diagnosis. Lack of sleep was another very challenging side effect. She started taking Effexor and drinking alkaline water, both of which seemed to help.
If anything, what does Debie wish she had done differently? Learned about and started cognitive behavior therapy (CBT) sooner. Instead, in order to work through her recurring anxiety and depression, Debie withdrew from social events. She feels that for a time she “let the diagnosis, the worry, the scanxiety get the better” of her.
Debie also wishes she had tried to find natural remedies for menopause since she had several side effects from the prescribed medication, and at one point had to go to University of Michigan Psyche Emergency. She also had serious joint pain, especially in her hips, and a burning sensation and sores in her mouth that ceased after she curtailed the medication. In retrospect, she might also have elected to have surgery earlier and taken CBD and/or practiced mindful meditation sooner instead of opting for anxiety/depression meds, as some of the side effects created more depression.
That was then, though. Now Debie feels blessed that her work allows for a flexible schedule, and she can spend two days a week caring for her grandchildren. When she was diagnosed her first grandchild had not yet been born. She prayed a lot that she would get to hold him and watch him grow. She now has four grandchildren in Michigan and nine in Texas! Her family and her husband, in particular, was and is a blessing.
And her suggestions for LMS newbies?
Listen to your body and don’t doubt yourself. Be your own advocate. Have someone accompany you to all visits and scans. Request ALL of your records and review them. Debie did not find out until a year after her surgery all her results, e. g. the tumor size, grade, mitosis, ER/PR. Finally, after she was NED for five years, Debie was told scans were no longer needed. She referenced the standards for LMS and she and her doctor agreed to continue with exams every year and a half. Advocacy has paid off for Debie!
If you have survived leiomyosarcoma 7 years or more… we’d love to hear your LMS Thriver Story! Email us at 2LMSDR@gmail.com