With medical information now just a click away, it’s difficult to imagine a time before the Internet existed, when finding answers to questions about serious diseases was nearly impossible. When I was diagnosed with liposarcoma 33 years ago, there was only one oncologist in my hometown of Tyler, Texas, and he didn’t know anything about the prognosis of this rare cancer. There were no books about liposarcoma in the public library and no patient pamphlets in medical centers for me to turn to for information. I was so young at the time—just 24—and so removed from thinking I could have a serious illness that when the doctor said I had a stage II malignant tumor in the deep fat tissues in my left thigh, I didn’t realize that “malignant” meant cancerous.
Even after traveling 2 hours from my home to the MD Anderson Cancer Center in Houston for a second opinion, I kept thinking this was all a mistake and that my biopsy results from the tumor that had been removed had gotten mixed up with someone else’s. When my oncologist told me I would need adjuvant radiation therapy and that with it I had an 80% chance of being cured of the cancer, I thought, ‘I want a 100% chance of being cured.’ And refused the treatment. That’s how naive I was about understanding what I was facing.
When the liposarcoma came back a-year-and-half later in the exact same area, I was ready to do whatever my doctors recommended. By then I had two young children and I wanted to live. I had surgery to remove the second tumor, followed by 6 weeks of radiation therapy. X-rays—there were no MRIs or CT scans back then—showed the area was clear of any tumors.
Coping with Treatment Side Effects
Although I’ve remained cancer-free since 1980, I’ve had to battle years of horrific side effects from the radiation therapy I was given. The femur in my left leg snapped one day as I was walking; the bone was so brittle and damaged, I had to have a metal rod inserted into the femur and attached to my hip and knee. Three years ago, the rod worked its way out of my hipbone and had to be replaced. When the surgeon cut into my leg, he found the area filled with rice bodies. Although they were removed, the wound from the surgery never quite healed. After two life-threatening infections, several surgeries, and several months of IV antibiotics, the rod was removed, and my doctors are trying to mend the bone by filling it with calcium. In the meantime, I have to use crutches, and I may need to use a walking cane for the rest of my life.
I know that’s a small price to pay for my life. But with more and more patients surviving their cancer, I’m wondering whether doctors are paying attention to the long-term and late side effects from treatment that survivors often face. Who is monitoring their overall care, looking for signs of treatment side effects or cancer recurrence once they’ve returned to their primary care physician?
Helping Survivors
I’ve been told by every doctor I’ve seen that my problems are rare, but I’m sure I’m not that unique given the amount of radiation I received so long ago. I don’t know—and no one has been able to tell me—if I’m vulnerable to other health problems from late effects yet to come.
With all the medical and professional networking websites that are so easily accessed today, it shouldn’t be difficult for physicians to work more closely together to help each other—and survivors—learn about potential health risks from treatment late effects, especially for rare cancers. By doing that, physicians will help survivors achieve a better quality of life for many years after their cancer diagnosis.■
Sheila Leatherwood lives in Tyler, Texas.
