Oct. 18--ST. LOUIS -- Ann Roberson, 41, has metastatic breast cancer, a recurring cancer that developed after her initial bout with the disease. The first episode ended with a double mastectomy and chemotherapy.
She believes she wouldn't be alive today had she not taken control of her health care and found a doctor who treated her with dignity.
Her saga began in 2002 when she was diagnosed at age 31. "I found a lump while I was in the shower," she said.
Her doctor told her it was a bruise that would go away. She insisted that it be removed. "It didn't look like normal cancer," she said. "And (the physician) assured me it probably wasn't cancer."
A pathology report came back saying "it was an aggressive stage 2 or 3 cancer," she recalled.
"When I walked in for my first chemo, the doctor said, 'You might as well shave off your hair because we can't save it.' "
She got the chemo through an IV rather than a more stable port, she said. The drug spilled onto her arm and caused swelling.
Her doctor gave her steroids. "I ballooned up like a blimp! I gained 120 pounds," she said. "I kept expanding and expanding. And he said if I had a problem with my weight, I needed to go to the gym."
Roberson said she didn't know what to do. "You try to listen to the doctor, but soon you say that's a crock! The doctor didn't tell me to stop my birth control pills; he didn't tell me I was ER (estrogen receptor) positive."
Christine L. Krieger, owner of Patient Advocacy Services of St. Louis, said no one is obligated to endure a physician who makes her uncomfortable.
"When they get the first inkling the doctor is not on their side, they should end the relationship, see who else is out there," she said. "It's usually a gut feeling, and that's fine. Change right off before you have any more issues with the physician. It's not going to get better, and it can affect the outcome."
Krieger is a registered nurse and a lawyer. Her business helps patients navigate the health care system, especially in hospitals. That means assuring good lines of communication, making sure her clients are satisfied with their care.
A patient can be intimidated by the medical environment, Krieger said, and be reticent to fire a doctor. She suggested taking a friend along, or doing it in writing.
Even with referrals from a trusted family doctor, "You should interview more than one physician," she said. "And sometimes, you have to say, 'I'm not comfortable with this relationship and I want something else.' That's all they have to know."
Roberson said she fired her oncologist mid-treatment. Then the office wouldn't turn over her medical records. "They said if I wanted a new doctor, I'd have to have one in the same (practice)," she recalled.
"I said 'no, I don't.'"
She retrieved her records and found Siteman Cancer Center.
Her new doctor agreed with the treatment she was getting and continued it. But he backed off the steroids because her weight had jumped much too high. "He said I shouldn't have gained more than 25 pounds," she said.
She went into remission for nearly 10 years. Over time, the treatments cost her a career as an English horseback riding competitor. Her health insurance dropped her when she left a job; then no others would accept her because of her pre-existing cancer.
In 2010, while working with horses one day, she couldn't breathe. A CT scan found that the cancer had returned -- in her lungs, liver, spinal cord, rib cage and pelvic wall.
"I've been in treatment since September (of 2010). The tumors are shrinking," she said. "But I'm riding again; I want to get back in the jumper ring, riding fast, jumping high," she said.
"I'm very lucky that I have state insurance, a (Medicaid) program. Illinois has a breast and cervical cancer program for women," she said. "I was accepted into the program with very little problem."
"I was very lucky. What I have is going to be ongoing."
Recently, Roberson has joined her oncologist to speak to medical school classes at Washington University. She tells the students how a patient experiences cancer. She answers questions. She tells her story.
Her ability to stand up for herself came from experience. "My dad died when I was 25. I watched people push my mom around," she said. She spoke up for her mother.
"Nobody else was going to stand up for me. I'd have to stand up for myself. I tell everyone, if you walk into that doctor's office and you don't feel comfortable, go get a second opinion."
Krieger also offered a bit of advice when searching for a doctor: "Ask the nurses You know a nurse, or someone else does, or the nurses in your doctor's office.
"Nurses are acutely aware of what physicians are good and why and which doctors are good listeners. If you're a good listener, you're good at any skill."
Do you know a "How I did it?"
Suggest a candidate to:
Harry Jackson Jr.
St. Louis Post-Dispatch
900 North Tucker Boulevard
St. Louis, Mo. 63101-1099
Email -- harry.jackson@post-dispatch.com
Phone -- 314-340-8234
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