BY AMBER SMITH
When she moved to Syracuse two summers ago, Andrea Scheibel, 32, had a rare form of anemia that required blood transfusions, sometimes as often as every week.
She got sick in 2014 when her body stopped making red blood cells. She was diagnosed with pure red blood cell aplasia the same week her husband, Will, defended his doctoral dissertation and graduated from Indiana University in Bloomington, where they were living.
Scheibel’s doctor always suspected something more was going on with her, beyond the anemia for which she was being treated. Although he cured the pure red blood cell aplasia, her body didn’t reveal cancer until after she and her husband relocated and she became a patient of Upstate hematologist/oncologist Diana Gilligan, MD, PhD.
Scheibel met Gilligan, whom she found with her dad’s help, in August 2015. By then, her body had begun producing red blood cells again. “From the first appointment, I was like, ‘she’s the one,’ ” Scheibel says. “She just seems like she’s on top of it — all the time. And I know that she knows what she’s talking about.”
Her appointments with Gilligan every month became part of her routine. Scheibel started working in the music resource center at Onondaga Community College. Will Scheibel took a faculty position at Syracuse University’s English department. The couple settled into a home.
In November 2016 Scheibel was getting ready to prepare a Thanksgiving meal for her in-laws, who were visiting Syracuse. She went for her regular blood test that Wednesday. Her red blood cell and platelet counts were both alarmingly low.
Gilligan ordered an emergency bone marrow biopsy.
Scheibel had undergone two previous such tests, but never when she was so sick. This time, laboratory pathologists looked at her bone marrow and found T-cell large granular lymphocytic leukemia, a chronic leukemia affecting the white blood cells.
Robert Hutchison, MD, is an Upstate hematopathologist who specializes in blood analysis. Gilligan says he found the large granular lymphocytes in Scheibel’s blood basically because he was looking for them.
Hutchison and colleagues have published several papers about disorders of the blood, including some about the behavior of large granular lymphocytes. With a keen research interest in this type of leukemia, the hematopathology group screens using:
* blood film examination, to see abnormalities in red blood cells, white blood cells or platelets;
* flow cytometry, in which cells are illuminated as they flow in front of a light source to reveal their size, shape, presence of tumor markers on their surface and other characteristics; and
* molecular diagnostics, techniques that analyze biological markers in the patient’s genes and proteins.
“It is quite a common disorder,” Hutchison says of large granular lymphocytic leukemia, “but it is often overlooked because it is usually indolent, less severe than in this patient.”
With the diagnosis of cancer, Scheibel noticed how her thinking changed, and how people spoke to her differently. Still, she was glad to have an actual diagnosis – and a doctor with a plan.
Scheibel has an appointment at the Upstate Cancer Center every week. She says Gilligan makes her feel as if she were the only patient she has. “I always feel like she’s doing active research on my situation. She’s always looking ahead to my next treatment or test.”
How to find a specialty doctor when you are new in town
- Start researching as soon as you know you will be moving, advises Andrea Scheibel’s dad, Bob Verdoorn, who helped her find a doctor in Syracuse.
- Ask your original doctor if he or she can recommend anyone.
- Use a search engine to find the names of specialty doctors in the area where you are moving. Verdoorn used Healthgrades.com and searched for hematologists, doctors who specialize in diseases of the blood.
- Look for what you can find about the doctors’ backgrounds and areas of expertise.
- Run their names through some of the doctor rating websites. Don’t just look for someone whose patients say they’re the greatest doctor ever. Read reviews that give you a sense for the doctor’s professionalism and how they relate with their patients, Verdoorn says.
- Find out where their offices are, and whether they are taking new patients. Also check on insurance coverage.
- Scheibel’s diagnosis was complicated, and her doctor suspected something else was going on with her blood. So Verdoorn was looking for a hematologist with experience in oncology. He and his daughter also wanted someone with an interest in research. Doctors who work at academic medical centers, such as Upstate, are likely to be involved in research in addition to caring for patients.
- Verdoorn knew he wanted a doctor with experience for his daughter. He didn’t want someone who had just finished training, and he didn’t want someone who was close to retirement. That helped him focus his search.
- Once you’ve narrowed your options, share their professional biographies with your original doctor. He or she may be able to steer you.
- Make arrangements for your medical records to be transferred, so your new doctor can become familiar with you before your first appointment.
This article appears in the spring 2017 issue of Cancer Care magazine.