Her diagnosis leads to career

Katherine Frega was a high school junior in Westfield, N.J., in May 2010 when she was diagnosed with Hodgkin lymphoma.

Upstate medical student Katherine Frega, right, with her sister, Jennifer. Jennifer donated stem cells as part of Katherine’s treatment of Hodgkin lymphoma.

She transferred her cancer care to Upstate when she became a student at Syracuse University in 2012.

Frega graduated from SU with degrees in biology and public policy. In fall 2016 she started medical school at Upstate with the goal of becoming a pediatric oncologist.

Two of her former cancer doctors, Jody Sima, MD, and Andrea Dvorak, MD, are among her mentors now, and her history as a cancer patient provides a unique context for her studies.

“I took an active approach to my treatment, asking ‘sciency’ questions,” Frega recalls. “It’s really cool now, as a first-year medical student, seeing the chemo drugs I was on in clinical trials now being taught to me.”

Frega finds time to volunteer as a leader in Upstate’s “Peds Pals” program, which matches a first- and second-year medical student with a pediatric cancer patient for regular tutoring and companionship. Frega’s “pal” is a teen girl who helps provide Frega with perspective.

“I never really wanted to be known as a person who had cancer,” she realizes. “I wanted to be known for what I want to do for others. I’ve been sick, and I’ve been through some terrible things, but I want to make things better for others.”

This article appears in the spring 2017 issue of Cancer Care magazine.

Posted in cancer, health care, health careers, medical education, medical student, patient story, Upstate Golisano Children's Hospital/pediatrics

A detour: Medical student learns about health care as a patient

BY AMBER SMITH

Medical student Alex Paley was in his third year of medical school when he was diagnosed with a brain tumor on Jan. 18 and underwent emergency surgery. He has been in treatment since then.

He would much rather be a doctor than a patient.

Alex Paley has a brain tumor, and his fellow medical students at Upstate (below) set up a crowdfunding site for him. (PROVIDED PHOTO)

Paley has a rare, fast-growing tumor in his brain called a glioblastoma, which made itself known with an excruciating headache and slight facial paralysis. Lawrence Chin, MD, chief of neurosurgery at Upstate Medical University, removed nearly all of the tumor.  Doctors at Memorial Sloan Kettering Cancer Center in New York are overseeing Paley’s radiation therapy and chemotherapy.

He ran cross-country at Albany High School and continued running on the track team at the University of Miami, where he majored in engineering. He began medical school at Upstate in 2014. Running continued to be a passion.

After his diagnosis, his Upstate classmates put together a fundraising run with t-shirts proclaiming “I’m with Alex,” and 814 donors have helped raise $77,604 for Paley’s expenses on YouCaring.com.

Paley says he’s grateful for his medical knowledge. It has saved him from having to educate himself during his own medical crisis, and he’s not as scared or overwhelmed as he imagines he would be otherwise. He finds himself explaining a lot to his mother.

With the vantage point of a patient, Paley says he sees the importance of explaining everything to patients, and of being available to field their concerns.

Yes, he would rather be finishing medical school than undergoing chemotherapy. But, Paley is making the best of his situation – and still learning about medicine.

He says, “I feel like this is going to help me be a better doctor.”

Paley’s medical school classmates at Upstate who helped raise money to cover his expenses include, from left: (front row) Gabrielle Ritaccio, Kathryn Conway, Victoria Fairchild, Kathleen Donovan and Samantha La Qua; (standing) Peter Congelosi, Daniel Santarsieri, John Lofrese, Mckinzie Neggers, Mary Powers, Emily Kellogg, Kaitlin Nicholson, Caroline Shank, Omazonna Amadi, Larissa Assam, Emily Malavenda, Danielle Faivus and Katie Patrick. (PHOTO BY SUSAN KEETER)

This article appears in the spring 2017 issue of Cancer Care magazine.

Posted in brain/spine/neurosurgery, cancer, community, fundraising, health care, health careers, medical imaging/radiology, medical student, patient story | Tagged

Psychosocial care tends to body as well as mind

Jeffrey Schweitzer, PhD, and Angelina Rodner, PhD, oversee the Body Mind Wellness Group for people with cancer. (PHOTO BY ROBERT MESCAVAGE)

Patients are used to having their pulse, blood pressure, respiration, temperature and pain level recorded in their medical record. Now a “sixth vital sign,” that of emotional distress, is beginning to find its way into patient charts. It’s called distress screening.

Patients who have difficulty coping with cancer may be referred for psychosocial care.

“This originates from the medical philosophy of focusing on the whole person. In addition to their physical health and well-being, we want to also focus on their psychological and emotional health,” says rehabilitation psychologist Jeffrey Schweitzer, PhD.

He says it’s not uncommon for people who have symptoms suggestive of a cancer diagnosis to report high levels of stress, anxiety and fear. Often, people who receive a cancer diagnosis grapple with “mortality salience,” a sudden awareness of their mortality. A person may ponder what death will mean to himself or herself, its impact on loved ones, and spiritual implications. Schweitzer says, “Understandably, this brings about significant stress.”

Schweitzer and his colleague Angelina Rodner, PhD, provide individual psychosocial care to patients of the Upstate Cancer Center. They also oversee a new Body Mind Wellness Group for anyone with cancer from throughout the Central New York community. The group will meet regularly, covering nutrition, sleep, stress physiology and other issues important to people facing cancer.

Learn more about the Body Mind Wellness Group by calling Schweitzer at 315-464-2378. Hear a podcast/radio interview with Schweitzer and doctoral candidate Brian Arizmendi about the group and its purpose. This article appears in the spring 2017 issue of Cancer Care magazine.

 

Posted in cancer, community, depression, grief/loss, health care, HealthLink on Air, mental health/emotional health, physical therapy/rehabilitation, psychology/psychiatry | Tagged , ,

Positive is not always a good thing

“The word ‘positive’ usually means good. We like positive attitudes, positive states of mind, and positive balance sheets. However, in medicine, positive is often bad,” says Steven Z. Pantilat, MD, director of the Palliative Care Leadership Center at the University of California, San Francisco, in his book, “Life After the Diagnosis: Expert Advice on Living Well With Serious Illness for Patients and Caregivers.”

Pantilat continues: “A positive lymph node means cancer is in a lymph node and has spread. Positive biopsy margins signify that not all the cancer was removed and some remains in the body. Positive blood cultures mean bacteria are growing in a patient’s blood, which is potentially life-threatening within hours if not promptly treated. When a skin test for tuberculosis is positive, it means you’ve been exposed to tuberculosis and could harbor that dreaded disease. A positive CT scan could mean that you have a blood clot in your lung.

“Though we think of negative things as being bad, in these examples, negative would be great.”

Pantilat says he encourages medical students to communicate more clearly with patients by saying, “We found cancer in the lymph node, which means that the cancer has spread beyond the lung,” or “The biopsy showed that we didn’t get all the cancer; some is left behind and will require another operation.”

His advice for patients: If your doctor says that something is positive, get clarification. Ask, “Is it a good positive or bad positive?” and then have your doctor explain.

This article appears in the spring 2017 issue of Cancer Care magazine.

 

Posted in cancer

Up close: Offering a better biopsy

Upstate offers a 3-D guided breast biopsy option for patients whose mammograms reveal something suspicious that requires additional investigation. Using this system, radiologists can easily locate and target regions of interest for what is known as an upright core breast biopsy. The patient, seated in a comfortable chair, is positioned the same way as for a mammogram. After images pinpoint the exact location for the biopsy, a small incision is made, and a thin needle is inserted to retrieve tissue samples for analysis. Learn more by contacting Women’s Imaging at 315-464-2582, or the Wellspring Breast Care Center at 315-492-5007. To see a video showing how this type of biopsy works, click here.

This article appears in the spring 2017 issue of Cancer Care magazine.

 

 

Posted in cancer, medical imaging/radiology, pathology, technology, women's health/gynecology

Settling in: Newcomers to CNY found jobs, a home – and a doctor

Andrea Scheibel, foreground, and her oncologist, Diana Gilligan, MD, PhD. (PHOTO BY SUSAN KAHN)

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.

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

  1. 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.
  2. Ask your original doctor if he or she can recommend anyone.
  3. 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.
  4. Look for what you can find about the doctors’ backgrounds and areas of expertise.
  5. 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.
  6. Find out where their offices are, and whether they are taking new patients. Also check on insurance coverage.
  7. 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.
  8. 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.
  9. Once you’ve narrowed your options, share their professional biographies with your original doctor. He or she may be able to steer you.
  10. 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.

Posted in cancer, health care, pathology, patient story, research, technology | Tagged , , , , , , , ,

Adventurer sees what’s possible

Tim Conners of Fulton, third from left, with his companions at the peak of Tanzania’s Mount Kilimanjaro, Africa’s highest peak, as shown on this photo from his Facebook page. The team reached the summit in early June.

Tim Conners of Fulton is a blind adventurer who set out to — and did — summit Mount Kilimanjaro, Africa’s highest peak. He set out in late May, after graduating from Ithaca College, and reached the summit in early June. (He chronicled his trek on his Web site, mountimpossible.com, and on his Facebook page.)

Conners was a freshman in high school when he was diagnosed with T-cell acute lymphoblastic leukemia. He lost his vision when the cancer spread to his optic nerve. Chemotherapy helped shrink a tumor in his chest that was the size of a football. He also  required a bone marrow transplant and dialysis for kidney failure. He was hospitalized for more than 100 days, much of that time at Upstate Golisano Children’s Hospital, which, he says, “is the reason I am still alive today.”

Conners, as shown on the cover of his book, “It’s Impossible Until You Do It: Succeeding in the Face of Adversity.” (PHOTOS COURTESY OF TIM CONNERS)

He was grateful to receive care so close to home. “Not having to travel far to receive my treatment, my parents were still able to keep my family together, somehow manage their professional lives, and I was able to be close enough to receive the community support that played such a critical role in my ability to overcome cancer,” he told Oswego County Today.

One of Conner’s inspirations is American athlete Erik Weihenmayer, the only blind person to reach the summit of Mount Everest. The Make-a-Wish Foundation helped Conners meet Weihenmayer.

Conners has a goal of giving back to the children’s hospital and other organizations that helped him. He is raising money to donate through speaking engagements and sales of his book, “It’s Impossible Until You Do It: Succeeding in the Face of Adversity.”

This article appears in the spring 2017 issue of Cancer Care magazine.

Posted in cancer, disability, eye/vision/ophthalmology, fundraising, health care, patient story, Upstate Golisano Children's Hospital/pediatrics | Tagged , , , ,

From Elbridge to Ethiopia, with an Upstate nurse

BY AMBER SMITH

Brooke Fraser, a 20-year veteran nurse from Elbridge who works in the Upstate Golisano Children’s Hospital, saves her days off for mission trips to countries in need.

Last summer she travelled to Ethiopia and spent two weeks helping establish a cancer center for children in the city of Jimma, 220 miles southwest of the capital of Addis Ababa.

She has also volunteered in El Salvador, accompanied each trip by one of her three sons.

Brooke Fraser is shown in her overseas medical work (above and top photo).

Fraser began her mission work four years ago when she decided she wanted to step beyond her comfort zone and to understand and appreciate another culture.

She was inspired by the Mahatma Gandhi quote: “The best way to find yourself is to lose yourself in the service of others.”
Seeing poverty is difficult, she says, “because you can only make a small difference. You can’t fix everything. You can’t give everybody all the clean water and food and money that you wish you could give them. You can’t eradicate disease.

“But I’m thankful for the small part that I can do.”

This article appears in the spring 2017 issue of Cancer Care magazine. Hear a radio/podcast interview  with Fraser  about her overseas nursing work.

Posted in community, health care, HealthLink on Air, international health care, nursing, Upstate Golisano Children's Hospital/pediatrics, volunteers | Tagged

Treatment you inhale: pure oxygen

Marvin Heyboer, MD, at the hyperbaric medicine center. (PHOTO BY ROBERT MESCAVAGE)

BY AMBER SMITH

One of the unfortunate side effects of radiation therapy for head and neck cancers can be damage to the soft tissue and bones of the jaw.

No matter how precisely the radiation is directed, small blood vessels and collagen may be damaged. Bone death – called osteoradionecrosis – is less common. For treatment, doctors may recommend surgery plus multiple trips into a pressurized chamber with 100 percent oxygen.

It’s the same chamber used to treat decompression sickness, carbon monoxide poisoning, arterial gas embolisms and more. The principle is that our lungs can gather more oxygen than normal in a higher-pressure environment. Then our blood cells, rich with oxygen, travel the bloodstream stimulating the release of growth factors and stem cells, which promote healing and help fight infection.

Inside the chamber, patients nap, read or watch a television screen. They breathe pure oxygen. Their bodies begin healing.

“In conjunction with surgery, hyper-oxygenation helps to restore those blood vessels,” says Marvin Heyboer, MD, an associate professor of emergency medicine who serves as medical director of hyperbaric medicine at Upstate.

He explains that someone with a delayed radiation injury to the jaw may have 30 one- to two-hour sessions in the hyperbaric chamber before undergoing surgery to have any dead bone removed. Then he or she will typically have 10 more hyperbaric sessions.

Treatment plans are individualized. So, someone being treated for radiation injury related to cervical cancer or prostate cancer may have more hyperbaric sessions and no surgery. Someone who is treated to help prevent osteoradionecrosis prior to oral surgery may undergo fewer sessions.

Hyperbaric oxygen treatment is painless, but it has risks. The middle ear can be damaged due to increased pressure, and a person’s eyeballs can temporarily become more oval in shape, consequently turning vision nearsighted. More serious risks, including seizures related to oxygen toxicity, are rare.

Heyboer says patients being treated for osteoradionecrosis report success rates greater than 90 percent. About half of those treated for radiation-injured inflamed bladder or bowel see complete resolution of symptoms, and an additional 30 percent see significant improvement.

He has a study underway at Upstate, looking at the benefit of hyperbaric oxygen on certain radiation effects to the head and neck. To learn about participating, reach assistant Christine Hall at 315-464-7608. For more about hyperbaric medicine at Upstate, call 315-464-4910.

3 words to know

— Angiogenesis – when new blood vessels form.

— Hyperbaric – increased atmospheric pressure.

— Osteoradionecrosis – bone death caused by radiation.

This article appears in the spring 2017 issue of Cancer Care magazine.

Posted in cancer, ear, nose and throat/otolaryngology, health care, medical imaging/radiology, technology | Tagged , , ,

Patients receive medical care – and education

A caregiver, such as nurse practitioner Travis DeBois, above, can be a vital source of information to a patient seeking to learn more about his or her disease. (PHOTO BY ROBERT MESCAVAGE)

When we come to a medical appointment at the Upstate Cancer Center, we’re ready to have blood drawn, to have our lungs listened to, to report on our symptoms. We are focused on our health.

What we may not realize is that the appointment is also a learning opportunity.

“A great deal of what we do as advanced-practice clinicians is educate our patients,” says nurse practitioner Travis DeBois, who cares for patients with cancer and blood disorders.

It’s not unusual for patients to become experts in their particular disease. But we don’t have to do all of our research online, or in a library. Our nurse practitioner, for instance, can be a face-to-face resource.

Instead of telling him or her about the fatigue we feel, we may want to ask about its underlying cause. We may have questions about a medication we’ve been prescribed. Or we may need help understanding how different blood cells behave.

DeBois says he and his colleagues are well equipped and eager to field questions. If they don’t know the answer, they can help find it.

This article appears in the spring 2017 issue of Cancer Care magazine.

Posted in cancer, health care, illness