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.

 

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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.

 

 

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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.

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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.”

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

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 | Leave a comment

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 , , , | Leave a comment

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

Radiation can be as effective as surgery for some tumor removals

Not long ago, people who were not healthy enough to withstand surgery had few options if a tumor was discovered in their lung or brain.

Michael Mix, MD.

Today, radiation therapy has evolved into an alternative to traditional surgery that can help these people. In the brain, it’s called stereotactic radiosurgery, even though no scalpel is involved. Outside the brain, it’s commonly known as stereotactic body radiotherapy. Computerized tomography (CT), magnetic resonance (MRI) and other advanced imaging tools are paired with a radiation machine to deliver high-energy X-rays to create a precision treatment.

Stereotactic radiation can be as effective as traditional surgery in select cases, says Michael Mix, MD, an assistant professor of radiation oncology at Upstate. “This allows us to better focus our radiation treatments and better visualize surrounding structures to make the treatments not only more effective, but safer,” he says.

It’s as much an alternative to traditional surgery as to traditional radiation therapy.

Traditional radiation therapy – which remains the appropriate treatment for many patients – involves multiple treatments per week over several weeks. Stereotactic radiation is generally given in fewer than five treatments, with tighter margins, allowing for less irradiation of normal, healthy cells.

How is stereotactic radiation different?

“If you can picture a number of radiation beams coming at a tumor from many different angles, only the area where all those beams cross would receive the high radiation dose,” Mix explains. Patients typically undergo fewer treatments than they would with traditional radiation therapy. In addition, real-time imaging of the target allows for a better ability to treat as little normal tissue as possible.

Mix is impressed with the precision of stereotactic radiosurgery. “We have the ability to actually track a tumor’s motion,” he says. “So, for example, if a lung tumor moves with the patient’s breathing, we’re able to watch that and account for that.”

Surgery and conventional radiation therapy remain excellent options for many patients. But a growing number are offered stereotactic radiation. Mix says doctors continue to determine new types of tumors – as well as other noncancerous problems – that can be treated effectively with stereotactic radiosurgery and stereotactic body radiotherapy.

This article appears in the spring 2017 issue of Cancer Care magazine. Hear a radio/podcast interview with Mix about about radiation therapy for cancer.

 

 

 

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9 things to know about brain and spinal cord tumors in children

BY AMBER SMITH

Cancers of the brain and spinal cord have surpassed leukemia as the largest cause of cancer death in children. It’s not because there are more brain and spinal cord tumors. Rather, progress has been made in treating cancers of the bone marrow and blood cells, so more children are surviving leukemia.

The leading cause of cancer death in children is cancers of the brain and spinal cord.

Of all cancers, about 1 percent occurs in children, says Melanie Comito, MD, Upstate’s chief of pediatric hematology and oncology. The average age at diagnosis is 6 or 7 years.

“Every child you save or cure of childhood cancer lives another 70-plus years,” she explains. “So when you look at years of life lost, more years of life are lost to childhood cancers, compared to adult cancers other than breast cancer.”

Comito says each day in America, 46 children are diagnosed with cancer, and seven children die from cancer. Brain and spinal cord tumors account for about one out of four childhood cancers. Each year, more than 4,000 central nervous system tumors are diagnosed in children and teens.

Some key things to know about brain and spinal cord tumors:

* Symptoms vary greatly, based on the age of the child and the size and location of the tumor. Headaches that get progressively worse and morning vomiting episodes may be clues.

Melanie Comito, MD, explains that more years of life are lost to cancers in children than to most cancers in adults.

* While adults tend to have brain tumors in the upper part of the brain, many childhood tumors appear more toward the center of the brain or in the back near the cerebellum, the part of the brain that regulates muscular activity.

* Among the more than 50 types of childhood brain tumors, half are astrocytomas. These tumors arise from star-shaped brain cells called astrocytes that make up the supportive tissue of the brain.

* Non-cancerous or benign tumors can be just as life-threatening as malignant tumors because of where they exist in the brain. “They’re often in areas where you can’t just cut them out without causing damage,” Comito explains. She adds that tumors arising in the spinal cord are typically more amenable to surgery.

* Most tumors can be diagnosed through an imaging scan, but a biopsy is usually required to tell if a tumor is slow- or fast-growing.

* Depending on a tumor’s location, treatment may include removal by surgery. Because of long-term side effects, radiation therapy is not likely to be recommended. Instead, Comito says, many childhood tumors today are treated with chemotherapy. “My treatment goal is to help the child grow up and have the best neurologic outcome that they can have.”

* The cause of most childhood brain and spinal cord tumors is unknown.

* A patient’s prognosis depends on the type of tumor, its location and grade, speed of growth and treatment options. The child’s age and the extend to which the tumor has affected his or her ability to function is also a factor.

* Lifelong follow-up care is recommended for childhood brain tumor survivors.

Follow-up care

Continuing medical care is recommended for childhood cancer survivors, who may develop complications known as late effects of treatment. These could include:

* physical disabilities such as muscle weakness or diminished coordination;

* learning disabilities including problems with memory, attention, comprehension and information processing;

* behavioral changes or emotional issues;

* hearing or vision problems;

* seizures or other neurological issues;

* hormonal problems including slowed growth, early or late puberty or infertility;

* damage to internal organs or other body systems; and

* the possibility of tumor recurrence or the development of a secondary cancer in another part of the body.

Source: American Brain Tumor Association

This article appears in the spring 2017 issue of Cancer Care magazine. Click here for a radio/podcast interview with Comito about childhood brain and spine tumors.

Posted in cancer, health care, HealthLink on Air, Upstate Golisano Children's Hospital/pediatrics | Tagged , , , ,

Screening recommendations change for prostate cancer — here’s why

Upstate Cancer Center interim director Jeffrey Bogart, MD, left, and Ronald Chen, MD, a cancer specialist and researcher from the University of North Carolina at Chapel Hill. Chen spoke at Upstate about screening guidelines for prostate cancer and why they are shifting. (PHOTO BY JIM HOWE)

BY JIM HOWE

Whether to screen a man for prostate cancer should involve a discussion with his doctor and, possibly, a simple blood test, a federal advisory panel says.

Draft guidelines released this spring from the influential U.S. Preventive Services Task Force no longer reject the prostate-specific antigen blood test as an unreliable screening tool for men ages 55 to 69.

A leading researcher in the field, Ronald Chen, MD, was recently invited to lecture in Syracuse by Upstate Cancer Center interim director Jeffrey Bogart, MD. Chen explained some of the reasons behind this change.

The blood test for PSA has been in use for more than 20 years. It is a controversial screening tool because it can miss or falsely indicate cancer of the prostate gland, which could lead to overdiagnosis and unnecessary treatments with painful or life-changing side effects, such as sexual dysfunction, urine leakage and bowel problems.

A major reason for the controversy was the conflicting results of European and American studies that started in the 1990s, each designed to compare men who got PSA tests with those who did not.

Results published in 2009 showed that men enrolled in the European trial, who had PSA tests every four years, had more cancers diagnosed – but also better survival rates. The men enrolled in the American trial who had annual PSA tests along with digital rectal exams did not see increased survival rates.

The studies’ results were one reason the task force recommended, in 2012, against routine PSA screening of otherwise healthy men.

But Chen and others re-examined those studies and their regularly updated results and see a different story emerging.

“In my mind, these are actually not opposite results,” said Chen, an associate professor in the radiation oncology department at the University of North Carolina at Chapel Hill and an associate director of UNC’s Lineberger Comprehensive Cancer Center.

A big reason the studies appear to contradict each other is that about three quarters of the American test subjects who were not supposed to get PSA screening did so anyway, and half had also had a PSA test before joining the trial, Chen said. This meant the American study wasn’t really comparing men who got PSA tests to men who didn’t.

Looking at the most recent results from both studies, Chen said it’s clear “there is absolutely a benefit to early screening, and the benefit continues to increase over time.”

The benefits show up most dramatically after 10 years, when those screened for PSA showed a better survival rate than those not screened, Chen said. Since prostate cancer tends to be slow growing, it can take that long for results to show up.

“What this tells us is we don’t have to screen men who have less than 10 years to live, since that’s not likely to benefit, but for men who are healthy and have a long life expectancy, screening can really save lives,” he said.

What is unclear is whether annual or less frequent screening is necessary. That should be studied further, he said.

Chen called it “unfortunate” that these two trials’ differing results led to recommendations against PSA screening, which led to a huge drop in screening in the U.S., because the American trials were taken at face value and not examined more deeply.

“Over time we have realized in prostate cancer not patient needs to be treated,” he said. So while aggressive cancer must be treated, slow-growing prostate cancer might be better left alone but carefully watched – what is termed “active surveillance” — and only treated if it starts to progress.

About prostate cancer

Other than skin cancer, prostate cancer is the most common cancer in American men. The American Cancer Society estimates about 161,360 new cases of prostate cancer will be diagnosed in the United States in 2017.

Risk: About one man in seven will be diagnosed with prostate cancer during his lifetime.

The men it strikes: Prostate cancer develops mainly in older men. About six cases in 10 are diagnosed in men aged 65 or older, and it is rare before age 40. The average age at the time of diagnosis is about 66.

Death rates: Prostate cancer is the third leading cause of cancer death in American men, behind lung cancer and colorectal cancer. About one man in 39 (or 3 percent) will die of prostate cancer, which means only about one of every six diagnosed prostate cancers will be fatal.

Most men diagnosed with prostate cancer do not die from it.

Sources: American Cancer Society, Harvard Medical School

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

 

 

 

 

 

 

 

 

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