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‘Close to criminal’

A Fred Hutch researcher speaks out on the human cost of the ‘unfettered, unbridled greed’ within our health care system

Feb. 11, 2016 | By Dr. Gary Lyman, as told to Diane Mapes

Dr. Gary Lyman

Dr. Gary Lyman is co-director of the Hutchinson Institute for Cancer Outcomes Research, which is working to reduce the economic and human burden of cancer for patients, families and society. A breast cancer oncologist, Lyman has had patients end treatment – and die – because of the devastatingly high cost of cancer care. "That tears at you," he said.

Photo by Robert Hood / Fred Hutch News Service

When I was 12, my father died of a cancer-like condition called aplastic anemia. That was certainly a major factor contributing to my decision at a very early age to pursue medicine and what got me interested in doing something to help patients with cancer.

I saw the agony that he went through and my mother went through. More recently, though, I’ve seen patients and their families experience a different kind of agony – that of heartbreaking financial hardship due to skyrocketing health care costs.

I grew up in a blue-collar household. My father worked for the New York Central Railroad, my mother worked as a cashier at a retail store and I had to work from an early age. The only reason I could go to college, much less medical school, was because New York State had a scholarship program that I was able to enter. We were poor, yes, but we didn’t feel like we were and had what we needed to live.

Sadly, that’s not the case for many patients today.

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More than 'Angelina Jolie Effect': BRCA tests spike among breast cancer patients

Search for gene mutations began rising before actress revealed surgeries; better insurance coverage, access cited by experts

Feb. 11, 2016 | By Bill Briggs / Fred Hutch News Service

Brooke Bess and family

Brooke Bess, who tested positive for a BRCA1 mutation after her breast cancer diagnosis, with husband, Brendan, and daughters, Addison, 8, and Camille, 5.

Courtesy of Brooke Bess

The science teacher didn’t need to hear about Angelina Jolie Pitt’s famous choice before making her own move. She didn’t even need much time to think it over. She only needed, well, science.

Two months after her breast cancer diagnosis, Brooke Bess underwent genetic testing. It showed the high school instructor is positive for a BRCA1 mutation, boosting her odds for breast and ovarian cancers — and influencing her to undergo a bilateral mastectomy and hysterectomy in 2015.

“I can handle biology. I can handle knowing why this happened. I can’t handle just having bad luck or constantly wondering if it was because I microwaved plastic dishes or drank bad water,” said Bess, 36, who lives in central Florida.

“As a cancer survivor, I cringe when I hear people refer to [BRCA] as the ‘Angelina Jolie gene’ because a lot of people don't realize that everyone has the gene. Men, women, children. It's the actual mutation that causes the problem,” she added. “[But] as a science teacher, I appreciated having a recognizable face to refer to when discussing mutations and their implications on personal health decisions.”

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Researching your cancer online: dive in or steer clear?

Some patients feel control over disease by scouring Web; others stoke hope by staying off Internet

Feb. 10, 2016 | By Bill Briggs / Fred Hutch News Service

For some cancer patients, an excess of information about their condition may add to their anxiety; for others, scouring the Internet is reassuring and provides a sense of control, according to Dr. Jesse Fann, director of psychiatry and psychology services at Seattle Cancer Care Alliance.

Illustration by Kimberly Carney / Fred Hutch News Service

Hard truths or happy answers live at the fingertips of most cancer patients and survivors – typical treatment miseries, prognosis odds, recurrence risks.

Life or death, by the numbers.

For people with common cancers, such stats almost beckon from the Internet. Medical websites, posted journals, blogs and forums offer a tantalizing (maybe terrifying) treasure map of sorts – virtual pathways to help unearth possible outcomes for your specific disease.

To dig or not to dig: that is the question. And if you opt to shovel online, where do you hunt? How deep do you go?

“For some people, an excess of information may be counter-productive and may add to their anxiety,” said Dr. Jesse Fann, director of psychiatry and psychology services at Seattle Cancer Care Alliance, the treatment arm of Fred Hutchinson Cancer Research Center.

“For others, a wealth of information is reassuring and provides a sense of control over their situation. The important thing is that the person has enough accurate information to fully participate in treatment decisions and their overall medical care,” Fann said. “Each patient must find the right balance.”

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An unexpected diagnosis

What it’s like to be a man with a 'woman’s cancer'

Feb. 9, 2016 | By Dr. Sabrina Richards / Fred Hutch News Service

Male breast cancer survivor Dan Roark

Male breast cancer survivor Dan Roark of Bonney Lake, Wash., never suspected that he would be diagnosed with the same type of cancer as his mother. The disease hits about 2,600 men in the U.S. every year.

Photo by Robert Hood / Fred Hutch News Service

Join us Thursday at 11 a.m. PT for a tweetchat on male breast cancer. To participate, use the hashtag #ChatFredHutch.

Editor’s note: This is the second in a two-part series on male breast cancer. Read part one here.

Steve Del Gardo was at the pool when he noticed the stares again. This time it was a group of 12-year-old boys gawking. They weren’t the only ones who had stared that summer, and Del Gardo was getting a bit tired of the attention.

“So when one of them said, ‘Mister, what happened to your nipples?’ I leaned over and asked him, ‘Do you know that game, nipple twister?’” Del Gardo recalled. The boy nodded. “I said, ‘I played that game, and mine fell off.’ The look of horror on his face was priceless.”

The boy’s mother didn’t find Del Gardo’s tall tale particularly precious and stomped over to tell him so — but stopped short when she saw the mastectomy scars carved into both sides of his chest. It wasn’t childhood hijinks that had left him nipple-less. Del Gardo is one of a rare group: men diagnosed with breast cancer.

Cancer feels like a betrayal, a mutiny of the body. Facing an unexpected type of cancer, a cancer they didn’t even consider to be physically possible, leaves some patients feeling doubly shocked and betrayed. Men diagnosed with a disease most people associate exclusively with women can feel confused and isolated.

Del Gardo, who has made male breast cancer outreach and education his mission, estimates that about 98 percent of people who approach him are women, on behalf of men in their lives with breast cancer.

“Men are too afraid to come forward,” he said.

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How one man with breast cancer is helping researchers learn

Much of what’s known about breast cancer is based on studies of women; after Dr. Oliver Bogler was diagnosed, he decided to help change that

Feb. 8, 2016 | By Dr. Sabrina Richards / Fred Hutch News Service

Dr. Oliver Bogler

About 2,600 men, such as Dr. Oliver Bogler, are diagnosed each year with breast cancer, according to the American Cancer Society. But much of what is known about treatments, such as the chemotherapy, radiation and mastectomy he underwent, are based on trials of women, not men.

Photo courtesy of David Jay Photography

Join us Thursday at 11 a.m. PT for a tweetchat on male breast cancer. To participate, use the hashtag #ChatFredHutch.

Editor’s note: This is the first in a two-part series on male breast cancer. Read part two here.

Based on the statistics, Dr. Oliver Bogler couldn’t imagine that his suspicions were true. He’d found a lump in his chest but knew that male breast cancer is “so rare, it’s statistically quite improbable,” he said.

Bogler, a scientist who spent much of his career researching brain tumors, depends on numbers and data. So even as his suspicion of breast cancer began to gnaw, he wondered if it was all in his head.

“I prevaricated several months [after finding the lump],” he said. He’d supported his wife, Dr. Irene Newsham, when she was diagnosed with breast cancer just five years earlier but yet, “I couldn’t think of how to broach the subject with [her].”

In the U.S., “men with breast cancer make up ½ to 1 percent of breast cancer patients,” said Dr. Julie Gralow, a breast cancer researcher at Fred Hutchinson Cancer Research Center and the University of Washington who also treats breast cancer patients at Seattle Cancer Care Alliance. “But even so, several thousand men each year are affected.”

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Screening tool aims to better identify distressed patients

Caring for patients doesn’t just mean physically; a new tool helps doctors find, and support, those struggling with depression and other forms of psychosocial distress

Feb. 5, 2016 | By Susan Keown / Fred Hutch News Service

Moreen Dudley and Petr Horak in their SCCA office

Seattle Cancer Care Alliance's Moreen Dudley, a clinical operations director, and Petr Horak, a program administrator for the Palliative Care Service, collaborated with oncologist Dr. Elizabeth Loggers to implement psychosocial distress screening for patients.

Photo by Robert Hood / Fred Hutch News Service

Editor’s note: This is the second in a two-part series on cancer and depression. Read part one here.

In a typical half-hour appointment with one of her sarcoma patients, Dr. Elizabeth Loggers has enough time to talk through a patient’s course of treatment and make sure she answers all their questions — and not much else.

But these matters are just one portion of the host of concerns that cancer unleashes on patients and their families: from depression and anxiety to loss of physical function from lymphedema to fears for their children.

It’s easy for doctors to run out of time, or just not ask the right questions to uncover these concerns, Loggers said. And this means that patients too often don’t receive — or even know about — supportive services that can help, such as psychological counseling, physical therapy or nutrition assistance.

To ensure that patients and their families are connected with supportive services that can improve their overall wellbeing, Seattle Cancer Care Alliance — Fred Hutchinson Cancer Research Center’s patient-care arm — is implementing systematic screening for psychological and social concerns, with referrals to supportive services, for all new patients.

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