Posted on June 16, 2014 at 7:40 PM
Dr. Pamela Munster‘s colleagues viewed the mammogram results and then played out a scene she knows well: the furrowed brow, the intense look of concern, followed by the composed, reassuring face for the patient’s benefit.
They weren’t looking at her patient’s mammogram. These were Munster’s results. They were acting the same way she did when she was about to deliver bad news to her cancer patients.
“I’ve done this all,” said Munster, a breast cancer specialist who now runs UCSF’s early-phase clinical trials program. “They were looking at it intently, and it started to sink in that it might be bad.”
About 14.5 million people living in the United States have been told, in so many words, “You have cancer.” Some of those people are oncologists and other specialists in cancer.
So when they learn that they have the disease they specialize in, the reaction can be transformative, doctors agree. It can change the way they look at disease, affect the way they interact with patients and raise the credibility they have with them.
“There is a certain amount of credibility in having gone through the experience,” said Dr. Sandra Horning, Genentech’s chief medical officer and past president of the American Society of Clinical Oncology, who was diagnosed with breast cancer at age 45.
Horning, a top lymphoma specialist at Stanford before moving to Genentech, had a strong history of cancer in her family. She lost her father to cancer when she was in college, and her mother survived two types of cancer.
Those experiences brought greater understanding to her patients’ experiences, Horning said. But waiting for her own results and waking in the middle of the night with anxiety brought her an even deeper level of empathy.
“It’s a different way of being able to connect with the people you’re taking care of,” she said.
Munster, who was diagnosed at age 48 in 2012, recognizes that she didn’t have the typical experience that most patients have immediately after getting the news. There wasn’t the confusion over what to do next, and she didn’t have to figure out which doctor to see. She wasn’t confronted with the frustration many patients have of trying to schedule an appointment or of having to wait for scan results.
Everything happened quickly. Munster was able to have a biopsy the same day, in a two-hour window before she had 14 patients to see. The results showed an early form of breast cancer that was spread throughout much of one breast.
Patients, she said, often ask her what she would do if she were in their situation. “You never really say what you’d do, but I always knew,” she said. “I just never thought I’d actually have to do what I thought I would do.”
A decisive, practical person with little tolerance or time for a long treatment regimen, Munster opted for a double mastectomy, driven both by cosmetic reasons as well as the fact that atypical cells were also found in the other breast.
After the surgery, her intuition told her to get genetic testing, much like the sense that reminded her earlier that she immediately needed to have a long-delayed mammogram done.
Munster, a native of Switzerland, did not have a strong family history of cancer, but she tested positive for a mutation in the BRCA gene, which meant she was born with about an 85 percent chance of having breast cancer in her lifetime and a 40 percent likelihood of developing ovarian cancer. The mother of three children – two sons, now 12 and 14, and a 10-year-old daughter – opted to have her ovaries removed.
As a physician, Munster said the experience gave her insight into what her patients are going through, though she typically sees patients with more advanced, complicated cases.
She initially struggled with whether to keep her diagnosis a secret in the hospital, and then decided to follow her own advice and be open about it with colleagues.
But as for whether to tell her patients, she said she tends to share her story only when she believes it could help. “I don’t want the visit to be about me. But if I hear someone say something like, ‘You don’t understand how bad I feel,’ I can say, ‘Actually, I do,’ ” she said.
Message to teens
Dr. Kelly Cordoro, a pediatric dermatologist who has twice been diagnosed with melanoma, routinely uses her story as a cautionary tale for her young patients.
“When I was kid, we would get blistering sunburns summer after summer,” said Cordoro, 41, who is fair skinned and has lots of moles. “There was not this awareness that maybe you could get something down the road.”
She first noticed “something” which looked like a collision of two small moles on her leg, in 2004 when she was a resident at the University of Virginia. After a senior colleague dismissed it, she didn’t think about it until four years later, after she moved west to work at UCSF and was wearing shorts one day.
“In my heart of hearts, as a dermatologist, I just knew,” she said of the sinking feeling she had about that mole. “I knew it was changing. I knew I needed to have it checked.”
Cordoro, then 34, had a biopsy done by a colleague and quickly learned she had melanoma, the deadliest form of skin cancer. Fortunately, she also found out that it was still in the earlier growth phases and had not yet started heading deep into the skin, which meant it could be successfully removed with minor surgery.
She comforted herself with statistics, the knowledge that her chances of a cure were in the high 90th percentiles. But that didn’t prevent her from being human. “I woke up in the middle of night and sobbed for hours,” she said.
A second but separate early-stage diagnosis last year brought home for her that feeling of being a ticking time bomb. “The likelihood of my getting another melanoma is very high, and it’s not because of my behaviors now,” she said.
It has served her well in her profession. Cordoro, especially with teenagers, often has a hard time getting them to understand why applying sunscreen is important. “I show them my scars. I tell them my story. It lends credibility and authenticity,” she said.
Many doctors interviewed for this story agreed their cancer diagnosis brought down the walls to allow them to achieve a level of empathy and emotion with their patients that is uncommon – and not always encouraged in scientific fields.
UCSF’s Munster said doctors are often told to maintain some level of professional distance from their patients, but she said she found no conflict between treating her patients and caring for them as people.
“For me, it’s the same as saying, ‘Don’t love too much,’ ” Munster said. “I don’t think you can care too much.”
As a pathologist, Dr. Kimberly Allison typically sees patients’ cells, rather than the patients themselves.
So it’s not surprising that when she had a biopsy on her breast after noticing tissue changes in 2008, her first reaction was to be excited to see her own sample under the microscope. She assumed the sample would be benign, but when her colleagues came to her with the results, looking grim, she knew it was bad.
‘I was terrified’
Her tumor was large, and she was only 33 years old. Because of her expertise – she specialized in breast cancer pathology – she knew she was in for a rough ride.
“I knew I needed to be worried,” said Allison, who is now at Stanford but was working at the University of Washington in Seattle at the time. “I knew I was going to get aggressive treatment, but I was terrified about what that might be like. That fear was just the same as in any patient.”
Allison, who went through intensive chemotherapy, surgery and radiation, sought out other cancer patients because they could give her the kind of support her fellow doctors couldn’t. She wrote a book about her experience and tells her story to students so they realize that there’s a living, breathing person behind every specimen.
But Allison could do something that other patients can’t. She could look at her cancer cells under the microscope before they were wiped out by the treatments.
“Whenever I felt like I wanted to talk smack to it, I would look at it,” she said. “I’d tell it, ‘I never want to see you again.’ “