When Ryan Kiggins scheduled his first oncology appointment, he’d already been to a number of different doctors. It had taken months for general practitioners to connect the dots from Kiggins’ on-and-off suite of symptoms – crippling back pain, high fevers and a swollen-shut eye – to his ultimate diagnosis of a rare and aggressive type of blood cancer known as acute undifferentiated leukemia.
As his visit with the oncologist neared, he was eager to get some clear guidance and form a treatment plan. But when he got there, Kiggins, then 30, met a doctor he felt was cold and impersonal. The doctor even told Kiggins to donate his body to science when he died so researchers could learn more about his disease.
“He just basically said, ‘Quit work and go do all the things on your bucket list,’” said Kiggins, a father of two. “I thought, ‘There’s no scenario where this person is going to save my life.’ … He was curious to know if I died, what happened to me … but I didn’t have the sense that he was going to do any extra study to try figure out what to do to help me survive.”
Kiggins and his wife, Jennifer, came out of the doctor’s office knowing they needed to seek another opinion – and hopefully find a doctor who would not only partner with them for medical care but feel like a better personality fit.
Yet some patients may feel reluctant to turn to another doctor, sometimes for fear of offending their original doctor, someone they need in their corner. Others may not know how to go about getting another opinion or feel overwhelmed by the prospect.
Dr. Fred Appelbaum said he wants patients to realize that the vast majority of oncologists view second opinions as important and often necessary.
“Some people are reluctant to seek a second opinion because they’re afraid they will offend their doctor and somehow it will interfere with their subsequent doctor-patient relationship,” said Appelbaum, Fred Hutchinson Cancer Research Center’s deputy director and an oncologist specializing in leukemia and other blood cancers at Fred Hutch’s treatment arm, Seattle Cancer Care Alliance. “I would argue that if you have a doctor who would respond that way, you probably should look for a new doctor.”
Fred Hutch clinical researcher and breast cancer oncologist Dr. V.K. Gadi said some patients, especially older ones, may be hesitant to ask for a second opinion because they feel they’re cheating on their doctors.
“In truth it’s not cheating,” he said. “It’s your life and it’s always healthy to get a balanced perspective from multiple individuals.”
Dr. Julie Gralow, a clinical researcher at Fred Hutch and director of Breast Medical Oncology at SCCA, encourages patients to seek another opinion. People facing a cancer diagnosis should feel at ease with their caregivers and treatment decisions, she said. And sometimes that means getting a second opinion or even changing doctors entirely.
“You need to get all the information you need to make a decision and to feel really comfortable with your healthcare team and with the choice so you’re not questioning that,” Gralow said. “It’s not like you’ve stubbed your toe. This is really serious and so you deserve the opportunity to get a couple of opinions.”
Even when the personality clash isn’t as dramatic as Kiggins experienced, finding someone you get along with is important, Gralow said, adding, “We know none of us are a perfect fit with every patient.”
After their disastrous visit, Kiggins and his wife reached out to friends and family members in hopes of a recommendation. One name kept coming up: SCCA’s Dr. Stephen Petersdorf.
Kiggins sent Petersdorf an email describing his situation, and though the doctor was traveling on business, he called Kiggins the same day to reassure him. At the appointment that followed shortly after, Kiggins felt he’d finally found the right person to handle his care.
“He looked me in the eyes and there was a kindness to the way he spoke to us,” Kiggins said, remembering Petersdorf, who died of cancer in June.
While the doctor didn’t have anything different to tell him about survival rates, “it just felt comforting to know that we had finally met with somebody who could give me as good a chance as anybody in the world – and that he really wanted to. That part of it was probably just as important,” Kiggins said.
As bad as his first appointment was, Kiggins thinks it set him on the path to the treatment that sent him into what is now a nearly 7-year remission.
Even when a second opinion won’t make the difference between life and death, patients should still feel empowered and encouraged to seek them out, said Appelbaum.
“If you’re going to buy a car, many people at least test drive more than one car. If you’re going to buy a TV, you might look at more than one model,” he said. “Certainly those decisions are much more trivial than the question about your care.”
Different doctors take different approaches, Appelbaum said. Some of those differences could change the course of a patient’s life, but sometimes they just change the patient’s outlook. And that’s important too.
Tori Fairweather, a 24-year old Hodgkin’s lymphoma survivor of Puyallup, Wash., was initially worried about asking her oncologist about a second opinion for fear he’d feel “dissed.”
But when she broached the topic with him, he was actually supportive of the idea. “There was no pressure to make a decision. He wanted me to go with what was most comfortable for me,” she said. “I just thought that was wonderful, putting ego aside to treat me and to make sure I had the best care.”
Fairweather saw SCCA’s Dr. Stephen Smith for her second opinion and ended up transferring her care to him. She liked that Smith was a specialist in her type of cancer.
“It was validating because I knew that they were specifically working to cure lymphoma,” Fairweather said. “I just totally felt like I was No. 1. That was the best feeling, knowing that I was in good care.”
Doctors at SCCA end up giving a lot of second opinions, Gralow said, because they are specialists in their fields. Sometimes, other doctors are the ones asking her and her colleagues for their opinions.
“We have the luxury of being real specialists because we are academics,” Gralow said. “A lot of times, especially if they’re a private practice oncologist or a general surgeon, [other doctors] actually like to know what somebody who has the luxury of spending all their time on one disease would think about this.”
Dedicated cancer centers like SCCA also offer many clinical trial options not available at smaller or private practices, Gralow said. For some patients those trials might end up being their best treatment option.
Some patients end up transferring their care, as Fairweather and Kiggins did, but others go back to their original provider with more confidence, Gralow said. And some patients end up somewhere in between. Doctors can often tailor aspects of the treatment plan to suit a patient’s needs, especially for those who don’t live near a dedicated cancer center. Patients unable to travel or find temporary housing might touch base occasionally with a specialist like Gralow but receive the majority of their care from their hometown doctor.
Although cancer patients of all stripes can potentially benefit from a second opinion, experts say there’s one group who should especially consider seeking them out – those with uncommon cancers.
Dr. Seth Pollack is a clinical researcher at Fred Hutch and treats patients at SCCA with sarcomas, a relatively rare group of cancers that arise from connective tissues such as bone, fat or muscle. Sarcomas make up only 1 percent of all cancer cases in the U.S., but there are 70 diverse types.
Patients with a sarcoma of the bone, for example, may need a vastly different type of treatment than a patient with a muscle sarcoma, Pollack said. And this is where treatment, or at least guidance, from a sarcoma expert may be key.
“One thing that can be really frustrating for patients who don’t see a sarcoma specialist is that their doctor may not have taken care of a patient with their exact kind of sarcoma before,” Pollack said. “For those patients, I think it can be really helpful to see a doctor who’s very familiar with their cancer type and has treated a lot of different patients with that cancer, enough to have seen some things that work and don’t work.”
Sometimes oncologists’ specialization pays off in tangible ways, as Gadi, the breast cancer oncologist, recounts. Two years ago, he met a woman with breast cancer at an event and knew at first glance that something was off.
“It’s one of those things, you look at somebody and realize she’s not getting optimum care,” Gadi said. “I just had a gut feeling. The way somebody moves, the way their hands and face look, their energy levels – good physicians start paying attention to those things.”
It turned out he was right. By coincidence, the woman came to Gadi’s clinic at SCCA for a second opinion just a few weeks later, looking for what she thought was a last-ditch effort. Gadi and his team ended up completely changing her care and she’s now doing very well. The regimen that Gadi prescribed was based on the most recent data in the field.
“There was a lot more available to her that her last physician wasn’t aware of … When you’re a specialist, you have your ear to the ground of what’s coming out,” Gadi said. “We have the liberty and the opportunity to be very focused.”
Solid tumors, such as sarcomas and those of the breast, are the focus of Solid Tumor Translational Research, a network comprised of Fred Hutchinson Cancer Research Center, UW Medicine and Seattle Cancer Care Alliance. STTR is bridging laboratory sciences and patient care to provide the most precise treatment options for patients with solid tumor cancers.
Rachel Tompa is a former staff writer at Fred Hutchinson Cancer Research Center. She has a Ph.D. in molecular biology from the University of California, San Francisco and a certificate in science writing from the University of California, Santa Cruz. Follow her on Twitter @Rachel_Tompa.