Second opinions may enhance your treatment plan or even change your course.
In 2019, after Jason Pike received a diagnosis of a rare sarcoma that had spread across his abdominal cavity, his doctors in San Diego told him it would be too risky to operate. Four rounds of chemotherapy didn’t make a dent in the tumor, and Pike’s doctors said they could only offer him palliative care.
So Pike sought a second opinion from an oncologist at the University of Southern California in Los Angeles who specializes in treating rare sarcomas and is known for performing delicate, complex surgeries. Pike found him by researching his particular type of tumor online and networking with other patients, some of whom he met in Facebook groups for sarcoma survivors. He ultimately switched his care, and in July 2019, Pike underwent an 18-hour surgery that involved removing his 20-pound tumor, one kidney, as well as portions of his pancreas, spleen, stomach, diaphragm, colon and surrounding muscle.
There were some complications, and Pike had to file appeals to his insurance company to have the treatment reimbursed, but his disease is now stable. He’s currently in a “holding pattern,” and he will soon meet with his team to determine his future treatment plan.
Pike’s message for other patients: Get a second opinion. “These are trained professionals, but they’re not always right,” says Pike, 48, an operations director for a medical devices distributor. “Do your research. Be your own advocate. It’s your life.”
Cancer experts have long preached the value of second opinions. And getting a second opinion is much easier now. Advances in telehealth and other virtual technologies — the adoption of which exploded during the COVID-19 pandemic — are allowing patients, physicians and pathologists to meet online and share medical records, pathology samples and other information to improve treatment plans.
A 2017 study by the Mayo Clinic found that 88% of patients who received second opinions ended up with a different or refined diagnosis. Experts from The University of Texas MD Anderson Cancer Center in Houston have previously noted that even in cases where the second opinion doesn’t change the treatment plan, patients come away from the process feeling reassured they’re on the right path.
The insights from second opinions can make a huge difference throughout the course of care, says Dr. Anees Chagpar, a professor in the department of surgery at the Yale School of Medicine in New Haven, Connecticut.
“Patients are often uneasy about how their doctor will feel about them getting a second opinion, but your doctor cares about you,” Chagpar says. “They should have no objection to getting a second pair of eyes on your case, and often doctors will collaborate with each other so they can provide the best care.”
In fact, your first step should be to ask your primary oncologist for a recommendation of where to go for a second opinion, suggests Dr. Efrat Dotan, associate professor of hematology and oncology at Fox Chase Cancer Center in Philadelphia. That’s because you should seek the second opinion from an oncologist who specializes in your particular tumor type, Dotan says, and the physician who made your diagnosis is likely to know where to find such a specialist. Other good sources of referrals are online patient groups and nonprofits that are focused on specific cancers, such as the Sarcoma Foundation of America.
Knowing that patients may be anxious to start their treatments as soon as possible, several cancer centers will offer a second opinion within a day of receiving a request. These centers include Fox Chase, which takes requests for second opinions either online or by phone. Each case is handed to a nurse navigator who coordinates all appointments, secures copies of the patients’ test results and other medical records, and shares the information with the team that will be providing the second opinion. Some centers will also offer reviews of the pathology and imaging tests, in some cases changing the diagnoses and recommended treatment course.
“The navigators make sure patients are scheduled in a timely manner with all the right doctors, and they shepherd patients through the whole process,” Dotan says. The entire process often can be done online, she adds. “I have had multiple visits on Zoom or other virtual platforms to give second opinions to patients who live quite far (away),” she says.
Stanford University in California launched its online second opinion program in 2018, and for some patients with cancer, it has resulted in coordinated care plans that may not have been possible in the past, says Dr. Kristen Ganjoo, an associate professor of oncology at Stanford who specializes in sarcoma.
For example, after Ganjoo met a patient from Nevada who had a rare sarcoma, she arranged for a surgeon to perform the surgery at Stanford. But she was able to do a follow-up consultation with the patient online, saving him 10 hours of driving back and forth from his home.
In other cases, Ganjoo has provided second opinions for out-of-town patients, then arranged for standard treatments such as chemotherapy to be done close to where they live. “If a community physician sends a patient to me for a second opinion, I can formulate a plan for that patient to be treated locally,” she says. When patients get CT scans to check their progress, they can follow up with her by video chat. “I can review it with them and say, ‘Your CT scan looks good, continue with the same therapy.’ It can be reassuring for them to know that someone with sarcoma expertise is watching over them.”
The National Cancer Institute has selected 71 institutions around the country as “NCI-designated” cancer centers because of their focus on research aimed at developing new cancer treatments. It may be beneficial for patients to obtain second opinions from one of these centers because oncologists who practice there may be researchers in clinical trials of innovative treatments or may know about trials happening at other institutions.
“There’s a lot of research right now, and what’s amazing is some companies are developing drugs for rare sarcomas,” Ganjoo says. “But you may need to get a second opinion from a sarcoma specialist to find the best clinical trial for you.”
Although many oncologists recommend getting a second opinion before starting treatment, some patients can benefit from getting that second set of eyes on their case after they’ve completed one therapy and are moving to a second drug regimen or maintenance therapy.
Sarah Kelly sought her second opinion after she was treated for triple-negative breast cancer at a community hospital near Boston in 2015. She was pregnant when she received her diagnosis, and her first round of chemo- therapy — along with the delivery of her daughter, induced at 38 weeks — went well. But when her oncologist treated her with a regimen of taxol and carboplatin, her blood counts dropped so low she had to skip some treatments.
Knowing that triple-negative breast cancer is aggressive, Kelly decided to get a second opinion at Dana-Farber Cancer Institute in Boston. Her oncologist there recommended three high-dose treatments of taxol alone, followed by surgery to remove her tumor and nearby lymph nodes. The treatment was more tolerable for Kelly, and it worked; she has been free of cancer for six years. And she’s confident she’s getting her care from a cancer center that’s staying on top of developments in triple-negative breast cancer.
“I took a long-term perspective in moving to Dana-Farber. I knew if there was a recurrence of my cancer, there would be clinical trials happening there and access to new types of treatments,” says Kelly, 42, who went on to co-found SaltyGirl Beauty, a company that produces cosmetics using natural and organic ingredients.
Making a decision to switch to the cancer center that provided the second opinion can be difficult, but in some cases, it makes sense, Chagpar says. “Trust your gut,” she says, and your research. “Say you have a rare cancer, and your first doctor only sees one case of it every five or 10 years. Then you go for a second opinion at a place that sees five cases a week. You may feel more comfortable at that second institution where they have more expertise in your particular condition.”
Chagpar was contacted by a patient with a rare cancer at the base of his skull, which his oncologist wanted to treat with surgery. “It would have been very risky. I found out where the national experts were and he got into a clinical trial of a chemotherapy treatment,” she says. “He avoided surgery altogether and is doing remarkably well.”
So what are the most important questions to ask during a second opinion? Dr. Charles LeVea, chair of pathology and laboratory medicine at Roswell Park Comprehensive Cancer Center in Buffalo, New York, recommends asking whether your case will be reviewed by a tumor board and, if so, who would serve on that board.
“Multidisciplinary tumor boards meet as a group, with pathologists, oncologists, surgeons and other people who would be taking care of the patients,” LeVea says. “We project pathology slides on a screen so everyone understands the diagnosis and can discuss it.” Some advanced cancer centers use new technology to convert tumor glass slides to digital images, which can then be run through algorithms that enhance details that might otherwise be missed — and that can lead to a more accurate diagnosis, LeVea says.
Dotan recommends asking what the standard of care for your cancer would be at the institution that’s providing your second opinion. Depending on the tumor type, some cancer centers may have different strategies when it comes to surgery, chemotherapy, radiation and immunotherapy. “You want to know if the standard of care fits what you’re being offered at your local site,” she says. “If you find out that the place you go for a second opinion does something differently, that may be worth exploring.”
Finally, if you’re open to participating in a clinical trial, be sure to bring that up to your doctor during your second opinion appointment. Kelly says she felt a bit guilty telling her first oncologist that she obtained a second opinion at Dana-Farber and decided to continue her treatment there. But in the end, she knew it was the right decision.
“It’s important to understand all the options and opportunities for your kind of cancer,” Kelly says. “As I always say, you’re the CEO of your own cancer journey.”
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