IN APRIL 2020, truck driver John Lex was waiting to load up his tractor trailer at a Walmart distribution center in LaGrange, Georgia, when he felt a severe, sharp pain in his lower abdomen. The self-proclaimed “stubborn guy” figured if he went home to lie down, he would feel better. However, by the time he arrived home in Monroe, Georgia, the pain had amped up to “an eight out of 10.” He asked his wife to drive him to the local hospital’s emergency room.
Doctors there thought his pain might be appendicitis, but a CT scan revealed something unexpected: a mass in his colon. “The doctor told me that they believed it was cancerous, but he wouldn’t know for sure until they got in there,” says Lex, now 56, who had immediate surgery to remove the mass and have his colon resected. He would need to wait for results from the biopsy to get confirmation, but “[the doctor] was pretty confident that it was cancer,” Lex says.
Three days after surgery, on April 25, 2020, these suspicions were confirmed. Lex’s tumor was malignant—with 19 positive lymph nodes. He had stage IIIC colon cancer. He was referred to a medical oncologist at Piedmont Walton Hospital in Monroe—the same hospital where he had his surgery. He completed a six-month course of chemotherapy with FOLFOX (folinic acid, fluorouracil and oxaliplatin), but in January 2021, the scans showed that the tumors were back in his colon, as well as the lining of his abdominal cavity.
At that time, his oncologist suggested another chemotherapy combination and referred Lex to a colleague at Atlanta-based Winship Cancer Institute at Emory University, which is less than 30 miles away from Lex’s home, for a second opinion. Winship Cancer Institute has earned the National Cancer Institute’s highest honor—a comprehensive cancer center designation—which signifies significant research infrastructure along with the capacity to provide high-quality treatments to patients. The oncologist at Winship confirmed the treatment plan. Lex continued to be treated by his original oncologist, satisfied that he was receiving appropriate care.
Treatment Close to Home
Like an estimated 80% to 85% of people with cancer in the U.S., Lex sought treatment at a community cancer center. Community cancer centers typically provide care through oncology practices or networks, offering treatment at local hospitals instead of specialty cancer centers. They are not usually a part of large academic teaching hospitals and don’t have NCI designations.
“Community hospitals are those institutions that are designed to take care of patients. They’re not necessarily teaching and they’re not necessarily doing research. That’s not to say that they never do,” says Thomas Tucker, the senior director for cancer surveillance and associate director of the Kentucky Cancer Registry at the Markey Cancer Center Prevention and Control Program at the University of Kentucky in Lexington. Tucker has published research on Markey Cancer Center’s efforts to form an alliance with community cancer hospitals to help provide more standardized cancer care throughout Kentucky.
The decision to receive care in a community cancer center is often influenced by geography, given that many people in the U.S. do not live near large academic teaching hospitals or one of the 71 NCI-designated cancer centers spread across 36 states and the District of Columbia. “The number one criterion that’s going to affect where a cancer patient gets treated is going to be their location,” says Rose Gerber, a breast cancer survivor who is the director of patient advocacy and education at the Community Oncology Alliance, a nonprofit organization based in Washington, D.C., that advocates for the preservation of oncology private practices that offer patients high-quality, affordable cancer care close to home. Gerber notes referrals often come from a patient’s primary care doctor who is familiar with local oncologists. In addition, a patient’s and doctor’s familiarity with the local health system and the convenience of not traveling far for what are usually multiple treatments often provide reassurance to patients, Gerber says.
Getting a cancer diagnosis can be overwhelming, and it can be difficult to know where to start to find quality care.
A primary care physician, who is often familiar with specialists in the area, can be an excellent starting point for referrals, says Nancy L. Keating, a primary care physician at Brigham and Women’s Hospital and a researcher in the Department of Health Care Policy at Harvard Medical School in Boston. “The primary care doctor who is helping to oversee and coordinate your care can often be a really helpful resource in helping you identify the right care,” she explains.
Patient advocacy organizations and online resources, such as disease-specific Facebook groups, can also help patients gather information and advice. “Historically, patients who have been treated for cancer in the past are very good at having a sense of who is a good communicator, who helped them understand their cancer and how to treat it,” says Keating. “It’s less clear how well patients can measure technical quality, particularly for things like surgeries where they are not conscious during the procedure, although they certainly can recognize how well things worked out for them in the end.”
The National Comprehensive Cancer Network provides patient guides, which break down professional NCCN guidelines into easy-to-learn formats. These guides include various cancer types so patients can learn more about their diagnosis and treatments.
The American College of Surgeons offers Commission on Cancer accreditation to more than 1,500 cancer programs in the U.S., providing a searchable list of facilities that have earned accreditation.
The National Cancer Institute (NCI) recognizes cancer centers around the country that meet rigorous standards for cancer research for the benefit of patients. NCI-designated cancer centers focus on research in preventing, diagnosing and treating cancer, while NCI-designated comprehensive cancer centers are recognized for providing greater depth in these areas.
The NCI Community Oncology Research Program (NCORP), launched in 2014, ensures people can participate in clinical trials in local communities where most people seek treatment.
Other variables, including a person’s cancer type, stage, the pathology and genetic makeup of the tumor, and any previous treatments, can all factor into people’s decisions about where they go for their care. When analyzing choices, oncologist Diane Reidy-Lagunes suggests that patients start by asking questions to gain an understanding of the doctor’s experience with the patient’s stage and type of cancer.
“There are definitely some questions that you want to ask the oncologist when you’re meeting them … particularly for instances of rare diseases,” says Reidy-Lagunes, who is the associate deputy physician-in-chief of the Regional Care Network at Memorial Sloan Kettering Cancer Center in New York City. She suggests asking, “Is this a disease that you’re often taking care of? Have you only seen one in your lifetime or do you see five in clinic daily?”
Patients can also look up a physician’s specialties online before the office visit, says Nancy Keating, a primary care physician at Brigham and Women’s Hospital and a researcher in the Department of Health Care Policy at Harvard Medical School in Boston, who studies factors that influence the delivery of high-quality care for people with cancer. “The more specialized training someone has, the better, especially when complex care is needed,” she says, using the example of a surgeon who specializes in a certain kind of cancer. “If you are a colorectal surgeon, you’ve done a fellowship, and you only do colorectal surgery. In addition, you are continually getting exposed to new cases daily and that’s all you do.”
With more experience comes greater proficiency. Research indicates that people with cancer who undergo complex procedures at high-volume surgical centers have better outcomes compared to low-volume centers, including for lung, esophageal and pancreatic cancer. For example, one
study published in the April 2017
Annals of Surgery suggests patients with esophageal cancer who traveled to high-volume surgical centers had significantly better five-year survival rates, with 39.8% of patients living five years or longer compared to 20.6% who sought treatment at low-volume surgical centers. Another
study published Nov. 1, 2021, in
Cancer, compared outcomes at high-volume and low-volume radiation centers for a number of cancers and found patients receiving adjuvant radiation had significantly improved survival at very high-volume facilities when compared to low-volume facilities. Patients who received radiation alone for prostate, non-small cell lung, pancreatic, and head and neck cancer without surgery or other treatments also had increased survival, according to the study.
Lindsay Longo, an IT services director who lives in Tampa, Florida, was diagnosed with stage II Hodgkin lymphoma in November 2020 after going to an emergency room with escalating symptoms from COVID-19. While she was there, doctors performed a CT scan and discovered a large mass in her left lung, a rare presentation of Hodgkin lymphoma. She had a lung biopsy on Nov. 25, 2020, and five days later was diagnosed with cancer.
Longo ultimately decided to get her treatment at Moffitt Cancer Center, an NCI-designated cancer center in Tampa. The 39-year-old was impressed with the depth of experience that Moffitt provided, including swift coordination of care. “I didn’t feel like [the hospital where I was diagnosed] was moving fast enough for me, so I decided on Moffitt for its credibility and the top ranking. For me, it was a no-brainer,” she says.
On Dec. 31, 2020, Longo began treatment, receiving eight rounds of ABVD (Adriamycin, bleomycin, vinblastine, and dacarbazine) administered every two weeks. At the end of treatment, a scan revealed one spot on a lymph node. At that point, a tumor board, consisting of a multidisciplinary team of physicians at Moffitt, reviewed her case and suggested she have four more rounds of chemotherapy. On July 27, 2020, her scans were clear.
Access to Clinical Trials
While the standard-of-care treatments offered in cancer centers and community hospitals already have proven efficacy, some patients may also be interested in experimental treatments and clinical trials, says Gerber, who was diagnosed with stage II HER2-positive breast cancer in 2003.
Gerber had a lumpectomy followed by eight rounds of chemotherapy and radiation at Eastern Connecticut Hematology and Oncology, an oncology practice affiliated with Backus Hospital in Norwich, Connecticut. Her physicians also offered her an opportunity to participate in a clinical trial that tested the use of a targeted medication called Herceptin (trastuzumab) to reduce the chance of her cancer returning.
“[HER2-positive breast cancer] at the time was one of the deadliest diagnoses with a very poor prognosis,” she says. Gerber realizes now how fortunate she was to take part in a ground-breaking clinical trial. Today, she credits her survival and good health to being a part of the Herceptin clinical trial, and the drug is now the standard of care for patients with HER2-positive breast cancer. Gerber notes that many community cancer centers offer clinical trials—and the idea that this type of research is only offered at larger research or academic hospitals is a misconception.
Having access to a range of treatment options—both the standard of care and experimental drugs—is especially important for patients who have advanced cancer, says Heidi Nelson, medical director of the American College of Surgeons, Cancer Programs, which is responsible for the Commission on Cancer (CoC) accreditation program for hospitals. The accreditation means facilities have demonstrated that they provide a range of services, either on-site or through referrals to other facilities, including diagnostic imaging, radiation oncology, systemic therapy, psychosocial support, rehabilitation, nutrition and access to clinical research.
Collaboration between medical oncologists, surgeons, radiation oncologists, nurses and social workers provides a good measure for quality care, Nelson says. “With an appropriate team of specialists, each professional sees a different part of the patients’ needs and the cancer details. The full picture comes together when all the professionals come together around each patient to make sure nothing is left out of the care plan,” she says.
That type of collaboration can also extend across hospital systems—including between NCI-designated cancer centers and community hospitals. One example of this type of collaboration is with the NCI-designated University of Kentucky Markey Cancer Center, in Lexington, which started an affiliate program in 2006 that now includes 21 community hospitals. One of the requirements for facilities taking part in the alliance is achieving and maintaining CoC accreditation, as a means to increase quality of care in cancer hospitals across the state. A
study of 13 hospitals in the network published in the February 2021
Annals of Surgical Oncology showed this collaboration increased the hospitals’ ability to meet quality measures three years after they joined the network compared to three years prior. In addition, the number of hospitals that received CoC accreditation increased from three to 12.
“This is an opportunity for the medium- and small-sized hospitals to have access to resources for facing issues or problems they may not have seen before,” says Tucker, who notes that academic and research hospitals don’t have the capacity to treat every cancer patient. “The smart thing [to do] is to help community hospitals develop that capacity. Many of them are quite good at it [already],” he says.
For patients like Lex, having the ability to tap into expertise at both his local cancer center and a larger cancer center provided extra reassurance. This collaboration included having a multidisciplinary team review his case at the hospital to determine the best course of care. “Knowing that it’s not just [my oncologist] that’s looking at my records, that it’s all the doctors that she works with really eased my mind,” he says.
In May 2021, Lex went back to Winship for another second opinion after a PET scan showed one of his three tumors was growing. Genetic testing in early 2021 showed his tumors tested positive for BRAF mutations, which made Lex eligible for a combination of targeted therapies, Erbitux (cetuximab) and Braftovi (encorafenib). Since starting treatment, his tumors have appeared to be less active in the PET scans, which could be an indication that treatment is working. In addition, one tumor has gotten smaller in size. He hopes the targeted therapy will keep his tumors at bay. “We’re hoping that maybe the treatment will knock it out completely,” says Lex. “I am so happy I got the second opinion. It just eases your mind because I have two great doctors looking over me.”
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December 21, 2021