How Cancer Centers Are Raising the Care Game
A multidisciplinary approach means that you’ll be appointed a team that shares information, agrees on your treatment, and can provide entry to clinical trials.
In the summer of 2012, Howard Katz of Bloomington Township, MI, had a stomach ache that wouldn’t go away. “After about two weeks, I finally decided to go to the doctor, because I thought I had an ulcer,” he recalls. The doctor ordered a colonoscopy and an endoscopy “just to check things” and told Katz, then 51, the tests had shown something concerning.
That something turned out to be pancreatic cancer—and during surgery, doctors found that the cancer had spread to his liver, gallbladder, and spleen. The local oncologist wasn’t overly negative, Katz says, but he wasn’t overly positive, either, so Katz decided to go for a second opinion. Friends of friends told him about the Karamanos Cancer Center in Detroit.
Katz, now cancer-free, believes the center was a huge factor in saving his life. And he may be right. Karamanos is one of 71 designated cancer centers in the U.S. funded by the National Cancer Institute (NCI), whose multidisciplinary approach has been shown to statistically ups the odds of cancer survival, according to multiple studies. That means, in addition to prescribing leading-edge treatments, NCI centers provide teams of medical pros dedicated to full-spectrum care—attending to physical, emotional, and sometimes even financial needs.
With higher survival rates and comprehensive support, every cancer patient deserves to be treated at such a place, right? Absolutely. However, in reality, specialty cancer centers can’t be found in in every state—so proximity alone can prevent some people from seeking treatment at one. The good news? There are ways to access NCI-level cancer care, no matter where you live, or where you get treated. Here’s everything you need to know to do just that.
What Makes NCI Cancer Centers So Effective
Located in 36 states and D.C., these specialized cancer centers receive federal dollars to do research on preventing and treating all types of cancer—and provide the results of all that science to patients in their hospitals. That’s why your odds of survival may increase by as much as 35% if you’re treated at one, according to researchers at Dartmouth University—no matter what your stage of cancer is at the time of diagnosis. Researchers at Massachusetts General Hospital found that people over 65 with pancreatic cancer (which the Mayo Clinic describes as “one of the deadliest cancers” with “poor prognosis”) who also sought treatment at a cancer center increased their five-year survival rate.
Not going to one of these centers may also have negative consequences, the research shows. One study looked at 70,000 cancer patients in Los Angeles County and discovered that those who weren’t treated at an NCI cancer center had between a 20% to 50% increased risk of dying. Which is a pretty upsetting statistic to consider.
If you're looking for an NCI-designated center, you can find the one nearest to you at the National Cancer Institute’s site). Read on for ways your treatment may improve at one of the locations, plus how to maximize your chances of getting outstanding care no matter what hospital you happen to find yourself in.
Most Important: Your Medical Team Is Aligned
When every member of your assigned cancer treatment team meets to discuss the particulars of your treatment, this is known as a tumor board. At cancer centers, it usually meets weekly in a formal setting, explains Tracy Onega, Ph.D., senior director of population sciences at the University of Utah and the Huntsman Cancer Institute in Salt Lake City.
“If I’m a breast cancer patient, my doctors might bring my case to the tumor board and present everything. There would be the pathologist, radiologist, medical oncologist, breast surgeon—anybody who might have anything to do with my care—in that room. They would discuss the specifics of my case in the context of their roles in the total-care management that’s being planned,” explains Onega, a cancer epidiomologist who’s co-authored studies on outcomes at NCI-designated centers.
That’s important because every tumor is different, and your team will be able to bring collective expertise to figure out a course of action based on your specific needs. This was key for Kristina Kotlus, 36, of Manasses, VA, who was initially diagnosed with brain cancer in 2013, and went for a second opinion, followed by radiation, at Duke Cancer Institute in Durham, NC. “Everyone on the team sat down, came to an agreement about my options, and while I still got the final say, everyone was on the same page about chemo and radiation, and if we should even use radiation—there was no wondering which doctor to listen to,” she says. This was in stark contrast to her local providers, who all seemed to disagree on the best course of action, and who kept telling her: ‘Well, you could do this, but I think you should do that,’” she adds.
As a patient, it might mean the most aggressive treatment because your body can stand. This happened to Katz, whose doctors recommended a powerful chemo combination known as Folfirinox, which is used to treat metastatic pancreatic cancer.
Conversely, it may mean pulling back on treatment at times, says Julie Wolfson, M.D., an assistant professor at the University of Alabama School of Medicine, in Birmingham, AL, and a member of the university’s Insitute for Cancer Outcomes and Survivorship. The idea, she says, is to “see how low we can go. Can we actually not give you chemo at all, and just do surgery, even though we’ve always given this kind of cancer chemotherapy—or, hey, maybe we don’t have to do radiation anymore."
These options are possible because, as Onega explains, integrated teams of doctors, nurses, and clinicians can work together to understand all the nuances and vagaries of this kind of disease.
Wraparound Care Improves Outcomes
One of the mandates of an NCI-designated cancer center is that it provides a full 360 approach to care that addresses not just your specific treatment regimen, but emotional, familial, and even insurance issues, too.
“There was the head of the brain tumor center, the oncologist I would see, the nurse oncologist, the radiation oncologist, the pharmacist, the social worker for me and another [one] for my family, the housing coordinator, and someone from billing to discuss how they could help us make sure our insurance would cover my out-of-network care,” says Kotlus. In her case, Duke Cancer Institute took care of the details involved in getting her insurance company to fork out for those costs.
At Karamanos, Katz and his family met regularly with a social worker who was assigned to them. “Then they have support groups, so I got very involved in one. They have a caregiver support group, and my wife went to that. They have a pretty extensive healing arts program—music therapy, art therapy, yoga,” he says. And while the expert medical care he received at Karamanos was key in his remission, he says, “I think at the same time, the support—whether you call it spiritual or emotional—is also a very significant component in your survival” and kept him positive throughout the grueling treatment.
To that end, there’s evidence showing that palliative care—which includes emotional support, pain management, and help finding services like home care—can make what Katz calls a “huge, huge difference” to a patient’s quality of life. While people mistakenly think palliative care is just for end-of-life (that’s actually hospice), you can sign up from the get-go, even if your cancer is in the earliest stage.
“They’re not letting patients fall off the map—they’re making sure that they’re giving the most intense therapy they can, because they can support them from the ground up. They can really hold their hands through that, as well,” says Dr. Wolfson. Wraparound care becomes particularly important for cancer patients ages 15 to 39, she notes, whose survival rates are much lower than other age groups.
Cancer Center Patients Gain Access to Clinical Trials
Clinical trials are medical studies done on patients to test drugs or non-pharma treatments for a particular disease. About 3% of adult cancer patients (or fewer than one in 20) take part in this type of research, according to research. But there’s some evidence to suggest that enrolling in one can boost your chances of survival. One 2020 study found that clinical trials cut the risk of dying in half for non small-cell lung cancer patients, for example. And researchers from the University of Washington in Seattle found that all cancer patients who were in clinical trials improved their chances of surviving in the first year after their diagnosis.
Your odds of taking part in these trials are better if you’re in a center that’s devoted to research as part of its core mission. Even more promising: “The doctors treating you might sit next to somebody that’s designing the next trial. It’s being in proximity to not just the newest thing that’s happening right now, but what might be happening tomorrow,” explains Dr. Wolfson.
NCI-designated centers aren’t the only places you can find out about clinical trials or enroll in them, but “definitely there are more in the pipeline,” explains Onega. There is a big effort now to get the word about these research studies so that people in other communities can take part of them.
Better Care Outside of NCI-Designated Centers
“Some people really prefer to stay in their communities where their support networks are or logistics aren’t such a barrier,” says Onega. Among those barriers: Cost. One study found that surgery costs are higher at cancer centers and many of these centers are considered out-of-network by insurers (especially if you buy your own plan).
Another is distance—sometimes the closest NCI-designated center is in the next state and hours away. And although some centers can help with housing and even help you find money to fund travel, leaving your family and friends (or job) for weeks at a time can be tough.
“I think that would be the hardest part,” says Kotlus. “We were very fortunate that we had the privilege of choice. We were able to afford the hotel stay [and] the Airbnb, the second time. My husband was able to telecommute, and we had my mother to help with the kids,” she explains.
But if all these options remain out of reach, you can still advocate to receive the best possible care. Here’s how:
Ask questions. “We all expect to be asked the questions, and we think it just makes you a more informed and engaged patient,” says Dr. Wolfson. When your oncologist mentions a treatment, ask, “Is this the way everybody with my type of cancer and at my age is being treated—and why?” If your oncologist says she doesn’t know, or there are some studies showing something else, you can bring up getting a second opinion.
Get a second opinion. It’s a myth that specialty cancer centers only treat the rare or advanced cancers. No matter what your stage, try to go to one to get another doctor’s take about treatment and diagnosis, or take advantage of the post-COVID boom in telehealth to get the opinion.
Share the care. Your local oncologist can manage your care in consultation with the more specialized doctors at the cancer center, advises Onega. This means you’d go to the cancer center once or twice a year (or just have the surgery there), and then your local oncologist finds a way to cover the majority of your care. This is common—and most oncologists are willing to do this openly and transparently, she adds.
Get the latest info on clinical trials near you. You don’t have to be at a cancer center or teaching hosptial to find the latest research study, says Onega. First, ask your oncologist if he belongs to one of several cooperative groups (called National Clinical Trials Network) that include researchers, cancer centers, and local oncologists all involved in NCI clinical trials. If not, try finding one of the NCI community-based oncology research programs (called NCORP)—they’re located in 44 states, including underserved areas, and their aim is to enroll more people in clinical trials.
What matters most is that you’re proactive. NCI centers across the country are making it their mission to translate what they do to the wider world. “It's not just doing it best here, but making sure that we help the greater cancer community do it as well,” explains Dr. Wolfson. So make it your business to get the care you deserve. As Katz puts it, cancer is a one-shot deal. “If you don’t do it right, you don’t get another chance.”
Cancer Center Overview: National Cancer Institute. (2019.) “NCI-designated Cancer Centers.” https://www.cancer.gov/research/infrastructure/cancer-centers
Survival Rates at NCI Centers (1): Medical Care Research and Review. (2009.) “Influence of NCI Cancer Center Attendance on Mortality in Lung, Breast, Colorectal, and Prostate Cancer Patients.” https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4892698/
Survival Rates at NCI Centers (2): JAMA Oncology. (2015.) “Risk Adjusting Survival Outcomes in Hospitals That Treat Patients With Cancer Without Information on Cancer Stage.” https://jamanetwork.com/journals/jamaoncology/fullarticle/2451426
Mortality Rates at Non-CCCs: Cancer. (2016.) Impact of Care at Comprehensive Cancer Centers on Outcome – Results from a Population-based Study.” https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3806880/
Survival Rates for Pancreatic-cancer Surgery: American Journal of Surgery (2020.) “Variation in long-term oncologic outcomes by type of cancer center accreditation: An analysis of a SEER-Medicare population with pancreatic cancer.” https://pubmed.ncbi.nlm.nih.gov/32265013/
Clinical Trial Statistics: American Society of Clinical Oncology Educational Book. (2017.) “Role of Clinical Trial Participation in Cancer Research: Barriers, Evidence, and Strategies.” https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5495113/
Clinical Trial Survival Rates: Journal of the National Cancer Institute. (2014.) “Comparison of Survival Outcomes Among Cancer Patients Treated In and Out of Clinical Trials.” https://academic.oup.com/jnci/article/106/3/dju002/988907
Survival Rates in Lung-Cancer Patients in Clinical Trials: ASCO Meeting Library. (2020.) Potential impact of clinical trial (CT) participation on survival of patients with metastatic non-small cell lung cancer (NSCLC). https://meetinglibrary.asco.org/record/179033/abstract
Palliative Care Benefits: The Cochrane Data Base of Systematic Reviews. (2017.) “Early palliative care for adults with advanced cancer.” https://pubmed.ncbi.nlm.nih.gov/28603881/
Costs at NCI Centers: Journal of Clinical Oncology (2020.) “Association of hospital type with prices, spending, and acute care utilization among privately insured patients undergoing cancer surgery.” https://ascopubs.org/doi/abs/10.1200/JCO.2020.38.15_suppl.e19376
Out-of-Network Insurance: Journal of Clinical Oncology (2017.) “Access to Accredited Cancer Hospitals Within Federal Exchange Plans Under the Affordable Care Act.” https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5455806/