It’s a scary moment when your doctor says: There’s a chance this could be cancer. Even as you’re processing those words, you’re taking on crucial new choices:
— Which hospital is best to confirm your diagnosis and start treatment?
— Who will be the oncologist guiding your cancer care plan?
— When should you ask for a second opinion?
— What types of services are essential to your care?
— Should you enroll in a clinical trial?
— Could genetic testing improve your treatment?
— Is there someone to guide you through the cancer treatment maze?
— Where can you find credible cancer resources to educate yourself?
— Can you receive ongoing treatment closer to home?
The following expert advice can help you make these challenging cancer care decisions with more confidence.
Selecting a Hospital
Where do you go to confirm your diagnosis and start treatment: a convenient local hospital or more distant cancer center? Many community hospitals provide some cancer care, such as surgery to remove tumors, radiation and chemotherapy options for a variety of cancers. They do not offer bone marrow transplantation like academic centers.
By contrast, cancer centers focus solely on cancer. They offer oncology expertise and the latest treatments and technologies, often for multiple cancer types or rare cancers. Some centers, like a breast cancer center within a hospital, may concentrate on a single type of cancer.
It makes sense to travel farther, if needed, to receive dedicated cancer care, at least when planning and initiating your treatment, experts advise. It’s sometimes recommended to work with your local team, closer to home so you can assure you are getting the best and most convenient care.
“We encourage people to think about coming to a cancer center if there are questions about their diagnosis,” says Dr. Jyoti D. Patel, medical director of thoracic oncology and assistant director for clinical research at the Lurie Cancer Center at Northwestern University and editor-in-chief of Cancer.Net, the American Society of Clinical Oncology’s patient-focused website. “Did they get adequate tissue for molecular testing? Was there a question about the pathology reading? Sometimes there is complex decision-making about whether surgery or radiation might be options.”
Oncology physicians, oncology nurses, cancer nutritionists and other team members have expertise and experience working with patients with particular cancer diagnoses.
“Particularly with rare cancers, it’s really important to find a specialty center, at least for an opinion,” says Dr. Diane Reidy-Lagunes, a medical oncologist and associate deputy physician-in-chief of the regional care network for Memorial Sloan Kettering Cancer Center in New York City. “Because those particular diseases are just much more challenging to often diagnose and treat. And you want to make sure with an uncommon cancer that the oncologist you’re going for really understands that disease.”
Not all cancer centers are equal, and some offer more advanced treatments, a wider range of technologies and services, and in some cases, better patient outcomes than others. Hospital rankings and designations can help inform your choice.
NCI-Designated Comprehensive Cancer Centers
The National Cancer Institute recognizes centers around the country that meet rigorous standards for state-of-the-art research developing new and better approaches to cancer prevention, diagnosis and treatments.
Of the currently 77 NCI-designated cancer centers, 51 are further recognized as comprehensive cancer centers, which are also recognized for their leadership, resources and substantial research across medical disciplines. Most are affiliated with university medical centers.
“Fortunately, we have really good data that’s been published over the past decade or so that NCI-designated comprehensive cancer centers provide better survival for patients with cancers,” says Dr. Joseph Califano, physician-in-chief at Moores Cancer Center at the University of California–San Diego Health. “And that’s not just esoteric cancers, but also very common cancers like lung, colon, breast and prostate cancer.”
The threshold to become an NCI-designated comprehensive cancer center is high, Califano says: “You have to demonstrate to the NCI that not only do you have an adequate clinical operation, but it’s broad-based and treats all the major and even smaller types of cancer with focused efforts and teams.”
Best Hospitals for Cancer Rankings
Every year, the U.S. News Best Hospitals rankings include Best Hospitals for Cancer. You can see how hospitals score in key aspects of cancer care.
The Best Hospital rankings comprise nearly 900 hospitals that see a large proportion of challenging cancer patients. You will find the 50 top hospitals for cancer treatment, followed by high-performing hospitals, and can tailor your search by cancer specialty and location among adult and pediatric cancer centers.
Choosing a Doctor
It’s important to have an experienced oncologist that you trust for your cancer care. That can start with a referral from your primary care physician, or by searching oncologist databases and listings:
— For a referral to an oncologist, “Relying on your primary care physician is great,” Patel says. But she also suggests the ASCO’s oncologist database as a source. “Someone who is listed or affiliated with ASCO in Cancer.Net is someone who clearly wants to stay current or engage in professional education. So I think that’s always a nice place to start. We have 45,000 members in the United States and the world over.”
— The U.S. News Best Doctors listing lets you search within a wide group of oncologists nationwide by years of experience, location and whether they’re affiliated with a top hospital.
— Board certification is another indication of an oncologist’s qualifications. Cancer doctors can be certified for one of three main specialties: medical, surgical and radiation oncologists — as well as for a variety of subspecialties like gynecologic oncologists.
When choosing a prospective oncologist, ask about their qualifications in treating your particular type of cancer: “Make sure that you feel confident they understand this disease,” Reidy-Lagunes says. You also need to feel comfortable with physicians on your cancer team.
“When you first meet your oncologist you want to get your questions answered,” she says. “And if you feel like the oncologist isn’t listening to you, it’s OK to try to find another one.”
Experts agree: Second opinions are valuable.
“Most oncologists recommend a second opinion,” Patel says. “No one ever feels badly when patients ask for one. Certainly, asking for a second opinion or a referral to a cancer center makes good sense, particularly for rare tumors or for anyone who really is interested in thinking about investigational options and clinical trials.”
Time taken to get another opinion and explore options is usually time well-spent.
“It all can be so overwhelming, and sometimes patients say, ‘I just want to start tomorrow,'” Reidy-Lagunes says. “But the emphasis is on: You want to start the best treatment for you, to give you the best possible shot.”
With rare cancers — such as ovarian, thyroid or pediatric cancers — second opinions regarding the best treatment are even more critical, she says. That includes confirming the pathology diagnosis — what’s under the microscope.
“Particularly in these uncommon cancers that I see all day long, very often I tell patients, ‘When we’re going for curative intent, we have one shot at getting it right,'” Reidy-Lagunes says. “You can’t really go back if you’re starting a treatment. So you want to be prepared that the treatment paradigm that you’re about to embark upon is the right one. That’s the time that you just want to double check.”
However, although Reidy-Lagunes encourages patients to get a second opinion, she adds that “sometimes, a third, fourth, fifth or sixth opinion can be a little too much and too overwhelming.”
Cancer care goes far beyond diagnosis and treatment. When eating becomes difficult because of nausea and vomiting from chemo, or radiation effects like mouth sores and digestive-tract damage, nutritional support is a must. People suffering emotional fallout from cancer often benefit from psychological or spiritual counseling. Pain management can make a world of difference in being able to tolerate the treatment side effects of cancer.
Multidisciplinary teams bring together a variety of services. Nutritionists, nurse navigators, social workers, specialty therapists and others work alongside oncology physicians and oncology nurses to provide holistic care. When choosing a hospital, ask about the scope of health care team members and the range of services they offer.
“Cancer care is not as oncologist-focused as it was maybe 20 years ago,” Patel says. “It’s much more patient-focused, so really think about the cancer care team as one that is much broader. There’s everything from nurse navigators to clinical nurses, physical therapists and palliative care specialists as well as the oncologist.”
Most cancer centers have financial services to help patients and families deal with insurance coverage or find resources to assist with issues like travel funding for specialized treatment like proton beam radiation.
“Cancer is associated with an enormous amount of toxicity that extends well beyond what we think of as the usual stuff of chemo, radiation and surgery,” Califano says. “There’s a huge psychosocial impact on families. Issues with work and financial toxicity are really significant. So, a multidisciplinary team can help with these (aftereffects) of treatment in a comprehensive way so that people get back to work, health and wellness.”
Clinical trials offer the opportunity to receive cutting-edge cancer treatments, particularly, but not necessarily, just for treatment-resistant cancer. “If patients are seeking a clinical trial, we encourage them to do so upfront,” Patel says. “Not only in refractory disease but to really think about novel therapies even as their first treatment. Consider the drugs approved in recent years: These oral drugs are now all frontline therapies.”
Whether you’re interested in participating in a cancer research trial or are uncertain, it’s good to ask about clinical trials when choosing a cancer facility.
“Another hallmark of really excellent care is the ability to access clinical trials,” Califano says. “Even if you’re enrolled in the placebo part of a clinical trial, your survival outcome tends to be better than if you had not enrolled in the trial.” Whatever the setting — such as an academic medical center, community-based hospital or HMO facility — “clinical trials are kind of hallmarks of a skillset or expertise,” he says.
If your cancer provider doesn’t bring up genetic testing, ask them. Depending on your individual type of cancer or tumor, genetic testing results may enable more personalized, targeted treatment and offer clues about cancer risk. Technology has advanced to allow for broader testing genetic panels at reasonable costs, even if it’s not covered by insurance.
“If you have a family history suggestive of cancer, you really want to talk to your oncologist and ask, ‘Do I need to have genetic testing?'” Reidy-Lagunes says. “Particularly in a young patient, any children or any patient less than 50, we have to ask ourselves: Could it be from an inherited gene?” In some cases, she says, it might be appropriate for a patient’s direct family members such as children or siblings to be tested as well.
Genetic testing can help guide treatment decisions. “Now, thank heavens, technology advances have allowed us to personalize treatment based on those genes we can identify — mutations, or damaged genes,” Reidy-Lagunes says. Another question to ask your doctor is: “If genetics are important for me, what’s the turnaround time for testing, and do you have the facilities to do that?”
Cancer Navigators and Patient Advocates
When the cancer domain is new and overwhelming — the varied treatments, hordes of hospital personnel and procedures, unfamiliar terminology and momentous decisions — a patient navigator, or patient advocate, can provide you with invaluable guidance.
Hospital-based patient navigators are employed by an individual medical center or health facility and work within that setting. For instance, a breast cancer center might have breast cancer navigators on staff to help patients throughout their hospital experience. Navigators know their particular facility inside and out, and can help patients through multiple appointments, discharge planning and other hospital hurdles and complexities to keep their diagnosis and treatment on track, as well as connecting patients to various supports within the hospital. For example, they help patients find financial assistance for expensive medications, offer education on medications, help patients make appointments for other physicians, scans and chemotherapy infusions.
Private patient navigators are hired directly by clients — patients or families — to help them find their way through the larger health care system to achieve better outcomes. “We work only for the patient and follow them through the continuum of care as long as they need it,” says Elisabeth Schuler, a board-certified patient advocate and certified senior advisor based in northern Virginia but also serving clients nationwide. “We’ll go to outside appointments; we will find second opinions,” says Schuler, founder and president of Patient Navigator LLC.
Helping patients research their disease and comprehend treatment options, unraveling their insurance issues, finding doctors, accompanying them to visits and assisting with medical paperwork are ways that patient navigators serve as mentors and coaches. If needed, they also assist patients with finding second opinions or different hospitals.
Your navigator can point you toward credible cancer resources to educate yourself. Schuler recommends the ASCO, NCI and American Cancer Society websites for their comprehensive, reliable information.
Ongoing Treatment Access
When your treatment regimen is established, your community hospital — and primary care physician or nearby oncologist — can provide accessible treatment while tapping into outside expertise.
“Sometimes people divide care, such as getting surgery at a highly specialized center but getting adjuvant or other therapies closer to home, because it makes more sense from a family support context,” Califano says.
Telehealth extends your cancer care team’s flexibility and reach. “With the advent of telemedicine and virtual visits, people are able to get care from all these people, in different sequences,” Patel says. “So it may be that you’re getting social work support by telephone, or the dietitian is calling you two days after treatment.”
“Cancer care is a team sport,” Califano says. “Finding a facility where you have highly developed teams that treat a lot of what you have is one of the best things you can do.”
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Update 06/29/22: This story was previously published at an earlier date and has been updated with new information.