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Mom’s diagnosis scared the family last year. The bags were packed for New York City, expecting long treatment days.
Eighteen months of chemotherapy, surgery, radiation and an oral chemo later, her breast cancer is in remission. She beat the “C Word” thanks to new treatment options, innovative procedures, and a team-based approach to health care.
Today, cancer is preventable, treatable and curable right here on eastern Long Island. In many ways, this is due to the region being more developed than a generation ago — including in health care.
“The goal is let’s get trust from the community,” said Dr. Samuel Ryu, the department chair of radiation oncology at Stony Brook University Hospital.
Health systems — mostly Stony Brook Medicine, Northwell Health, NYU Langone and their partners — have transformed the East End into a network of cancer care. Collectively, these companies have taken down the silos that prevented convenient, coordinated and compassionate care and forced patients to go to treatment at large academic centers, hospitals and cities for decades.
In terms of patient care, hospital leaders estimate that with more access to screening and preventative care, the number of cancer diagnoses have increased around fivefold since 2000. However, mortality is on the decline, especially from the most common types of cancer: breast, prostate, lung and colon.
“When you hear that ‘C Word,’ it’s traumatic,” said Dr. Jonathan Haas, department chair of radiation oncology at NYU Long Island Grossman School of Medicine. “And while some cancers have a ‘little C,’ some cancers have ‘big C,’ and it is kind of severe to all patients.
“You know, we try to give them a road map that this is what to expect.”
Establishing Home Base
The drive to Haas’s office in Mineola is about 90 minutes from Southampton. “So anytime we can kind of save you a trip on the [Long Island Expressway], the Sagtikos, or the Southern and Northern State [Parkway], I think there’s a benefit to that,” he laughed.
NYU Langone’s Perlmutter Cancer Center is developing on-site chemotherapy, radiation and other treatments as part of its merger with Long Island Community Hospital in East Patchogue over the next few years, according to Haas.
Like NYU, Stony Brook, Northwell and community cancer centers are changing the way they operate to expand outpatient services to meet patients in their neighborhoods for consultation and services. Peconic Bay Medical Center opted to merge with Northwell Health in 2016. A few months later, Stony Brook acquired Eastern Long Island Hospital in Greenport and formally took over Southampton Hospital a year later.
With locations in Riverhead and Southampton, New York Cancer & Blood Specialists partnered with Memorial Sloan Kettering Cancer Center (MSK) — with locations in Commack, Uniondale, New York City, Westchester and New Jersey — to provide screening and diagnostic care at its community cancer centers, targeting the thousands of seasonal residents who flock to the East End.
“I don’t want to oversimplify it. But if you have a Big Mac in Manhattan, you know you’re getting the exact same meal wherever you go,” Haas said. “So we’re trying to make sure that the standard exists across the entire network.”
Whether out of competition or improving patient outcomes, the race for the East End was on.
When Ryu arrived in Southampton about 10 years ago from Michigan, he “realized pretty quickly that the East End is far from specialty care — even Southampton to Stony Brook is far.”
He joined the Stony Brook Cancer Center in 2014, as deputy director for clinical affairs before the merger with Southampton Hospital, which was an independent hospital a decade earlier. To improve patient care, the Phillips Family Cancer Center opened in May 2019 — just a five-minute drive down County Road 39.
“These are very disappointing diseases and therefore we need very good service,” Ryu said, walking through the radiation department on the first floor, with oncology, an on-site pharmacy, and dual-purpose rooms to support programs like yoga and group therapy sessions, on the second floor.
“We have to do chemotherapy and radiation together, or at the same time or sequentially, or sometimes mixed together, he added.
The Stony Brook takeover allowed for a better understanding of needs of the region, and connected the South Fork with an academic medical center internationally recognized for its research and innovation.
“All our physicians are connected there,” Ryu said. “These days we have Zoom that makes things easier, but even before that, I wanted to have them have a few days spent here a week to bring specialty doctors out here.”
His goal was to grow services that would help patients live with — and overcome — their diagnosis. He acknowledged that cancer has been rarely treated like other chronic diseases. For example, a patient can live with diabetes that is in remission. “Cancer can be viewed the same,” he said.
Digital patient portals, telehealth and individualized treatment protocols have made living with cancer easier for patients, according to health leaders. Not only is this care better at beating the disease, but they say it also establishes trust from the community.
“We have the capability to perform these high tech treatments or newer treatments without any problems,” Ryu said. “Even though it’s your first for a new procedure, you should know we are well prepared to do it.”
Especially since the COVID-19 pandemic, telehealth has allowed patients and their families to meet with their doctors and nurse navigators to walk them through their treatment, answer burning questions and give health professionals the ability to assess patient performance and quality of life. Perhaps the patients could share their anxieties or look for a less toxic therapy.
Plus, patient portals have allowed for direct communication of electronic medical records and appointment scheduling. There might be sign-ups for group mindfulness therapies and wellness activities with other patients.
For example, at NYU Langone’s Perlmutter Cancer Center, Haas offers a patient mentor program to try to match patients up with those who have gone through a similar diagnosis. “So, you can find someone around your age who has either finished a short time ago or a long time ago, and that kind of volunteer mentorship can show them that they are not alone,” he said.
Dr. Susan Lee, the chief of breast surgery at Peconic Bay Medical Center, said these opportunities can help connect the influx of people who are moving out east, seasonally or permanently, who are looking for a sense of community surrounding their disease.
“There are also a lot of people who are working, still young with families, who split their time between the care out here and then the city or the rest of Long Island,” said Lee, who was at Long Island Jewish Forest Hill Hospital before joining Peconic Bay in 2021. She wants patients to know they can get the latest high quality care without having to travel.
A caveat, she said, is working with an aging population with limited access to transportation and limited ability to go digital. “The other unfortunate disadvantage that we have out here is the [broadband] service is really bad,” Lee added.
Telehealth and other digital products are not meant to replace traditional care but to elevate care. Online videos walk patients through procedures and processes that might appear scary at first.
“We do have so many tools for interrogating the tumor,” said Alison Stopeck, the division chief of hematology and oncology at Stony Brook Cancer Center. “We could develop drugs to the targets that we know the tumor is more addicted to, or more likely to respond to. And we also are better at predicting which cancers are bad players, meaning more likely to progress, more likely to cause morbidity and mortality.”
In less aggressive cancers, treatment is not one-size-fits-all. Health professionals are able to dial back therapies to patients that have less toxicities — and can actually be more effective with fewer complications.
“It really is a golden age of oncology,” Stopeck said.
A large advancement has been in immunotherapy, “which is all the rage now,” having a patient’s immune cells attack the cancer, so it can’t progress again. And in some ways, Stopeck said it’s curative, because the white blood cells the treatment is targeting, known as T-cells, or lymphocytes, can live a long time in the body and remember that cancer cell if it were to return.
Therapies are also modified with antibody drug conjugate, a homing missile that targets cancer cells directly without harming healthy cells.
In surgery, robotic and exploratory devices can offer the latest in both removing tumors and reconstruction.
For example, NYU’s Haas uses CyberKnife, a radiation treatment for prostate cancer and other types of cancer including breast, lung, and brain tumors.
It is considered noninvasive and painless — and uses a radiation machine that has been miniaturized and placed on a robotic arm that moves in a circle, “like a record player.” The technology has a shoulder and elbow, as well as wrist and fingers to aim the radiation beam at hundreds of different angles while giving a higher dose of radiation with minimal exposure to healthy tissue.
“I tell my patients when I see them now, we tailor the therapy almost like an Armani suit,” Haas said. “It’s not just prostate cancer, it is your prostate cancer.”
With 20- to 30-minute sessions, the treatment typically lasts five days or less, compared to nine weeks on average.
At Northwell Health Cancer Institute at Riverhead, Lee uses bioimpedance technology, which monitors for limited swelling of the under arm and other signs of lymphedema. “For patients at risk, it measures the fluid and tissue densities. And it gives us an actual number rather than using a tape measure, which is more subjective,” she said.
In the operating room, three-dimensional imaging machines help patients reduce surgery time by cutting and looking at the margins of the tissue to see if the patient needs to undergo a reexcision while they are already under the knife — rather than schedule a follow-up surgery.
And at the same time, eligible patients have more access to plastic surgery where they can rebuild breasts using a patient’s own tissue from a tummy tuck. “Oncoplastic allows for a breast reduction or lift at the same time as the breast surgery so that more tissue can be removed and cosmetically, it looks much more optimal,” Lee said, noting that many patients want to get back to feeling themselves.
Innovation is happening daily through clinical trials, which are available to everybody, according to Stopeck, the associate director of clinical and translational research at Stony Brook.
She emphasized that clinical trials are safe. Pharmaceutical companies do not invest the money, and the federal government cannot agree to a trial unless it thinks the trial is going to lead to positive outcomes, she said.
Many trials evaluate different drug combinations and treatment protocols. The goal is often de-escalation — getting treated for a shorter period of time or eliminating some aspects of the therapy, such as trips to the doctor for radiation. “So a lot of these, we’re looking at ways to make cancer care more accessible to everybody, less costly for everybody,” Stopeck said. “Shorter in duration, and more and more tolerable.”
She acknowledged that when patients participate in a clinical trial, they tend to be followed more closely and get more comprehensive care — to evaluate benchmarks for the federal clinical trials office and drug maker.
“None of us went into this without putting the patient first. And in fact, when you think about oncology, truly the unsung hero of all of these advances in oncology, is the patient, particularly the patient who chooses on these clinical trials,” Stopeck said. “Because without them, we wouldn’t have any of these advances.”
Doctors agree that integrated medicine — the focus being on health and healing rather than disease and treatment through nutrition, movement and wellness — is key to a patient’s success, and can already be found in their communities. Massage, acupuncture, occupational and physical therapies can relieve pain and fatigue in those undergoing or recovering from treatment.
Exercise oncology programs help patients come up with some sort of an individualized exercise plan, because everybody’s level of physical activity is different. Studies show that regular exercise — roughly 300 minutes per week — can reduce the risk of breast cancer recurrence by up to 30 percent.
“Fortunately, the mortality associated with the most common cancers has really decreased markedly over the last several years,” Stopeck said. “And that’s due to several factors, but it’s due to better prevention and early — really early diagnosis and early screening.”
Innovation in cancer care starts with the patient through participation in regular doctors’ visits, annual health screenings, and early intervention, health professionals said.
Stony Brook Southampton Hospital has already started running a breast specialty clinic to address the most significant patient population on the East End. Cancer clinics for prostate and lung are becoming more available, too.
That way the hospital can build trust through well-trained staff, innovative services, minimizing complications and thorough preparation for new treatments, Ryu said.
“Even though I might recommend unidirectionally here, you have to understand, and you have to trust me, right?” he said. “We can get through this together — and from the start.”
If something is detected, take a deep breath. It is understandably scary.
Loop in your family for support. They are extra sets of eyes and ears.
They can help you make sure “that you have kind of an army of people that are looking at you,” from medical and radiation oncologists, to surgeons, nurse navigators and social workers — and other patients through support groups — to help “you build a network for yourself that’s going to get you through your cancer,” Haas said.
“Recognize that in this community, you have access to the highest level of cancer care in the world,” he said.
