The daunting news of a breast cancer diagnosis can – understandably – turn lives upside down. It’s a disease that tends to strike those in a caregiving role (mostly, but not exclusively, women), and it’s easy for the patient to shift her focus away from the day-to-day and more toward big-picture worries about her and her family’s future.
What patients might not fully recognize is the support and resources available to them.
The two faces of that additional support are Amber Tillinghast, patient navigator from the American Cancer Society, and Molly Tsipouras, a nurse in the role of breast oncology nurse navigator.
The nurse navigator concept is a relatively new one, and the Carole and Ray Neag Comprehensive Cancer Center was one of the pioneers. When Tsipouras joined UConn Health in 2012, a concept was all it was.
“It was a brand new role here,” Tsipouras recalls. “They hired me, and they said, ‘Figure it out. We don’t know exactly what it is, but look into it.’
“At the time, there were maybe two other nurse navigators in the whole country. I called them, and they were just developing it too, and nobody really knew what it was or what to do with it. And since then, it’s everywhere now, at every big cancer center.”
Tillinghast’s role was well established when she arrived in 2016. She’s not a nurse, and neither were her predecessors. Hers is a grant-funded position at the American Cancer Society, and she’s embedded at UConn Health.
“Amber is amazing as the liaison with the navigation,” Tsipouras says. “When I’m done with all the medical stuff with them and I’ve talked to them a little bit about their barriers, then she comes in and helps them with anything from meals that the patient may need at home while they’re getting treatment, to wig fittings when they’re getting treatment, to any type of supportive services ACS offers.”
“We’re like the supportive service team,” Tillinghast says. “The nurse navigators are amazing, answering all types of questions, medical, social needs, and then we all just kind of link in to each other.”
They’re also extra sets of eyes, both able to refer patients to services such as dietary, social work, or psychiatry when appropriate.
Other resources include books to help patients speak to their children about what’s happening, information on support groups for patients and spouses, and the American Cancer Society’s Personal Health Manager, a binder for patients to organize important information for their care.
Tillinghast’s office is on the fourth floor of the Outpatient Pavilion, readily accessible to patients in the Neag Comprehensive Cancer Center.
“Patients will come into my office to talk, maybe they’ve had a really rough visit, maybe they were just diagnosed,” Tilllinghast says. “It’s just an extra hand for them to hold as they go through this, being an ear to listen, and then with that, being able to help direct them.”
Tsipouras will accompany patients on their crucial visits.
“I’ll bring patients in through radiology when they have a suspicious finding, counsel them on the suspicious finding, talk to them about the biopsy, and when the results come back as cancer, we then get them in with the breast surgeon or the medical oncologist, and we meet with them for their first visit to educate them,” Tsipouras says. “We talk about barriers the patient may have to treatment, to meet with their families, educate their families. We talk about child care, transportation, job, any time that they’re going to need off. We talk about symptom management, if they’re having pain, if they’re having any side effects from the medication.”
And then it’s Tillinghast who helps with those nonmedical concerns – “the TLC stuff that you need when you’re being treated for cancer,” as Tsipouras puts it. Tillinghast regularly checks in with patients in the infusion room, and that regular contact with patients can go a long way.
“Sometimes it’s those things that didn’t necessarily come up in their first few visits when they were with a nurse navigator, that as time goes on throughout treatment they’re like, ‘You know what, the bills are really piling up,’” Tillinghast says.
“Amber makes it easier for us to take care of the patients,” Tsipouras says. “Amber sees them on a day-to-day basis, which, when you’re going through cancer, the more support you have, the better you can get through it.”
Beyond the diagnosis, the navigators guide the patients through the health care system, which can be overwhelming.
“We’re helping them understand why they’re meeting a medical oncologist, helping them get through to different people to get their appointments scheduled, making sure they have their next appointment set up,” Tsipouras says. “The system itself can be a barrier in terms of patients not knowing how to navigate it.”
Tsipouras carries a dedicated phone for breast cancer patients, which helps break down an accessibility barrier when patients have questions or need direction. Patients receive that number as well as Tillinghast’s.
UConn Health has three other nurse navigators on staff:
- Wendy Thibodeau (lung, genitourinary, brain, hematology/oncology)
- Sophie Masternak (gastrointestinal, melanoma, head and neck oncology)
- Ashley Aust (gynecologic oncology)
Learn more about breast cancer care at UConn Health’s Carole and Ray Neag Comprehensive Cancer Center at health.uconn.edu/cancer/patient-services/clinical-services/breast-cancer.