Beacons of Hope: MSK's Patient-to-Patient Volunteers

Any serious illness can be overwhelming, but cancer poses a particular challenge. There are many unknowns that can make a person feel anxious, from understanding what treatment may be like to dealing with changes in the body — and disruptions to life in general.

MSK Vivian Strong and volunteer Frank Licciardi
Frank Licciardi and surgical oncologist Vivian Strong

Besides expert care, the best medicine may be the opportunity to talk with someone who’s been there.

Memorial Sloan Kettering’s Patient-to-Patient Support Program connects patients and their caregivers with people who have completed cancer treatment and who can offer unique and personal perspectives.

Volunteer Voices: Monica and Frank

Monica Ventorino is a ten-year breast cancer survivor. Frank Licciardi is a six-year survivor of gastric cancer. Both have had extensive treatment, including surgery and chemotherapy. And after their treatments ended, both decided they wanted to share their experiences to help others beginning journeys of their own.

“When I was first diagnosed I was lucky to have several friends who’d had breast cancer before me,” says Monica, who had a bilateral mastectomy and reconstruction as part of her treatment.” They were of enormous help and support. Now I’m the ‘been there, done that’ person.”

“It’s also the case that sometimes it’s easier to talk to a stranger than to a family member or friend,” she adds. “This can be especially true at the beginning, when you’re just beginning to wrap your mind around the fact that you’ve been told you have cancer and haven’t yet started to gather your support group around you.”

Frank concurs. “Even if you’re fortunate enough to be surrounded by family and friends, cancer can still make you feel very disconnected and alone,” he says. And often a person doesn’t want to add to their loved ones’ stress by acknowledging how frightened he or she is. But people can say anything they want to me. I’m a safe harbor, a protected place to talk.”

Compassion, Support — and Practical Advice

Cancer treatment can be complicated, especially from a logistical point of view. While volunteers like Monica and Frank offer compassion and support in the midst of a life-altering event, they can also provide extremely practical advice.

Frank offers an example: While receiving chemotherapy, he started a practice of keeping a log of everything he experienced during the weeks between treatments, noting any physical side effects or symptoms. “A number of people I’ve talked to have asked, ‘How do I manage the weeks between chemo? How do I remember what to tell my nurses and doctors?’ I suggest they do what I did and bring the log with them to their chemo appointments. It’s a way to keep your thoughts organized and can be of enormous help to the treatment team.”

Monica’s cancer was triple-negative, which means that her tumor lacked all three receptors known to fuel most breast cancers. While responsive to chemotherapy, this type of breast cancer generally doesn’t respond to receptor-targeted treatments so those with the disease have fewer effective treatment options. “Women who discover they have triple-negative breast cancer are especially anxious,” she says. “Sometimes they’ll say, ‘I can’t get past the anxiety. How did you do it?’ Not only am I able to reassure them, ‘Here I am, a decade later, cancer-free,’ but I often remind them that MSK has all sorts of wonderful resources. For instance, the Psychiatry Service has doctors skilled in helping people with cancer deal with issues such as anxiety — and I recommend that they should absolutely take advantage of these services and programs.”

Naturally, volunteers are open about sharing their personal experiences. “Dealing with breast cancer raises many very personal issues, and I’m here to discuss any question or worry a woman may have,” says Monica.

Frank also points to a concern he hears from patients that he’s able to personally address: “It’s not uncommon that someone has to miss a chemo treatment because his or her blood counts are too low. This can be devastating — it’s natural to want to fight the cancer and get your treatments on time. I can share that this happened to me, too, and I’m fine. Patients take comfort in my experience.”

How the Program Works

Every patient volunteer receives specialized training. Much of it focuses on developing effective communication techniques and ways to draw upon one’s own experiences to support the needs of patients and caregivers. It includes sessions in which fledgling volunteers role-play with more seasoned volunteers who assume the role of the patient. Feedback from staff and other volunteers help them hone their skills.

All communication between volunteers and patients is strictly confidential, so volunteers also receive training in the requirements of the Health Insurance Portability and Accountability Act, known as HIPAA, which protects patients’ privacy.

The Department of Volunteer Resources coordinates the pairing of current MSK patients with appropriate volunteers based on their diagnosis, age, gender, and other factors. Once a patient and volunteer are matched, a phone call ensues. That initial contact may be the only communication a volunteer has with a patient, or it may be the beginning of an ongoing relationship.

“A woman may want to talk on a regular basis, or she may feel the need to speak only once,” explains Monica. “Or she may call me four months down the road in the middle of treatment, or perhaps once a year when she’s about to get a mammogram or a PET scan and is experiencing ‘scanxiety.’”

“The relationship is entirely patient-driven,” Frank agrees. “We can talk on the phone. We can meet in person if that’s what a patient would like. It can be a regularly occurring conversation or simply an occasional check-in.”

“It Changed My Life”

Besides volunteering, Monica and Frank share something else in common: the experience of cancer altering the focus and trajectory of their lives.

Monica had been working in the insurance industry before her diagnosis. Her children were grown, and she ultimately made the decision to leave her job and devote herself full-time to helping others.

Frank, who works in private equity, says that he’s begun contemplating the likelihood that in the coming years he’ll be dedicating even more of his time to giving back. He recalls that when a patient he had been talking to passed away, he received a call from the patient’s wife asking if he would speak at the funeral. “I’d only known this man only a relatively short time, but his wife said, ‘He really wanted you there.’ It reinforced for me the positive impact we can have on the lives of others.”

“It may be hard for people to understand it when I say that a cancer diagnosis changed my life for the better, but it did,” concludes Monica. “It opened a door to an entirely new and fulfilling next chapter.”

Learn more about the many opportunities for volunteering at MSK.