A Special Kind of Care, A Special Kind of Caregiver

Physician-scientists at the Laura and Isaac Perlmutter Cancer Center at NYU Langone are providing leading-edge treatments to brain tumor patients, even as researchers at NYU Langone’s many labs make strides in developing new approaches that extend survival. But there’s another component to the ability of the Cancer Center to help these patients: supporting them in facing and conquering the many life challenges that can be unique to brain tumor diagnosis, treatment, and recovery.

Marc Plastrik, LCSW, a senior social worker at the Cancer Center, notes that cancer usually presents a range of challenges to patients and their families, starting with the emotional turmoil of what may be a difficult diagnosis. But brain tumors can present a range of additional difficulties, he adds, and he and other specialized social workers at the Cancer Center, as well as oncology nurse practitioners, focus on helping patients overcome them. “It can be hard for many people to understand what these patients are experiencing, and why they may feel or behave a certain way,” he explains.

Symptoms of brain cancer depend on several factors,including the tumor type, size, location, and extent, as well as age, health history, and more.For example, says neuro-oncologist Katharine A. McNeill, MD, “Brain tumor patients may experience cognitive, physical, or emotional challenges that can have a profound effect on a patient’s professional and personal life. Brain cancer is somewhat unique in terms of its often sudden onset and its potential to cause weakness, difficulty walking and/or lifting, and trouble with basic daily activities.” These symptoms, she adds, “may be caused by the tumor pressing on parts of the brain, from fluid build-up, or from side effects from treatment.” James P. Fraiman, MD, clinical assistant professor, psychiatry, and director, psychosocial services for the Perlmutter Cancer Center, noted that “everyone’s journey with cancer is different but changes may include difficulty with speech, memory, or concentration, personality changes, depression, or other changes in emotions. Some patients may also experience headaches, seizures, and/or severe fatigue.” In terms of support, Dr. Fraiman emphasizes the care team’s focus on “living well with cancer.” The entire team believes that an open dialogue between patient, family, caregivers, and providers about challenges allows us to provide support and assistance around such struggles.

Given how challenging these symptoms can be, brain tumor patients sometimes despair about being able to return to work. Mr. Plastrik is often able to help them overcome that dread, by supporting patients as they learn to work around their symptoms in the workplace. Part of that process can involve gradually building the patient’s confidence and reducing their anxiety by starting with small steps, as, for example, helping them arrange to speak with their employer about their transition back to work. “I’ll suggest starting back to work part time,” he says. “Then we can build from there.”

At home, a spouse, children, and other caregivers may find themselves bewildered and even overwhelmed by a patient’s mood and cognitive challenges. In those cases Mr. Plastrik may focus on family members and/or the primary caregiver, as for example when an elderly patient’s tumor leads to personality changes that render him or her unable to express emotion to a partner of many years. “That person is grieving the loss of a fun-loving, outgoing partner of 25 years or more without the partner being literally gone,” he says. “That’s someone who may need support in coming to grips with what’s hap- pening and in preparing for the future.”

Patients themselves often need support in their personal lives as they try to adjust to what may be significant changes in their capabilities and emotions, adds Mr. Plastrik. Younger adults, for example, may now suddenly face difficult challenges in maintaining the growth of their relationships and frustrations over their inability to fully care for themselves in the home. “These can be very big issues that most young people hadn’t expected to en- counter for many years,” says Mr. Plastrik.

For Cancer Center oncology nurse practitioner Nila T. De La Rosa, MSN, RN, NP-C, AOCNP, specializing in brain tumors can mean being able to spot and recognize changes in a patient before others do, so that the right type of care can be enlisted as soon as possible. For example, older patients might experience brain tumor-caused behavior changes that can mimic dementia—so-called “pseudodementia.” Ms. De La Rosa can help make sure such patients are quickly seen by neuro-oncologists and neurosurgeons so they receive the proper diagnosis and treatment.

The special warmth at NYU Langone is much appreciated by brain tumor patients, who sometimes suffer from a lack of social support exacerbated by the effects of the tumor and treatment. “The patients who stand out for me are the ones who end up battling this disease alone,” says Minerva A. Utate, MSN, ANP-BC, OCN, who has worked in medical oncology at NYU Langone for 25 years. “I wouldn’t work in any other field. The nurse practitioners and social workers here are often the ones who listen to the patients talk about what they’re feeling and experiencing. That’s my calling.” This extra dimension of care can be essential to patient recovery and ongoing quality of life, she adds.

Even as NYU Langone raises the bar on brain cancer research and treatment, everyone remains committed to the compassionate side of care, with a special understanding for the unique needs of brain tumor patients. “We want to raise the bar in every way for patients,” says Ms. De La Rosa.

Five Tips for Caregivers

Our experts offer the following advice for those who find themselves in the role of caregiver for someone diagnosed with brain cancer:

1.  Learn as much as you can from nurses, neuro-oncologists, and neurosurgeons to help you make informed choices. Let them direct you to evidence-based information.

2.  Make taking care of yourself a high priority every day. In order to provide care to someone else, you need to be at your best. An exhausted caregiver can’t be effective. Since being a caregiver is an ongoing job, it is important to think of this as a “marathon rather than a sprint.” It’s very important to take breaks and accept help from others.

3.  Seek out support from our social work team. NYU Langone has free support groups for both patients and caregivers, where people share empowering tips and experiences. For more information, call 212.731.5480.

4.  Encourage the patient to take advantage of the integrative aspects of patient care at NYU Langone, including massage, yoga, acupuncture, and more. And try some yourself. For more information or to schedule an appointment, call 212.731.5806.

5.  Enlist help in every form you can find it. Whether it’s transportation, rehabilitation and treatments, or simply a sympathetic ear, the team is there to support you in any number of ways.