Lymphomas

Finding Help When the Diagnosis is Lymphoma
. . . an interview with Diane Blum, MSW

When patients hear "you have lymphoma," they need much more information before they can begin to understand which one of the 60 subtypes of lymphoma they have and how it may be treated. The Lymphoma Research Foundation (LRF) is a trusted source they can turn to in their quest for knowledge and assistance. In this interview, Diane Blum, MSW, CEO of the LRF and a member of the Patient Resource Patient Advisory Board, talks about the many ways the LRF helps lymphoma patients and their families. She also discusses the recent economic downturn's impact on cancer patients.

An oncology social worker, Blum has written and spoken extensively about the psychosocial needs of people with cancer. She is editor-in-chief of Cancer.Net, the patient website from the American Society of Clinical Oncology, and a founder of National Breast Cancer Awareness Month. For 20 years, she was executive director of CancerCare. Blum has won many awards for her work.

 

  1. How does the Lymphoma Research Foundation help people diagnosed with Lymphoma?

    Blum: The mission of the Lymphoma Research Foundation includes but goes far beyond funding lymphoma research. As important as funding research is, the LRF also has a strong "people" focus, offering information and help for individuals with lymphoma and their families.

    They can start their search for knowledge by visiting our website, www.lymphoma.org, which offers a wealth of information. They also may call our toll-free Lymphoma Helpline -- (800) 500-9976 -- to learn more about the type of lymphoma they're facing, treatment options, financial assistance programs, and clinical trials that might be appropriate.

    Through our Lymphoma Support Network, they may be matched with someone who's had a similar type of lymphoma for mutual support and encouragement. The LRF also offers limited financial assistance to help uninsured and underinsured people with unpaid medical bills.

    In addition, each year the LRF holds five educational workshops across the country and an annual leadership forum that alternates between New York City and San Francisco. These meetings bring people with lymphoma together to learn from and support one another and to hear the latest information about their disease from key opinion leaders on the national and international level. We usually have 400 to 600 people attending each of these programs.

    But many lymphoma patients can't attend, so we extend the reach of these meetings by making the presentations into webcasts and podcasts that anyone can access. We also do four to five teleconferences a year with CancerCare, featuring presentations on specific types of lymphoma, such as mantle cell, and reports from the American Society of Clinical Oncology and the American Society of Hematology. All of these are available on our website.

    The LRF also has chapters across the country that offer additional support for people facing this disease.

  2. Is advocacy an important part of the LRF's activities?

    Blum: Yes. We work collaboratively with other blood cancer organizations to build support for issues vital to people with lymphoma.

    Key issues include increasing federal funding for lymphoma research, including clinical trials, and for lymphoma education. We also push for access to high-quality care for all lymphoma patients, including follow-up care for survivors.

  3. How have the needs of lymphoma patients changed over time?

    Blum: These days, there's more burden on the patient to manage his or her illness and to ask questions -- but at the same time, patients have less time with health professionals. Lymphoma, like other cancers, is now treated mostly on an outpatient basis. That's better than being admitted to the hospital for treatment, but it means that patients are looking for ways to replace the support they used to get in the hospital.

    Furthermore, the way outpatient treatment is given is changing. For example, outpatient chemotherapy has usually been provided in an infusion room, giving the patient time to ask the nurse questions. But now, some patients are on their own, taking chemo pills at home. This makes it even more important to have credible resources to turn to for information and support.

  4. Has the economic recession been especially difficult for people with lymphoma and other cancers?

    Blum: Absolutely. Even in the best of times, people experience a crisis when they learn they have cancer. They have to pull themselves together, gather information, and figure out what to do. The cancer may create new balances or change responsibilities in their family. They also must deal with the impact on their daily life and their job as the cancer is treated over time.

    The recession has added to this already stressful situation. Job losses often lead to the loss of insurance and of the ability to pay for cancer-related expenses that insurance doesn't cover, such as transportation to appointments.

    In addition, the recession has caused many health care facilities to worry about their ability to stay financially stable. Some have eliminated positions that they may have considered not vital to day-to-day management, including, in some cases, positions for oncology social workers -- the very people who are trained to help cancer patients deal with the psychosocial and practical problems they face.

    That's why organizations like the LRF and resources like the Patient Resource Cancer Guide are more important than ever. The guide gives new cancer patients a user-friendly starting point for learning all they can about their diagnosis, and it directs them to other resources, including the LRF, for more information. It would be wonderful if everyone diagnosed with cancer could have the guide in his or her hands.

 

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