Where to Find Support When You Have Non-Hodgkin's Lymphoma

Health Writer
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Hearing that you have cancer is never welcome, but there is a whole world of support out there to help you every step of the way when you have non-Hodgkin’s lymphoma (NHL).

“A diagnosis of a cancer such as lymphoma brings fear and uncertainty, not only to the patient, but to all of his or her family members and loved ones,” says Andrea Greif, spokesperson for the Leukemia & Lymphoma Society (LLS).

“Where can I get good information about my cancer and treatments? Should I get a second opinion? What are the right questions to ask my doctors? Is there anyone I can talk with who has been through this? Where can I get financial assistance to help cover the cost of my treatment? How do I talk with my loved ones and children about my disease?”

“These are just a few of the hundreds of questions that patients and their families will have, and it is important for them to know they don’t have to go through this alone,” she says.

Greif says that the Leukemia & Lymphoma Society offers resources including education and support for NHL patients both newly diagnosed and who have had a diagnosis for some time.

“One of our most vital services is our Information Resource Center, staffed by health care specialists who work one-on-one with patients and caregivers to provide personalized disease and treatment information, and help to find clinical trials,” she says.

Although you may have family and friends surrounding you during diagnosis, treatment, and survivorship, oftentimes that is not enough. You may feel the need and desire to connect with others who have been there, done that and who know what you are going through firsthand and how you are feeling physically, mentally, and emotionally. You may be looking for counseling or stress management help even years into the survivorship stage.

Where to look for help

Begin at your health care center, suggests Caroline Edlund, LCSW-R, to find effective support.

“Asking for and accepting help can bring an enormous sense of relief,” says Edlund, who is the online support group program director at CancerCare. “A member of your health care team, such as an oncology social worker, can help find local resources and programs that fit your needs.”

There are myriad organizations, support groups, and resources that offer both in-person and online assistance on your journey. You can find both general cancer groups and those specifically targeting those with NHL. Some offer videos, webinars, chat rooms, and even pair you with a survivor with a similar diagnosis.

Specific resources

Spend some time checking out the resources below to see which ones can help you, your family, and your caregivers.

  • Cancer Survivors Network: The American Cancer Society has a vibrant community of people whose lives have been touched by cancer. Here you’ll find discussion boards, chatrooms, and information for all cancers as well as for your specific cancer type.

  • Leukemia and Lymphoma Society: Patients and caregivers looking for support and information on blood cancers can speak one-on-one with an information specialist who can assist through treatment, financial, and social challenges. All specialists are oncology social workers, nurses, and health educators. Call 800-955-4572, M-F, 9 a.m. to 9 p.m. ET. They also offer online chats, peer-to-peer support, caregiver support, and more. Sign up for their online social network as well.

  • Lymphoma Research Foundation: The LRF has a wide range of support and educational services for people with lymphoma and their loved ones. They provide a helpline with trained staff members available to answer your question about diagnosis and treatment options. Call 800-500-9976, M-F, 9:30 a.m. to 7:30 p.m. ET.

  • The Lymphoma Support Network: The Lymphoma Support Network (part of the LRF) is a one-to-one peer support program that connects lymphoma patients and their caregivers with volunteers who have had similar experiences and understand your particular challenges.

  • Non-Hodgkin’s Lymphoma Cyberfamily: This global network and support group guides, educates, and supports patients and caregivers.

  • CancerCare: Find free support services that include online or telephone counseling, publications, and financial and co-pay assistance. CancerCare also offers a 15-week online support group for people diagnosed with a blood cancer who are currently receiving treatment. Talk to a CancerCare oncology social worker by calling 800‑813-4673, M-TH, 10 a.m. to 7 p.m. ET and Friday 10 a.m. to 5 p.m.

See more helpful articles:

How to Care for Your Caregiver When You Have Non-Hodgkin's Lymphoma

Program Ideas for Support Group Meetings

Ask the Expert: David Fisher, M.D., on Non-Hodgkin’s Lymphoma Diagnosis, Treatment