(ARA) – Seventy year-old Jane Fretz is a loving wife, a dedicated mother of five, and the rock of her family. She is always the first one to offer support when someone is going through a tough time, and the first one to receive good news from relatives. So when she was diagnosed with indolent non-Hodgkin’s lymphoma five and a half years ago, roles reversed and her family became her rock.
Non-Hodgkin lymphoma (also known as NHL) is a cancer that starts in cells called lymphocytes, which are part of the body’s immune system. The American Cancer Society (ACS) estimates that in 2010 alone, more than 65,500 Americans will be diagnosed with NHL, and four out of 10 lymphoma cases will be of the indolent, or slow growing, form.
Throughout her cancer experience, Fretz’s family was not the only support network that helped her get through this time in her life. She tapped into her local Cancer Support Community (CSC) affiliate for support groups, educational workshops and mind/body classes. The CSC, uniting The Wellness Community and Gilda’s Club Worldwide, provides high-quality psychological and social support through a network of nearly 50 local affiliates, more than 100 satellite locations and online.
Introduced to the CSC by her husband’s friend, Fretz felt immediate ease when she went to her first meeting. There were people there going through the same experience as her, and they were bonding over their condition. Fretz soon learned firsthand that one of the CSC’s goals was to provide people dealing with cancer resources and programs designed to help patients and their families navigate through this moment in time.
One of CSC’s newest educational initiatives, Framing Life With Lymphoma, was recently launched with support from Cephalon Inc. Created through input from an expert Steering Committee, a patient focus group, and a national survey fielded by Harris Interactive of 150 hematologists/oncologists and 133 indolent lymphoma patients, this program is research-based and provides lymphoma patients with easy-to-use tip sheets outlining ways to approach each conversation with their healthcare team across the course of their cancer journey – from diagnosis through treatment. The patient tip sheets, survey results and other program information can be found at www.FramingLifeWithLymphoma.org.
“We are pleased to provide patients with the Framing Life With Lymphoma program, and hope it will become an important resource for the lymphoma community,” says Kim Thiboldeaux, president and CEO of the Cancer Support Community and advisor for Framing Life With Lymphoma. “A clear majority of patients and physicians reported that discussion materials would improve their conversations. That is exactly what this program aims to do – provide patients with valuable resources – such as our patient tip sheets – to ensure that areas of concerns are covered during appointments.”
Throughout her years of battling, and ultimately achieving remission from, indolent NHL, the CSC became a staple in Fretz’s life. She became a dedicated board member, and through that position was able to participate in a patient focus group that helped the CSC develop the program’s tip sheets.
“I am proud to have been involved in the focus group to help develop the tip sheets, and I am really excited to be able to share this program with everyone,” Fretz says. “Some of the tips that I really stress to my family and friends that are going through a similar diagnosis are 1. establish your network; 2. be informed on your disease; and 3. you’re not alone – there are support systems out there for yourself, and your family.”
Some of the other tips featured on the Framing Life With Lymphoma tip sheets include:
* Bring questions with you and write everything down
* Engage your support network
* Speak up
* Have a 24/7 plan
* Know your cancer – it’s unique
* Understand your healthcare team and know your “team captain”
To learn more about Framing Life With Lymphoma, and to contribute feedback that will help inform future materials, please visit www.FramingLifeWithLymphoma.org.
