Talking the Talk: Providing Support Through Living Beyond Breast Cancer’s Helpline

By: All for the Breast Editorial Team, May 8, 2017

BY JENNY BURKHOLDER

 The Avon Breast Cancer Crusade is proud to support Living Beyond Breast Cancer and its Breast Cancer Helpline.

Living Beyond Breast Cancer’s Breast Cancer Helpline is a service that lets people speak by phone with a trained volunteer who has been diagnosed with breast cancer and who has faced similar circumstances or shared a common concern. The volunteers provide emotional support, share practical information and give comfort to callers who have been diagnosed with breast cancer.

 The Helpline was started in 1996. The service currently has close to 100 trained volunteers across the country. The volunteers come from a variety of backgrounds, and range in age from 29 to 71 at their time of diagnosis. The Helpline supports nearly 1,000 callers per year. 

 Call the toll-free Helpline at (888) 753-LBBC (5222). Helpline calls are answered live Monday to Friday from 9 a.m. to 9 p.m. ET. At all other times, just leave a message; calls are returned within 24 hours and often much sooner.

Jenny Burkholder, a breast cancer survivor, shares her experience as a volunteer for the LBBC helpline:

As I look at the women photographed in my helpline training session at the Philadelphia Marriott West in April 2014, I am simultaneously saddened and heartened: saddened by looking at two women, both wearing rainbow-colored leis and huge smiles, who died months after our training; and heartened by the faces of the many women, like myself, who continue to donate their energy and spirit to volunteering for  LBBC’s Breast Cancer Helpline.

On the LBBC Helpline, volunteers give callers a safe and supportive break from what’s going on around them. Here, we slow down and allow callers to step back and reflect; ask questions; be listened to; cry, if they need to; and feel a connection with the person on the other end who understands what they’re going through. The Breast Cancer Helpline women are an amazing group of trained volunteers who offer callers support and the gift of being fully present for someone else.

The LBBC Helpline training took place over a weekend, and we were in the strong and capable hands of Dorel Shanon and Lynn Folkman Auspitz, breast cancer survivors themselves. Women came from Kansas, Connecticut, California and Ohio. Some were living with stage IV breast cancer, some had been out of treatment for years, and some, like myself, were still reeling from the effects of a breast cancer diagnosis, treatment and recovery, trying to piece our lives back together.

But we had one common goal: transform what we had experienced into something positive for people going through a breast cancer diagnosis. Over the course of the next three days, we learned things about each other: who loves her oncologist, who found support in unexpected places and who was diagnosed before her 45th birthday.

We learned the value of “listening with presence” and how when one listens more and talks less, she helps callers feel empowered and like they “own the issue.” We learned that when callers “believe they have the resources within themselves to manage the situation,” they feel more in control. We role played, learning about the stages of a phone call, helping callers define the problem, then exploring it with them. We practiced “communication clarifying skills” – listening, focusing, rephrasing, reflecting, and clarifying underlying feelings. We explored what it meant for us to be fully open, moving away from a “fixing” mindset to a “self discovery” process. And we learned how to ask open questions that are meant to help callers find their own answers.

In my work as an LBBC Breast Cancer Helpline volunteer, I have had many rewarding and challenging calls, including those from match callers. These callers want to talk to someone who has had similar circumstances or surgeries. This year, I have spoken with women who wanted to ask about TRAM (transverse rectus abdominis) flap reconstructive surgery, the route I chose when thinking about reconstruction. According to the American Society of Plastic Surgeons, in 2012 only about 19,000 women chose this type of reconstructive surgery. On my match calls, I am often answering questions about surgery and recovery, mindful that my story is only one story.

Other match calls are from women who have small children. When I was diagnosed in 2012 at age 40, I had two little girls, one three and the other six. Women in this situation like to talk to other women in similar situations about whether, what and how to talk to our children about our diagnosis and treatment. For these calls, it is important for a caller to find her own language.

Recently, I spoke with a woman who might as well have been me five years ago. This was a particularly rewarding call because I was able to listen to her, with all of the experience I have gained over the last five years, and hear how she was already taking care of herself and recognizing her own strengths and challenges. I listened, marveled at how deeply she knew herself, and then reflected to her that what she was saying took me years to realize. I applauded her thoughtfulness and commitment to bringing balance into her life. She thanked me for my time, which I appreciate, but what always strikes me is how much strength these women have within them. My job is to reflect that for them.

Ultimately, callers benefit from the Helpline because they no longer feel alone, silenced, or judged. It is our job to make sure this happens every time we speak with them.

For more than 25 years, Living Beyond Breast Cancer has connected people with trusted breast cancer information and a community of support. And the Avon Breast Cancer Crusade is proud to partner with such an inspirational organization. For more information, visit LBBC.ORG.