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Making a Difference: Susan Axler, A TTN Member With A Passion For the Cure

April 1, 2017

Are you or a loved one on a cancer or other medical journey?   Would you like to be able to learn more about the latest treatments and research, or talk to someone who has traveled this path before you, or get directly involved as a patient/research advocate? Then you need to meet TTN Philadelphia member Susan Axler, who found her passion while confronting her own cancer and is making a difference by helping others through their personal medical journey.

Sue has been living with breast cancer since 1988.  She was working full time as a 4th grade reading specialist, researched her options and her initial lumpectomy with radiation “was a piece of cake”.   She went on her merry way, meeting other pink-garbed new friends and moved on.  Four years later, the cancer reared its ugly head again.  After taking three weeks off for surgery and the start of chemotherapy, Sue was able to go back to teaching full-time.  

Sue had learned a great deal in the past four years, and decided to find out more and to see what patient advocates could contribute.  Sue began writing, speaking, attending conferences, sitting on major cancer grant review panels, listening and volunteering.  She found that large organizations like the America Cancer Society, Department of Defense and Komen value the patient perspective and she was eager to contribute.

Eight years after Sue’s recurrence came the dreaded metastasis, not unusual since 30% of first time cancer patients have cells that have escaped initial treatment. This was in 2000, and Sue had no ideas, no GPS guiding this new little-understood part of her journey.  At that time, less than 7% of breast cancer research was targeted to recurring, advanced, aggressive or metastatic cancer types and few of the existing support organizations had programs in place to provide guidance.  Sue retired early from teaching her wonderful students and advocacy became a full-time job.  
  
Sue was asked to become part of the American Cancer Society’s “Advanced and Recurrent Reach to Recovery” program which addressed the elephant in the room, the spread to other organs.  She “met” dozens of these cancer patients as she handled referrals and trained new volunteer advocates.  These women shared the same concerns, same scans, many of the same therapies with a need to understand and be listened to by someone like them, someone in ultimate shock that the breast cancer they had “beaten” through “courage” was laughing back at them.  As a Reach to Recovery volunteer, Sue spent countless hours talking to patients and caregivers, hearing their health problems, serious financial needs, insurance woes, their stories about children and sometimes their grandchildren.  They don’t need empty promises, they approach their new fate pessimistically, they cannot imagine the future, they pass blame, they cry, they scream, they give up and we listen.  The words pour from them.  What can we say, how can we guide, what help can we offer?

Sue was part of the team which wrote the program manual for these specific breast cancer patients, providing guidance on where they can go for help, getting second opinions, connecting them with support groups.  While Sue is not a medical expert or authority, she can listen, encourage, refer and understand.  And she has had a positive impact on the amount of research and support directed to recurring and advanced stages of cancer and can point to many organizations such as Living Beyond Breast Cancer, Metastatic Breast Cancer Network, Metavivor, SHARE, Komen Advocates in Science, and Wellness Community now working with advanced cancers.

Sue is currently focused on increasing her own level of knowledge by attending conferences such as the upcoming “National Conference for Those with Advanced Breast Cancer” in Philadelphia; injecting a cancer patient’s perspective into the grant review process for Department of Defense and other research organizations; inspiring non-scientists to learn more about the disease and attend conferences; and encouraging others to make a difference in ways that go beyond fundraising.  Sue actively encourages and brings along patients, caregivers and advocates to attend conferences as they are educational, expose them to the newest and most important medical research/therapies, include panels discussing present problems and the future, provide support and networking opportunities and enhance patient and advocate effectiveness.  This work has opened up a whole new world of connections and helped many find purpose and meaning on their journey.

Sue has had an immense personal impact on our TTN Chapter and several of our members.   Joanne Bowes, our SIG Vice-Chair, met Susan in an art class when the instructor, who knew they were both breast cancer survivors, introduced them.  Joanne was 10 years out of treatment and looking for something that went beyond fundraising in the breast cancer arena. Sue encouraged her to attend conferences and sponsored her participation, even while Sue dealt with her own health challenges.  Joanne was asked to be a consumer advocate on a clinical trial at UPenn and is working with Sue on this trial.  Sue’s energy and devotion to this cause continues to amaze and inspire Joanne.  

In addition, after Lorraine Gordon, our Chapter’s Treasurer and Foodie Group Chair, lost her husband in 2008 from melanoma/skin cancer, Lorraine and Sue became friends through TTN.  Sue is always inspiring Lorraine to continue helping patients through her volunteering and advocacy efforts.  Lorraine established the Roger A. Gordon Melanoma Fund at University of Pennsylvania Health System (UPHS), became an active advocate and volunteer at the Abramson Cancer Center, interacts with pharmaceutical reps and patients at the ACC Conferences and provides cancer education.  While Lorraine is inspired by Sue’s energy and dedication, Sue is equally thrilled to see Lorraine thrive and benefit from her many contributions.

Sue has brought several other TTN cancer survivors into this world of advocacy and research.  One member was accepted into the Survivor/Scientist Program for all types of cancer as part of the American Association for Cancer Research.  She was chosen as an important member of the team at a university hospital to speak with patients, new physicians and oncologists about patient needs and how they can work together.  Several others have become speakers, writers and members on cancer panels. 

Sue is well aware that despite a cancer diagnosis, we do move on.   She shared a story about a friend who was recently diagnosed with cancer and found herself at an amusement park with her family and had to confront her profound fear of roller coasters.  She figured “if I can face cancer, I can face this ride.   The worse thing that can happen is my wig will end up in the lost & found!”   Seems that laughing together is also good medicine.

We all know someone….yourself, a spouse or partner, a parent or child, a family member or friend……who is dealing with cancer or other serious medical issues.   Within our TTN chapter, there are many women living with a chronic disease.  We hope Sue's story may inspire you to want to learn more about the world of treatments, how to get involved in patient advocacy, attend local conferences and get involved with innovative grants and panels.  You might want to learn how to decipher new research or share with others who want to make a difference.  Sue is very open to hearing from you and helping you navigate this landscape.  

Sue’s work inspires us to give our very best.  And as she says, “often we have successes, we do, we really do!”  While Sue can’t possibly know the outcome from the hundreds of referral cases she has handled as a patient advocate, she still honors and remembers each one of them when racing in the relay for life.

Thank you, Sue, for allowing us share your story and for the contributions from Joanne Bowes and Lorraine Gordon.
 
Contact:  Sue Axler (maxler2@aol.com
 
Editor’s Note:   If there is enough interest in the Philadelphia Chapter, we will hold a panel discussion for people who want to know more specifics about this work and how to get involved.