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Cancer Survivorship Forum: Expert wisdom

Cancer Survivorship Forum: Expert wisdom

Written by  Facing Cancer Together
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This special Smart Talk and Facing Cancer Together community forum explores what it means to survive a cancer diagnosis and how survivorship presents new challenges and opportunities to patients.

Our guests have spent their careers helping patients jump the hurdles of a cancer diagnosis.  The process that leads to survivorship is not easy and it does not always entail a return to optimal health.  Leslie Delp is the founder and bereavement specialist at Olivia's House: A Grief and Loss Center for Children in York.  Leslie had been in practice as a grief therapist for years and saw a need for a support program for children who were losing loved ones. 

"There was no one supporting the children," Leslie recalls.  "A parent, a sibling, a grandparent, a teacher, a friend – Olivia's House is for any child who experiences the loss of someone they loved and they are grieving.  It's a program of education and bereavement counseling to help them.  They can come before the death, during the death, after the death.  We have had children who were infants when their parents died or their sibling died and they come for support years later.  Everyone's grief is a unique fingerprint."

There is no cost to enroll in programs at Olivia's House which is supported by private donations, grant money and community fundraising events.

"Children need to meet other children where they are emotionally.  It's very important for them to hear another child feeling what they're feeling so they realize they are not alone," Leslie explains.  "That's where the educational and peer-support program comes into play.  Educating them about their body and taking the mystery away from what's happening to my head and my heart and my body during this very natural process known as bereavement.  What does it mean when I learn my mommy has cancer because my body reacts to that?   Just educating them empowers them to feel in control. "

nav_manDebra K. Witwer is a registered nurse navigator at PinnacleHealth-Fox Chase Regional Cancer Center.  She says a navigator is a relatively new position in cancer care.  It's designed to help "navigate patients over rough seas" in the "craziness of the health care system we work in today."  She takes patients from the point of diagnosis, through exams, tests, operations and recovery to create a continuum of care that ensures their survivorship is on the right path. 

"You hear the word cancer and your mind goes blank," Witwer notes.  "How do you live knowing that you survived cancer?  Some people choose to live from CAT scan to CAT scan worrying is it going to come back.  And others choose to just incorporate those tests into their life and find a way to move on and live as normal a life as they can, but remembering that there's surveillance and there are tests and things that they need to do."

Cancer is a lifelong journey.  Witwer explains, "People used to talk about hitting that five-year mark and saying, 'I'm cured.'  And that word remission is not used very much anymore in cancer care.  Remission is more for those things like leukemia and lymphoma, but truly many people live with cancer.  The American Cancer Society defines a survivor as anyone who is living with cancer.  That can be the day they were diagnosed.  That can be 30 years after they finished their treatment.  They are all survivors."

Witwer directs our viewers to access the ACS's Cancer Survivor Plan, a booklet that encourages patients to write down in detail their journey through treatment by accurately charting their medications, tests, appointments – all aspects of their care. 

"Patients don't ask enough questions," Witwer advises.  "You have to have a history of where you've come from, and then very importantly, how you move forward.  What's theplan for survivorship?  Patients have to take ownership of their care.  You should never walk out of doctor's office without knowing what the plan is."   Two essentials she recommends are the National Comprehensive Cancer Network's Ten Resolutions for Cancer Survivors and Ten Tips for Breast Cancer Survivors. 

The Rev. Dr. Ted L. Trout-Landen  is the director of Pastoral Care and Education at WellSpan Health in York.  "We have chaplains in all of our facilities who provide direct pastoral care to patients and families and staff as they deal with a health-care crisis," Rev. Trout-Landen says.  "You don't need to be religious to understand it or to receive it.  Pastoral care is when a trained professional chaplain works with a patient or family member to help them understand and define what helps them make meaning of the cancer and the crisis they are facing."

Rev. Trout-Landen says a diagnosis of cancer marks a huge change in a person's life that can trigger intense feelings of loss and anger.  Helping patients cope with those feelings is at the heart of pastoral care.  "If you think about the last time you or someone in your family was in a crisis, many of the things we say and do and think and feel sort of get worked up from the floorboards of our life," he adds.  "We start asking a lot of questions:  Why is this happening to me?  What did I do to deserve this?  How is this fair? In none of those questions did you hear the word God or religion, but essentially all of those questions are theological or spiritual at their core because they have to do with how am I making meaning of this situation?"

Often, Rev. Trout-Landen encourages patients to use the emotion of anger, and the energy it generates in their bodies, to produce positive actions like repairing a damaged relationship.  He'll share more of his insights on pastoral care Thursday night. 

Our final guest is Dr. Elizabeth C. Horenkamp, managing physician of Hematology Oncology Medical Specialists, Lancaster General Health.  She also leads a survivorship program at LGH.

These experts along with survivors in the live studio audience, provide insight and wisdom for those facing cancer in their lives.  Watch the video below to hear their conversation.

Click here to watch entire survivorship forum, including survivors discussing their personal experiences with cancer.

Related Video

Watch Surviving Cancer on PBS. See more from SMART TALK.

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