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Bringing Together Leaders in Cancer Survivorship

Bringing Together Leaders in Cancer Survivorship to Build Better Programs for Cancer Survivors

November 13

New Haven Lawn Club 193 Whitney Avenue • New Haven, CT 06511

Now Open! “ The CTC offers an incredible community of support and resources. Whether it is a meditation class, a support group or the bike ride, living well as a Survivor is celebrated.� Amy Nessel, Cancer Survivor

Fitness Nutrition Psychosocial Support 12-Week Wellness Program

Offering programming for cancer survivors and caregivers

Register online for classes at

250 Pequot Avenue Southport, CT 06890


The Connecticut Challenge Survivorship Summit Presented by: Connecticut Challenge 250 Pequot Avenue Southport, CT 06890

Planning Committee Hilarie Carrieri, MPH CT Challenge Louis Gonzalez, MA, MPH, HA John D. Thompson Institute of the CT Hospice Kenneth Miller, MD CT Challenge Medical Advisory Board Julia Pemberton Director, Communications & Public Affairs CT Challenge

The conference learning objectives 1 Identify several phases and issues of cancer survivorship. 2 Describe the importance of genetic counseling to cancer survivors. 3 List the benefits of exercise in cancer survivors’ lives. 4 Identify the psychosocial impact that cancer has on survivors. 5 Describe several wellness solutions for cancer survivors.

Sharyn Taymor Director, Survivorship Network & Outreach CT Challenge

Accreditation and Disclosure Statements This activity has been planned and implemented in accordance with the Essential Areas and Policies of the Accreditation Council for Continuing Medical Education (ACCME) through sponsorship of the John D. Thompson Hospice Institute for Education, Training and Research, Inc., The John D. Thompson Hospice Institute for Education, Training and Research, Inc. is accredited by the Accreditation Council for Continuing Medical Education (ACCME) to provide continuing medical education for physicians. The John D. Thompson Hospice Institute for Education, Training and Research designates this education activity for a maximum of 6.0 AMA PR A Category 1 Credits™. Physicians should only claim credit commensurate with the extent of their participation in the activity. Application has been made to the National Association of Social Workers, CT chapter, for 6.5 CEC’S.

Nurses will receive a certificate of attendance for a CME accreditation program for 6.5 credit hours. If CE credits are required, the nurse must present the CME attendance certificate to his/her respective nursing accreditation association for consideration. The materials presented in this book may not be used, transmitted, posted or communicated without the express permission of the authors or the Connecticut Challenge. Disclosure Planning members and speakers made full disclosure and there are no commercial or financial interests or conflict with the content of the presentations.

Dear Friends, I would like to personally welcome each of you to the 3rd Annual CT Challenge Survivorship Summit. It is an exciting time in the field of survivorship. For the CT Challenge, the last year has been marked by tremendous growth, as we have become a much-needed resource for cancer survivors as they come to terms with and learn to manage their healthcare issues. With 13-million cancer survivors in the United States, and 171,850 in Connecticut, we are laser focused on our mission to empower cancer survivors to live healthier, happier and longer lives. Together with our partners throughout the state, we are making a difference in the lives of cancer survivors. CT Challenge programs impacted over 21,000 cancer survivors in the last year. Our hospital partners in the CT Challenge Survivorship Network impacted 38, 483 cancer survivors through a variety of unique programs. The Network itself has grown from 5 charter members to include 18 of Connecticut’s finest cancer centers and community hospitals. With the opening of the CT Challenge Center for Survivorship in October, we are entering a new phase in the growth of our organization. We will continue to lead the way, developing model programs for cancer survivors and piloting research that will help to improve care for the growing population of cancer survivors. In order to succeed we will continue to seek out new partners, work together to share best practices with our existing hospital partners and cancer support organizations, and look for innovative ways to bring resources and care to those we serve. Every day we hear stories of the amazing courage and determination demonstrated by the many cancer survivors who benefit from programs we fund. I would like to thank each of you for attending and bringing your expertise to the Summit. You, as organizational leaders, have the vision, the knowledge, and the imagination to help us pave the way for a better world for cancer survivors. You are truly our greatest asset for the future and the CT Challenge could not be successful without your support and leadership. Sincerely,

Jeffrey S. Keith President & CEO

Agenda 8:00 – 8:30

Breakfast and Registration

8:30 – 8:45

Opening Remarks Sharyn Taymor Director, Survivorship Network & Outreach CT Challenge Pat Sclafani Member, CT Challenge Survivor Advisory Board

8:45 – 9:05

CT Challenge Center for Survivorship Jeffrey Keith President & Co-Founder, CT Challenge Tamara Deyle, MS, CET Program Director, Center for Survivorshp

9:05 – 9:35

Genetic Counseling and Testing for Cancer Survivors Ellen Matloff, MS Director, Cancer Genetic Counseling Yale Cancer Center

9:35 – 10:05

Post-Traumatic Stress Karen Syrjala, PhD Co-Director, Survivorship Program Fred Hutchinson Cancer Research Center, Seattle

10:05 – 10:20


10:20 – 10:50

Post-Traumatic Growth Mitch Golant, PhD Senior VP, Research and Training Cancer Support Community, Los Angeles

10:50 – 11:05


11:05 – 11:45

How Do We Meet Wellness Needs? Karen Syrjala, PhD

11:45 – 12:15

Benefits of Different Types of Exercise on Various Cancer Outcomes in Cancer Survivors Melinda Irwin, PhD, MPH Associate Professor of Epidemiology and Public Health Yale School of Medicine

12:15 – 12:30 12:30 – 1:30 1:30 – 2:00

Questions Lunch The Landscape of Survivorship in Connecticut – Survey Monkey presentation Kenneth Miller, MD Acting Director for the Division of Hematology and Medical Oncology at Sinai Hospital, Baltimore CT Challenge Medical Advisory Board

2:00 – 3:00

Breakout Sessions • How Do We Deal with Core Symptoms? Fatigue, Pain and Distress Karen Syrjala, PhD • Post-Treatment Survivorship Programs That Are Effective Mitch Golant, PhD • Exercise and Diet Studies in Cancer Survivors Scott Capozza, MS, PT Linda Gottlieb, MA, CPT, CET Maura Harrigan, MS, RD, CSO • How to Grow Your Survivorship Program Kenneth Miller, MD • Facilitating Support Groups for Underserved Populations Kate Lieder, MA, MFT

3:00 – 3:40

Distress Screening, Personalized Medicine and Quality of Life Mitch Golant, PhD

3:40 – 4:00

What Did We Learn Today? Wrap Up Kenneth Miller, MD

The Conference Learning Objectives:

1. Identify several phases and issues of cancer survivorship. 2. Describe the importance of genetic counselling to cancer survivors. 3. List the benefits of exercise in cancer survivors’ lives. 4. Identify the psychosocial impact that cancer has on survivors. 5. Describe several wellness solutions for cancer survivors.

Bios Scott Capozza, MS, PT Scott received his master’s degree in physical therapy from Ithaca College in 1999. In 2006, he was part of the initial medical team that started the CT Challenge Survivorship Clinic at Yale Cancer Center. At the survivorship clinic, he works alongside a medical oncologist, dietician and social worker to provide education and support to cancer survivors of all diagnoses as they enter into long term survivorship. Scott also currently works as a lead trainer on the HOPE exercise study. The HOPE study is funded by the National Institute of Health and based out of the Yale School of Public Health. The aim of the study is to look at the effects of cardiovascular exercise and strength training on breast cancer survivors who are experiencing side effects from AI hormone therapy. Scott leads the participants through a weekly exercise routine, making modifications as necessary based on each woman’s individual needs. When he is not working with cancer survivors, Scott works as a physical therapist for the Trumbull (CT) Public Schools.

Tamara Deyle, MS, CET, Program Director, Center for Survivorship Tamara Deyle is a graduate of Ithaca College, where she earned a Bachelor’s Degree in Exercise Science with a concentration in nutrition and health, and the University of South Carolina where she earned her Master’s Degree in Exercise Physiology. Prior to going to the University of South Carolina, Tamara gained vast research experience while working in the Human Performance Lab at the United States Air Force Academy in Colorado Springs, CO under the direction of Dr. Michael Zupan and Al Wile. As an exercise research assistant Tamara conducted a variety of physiological tests on the cadets of the academy and helped to assist in collecting and analyzing research pertaining to ocular vision training. Tamara was also part of a research study conducted with USARIEM under the direction of Chuck Falco. The research investigation was of the “effect of

long-term moderate altitude residence on acute mountain sickness and susceptibility and physical and cognitive performances at 4300 m.” Tamara’s personal experience with cancer started in 2009 when her mother was diagnosed with ovarian cancer. As an exercise physiologist Tamara acknowledged the gap in the medical community between support that is given during a cancer patients treatment and post treatment. Tamara sought after the only certification to train cancer survivors that was developed by the American College of Sports Medicine and the American Cancer Society. In 2011, Tamara became the Program Director for the first Center for Survivorship in the nation.

Mitch Golant, PhD Dr. Mitch Golant is a health psychologist and Senior VP Research & Training for the Cancer Support Community (CSC). He has traveled throughout the world introducing CSC’s Patient Active Concept to international thoughtleaders and psychosocial oncologists. He has been with CSC for over 28 years where he supervised and trained CSC’s professional clinical staff. He has facilitated over 6,000 support groups for people with cancer and trained over 400 professionals nationally and internationally in CSC’s Patient Active Support Group model. Dr. Golant is widely recognized as a pioneer in the use of information technology in cancer education and support through the delivery of online support groups. He was central to the launch of the award-winning Cancer Support Community Online in both English and Spanish and Group Loop: Teens. Talk. Cancer. Online. He has presented globally on CSC’s Patient Active programs and evidencebased research. He has previously served on the Board of Directors for the American Psychosocial Oncology Society. In October 2011, he received the Los Angeles County Psychological Association’s Distinguished Contribution to the Profession of Psychology Award. Dr. Golant is the contributing editor to the Essentials of Psychosocial Oncology Handbook (2006) and The Psychiatric and Psychological Dimensions of Pediatric

Bios Cancer Symptom Management (2008). He is also the co-author of seven books including Reclaiming Your Life After Diagnosis: The Cancer Support Community Handbook (BenBella 2007 revised 2012), What To Do When Someone You Love is Depressed (Holt—updated and expanded 2007), and a contributing author of PsychoOncology, 2nd Edition (Oxford University Press 2010).

Linda Gottlieb, MA, CPT, CET Linda Gottlieb has an extensive career in the fitness industry. She has developed and presented hundreds of exercise/wellness classes, has been director of a 30,000 square foot full service health club, and has managed fitness facility projects for luxury hotels. Along with traditional in-home personal fitness training and worksite wellness programming, Linda specializes in individualized telephone/internet coaching, working closely with medically challenged individuals seeking to improve their health and their life with exercise. Ms. Gottlieb’s BA in Psychology, along with her Masters in Instructional Design, prepared her to successfully identify how to motivate her clients, work through roadblocks and stages of behavioral change. She excels at presenting fitness and active lifestyle methods in an easy to understand manner, while engaging her clients. Linda received the Presidential Sports Award in 1988 and 2003, multiple industry certifications from IDEA, ACE, and AFAA, and is a member of The American Institute of Fitness Educators, The Association of Fitness by Phone® Coaches and Reebok Instructor Alliance. One of the first nationally certified Cancer Exercise Trainers sanctioned by the American Council of Sports Medicine and the American Cancer Society, Gottlieb is also the first certified Cooper Institute Active Living Every Day behavior change program facilitator in the state of Connecticut. She is currently on staff at Yale University as a cancer exercise trainer on gynecological cancer clinical trials.

Maura Harrigan, MS, RD, CSO Maura Harrigan is a Registered Dietitian with over 25 years of clinical and administrative experience in research, hospital and private consulting venues. She is a Board Certified Specialist in Oncology Nutrition from the Academy of Nutrition and Dietetics. Ms. Harrigan currently directs the nutrition counseling program at the Adult Survivorship Clinic at Yale Cancer Center where she works with men and women to develop their individual nutrition strategy as part of their Survivorship Care Plan. Ms. Harrigan is the project director of the Lifestyle, Exercise and Nutrition (LEAN) Study at the Yale School of Public Health. The LEAN Study is evaluating innovative techniques to promote healthy eating, increased physical activity and life-long weight management in breast cancer survivors.

Melinda L. Irwin, PhD, MPH Melinda L. Irwin, PhD, MPH is an associate professor (with tenure) in the Yale School of Public Health and co-program leader of the Cancer Prevention and Control Research Program at Yale Cancer Center. Dr. Irwin’s research focuses on how lifestyle/behavioral factors influence cancer risk and survival. She is particularly interested in examining the biological mechanisms that mediate the relationship between obesity, physical activity and women’s cancers (breast, ovarian and uterine). Dr. Irwin is the principal investigator of a number of research studies at Yale University and collaborates on various national projects and initiatives focused on lifestyle factors and cancer survivorship. She has received funding from the National Cancer Institute, American Cancer Society, Komen for the Cure, American Institute for Cancer Research, Lance Armstrong Foundation and has published her research findings in top medical journals. Dr. Irwin also serves on various national advisory committees to develop consensus statements on physical activity, diet, weight and cancer prevention and control.

Bios Jeff Keith, President & CEO, CT Challenge Jeff is the inspiration for the Connecticut Challenge as well as its Co-Founder and President. Jeff is a 38 year cancer survivor; he was diagnosed at age 12 with an osteogenic sarcoma. Two weeks after his diagnosis, Jeff’s right leg was amputated above the knee and he underwent 18 months of chemotherapy. Jeff would go on to be a high school ski team captain and a NCAA lacrosse team goalie at Boston College. Jeff’s philanthropic career took off after college when he became the first amputee to run across the United States. He raised over $1 million for the American Cancer Society, and covered 3,300 miles in just nine months. In addition to the run, Jeff has founded three non-profit organizations: The Connecticut Challenge, Swim Across America and Swim Across the Sound. Jeff entered the MBA program at the University of Southern California and embarked upon a career in investment banking, with 18+ years as a high yield bond salesman at Salomon Brothers, Merrill Lynch and UBS. As a cancer survivor and philanthropist, Jeff has focused on leading initiatives through development and fundraising in the cancer arena that range from discovery research to state-of-the-art cancer survivor programs at institutions like the Yale Cancer Center, Dana Farber Cancer Institute, Memorial Sloan Kettering Cancer Center, St. Vincent’s Medical Center, and now the CT Challenge Center for Survivorship.

Kate Lieder, MA, MFT Kate Lieder has been involved with the CT Challenge since it’s inception in 2005 and has ridden in the annual bike ride all eight years. As Director of Psychosocial Services for the CT Challenge Center for Survivorship, Kate is responsible for running our outreach support programs for underserved women and children in Bridgeport, CT as well as leading and/ or overseeing our cancer support groups at the Center and coordinating all related psychological care for cancer survivors and their families.

After graduating from the University in Vermont, Kate spent 10 years working in Television Production for CBS in New York, before deciding to stay home to raise her two children. When her youngest child started school she went back and earned her Masters in Marriage and Family Therapy from Fairfield University. In 2008 Kate was diagnosed with breast cancer, and has since become a strong proponent for early detection. Kate is passionate about the work the CT Challenge is doing and the importance of helping cancer survivors negotiate the complex challenges they face on a daily basis. As well as working for the CT Challenge, Kate works for a group private practice in Ridgefield, CT, Family Therapy Associates. In her free time Kate enjoys doing anything outside with her family and friends. Her favorite hobbies include cycling, running, yoga, hiking, skiing, reading and photography. Kate lives in Ridgefield, CT with her husband, Nick and their two children.

Ellen T. Matloff, MS Ellen T. Matloff, MS is a Research Scientist in the Department of Genetics, and the Director of Cancer Genetic Counseling at Yale Cancer Center/Yale School of Medicine in New Haven, CT. Matloff received her Bachelor’s degree in Biology from Union College in Schenectady, NY and her Master’s degree in Genetic Counseling from Northwestern University. Ellen came to Yale in 1995 to start the Cancer Genetic Counseling program, which is now one of the largest in the country. She has received several research grants, lectured internationally on cancer genetics, and published extensively on the topic of cancer genetic counseling and testing. Matloff is also a plaintiff in the well-known BRCA patent case against Myriad Genetic Laboratories.

Bios Kenneth Miller, MD

Karen Syrjala, PhD

Dr. Kenneth Miller is is a cancer survivorship expert with the Division of Hematology and Medical Oncology at the Alvin and Lois Lapidus Cancer Institute at Sinai Hospital of Baltimore. He is a board-certified specialist in medical oncology (cancer), and a sub-specialist in hematology (blood disease).

At the Fred Hutchinson Cancer Research Center in Seattle, Dr. Syrjala is a Member and Director of the Biobehavioral Sciences Department, and Co-Director of the Survivorship Program (one of seven U.S. members of the LIVESTRONG Foundation supported Survivorship Center of Excellence Network). At the University of Washington School of Medicine, she is a Professor in the Department of Psychiatry and Behavioral Sciences. She mentors numerous junior faculty and fellows in cancer research across disciplines, and provides clinical services to oncology patients at the Seattle Cancer Care Alliance. She has been on many journal editorial boards including Pain and the Journal of Cancer Survivorship. Among other national responsibilities, she has chaired the Annual Advisory Panel for the Behavioral Research Center of the American Cancer Society, and has been elected a Director-at-Large for the American Pain Society.

Dr. Miller is widely considered an expert in the field of oncology in all aspects of cancer survivorship. During his tenure at the Yale Cancer Center, Dr. Miller founded the Connecticut Challenge Cancer Survivorship Program, a multidisciplinary program providing care for cancer survivors. Dr. Miller also served as the Director of the Lance Armstrong Cancer Survivorship Clinic at the Dana-Farber Cancer Institute at the Harvard Medical School. Dr. Miller has spoken frequently around the country on survivorship issues, with particular emphasis on the importance of caregiver empathy. A graduate of Tufts University School of Medicine, Miller completed his internship and residency in Internal Medicine at the YaleNew Haven Hospital Yale School of Medicine, followed by a fellowship in Hematology at the National Institutes of Health. He then trained in Medical Oncology at the Johns Hopkins Medical Center, where he developed special training in the treatment of breast cancer. He is the author of “Choices in Breast Cancer” (Johns Hopkins Press, 2008), “Medical and Psychosocial Care of the Cancer Survivor” (Jones & Bartlett Publishers, 2009), and “Excellent Care for Cancer Survivors.” (Praeger Press, 2011).

Dr. Syrjala has contributed to development of a number of national cancer treatment guidelines, particularly in pain and symptom management and for graft-versus-host disease. Her research and program development have focused on cancer survivorship, including examining long term outcomes and treatments for hematopoietic cell transplantation (HCT) recipients and other cancer survivors. In longitudinal, prospective studies, survivors have been followed for over 10 years, determining neurocognitive recovery, sexual, emotional and physical function trajectories and caregiver needs after HCT. More recent studies are targeting the biological and behavioral bases of musculoskeletal complications in cancer survivors, strategies for meeting cancer survivor health needs, exercise interventions for survivors, and testing internet, social media and texting methods for meeting survivor health, symptom, emotional and social needs.

This program is supported in part by:

Aetna, Inc.











Survivorship Network The CT Challenge empowers cancer survivors to live healthier, happier and longer lives by creating and funding unique programs, offering credible resources and building a community of support.


of adults diagnosed with cancer this year will be surviving in 2017.


of children diagnosed this year will be surviving in 2022.


of families will care for a family member with cancer.

CT Challenge Survivorship Network was launched in May 2009 with a mission to improve the lives of the137,000+ cancer survivors in Connecticut by making quality survivorship care accessible to all. The Survivorship Network has grown from a handful of programs into a robust network of survivorship programs at over half of the leading hospitals and cancer centers across the state.

Members of the Network served the needs of over 38,000 cancer survivors in 2011

In addition, the CT Challenge provides a comprehensive online resource for survivors and their families at, where they can learn about the issues cancer survivors face and find resources that can help. Members of the Survivorship Network are committed to providing cancer survivors with comprehensive survivorship care. The CT Challenge is committed to building the Network so that every survivor in Connecticut has access to the highest quality survivorship care. Many Network Members have programs that are free of charge, so that survivorship care is available to all who need it. Members of the Survivorship Network are eligible for grants to support their survivorship programs and can take advantage of the Team Challenge grant program through the CT Challenge Bike Ride. Members also participate in an annual medical symposium, the CT Challenge Survivorship Summit.

Survivorship Network Members CT Challenge Survivorship Clinic at Yale Cancer Center

Bridgeport Hospital’s Norma F. Pfriem Cancer Institute

HEROS Clinic at Yale University

Hartford Hospital’s Helen & Harry Gray Cancer Center

CT Children’s Medical Center Stamford Hospital’s Bennett Cancer Center SWIM Integrative Survivorship Program at St. Vincent’s Medical Center

Middlesex Hospital Cancer Center Whittingham Cancer Center at Norwalk Hospital Leever Cancer Center

Charlotte Hungerford Hospital

Eastern CT Cancer Institute at ECHN

Day Kimball Healthcare

MidState Medical Center’s Palladino Family Cancer Center

New Milford Hospital Regional Cancer Center Greenwich Hospital Breast Center

Danbury Hospital’s Praxair Cancer Center Bristol Hospital

Resources for Cancer Survivors


I am empowered Carmen

Cancer Survivor

HOPE • INSPIRATION • EMPOWERMENT At the Center for Survivorship you’ll find programs in Exercise, Nutrition & Psychosocial support designed to help you live your

Learn more at

best life. We offer classes in yoga, pilates, meditation & nutrition, a weekly coffee talk, and individual personal training to suit your busy schedule.

CT Challenge Center for Survivorship | 250 Pequot Avenue | Southport, CT 06890 | 203.292.8722 |

Gene$c Counseling  and   Tes$ng  for  Cancer   Survivors   Ellen  T.  Matloff,  M.S.   Research  Scien5st,  Gene5cs   Director,  Cancer  Gene5c  Counseling   Yale  Cancer  Center    

Why Would  a  Cancer  Survivor   Consider  Gene$c  Counseling   and  Tes$ng?  

•  Treatment plan  for  recently  diagnosed  pa$ents     •  Long-­‐term  surveillance  and  risk  reduc$on   management  plan       •  Reduce  risk  of  future  cancer     •  Benefit  to  family  members  

Psychosocial Issues     for  Survivors   •  Why  would  I  want  gene$c  tes$ng  now?  Why  would  I  want  to   open  Pandora’s  box?   •  What  do  you  mean  I  might  be  at  risk  for  other  cancers?     •  I  have  already  been  through  surgery,  chemotherapy,  and   radia$on.    I  do  not  want  to  have  prophylac$c  surgery.   •  I  cannot  believe  that  my  children,  grandchildren,  siblings,  and   other  rela$ves  might  also  carry  this  muta$on.    I  feel  so  guilty   that  I  may  have  passed  this  muta$on  on  to  them.  

•  Only 5%  to  10%  of  cancer  is  hereditary     •   A  detailed  family  history  is  a  cri$cal  tool  

Risk Factors   1.    Early  age  of  onset     2.    Mul$ple  affected  family  members     3.    “Related”  cancers  in  the  family         4.    Mul$ple  primaries     5.    Unusual  presenta$on     6.    Ethnicity     7.    Pathology  


(breast cancer  -­‐  1)  

•  Cloned in  1994   •  Chromosome  #17   •  Cancer  risks:   •  •  • 

risk of  breast  cancer   risk  of  ovarian  cancer   risk  of  prostate  cancer  


(breast cancer  -­‐  2)  

•  Cloned in  1995   •  Chromosome  #13   •  Cancer  risks:    -­‐risk  of  breast  cancer  

-­‐risk  of  ovarian  cancer    -­‐risk  of  prostate  cancer    -­‐risk  of  pancrea$c  cancer    -­‐risk  of  male  breast  cancer  


Ashkenazi Jewish  Muta$ons   •  BRCA1:     • 

185 del  AG  


5382 ins  C  

•  BRCA2: • 

6174 del  T  

Es$mated Life$me  Cancer  Risks     Site     Breast   2nd  Breast Primary     Ovary  

General    Popula$on        BRCA1






   up  to  65%      50%  




Es$mated Life$me  Cancer  Risks                General   Site              Popula$on   Male  Breast            <<1%     Prostate          16%     Pancrea+c            <1%  









Op$ons for  Breast  Cancer  Risk   Management   •  Surveillance   •  Chemopreven$on   •  Prophylac$c  Surgery  

Op$ons for  Ovarian  Cancer  Risk   Management   •  Surveillance   •  Chemopreven$on   •  Prophylac$c  Surgery  

Case 1   Ethnicity:  Italian  

Lump, chemo, rad

Case 2   Ethnicity:  Italian/  Irish  

Lump, chemo, rad

Case 3  

Case 4A  

Case 4B  

Ashkenazi Jewish  

Case 5A  

Case 5B  

Lynch Associated  Risks   •  Colon  Cancer     •  Uterine  Cancer   •  Ovarian  Cancer



~  10%  

Case 6  

Classic HNPCC  

Case 7   d. 50 leukemia, dx. 40



21 19 breast ca, dx. 21 osteosarcoma, dx. 13

d. 37 bilat breast ca, dx. 23 and 29





Li-­‐Fraumeni Syndrome   •   


Chromosome #17   Cancer  risks:  

•  •  •  • 



S =  sod  $ssue  sarcoma   B  =  breast,  brain,  bone   L  =  lung,  leukemia,  lymphoma   A  =  adrenocor$cal  carcinoma  

+  11  other  reported  cancers  

Childhood cancers,  mul$ple  primaries   50%  by  age  30,    90%  by  age  60  

Construc$ng A  Family  History   •  Maternal  and  paternal  histories  are  equally   significant     •  Should  include  at  least  3  to  4  genera$ons     •  Primary  site  and  age  of  diagnosis     •  Importance  of  pathology  reports   •  Encourage  pa$ents  to  contact  the  family  historian   •  Encourage  the  use  of  social  networking   •  Investment  for  future  genera$ons  

Greatest Urban  Myths   1.    If  you  have  gene$c  tes$ng,  your  health  insurance  will  discriminate  against  you.     2.    Your  insurance  will  not  cover  the  cost  of  gene$c  counseling  &  tes$ng.     3.    Only  Ashkenazi  Jews  are  at  risk  for  BRCA  muta$ons.     4.  Only  have  this  tes$ng  if  you  would  consider  bilateral  prophylac$c  mastectomies.     5.    You  have  already  had  cancer,  so  tes$ng  won’t  help  you.     6.    Your  father’s  family  history  doesn’t  count.     7.    You  only  need  gene$c  counseling  if  you  test  posi$ve  for  a  muta$on.     8.    If  you  test  nega$ve  for  muta$ons,  you  are  at  popula$on  risk  for  cancer.     9.    There  is  only  one  cancer  gene  test.    It  is  simple;  it  does  not  require  gene$c                counseling  before  the  test.  


Na$onal Society  of  Gene$c   Counselors    

hjp:// 312-­‐321-­‐6834  

Psychosocial Issues     for  Survivors   •  Why  would  I  want  gene$c  tes$ng  now?  Why  would  I  want  to   open  Pandora’s  box?   •  What  do  you  mean  I  might  be  at  risk  for  other  cancers?   •  I  have  already  been  through  surgery,  chemotherapy,  and   radia$on.    I  do  not  want  to  have  prophylac$c  surgery.   •  I  cannot  believe  that  my  children,  grandchildren,  siblings,  and   other  rela$ves  might  also  carry  this  muta$on.    I  feel  so  guilty   that  I  may  have  passed  this  muta$on  on  to  them.  

Gene$c Counseling  and   Tes$ng  for  Cancer   Survivors   Ellen  T.  Matloff,  M.S.   Research  Scien5st,  Gene5cs   Director,  Cancer  Gene5c  Counseling   Yale  Cancer  Center    

Karen Syrjala, PhD Professor, Director, Biobehavioral Sciences Co-Director, Survivorship Program Fred Hutchinson Cancer Research Center and University of Washington

1.  What is the prevalence of PTSD after cancer? 2.  What do you want to know in diagnosing PTSD? 3.  What can you do about symptoms?

Ø  PTSD rates vary widely ü  0 to 32% (Kangas, Clin Psychol Rev. 2002 ) ü  Non-Hodgkin Lymphoma: 7.3% PTSD, 37% PTSS median 13 years after treatment (Smith J Clin Oncol, 2011) ü  Post-traumatic stress symptoms (PTSS) are more common

Ø  Depression rates vary widely ü  10% to 25% (Pirl, J NCI Monogr, 2004) ü  20% to 50% (Pasquini et al. Clin Prac Epi in MH, in press) ü  0% to 58% (Massie, J NCI Monogr, 2004)

Ø  Anxiety rates vary widely ü  6% to 23% (Stark, Br J Cancer, 2000)

Ø  Distress (adjustment reaction) is most common

•  Prevalence in Cancer –  3-10% is most common in well-designed studies –  range in studies is 0-60% depending on how measured –  Overlap with depression symptoms

•  Prevalence in General Adult Population 2.4% •  3 Types of Symptoms (cancer rates): –  Re-experiencing symptoms –  Hyperarousal symptoms –  Avoidance symptoms


11-27% 7-80%

Re-experiencing symptoms: • 

Intrusive thoughts and memories


Nightmares / disturbing dreams repeatedly


Feeling upset when something reminds you of the cancer or treatment


Physical reactions when something reminds you (heart pounding, breathing difficulty, sweating)


‘Flashbacks’ as if really there, as with combat, are less common

Hyperarousal symptoms: •  Trouble falling or staying asleep •  Irritable or angry outbursts •  Difficulty concentrating •  “Super-alert,” watchful or on guard •  Jumpy or easily startled

Avoidance symptoms (most common): • 

Avoid thinking about, talking about, having feelings about cancer and treatment


Stay away from reminders (activities, situations or locations)


Don’t remember parts of diagnosis or treatment


Loss of interest in activities you used to enjoy


Feeling distant or cut off from others


Feeling emotionally numb or unable to have feelings for those close to you


Feeling as if your future will be cut short

Why is PTSS easy to miss? •  Many symptoms look like depression or anxiety •  With avoidance symptoms it is easy to have both the survivor and the clinician not notice ü  Less anxious because don’t think about ü  What’s wrong with this? o  Avoid appointments, avoid healthy behaviors, avoid symptoms

Is Cancer-related PTSD like other PTSD? •  Yes, it’s similar to disaster and violence reactions both in frequency and in patterns over time. •  People more at risk are similar.

•  Half (51%) had no symptoms at any time •  7% had a PTSD diagnosis •  37% had symptoms not severe for a diagnosis –  18% persisted over 5 years –  19% got worse over 5 years

•  12% had symptoms that resolved over time •  AVOIDANCE is the most common type of symptom Smith et al. J Clin Onc, 2011.

•  Lower income (< $30,000, vulnerable to other consequences of diagnosis and treatment) •  Less educated (access to information, resources and understanding of medical terms) •  More aggressive disease and treatment •  Recurrence of disease •  Younger (teenagers and young adults) •  Low social support •  Negative perceptions: Worry, Life interferences, Body image and Appearance concerns

“Someone likened cancer to a pink elephant, and the pink elephant initially is right there in front of your face, you know… and then as you get better, the pink elephant maybe goes to another room. And then as you get much better, the pink elephant goes down the street, but it’s always there and you always know it’s there. And, I think that , as you approach appointments, the pink elephant [from] down the street, you know, comes in the living room again.”

De Marco et al. Oncology Nursing Forum, 31 (4) 2004.

•  Have to screen for or will miss –  Patients rarely bring it up

•  PTSD vs. depression vs. anxiety/distress vs. fear of recurrence –  More than: •  Fear focus •  Loss of interest or emotional numbness (depression) •  General distress, worry, stress

–  For diagnosis, must have all 3 categories of symptoms: re-experiencing, avoidance, hyperarousal –  Must disrupt functioning and occur for >1 month

In your life, have you ever had any experience that was so frightening, horrible, or upsetting that, in the past month, you: 1.  Have had nightmares about it or thought about it when you did not want to? YES / NO 2.  Tried hard not to think about it or went out of your way to avoid situations that reminded you of it? YES / NO 3.  Were constantly on guard, watchful, or easily startled? YES / NO 4.  Felt numb or detached from others, activities, or your surroundings? YES / NO Current research suggests the PC-PTSD should be considered "positive" if a patient answers "yes" to any three items. Prins A, et al. (2003) Primary Care Psychiatry, 9, 9-14

A score of 14 or higher indicates need for a referral for further PTSD screening. Lang, AJ & Stein, MB (2005). Behaviour Research and Therapy, 43, 585-594.

Ø  Strong evidence indicates that several cognitive behavioral therapy approaches are most effective for treating PTSD. Ø  A handful have been tested in RCT for cancer survivors. •  •  • 

Breast Hematopoietic cell transplantation (BMT) Adolescents

•  Both are possible in the same person

Post-Traumatic Stress / Growth

•  PTS Symptoms and PTS Growth are unrelated •  Silver linings don’t eliminate the clouds •  Just like clouds, the same person can have both

Post-traumatic Growth: Finding Meaning After Cancer Mitch Golant November 13, 2012


g Uniting The Wellness Community and Gilda’s Club Worldwide

The Challenge of Cancer Care Today • Growing Numbers •  Today there are more than 13 million cancer survivors in the US •  There will be more than 1.5 million new cases this year alone •  There are more than 77 million baby boomers in the US today • Growing Complexity •  More screening, diagnostic, and biomarker tools with complex results •  More treatment choices than ever before •  Multiple bouts, recurrence • Growing Need •  More people are in need of more services •  Great financial strain in this challenging economic environment

Striving for Complete Cancer Care

Health is a state of complete physical, mental and social well-being and not merely the absence of disease or infirmity.

–WHO Definition of Health

All cancer care should include appropriate psychosocial support. – IOM Report: Cancer Care for the Whole Patient

Enter The Cancer Support Community • Our Mission: • To ensure that all people impacted by cancer are empowered by knowledge, strengthened by action, and sustained by community

Integrative Model of Care

Tertiary Care

Cancer As a Chronic Illness

Community Cancer Care

Community-based Support 5

Distress is Common Unpleasant emotional experiences can impact cognitive, behavioral, social, emotional and spiritual functioning Distress may interfere with ability to cope effectively with cancer, its physical symptoms and treatment 47% of cancer patients have distress severe enough to qualify for psychiatric diagnosis Emotional distress is the most underreported & common side effect of cancer Jacobsen, PB, Donovan KA, Trask PC, Fleishan SB, Zabora J, Baker F, Holland JC, Screening for Psychological distress in Ambulatory Cancer Patients. Cancer 2005 Apr 1;103(7):1494-502

6 • 1-888-793-well

Symptoms of Distress Spectrum of feelings from sad, fearful, angry and unhappy to severe depression, panic and debilitating anxiety It is important to monitor the chronicity and severity of symptoms Reliable symptoms include: Persistent depressed or angry mood, lack of pleasure in activities Unreliable symptoms include: fatigue, insomnia, eating disturbance, decreased libido Symptoms decrease quality of life 7 • 1-888-793-well


The Expression of Emotions §  Expressing negative emotions (fear, anger, sadness – are normal and adaptive) §  Expressing a range of emotions within a support group improves quality of life §  Repressing emotions can lead to aggressiveness, hostility and irresponsible and inconsiderate impulses Giese-Davis J, Koopman C, Butler LD, Classen C, Cordova MJ,Fobair P, Benson J, Carlson R, Spiegel D. Change in emotion regulation strategy for women with metastatic breast cancer following supportiveexpressive group therapy. J Consult Clin Psychol 2002;70:916–25.



Allowing yourself to be in the moment 10

What We  have  Learned  From   Pa0ents  


LESSION #  1:    What  We’ve  Learned  From  Pa:ents  

Finding Humor— laughing feels good!



Lesson #  2:    What  We’ve  Learned  From  You  




Lesson #  3:    What  We’ve  Learned  From  Pa:ents  

Use hopeful words


Lesson #  4:    What  We’ve  Learned  From  Pa:ents  

Make plans for the future 17

Lesson #  5:    What  We’ve  Learned  From  Pa:ents  

Be with family and friends 18

Thank You  


Online Support  Group  Exchange   I was in the hospital for 3 days this week (which I'll explain later), and while I was there, I slept very fitfully. But one of the times I was able to sleep, I had a very comforting dream in which I received a phone call from you, Tina. I wish I could remember the substance of what you said, but In the dream, your voice was so warm and comforting, and it was like you had been there, and you knew everything was going to be fine. I woke up remembering only that much, but it was a vivid feeling.


You Don’t Have To Deny The Illness to Defy The Prognosis --Norman Cousins

Thank You!

22 â&#x20AC;˘ 1-888-793-well

Karen Syrjala, PhD

1.  What are survivors’ wellness needs? 2.  Don’ts 3.  Do’s 4.  How to meet survivor wellness needs

Wellness: Surviving and Thriving

1.  What are survivors’ wellness needs? 2.  Don’ts 3.  Do’s 4.  How to meet survivor wellness needs

Medical Problems: ü  Premature menopause ü  Lymphedema ü  Urinary incontinence ü  Infertility ü  Neurologic problems (balance, neuropathy, memory) ü  GI (bowels, bloating, acid reflux) ü  Pulmonary function ü  Hypothyroidism ü  Diabetes ü  Hyperlipidemia ü  Cardiovascular disease, cardiomyopathy ü  Osteoporosis / osteopenia ü  Dental impairments ü  Recurrence, 2nd cancers

Symptoms and Function: Medical Problems: ü  Fatigue ü  Premature menopause ü  Pain ü  Lymphedema ü  Nausea ü  Urinary incontinence ü  Sexual dysfunction, hot flashes ü  Infertility ü  Sleep problems ü  Neurologic problems (balance, neuropathy, memory) ü  Muscle and joint problems ü  GI (bowels, bloating, acid reflux) ü  Memory loss, chemo-brain ü  Pulmonary function ü  Distress, worry, depression ü  Hypothyroidism Practical Issues, Lifestyle ü  Diabetes ü  Nutrition ü  Hyperlipidemia ü  Exercise ü  Cardiovascular disease, cardioü  School myopathy ü  Work ü  Osteoporosis / osteopenia ü  Insurance ü  Dental impairments ü  Relationships nd ü  Recurrence, 2 cancers ü  Smoking, Alcohol

Ø  After 5 years I have been extremely lucky to be so healthy…The only factors that I can say are lingering are: fatigue, joint pain, and chemo-brain! These limit some things, but not to anything constant (except fatigue). I wish that my employment could be fewer hours to alleviate the fatigue. Ø  My main issues at this point are diabetes, sexual functioning and depression. Overweight is an issue too, but I am alive so I am grateful.


Health Status Symptoms Function Depression Distress/Anxiety Intimacy Fatigue/Symptoms Benefit Finding Social Support


Gender Race Economics

BRCA, p53 DNA mutations, repair Epigenetics

Long-Term Health and Wellness

Health Behaviors Aging Tobacco Exercise Diet/Weight Alcohol Treatment Sun Complications Sleep Health Surveillance


Tumor Histology Site Biologic Response

Surgery Chemotherapy Radiation therapy

Long-Term Health and Wellness

Health Behaviors

Tobacco Alcohol Sun Exercise Weight Nutrition Sleep Health Surveillance

Health Status

Symptoms Stamina, Strength Depression Distress/Anxiety, PTSD Intimacy Fatigue/Symptoms Benefit Finding Social Support

619 Cancer Survivors (2003 HINTS) •  36% reported fair or poor health status •  58% were overweight •  23% were current smokers •  82% did not eat five or more fruits and vegetables daily •  55% did not report regular physical activity •  < 10% reported all three healthy lifestyle behaviors and had a healthy weight. Mayer DK et al (2007). Oncol Nurs Forum, 34(3): 643-51.

3,129 post-treatment cancer survivors Physical Concerns: 53% Energy / Fatigue 53% Concentration 43% Sexual function Psychosocial Concerns: 75% Fear of recurrence 65% Sadness, depression 64% Grief, identity Less than half received care for their concerns RESULTS  FROM  THE  LIVESTRONG  SURVEY,  2010  

Unmet Needs of Survivors


1.  What are survivors’ wellness needs? 2.  Don’ts 3.  Do’s 4.  How to meet survivor wellness needs

1.  Smoking / tobacco 2.  Alcohol limits –  2 drinks a day for men –  1 drink a day for women, But… 3 drinks a week for reducing breast cancer risk

3.  Sun exposure > 10 minutes without sunscreen –  SPF 30, UVA and UVB block daily –  Long sleeve shirts, hats, pants when staying in sun –  Melanoma risk is real

1.  Exercise –  2.5 hours a week of moderate-vigorous intensity –  Heart rate in target zone

2.  Control Weight –  Reduce central adiposity, build muscle

3.  4.  5.  6. 

Eat Well (whole foods not supplements) Sleep Well Have Meaning and Purpose in Life Use Stress Relief methods regularly (don’t wait for stress) –  Cognitive reframing strategies –  Meditation, yoga, relaxation, qigong, tai chi, exercise

7.  Get Social Support (express deepest thoughts and feelings) 8.  Get Regular Health Care

•  Eat Well –  Depend on whole foods rather than supplements –  Reduce or eliminate •  Red meat •  Processed meat –  Hot dogs, bacon, etc •  Sugar, high fructose corn syrup •  Processed grains –  Eat whole grains •  Brown rice, Quinoa, Oats (oatmeal), Barley, Farro

–  Focus on vegetables and fruit •  At least half of plate, 3 times a day •  COLOR! dark green, red, yellow, orange, blue, purple, even

•  Get Regular Health Care: –  Get a survivorship care plan –  Get an annual physical –  Address symptom needs –  Know health surveillance needs –  Schedule follow-ups when needed

•  Know which health care provider will take care of which needs

1.  What are survivors’ wellness needs? 2.  Don’ts 3.  Do’s 4.  How to meet survivor wellness needs

Keys to successfully meeting goals: •  Pick one goal •  Write down goal •  Make a plan, break goal into small, specific steps, check it daily –  Make sure it is a priority –  Make it real (what, where, when, with whom) –  Consider barriers (effort, time, money, negative effect on others, depend on others) –  Adjust if barriers are too large

•  Chart progress

•  Define the goal clearly •  Make it a behavior –  Not: ‘stop smoking’ –  But: go to online and read the steps, start taking medication, call me in a week

•  Write down goal and behavior steps •  Make sure you agree on it and the patient is certain he/ she can do it (self-efficacy/confidence) •  Follow-up •  Adjust the plan if behaviors not completed –  Smaller steps for behaviors

Benefits of Different Types of Exercise on Various Cancer Outcomes in Cancer Survivors Melinda L. Irwin, PhD, MPH Associate Professor Yale School of Public Health Co-Leader Cancer Prevention and Control Research Program Yale Cancer Center

Rationale for Studying Physical Activity and Cancer •  While improvements in cancer treatment and survival should be celebrated, surgery and treatment are associated with several negative side effects. •  Common side effects of cancer and its treatment include –  –  –  – 

Fatigue, joint pain, lymphedema, peripheral neuropathy Weight gain, cardiovascular disease, diabetes, osteoporosis Poor quality of life Risk of recurrence and/or new cancer diagnoses

•  Physical activity may prevent or control many of these side effects.

Exercise Guidelines for Cancer Survivors Schmitz et al. MSSE, 2010 1. Avoid inactivity 2. Return to normal daily activities as quickly as possible after surgery 3. Continue normal activities and exercise as much as possible during and after non-surgical treatments 4. Recommendations the same as for age appropriate guidelines from the US DHHS Physical Activity Guidelines for Americans –  150 minutes/week moderate-intense aerobic exercise or 75 minutes/week of vigorous exercise –  Strength training 2-3 times/week, 8-10 exercises of 10-15 repetitions/set, with at least one set per session 5. Metastatic patients will require modifications and more supervision 6. Patients with cardiac findings may require greater supervision

How active are cancer survivors? Breast Cancer (n=2987) Hrs/wk






% Pts






Colorectal Cancer (n=1407) Hrs/wk





% Pts





•  More effective strategies to increase exercise in cancer survivors should be explored. •  A better understanding of the benefits of different types of exercise, at various time points after diagnosis, on various cancer outcomes may assist in the adoption and maintenance of PA after a cancer diagnosis. Holmes JAMA 2005; Meyerhardt JCO 2006

Exercise and Cancer Outcomes •  Types of Exercise –  Aerobic (weight-bearing vs. non-weight-bearing) –  Resistance –  Yoga


Time points –  During treatment –  Post-treatment


Cancer Outcomes –  Quality of Life –  Cancer-Related Fatigue –  Cardiorespiratory Fitness –  Body Composition (weight, % fat, lean mass, bone mass) –  Lymphedema –  Biological/surrogate markers of cancer risk –  Recurrence and Mortality

Quality of Life (QOL) •  QOL refers to the physical, emotional, mental and social well-being •  Commonly measured via self-report: SF-36 and FACT surveys •  Recent meta-analyses showed exercise improves QOL –  Most studies were aerobic exercise (e.g., stationary cycling, 3x/wk, 45 min/session at 60-80% VO2max) –  Few studies of resistance training alone, but studies of RT plus AT better QOL improvement than AT alone –  Better effect of exercise on QOL post-treatment –  Interventions successful if targeted more intense exercise, longer study duration, and addressed women –  Concerns with •  Attention effect •  Ceiling effect Ferrer R, et al. Ann Behav Med 2011; Pastakia&Kumar, Physiother Res Int 2011

Exercise and QOL improvements TR

Ferrer R, et al. Ann Behav Med 2011 ©2007 by American Society of Clinical Oncology

(A) Exercise vs. Usual care and (B) Exercise-placebo vs. Usual care

Daley A J et al. JCO 2007;25:1713-1721 ©2007 by American Society of Clinical Oncology

Primary Aims: •  To examine the effects of a 6-month moderate-intensity walking program vs. attention control on factors ovarian cancer outcomes in 230 ovarian cancer survivors: •  •  •  • 

Quality of Life, Fatigue, Peripheral Neuropathy Body composition (weight, % fat, LBM, BMD) Lower leg lymphedema Biological markers

NCI R01CA138556; PI: Melinda L. Irwin

Cancer-Related Fatigue •  Cancer-related fatigue is the most commonly reported symptom by cancer survivors. •  Cancer-related fatigue is a distressing, persistent, subjective sense of physical, emotional, and/or cognitive tiredness or exhaustion related to cancer that is not proportional to recent activity and interferes with usual functioning. •  Exercise may improve fatigue by increasing cardiorespiratory fitness levels and cardiac output. •  Meta-analyses show exercise improves fatigue both during and after treatment, with aerobic and resistance exercise.

Brown J et al, CEBP 2011; Velthuis et al, Clin Oncol 2010

Exercise and Cancer Related Fatigue in Breast Cancer Survivors

Velthuis et al, Clin Oncol 2010

Exercise and Cancer Related Fatigue in Prostate Cancer Survivors

Velthuis et al, Clin Oncol 2010

Yoga and Cancer-Related Fatigue in Breast Cancer Survivors

Bower J, et al, Cancer 2011

Bower J, et al. Clin Cancer Res 2009

Cardiorespiratory Fitness • 

Maximal oxygen consumption (VO2max) provides the gold standard measure of cardiorespiratory fitness, and is a powerful predictor of mortality in healthy adults as well as those with CVD.


Minimum VO2max of 15 ml/kg/min in women and 18 ml/kg/min in men necessary for full and independent living


Unfortunately, cancer patients have marked reductions in VO2max.


Prior to surgical resection, VO2max is a strong predictor of postoperative complication risk in NSCLC patients.


V02max > 14 ml/kg/min associated with a 24% lower all-cause mortality rate compared to patients with <14 ml/kg/min


Exercise improves VO2max

–  ~30% below that of sedentary individuals without cancer

–  Most studies used indirect measures –  Usual care group has decreases; exercise group maintain or increase –  Aerobic training better than resistance training; more improvement post-treatment

Myers J, NEJM 2002; Jones L, et al. Oncologist 2011

Fitness and Lung Cancer Mortality

HR= 0.43 (0.28-0.65) for high fitness vs. low fitness

Sui X, et al., MSSE 2010

Pooled effects of supervised exercise training, compared with usual care (control), on cardiorespiratory fitness (peak oxygen consumption, VO2peak) by treatment status.

Jones L W et al. The Oncologist 2011;16:112-120 ©2011 by AlphaMed Press

Body Composition •  Weight gain is common after a breast cancer diagnosis, and may adversely affect recurrence and survival. •  Chemotherapy and endocrine therapy are associated with bone losses, osteoporosis and fractures. –  Annual rates of bone loss at the spine from chemotherapy, AIs and ADT are 7%, 3% and 4%, respectively. –  Fracture risk is increased by 15% in women with breast cancer compared with women without cancer, and by 20% in prostate cancer survivors on ADT compared with prostate cancer patients not on ADT.

•  Few studies examined body fat measured objectively with DEXA

Winters-Stone K, et al. J Cancer Surv 2010

Exercise and Body Composition TR

Fong D et al, BMJ 2012 Š2007 by American Society of Clinical Oncology

Exercise and Bone Mineral Density

Winters-Stone K et al. BCRT 2011 Copyright restrictions may apply.

Yale Exercise and Survivorship Study Exercise and Body Composition (% change at 6 months)

2 1.5


1 0.5




Exercisers Controls


-0.5 -1 -1.5


-2 -2.5

Body Fat

Lean Mass

BMD Irwin ML, et al. Obesity, 2009.

* P < .05

Primary Aims: To examine, in 180 breast cancer survivors, the effect of 12 months of exercise on improving side effects of breast cancer medication (aromatase inhibitors): •  Severity of arthralgias (joint pain) •  Mechanisms mediating the effect of exercise on arthralgias –  Pro-inflammatory markers (IL6,TNF-α, and CRP) –  Cardiorespiratory fitness and muscular strength –  Psychological outcomes (self-efficacy, depression, anxiety, pain-coping skills)

•  •  •  • 

Bone Mass Endocrine-related Quality of Life Biological markers associated with breast cancer Adherence to taking aromatase inhibitors NCI R01CA132931; PI: Melinda L. Irwin


•  Systematic review of 19 studies concluded that slowly progressive exercise is not associated with development or exacerbation of breast cancer-related lymphedema. •  Future studies needed in patients with or at risk for other types of lymphedema, e.g., endometrial and ovarian cancer.

Kwan et al J Cancer Surv 2011

Resistance Training and Breast Cancer-Related Lymphedema

Schmitz K et al., NEJM 2009

Exercise and Prevention of Breast Cancer-Related Lymphedema

Schmitz, K. H. et al. JAMA 2010;304:2699-2705

Copyright restrictions may apply.

Exercise and Cancer Recurrence, Mortality and Biomarkers

•  Growing number of observational studies report association between higher levels of exercise and lower risk of breast and colorectal cancer mortality. •  Few studies published examining effect of exercise on surrogate/ biological markers of survival, and no study published of exercise effect on recurrence or mortality.

Physical activity after breast cancer diagnosis P = .05

1 0.9 0.8 0.7 0.6 0.5 0.4 0.3 0.2 0.1 0

P= .004

P = .003

<3 3-8.9 9-14.9 15-23.9



BRCA Death

Total Death

Holmes M et al JAMA 2005

Meta-Analysis of Physical Activity and Breast Cancer Survival

Ibrahim et al, Medical Oncology 2010

Post-diagnosis Physical Activity and Colorectal Cancer Survival

Meyerhardt, J. A. et al. J Clin Oncol; 24:3527-3534 2006

Change in Physical Activity and Colon Cancer Mortality

Meyerhardt, J. A. et al. J Clin Oncol; 24:3527-3534 2006

DietaryWeight Loss and Physical Activity

Irwin ML. BMJ. 2006; 34(4): 182-93

Insulin and Breast Cancer Prognosis 3.5

p = 0.007

Hazard Ratio

3 p = 0.0001

2.5 2

Distant Recurrence Death

1.5 1 0.5 0 8.1-27



> 51.9

Insulin Quartiles (pmol/L)

Goodwin et al. JCO 2001;20:42-51

Strength Training and % change in metabolic hormones over 4 months 5 0 -5 -10

Exercise Control

-15 -20 -25 -30

Insulin* Leptin Adipon Weight



Ligibel et al, JCO, 2008.

Yale Exercise and Survivorship Study Exercise and Insulin and IGFs (% change at 6 months)


10 8 6 4 2 0 -2 -4 % -6 -8 -10



Exercisers Controls




05* P < .05 Irwin ML, et al. CEBP, 2009.

Future Directions •  Exercise improves QOL, fatigue, fitness, body composition, lymphedema, insulin and IGF-I. –  More studies needed in high risk groups •  (e.g., those with poor QOL, taking certain medications)

–  –  –  – 

More studies needed with objective outcome measures More studies needed on biomarkers More studies needed in other cancers More studies need on what type of exercise is optimal for particular cancer outcomes

•  Supervised exercise may be better than home-based given attention effects and able to exercise at higher intensity, yet home-based may be more feasible.

Cancer Survivorship Programs in Connecticut Buy-In and Push-Back in 2012

Kenneth Miller, M.D. Sinai Hospital of Baltimore

2011 Yale/Connecticut Challenge Survivorship Clinic The Connecticut Challenge Survivorship Clinic is the first dedicated, multidisciplinary resource for adult cancer survivors in the State of Connecticut.

UNC Lineberger Cancer Center

How busy are survivorship programs

Program Buy-In

Survivorship Champions

But ………..

We received funding and space and we have hired clinicians……… Where are the patients?? My chief asked me to start a survivorship program. I have met with the disease center leaders and the clinicians. We have a great plan but not many patients despite all the effort! It has been slow going!!

The Most significant Problem for Survivorship Programs?


W ha t ty p e o f fa c ility d o y o u wo rk in? Rural Hospital Inner City Hospital Community Hospital Academic Hospital Government Hospital (VA) Free Standing Academic Cancer Center Free Standing Community Cancer Center Community Oncology Practice













401-700 700+





D o e s y o ur ho s p ita l/ c a nc e r c e nte r ho s t a ny o f the fo llo wing : (P le a s e c he c k a ll tha t a p p ly ) 120.0% 100.0% 80.0% 60.0% 40.0% 20.0% 0.0% Cancer Survivor Day

Educational Seminars

Speaker Series


D o y o u c o ns id e r y o ur ho s p ita l/ c a nc e r c e nte r to ha v e a s urv iv o rs hip p ro g ra m?

Yes No (Skip to Question #6)

Yes- 88% No- 12%

I don't know

H o w wo uld y o u d e s c rib e y o ur s urv iv o rs hip p ro g ra m?

1 - We don't have one 2 - Just starting 3 4 5 - Well established

D o e s y o ur ho s p ita l/ c a nc e r c e nte r ha v e o ne o r mo re s ta ff me mb e rs d e s ig na te d to p ro v id e s e rv ic e s to c a nc e r s urv iv o rs ? (Che c k a ll tha t a p p ly )

al St af f

ra to r

-C le r ic Ye s

-A dm in


cia n Ye s

-P hy si Ye s

ga to r -N av i Ye s

-N ur se Ye s


70.0% 60.0% 50.0% 40.0% 30.0% 20.0% 10.0% 0.0%

W hic h p o p ula tio n o f c a nc e r s urv iv o rs d o y o u s e rv e ? 80.0% 70.0% 60.0% 50.0% 40.0% 30.0% 20.0% 10.0% 0.0%

On tx.

<1 year

>1 year


V e ry g e ne ra lly s p e a k ing , ho w b us y is y o ur s urv iv o rs hip p ro g ra m? 50.0% 45.0% 40.0% 35.0% 30.0% 25.0% 20.0% 15.0% 10.0% 5.0% 0.0% 1 - Not busy at all




5 - Too busy

How Busy Are You? •  our pt population is too big right now to effectively capture all of our survivors with the limited dedicated staff to Survivorship and pt navigation. We are in the process of hiring to meet these needs. •  We will service the first patients this month. We're just in beginning phases. •  We run our program 4 times a year as an education day with delivery of care plans to those who attend. Patients not able to attend receive their plans of care at an oncology visit. •  Since I just started seeing pts for the treatment summaries its not very busy but I anticipate, based on the response to date, that I will see over 100 survivors in FY'13

V e ry g e ne ra lly s p e a k ing , ho w b us y is y o ur s urv iv o rs hip p ro g ra m? 50.0% 45.0% 40.0% 35.0% 30.0% 25.0% 20.0% 15.0% 10.0% 5.0% 0.0% 1 - Not busy at all




5 - Too busy

H o w wo uld y o u ra te the s uc c e s s o f y o ur s urv iv o rs hip p ro g ra m a t y o ur ins titutio n?

1 - Significantly below where I think it should be 2 3 4 5 - Very, very successful

H o w wo uld y o u ra te the s uc c e s s o f y o ur s urv iv o rs hip p ro g ra m a t y o ur ins titutio n?

1 - Significantly below where I think it should be 2 3 4 5 - Very, very successful

Ge ne ra lly , ho w muc h " b uy -in" ha v e y o u re c e iv e d fro m y o ur ho s p ita l o r ins titutio n fo r y o ur s urv iv o rs hip p ro g ra m?

1 - Essentially none






4 5 - Very, very strong "buy-in"

27.3% 27.3%

Ge ne ra lly , ho w muc h " p us h-b a c k " ha v e y o u re c e iv e d fro m y o ur ho s p ita l o r ins titutio n a b o ut y o ur s urv iv o rs hip p ro g ra m?

1 - Essentially none

72.7% 2



13.6% 0.0%



5 - Very, very strong "pushback"

Oncologists Reactions • 

Our oncologists are champions in promoting the program


Strongly promoted by institutional management who demand providers meet RVU goals despite a dirth of patients.

· ·

They feel strongly that long term medical complications such as cardiac issues are discussed with the patient by practitioners who are knowledgeable to speak to these issues. Don't believe patients need navigators or care plans. They often feel the survivorship visit is redundant in terms if what they believe already do.


They really just don t think of it!


Some oncologists feel that they want to do everything but they don't have the time. Having a navigator they trust has decreased many of these issues.


Generally, they have a sense that they are already doing survivorship, yet they say time is a factor in terms of trying to explain the program.


Don't want to give up patients- don't understand the role for survivorship surveillance rather than diseae surveillance.

Ge ne ra lly , ho w muc h " b uy -in" ha v e y o u re c e iv e d fro m y o ur c a nc e r s urv iv o rs a b o ut y o ur s urv iv o rs hip p ro g ra m?

1 - Essentially none






4 5 - Very, very strong "buy-in"

27.3% 36.4%

Fo r c a nc e r s urv iv o rs , wha t is the mo s t s ig nific a nt fa c to r in re g a rd to the ir " p us h-b a c k " a b o ut c a nc e r s urv iv o rs hip p ro g ra ms ?

My oncologist is doing this already


I don't want to see another provider


My oncologist might be upset with me if I go to a survivorship program


I don't want any more bad news

End of Treatment Summary and Survivorship Care Plans in Connecticut


D o e s y o ur ho s p ita l/ c a nc e r c e nte r p ro v id e tre a tme nt s umma rie s a nd c a re p la ns fo r c a nc e r s urv iv o rs ?

Yes - (If "Yes", please skip to Question #15) No I don't know

Who delivers these-- Nurses 93%

W ha t p o p ula tio n re c e iv e s tre a tme nt s umma rie s a nd c a re p la ns ? (Cho o s e a ll tha t a p p ly ) 60.0% 50.0% 40.0% 30.0% 20.0% 10.0% 0.0% All patients

Breast cancer patients

Prostate cancer patients

Colon cancer patients

For Whoâ&#x20AC;&#x201D; All patients seen in the survivorship clinic All adjuvant or durable remission patient Will start with breast cancer then add other sites All patient who attend our survivorship symposium Selected pts from all disease sites

A p p ro xima te ly ho w ma ny p a tie nts will re c e iv e tre a tme nt s umma rie s a nd c a re p la ns in 2012?

None 1-50 51-100 101-200 201-400 401-700 701+

P e rs o na lly , wha t is y o ur b e s t e s tima te o f the p e rc e nta g e o f p a tie nts c o mp le ting tre a tme nt fo r a ll ty p e s o f c a nc e r who re c e iv e a tre a tme nt s umma ry a nd c a re p la n?

< 5% 6-25% 26-50% 51-75% 76-100%



Push-Back for EOTSCP It's another "thing" providers feel they are now responsible for Lack of outcomes data Weak and apathetic leadership. Lack of awareness of survivorship issues; Holding on to pts They don't see the value of a comprehensive assessment of other health needs beyond cancer surveillance. Short-sightedness on the institution's role, regarding it as a "traditional" service line and not realizing the affinity it will "buy" them

Nuts and Bolts Issues Personnel to complete treatment summaries and care plans is a problem Reimbursement for services Staffing and human resources issues Funding

Survivorship Program Growth? Where is the Push-back?


Ge ne ra lly , ho w muc h " p us h-b a c k " ha v e y o u re c e iv e d fro m y o ur o nc o lo g is ts a b o ut y o ur s urv iv o rs hip p ro g ra m ?

1 - Essentially none 2 3 4 5 - Very, very strong "pushback"


Push-Back •  they feel it's more work •  They feel strongly that long term medical complications such as cardiac issues are discussed with the patient by practioners who are knowledgable to speak to these issues. •  don't believe patients need navigators or care plans •  They often feel the survivorship visit is redundant in terms if what they believe already do. •  They really just dont think of it! •  Some oncologists feel that they want to do everything but they don't have the time. Having a navigator they trust has decreased many of these issues.




How Can You Grow Your Program ??????????????

Promote Survivorship Early! I think it is all about how it is presented to the patient, and who presents it. Currently, we are trying to put in place a pathway that will begin with the navigators early on. So then, patients understand that when active treatment ends, support will continue with the survivorship program

Promote the Growth of Your Program

Ask and Promote your STAFF TO TALK IT UP

Find Your Champions!! •  Medical Oncologists, Breast Surgeons, & Social Worker •  Social worker and Dietician •  Navigators •  All of the above it is a Standard for COC for 2015 so it resides in our cancer committee •  Our medical director and executive director have been key. We did a focus group before we began and it was clear that this program was an integral part of the cancer continuum

Fro m y o ur e xp e rie nc e , who ha s b e e n the p rima ry " c ha mp io n" p us hing fo r the d e v e lo p me nt a nd g ro wth o f a s urv iv o rs hip p ro g ra m a t y o ur ins titutio n o r in y o ur c o mmunity ?

Oncologist(s) Advanced Practice Nurse(s) Oncology Nurse(s)(R.N.) Hospital Administrator Cancer survivor(s) Philanthropy Other



Make This Personal! Share Patients Stories

Buy-In Kate- age 41, My visit to the survivorship clinic was wonderful. I felt like someone listened to me- FINALLY! My husband and I have not had sex since my breast cancer diagnosis and I kept hoping that my oncologist would ask me more about it. It was a relief to hear that this is a common issue and can improve. Thank you for helping me move forward.

Buy-In Ashley- Age 42 I was treated for Hodgkin s disease at age 22 with chemotherapy and radiation and it seemed like ancient history for me. Sadly my developing breast cancer is related to my radiation. Thank you for sending me for the MRI which found it before a mammogram or breast exam could find it.

Buy-In Cindy- Age 55 I am one of those people who likes as much information as possible. I can t say that I am happy to have a risk of developing heart problems from my treatment. On the other hand it does motivate me to get my blood pressure treated and to make exercise more of a priority. I am more committed than you can imagine to be very fit. I want to stick around

Buy-In Mike- Age 60 I had an allogeneic transplant in 2002. In the past two years I ve lost weight and muscle mass and look quite wimpy . No libido or erection, no energy, quite blah . I started testosterone as a gel after you told me about my hormone levels and I am feeling about 80% better. Thank you.


Suggestions! Choose where you want to have an impact. Create an Identity! At transition off of treatment? At the end of active surveillance? At discharge from oncology care?

Living With cancer NED

It is possible to Grow the Volume of a Survivorship Clinic

Number of Patients Seen

3500 3000 2500 2000

LAF Appts

1500 1000 500 0 2007

2008 Year




Karen Syrjala, PhD

Symptom burdens are consistent among the four most common cancers (breast, gynecological, prostate, and colorectal) Ø  Fatigue Ø  Anxiety/Distress symptoms Ø  Depressive symptoms Ø  Also: Pain, sexual dysfunction, cognitive limitations, sleep, physical limitations Harrington et al. Int’l. J. Psychiatry in Medicine 2010, 40:163-181.

National Comprehensive Cancer Network Definition, 2010: “A distressing persistent, subjective sense of physical, emotional and/or cognitive tiredness or exhaustion related to cancer or cancer treatment that is not proportional to recent activity and interferes with usual functioning.” ü  20-50% of cancer survivors ü  In survivors fatigue includes lack of stamina or energy, muscle weakness/loss (implications for mechanisms)

Ø  Fatigue is the most common symptom across diseases after chemotherapy or radiotherapy. Ø  For some it continues for years. Ø  Fatigue and depression are not the same, but they can be hard to tell apart and they are related.


Controls (N=98 at 5yrs)

SF36 Vitality

60 56 52

Survivors (N=98 at 5yrs)

48 44

P < .001 Survivors vs Controls at 5 yrs


ys os -tx pre 80 da 6 m

r 1y

r s 2 y 5 yr Syrjala et al. J Pain, 2006

Causes of fatigue are varied: ü  Anemia not common in survivors ü  Hypothyroidism, endocrine changes ü  Most medical problems increase fatigue (pain, infection) ü  Medications can increase fatigue ü  Cardiac (heart), pulmonary and vascular problems ü  Poor nutrition ü  Sleep disturbances (circadian rhythms) ü  Lack of physical activity ü  Mental health is consistently the strongest predictor § 

Dysregulation of the hypothalamic-pituitary-adrenal axis


Correlates with depression (r=0.56 avg), anxiety (r=0.46 avg) Brown et al. Cancer Epi Biomarkers Prev, 2011 (review)

Ø  Inflammatory cytokine dysregulation: chronic elevations → ‘sickness behavior’ (fatigue, lethargy, decreased libido, increased sleep, reduced cognitive function) Ø  Blunted cortisol response to stress Ø  Nutrition/energy transforms to fat not muscle (as in elderly: accelerated aging/sarcopenia) Ø  DNA mutations with impaired repair cycles or telomere shortening Ø  Oxidative stress / mitochondrial dysfunction

Biologic: Symptoms Weakness Lack of Stamina Myalgias Arthralgias Muscle Cramps

Sarcopenia (muscle loss) Inflammatory Cytokines Oxidative stress Mitochondrial dysfunction

Behavior: Reduced activity

Jason Bielas, genomics, mitochondrial DNA Kevin Conley, PhD, radiology Mary E Flowers, MD, hematology-oncology David Marcinek, physiology, mouse model Paul J Martin, MD, hematology-oncology Susan M Ott, MD, bone metabolism H. Tom Robertson, MD, pulmonology, physiology & biophysics Karen Stout, MD, cardiology Jean C Yi, PhD, psychology

Funded by NCI and NIA: P20 CA 103728, R01 CA 78990

Body Mass Index ‘Healthy’ Transplant Survivors 5-20 years after treatment

70 60

USA Population 33% obese by BMI


49% 40 30


20 10







Body Mass Index vs. Body Fat Percent 70 60


USA Population 33% obese by BMI


49% 40 30



18% 10

20% 16%



BMI Body Fat %



Treadmill Test: VO2max (aerobic capacity)

Fair 23%

Good 17% Excellent 4%

Superior 13%

Poor 21%


Very Poor 22%

Syndromes: †  Able to reliably and validly measure symptoms †  Symptoms are common (70% at least weekly)

Mechanisms: †  Musculoskeletal complications may have both biologic (muscle mitochondrial / oxidative stress) and behavioral (inactivity) mechanisms

Also: †  Underestimates of medical problems because only healthy, age <50 survivors enrolled

Ø  How much is enough? ü  3 hours at least, 5 hours better ü  Moderate intensity at least (not walking unless brisk pace) ü  Weight resistance training better for fatigue, add some aerobics ü  Unclear what is best for prevention

•  YMCA, LIVESTRONG and Hutchinson Center collaboration •  12-week, 2x/week, 90 min. strength and fitness program for survivors •  Training provided by Y and Hutchinson Center •  Assessment Pre and Post class •  Content foci:

resistance exercise aerobic exercise support, nutrition

–  22 locations, >60 sessions to date •  ~ 1000 participants

Age, Mean (SD) Range Gender, N (%) Male Female Diagnosis, N (%) b Breast Lymphoma Colorectal Prostate Ovarian Leukemia Lung Head and Neck Other

Rajotte et al. J Cancer Survivorship, 2012

N = 187 57.7 (10.3) 28-91 33 (17.6) 154 (82.4) 111 (55.5) 15 (7.5) 9 (4.5) 10 (5.0) 9 (4.5) 10 (5.0) 5 (2.5) 5 (2.5) 29 (14.5) Rajotte et al. J Cancer Surviv. 2012

Before Class Mean (SD)

12 weeks Mean (SD)

P value

444.54 (147.79)

481.56 (170.97)



127.63 (20.24)

123.21 (19.54)



79.39 (13.60)

77.22 (13.22)


178.05 (41.76)

176.58 (43.64)


8.34 (8.51)

9.72 (8.32)


6-min Walk Test, total distance in meters Blood Pressure

Weight Sit and Reach (flexibility) Strength Upper body

45.94 (31.86)

60.01 (38.43)


Lower body

99.79 (67.79)

133.82 (87.89)


Rajotte et al. J Cancer Surviv. 2012

Before Class

12 weeks

Mean (SD)

Mean (SD)

P value

Physical Health Overall

44.95 (9.77)

47.74 (8.49)


Mental Health Overall

44.44 (10.74)

48.06 (8.88)



47.02 (9.22)

48.43 (9.14)



3.30 (1.76)

2.47 (1.53)

<.001 <.001


1.68 (0.93)

1.43 (0.85)

Social Support

17.74 (5.13)

18.32 (5.25)


Muscle Weakness

0.94 (1.01)

0.71 (0.87)


Muscle aches, stiffness

1.30 (0.99)

1.13 (0.93)


Joint Aches, stiffness

1.19 (0.85)

1.09 (0.85)


Rajotte et al. J Cancer Surviv. 2012


The program is safe for cancer survivors –  13.8% reported an injury during the time frame of the class •  3 unrelated to class, 3 aggravated previous injury, 5 muscle soreness related to exercise •  Only 1 injury continued with symptoms by the end of class (pulled back muscle)

–  2 flares of lymphedema in survivors with history " 

Attendance rates are high for these people who were generally inactive before the class –  88% attended more than half the classes Rajotte et al. J Cancer Surviv. 2012

Ø Mindfulness meditation Ø Improved sleep? Ø Psychostimulants

Medications Tested in Clinical Trials: Ø  Methylphenidate (e.g. Ritalin, Concerta) •  Increases norepinephrine and dopamine •  Randomized controlled trials (RCT) in cancer fatigue •  Most evidence of benefit •  Side effects responsible for some treatment failure Ø  Modafinil (e.g. Provigil is only brand in U.S.) •  Increases the release of monoamines, also elevates hypothalamic histamine levels •  Improves wakefulness •  No RCT for fatigue in survivors, ~2 non-RCT trials •  Few side effects, well tolerated Ø  Venlafaxine other antidepressants (e.g. Effexor) •  Little evidence •  No clear benefit for fatigue in cancer survivors

The 3 Ps: Ø  Prioritize: ü  What is most important, make sure that is first ü  Conserve energy for what matters most Ø  Plan: ü  Pick your best time of day to exercise or do what takes the most energy ü  Schedule your day, delegate, you are in control! Ø  Pace: ü  Make time for rest and sleep ü  Don’t insist things have to be like they were, accept that things are different now

Many different types: Ø  Neuropathic pain Ø  Muscle and connective tissue pain, aches, stiffness Ø  Muscle cramps Ø  Joint aches, pain, stiffness, limits to movement Ø  Post-surgery pain syndromes Ø  Lymphedema Ø  Osteoporosis Ø  Avascular necrosis, osteonecrosis Ø  GI Ø  Genital, urinary, pelvic

Medical Treatments •  Medications –  Opioids (morphine, oxycodone, etc) •  What changes when you have long-term pain?

–  Anti-convulsants, anti-depressants –  NSAIDS (anti-inflammatory: ibuprofen, naproxen) –  Topical creams, numbing or other ointments –  Muscle relaxants –  Steroids (infrequent)

•  Nerve blocks •  Surgery (infrequent)

Physical methods: •  Physical therapy –  Range of motion, strengthening, balance, flexibility, stabilization, etc.

•  TENS and other stimulators •  Exercise •  Massage •  Acupuncture •  Ultrasound •  Aquatic therapy •  Heat or cold packs •  Lubricants, moisturizers, dilators, local hormones

Psychosocial methods: •  Imagery, hypnosis •  Cognitive behavioral treatment: focus on thoughts, anxiety, fear components, meaning of pain •  Breathing and other coping skills (goal setting, pacing) •  Couples therapy (sexual and intimacy behaviors) •  Supportive therapy for suffering •  Education •  Assistance with practical needs •  Cultural adaptations and understanding

The role of Palliative Care: ü  Managing all symptoms together ü  Pain, Depression, Fatigue, etc ü  Side effects of treatment ü  Psychological aspects ü  Social needs ü  Spiritual needs


Not knowing what the future will bring Thinking about things that could go wrong


Wondering about the emotional toll Not having the same responsibilities

Health Burden

Not being able to do my usual activities Acute effects of treatment Long term effects of treatment


Changes in appearance Not feeling as masculine or feminine

Medical System Dealing with the medical system Finances

How to support myself and my family Dealing with insurance

Living with Uncertainty

* Not knowing what the future will bring * Thinking about things that could go wrong

Grief and Loss

* What will never be * What is changed forever

Fear of

* Intrusive thoughts about cancer recurring


* Worry encroaches on activities, sleep, enjoyment * Hypervigilance about physical sensations * Afraid to rebuild life - disappointment

“Someone likened cancer to a pink elephant, and the pink elephant initially is right there in front of your face, you know… and then as you get better, the pink elephant maybe goes to another room. And then as you get much better, the pink elephant goes down the street, but it’s always there and you always know it’s there.

De Marco et al. Oncology Nursing Forum, 31 (4) 2004.

•  Ranges 5%-89% in cancer survivors Ronson, Body. Support Care Cancer 10, 2002.

•  Persists at least up to 9 years post treatment Mishel et al. Psychooncology 14, 2005.

•  Not related to: –  Disease –  Income or education –  Symptoms •  Related to: –  Anxiety –  Pre-treatment fears –  Low levels of optimism –  PTSD –  Actual recurrence experience •  1/3 reported fear often or all of the time Llewellyn et al. J Psychosomatic Res, 65, 2008.

Find Meaning ü  Know Priorities •  What is most important? Make sure those are covered.

Find Balance ü  Benefit-Finding: find good in overall experience and what a person has made of it ü  Plan and make time for pleasure each day

Teach people to separate: Ø  What you DON’T control: ü  Feelings (fear of cancer returning) ü  Whether you get cancer or it returns ü  Other people and how they respond

Ø  What you DO control: ü  Your health behaviors ü  How you respond to feelings

Teach people a problem-solving approach: Ø  DO something you control to feel better. ü  What is one thing you can do now that you control? ü  One step at a time that is achievable this week.

Ø  Be an active participant, maintain health, make it your life. ü  Prepare for the worst (wills, advanced directives, inform family of wishes) ü  Expect the best (vacation, fun, what has meaning)

BAASH Ø  Be Aware ü  Notice emotional or physical signs of stress ü  Worry, sadness, loss/grief, insecurity, anger

Ø  Accept ü  Feelings are OK •  Don’t have to get rid of them •  Don’t have to let them take over •  What can I do regardless of worries?

Ø  SHare feelings ü  Someone or place where people share your experience ü  You may not control worries and fears, but you do control not being alone with them

ü  Refer to a therapist with expertise in life-threatening illness ü  Sort out feelings, thoughts, behaviors, relationships ü  Sometimes expressing feelings meets the need

ü  Understand what the problem is (diagnosis) Ø  Will help decide treatment needs: o  Medication o  Talk therapy o  Journal: write deepest thoughts and feelings o  Group or other social activity o  Yoga or other physical activity to reduce fatigue build physical

and mental stamina, calm and stability o  Testing for cognitive problems


Many symptoms improve with time, especially in the first 1-2 years.


Long term effects that do not resolve with time depend on disease and treatment.



Fatigue and distress are common and often go together


Worry and fear are ‘normal’ but need to be addressed when disrupting moving forward with life


Pain is less common but very disruptive to quality of life; consider palliative care referral if not responding to treatment

Symptoms can be treated, but not always easily. Ø 

Assess symptoms routinely


Refer for treatment if do not resolve with your efforts

Post-Treatment Survivorship: Impact of a community-based program on health-related quality of life and lifestyle change among post-treatment cancer survivors Findings from Cancer Transitions: Moving Beyond Treatment

Acknowledgements The Wellness Community Phase I Affiliates Cincinnati: Bonnie Crawford Sarasota, FL: John Kleinbaum Philadelphia: Kathleen Coyne St. Louis: Amy Eilers Pasadena: Doug Ware

The Wellness Community Phase II Affiliates East Tennessee: Debra Sullivan Central Indiana: Dwayne Kniola Central New Jersey: Ellen Levine Miami: Peggy Rios Redondo Beach: Tom May

Cancer Support Community Mitch Golant, Julie Taylor, Ivy Ahmed, Joanne Buzaglo, Vicki Kennedy, Sheri Singer, Missy Miller

Lance Armstrong Foundation Haley Justice Claire Neal

Overview •  •  •  •  • 

Aims Program Description Evaluation Study Design Key Findings Next Steps

Moving Beyond Treatment The transition from active treatment to posttreatment care is critical to long-term health. — IOM report, 2006

Study Aims 1.  Test the feasibility of implementing the program in the community 2.  Evaluate the impact among participants on health-related quality of life and health behaviors 3.  Understand and characterize the group experience

Program Description

Interactive Program •  6 week program •  2 ½ hour session each week •  Booster session

•  Expert Lectures with Q&A •  Group Discussion •  Professionally-Led Customized Exercise •  Nutrition Activities •  Tracking Personal Progress

Program Overview •  Session 1: Program Overview –  Get back to Wellness: Take Control of Your Survivorship

•  Session 2: Exercise for Wellness –  Customized Exercise

•  Session 3: Emotional Health and Well-Being –  From Patient to Survivor

•  Session 4: Nutrition Beyond Cancer •  Session 5: Medical Management Beyond Cancer –  What You Need to Know

•  Session 6: Moving Beyond Treatment –  Next Steps Towards Survivorship

•  Booster Session

Exercise for Wellness Research Positive and consistent effects of physical activity on: •  vigor and vitality •  cardio-respiratory fitness •  quality of life •  depression, anxiety •  fatigue/tiredness (Holtzman et al., 2004)

Cancer Transitions Customized Exercise

Nutrition Beyond Cancer Research Cancer survivors should follow dietary guidelines established for primary prevention of cancer as well as other diseases. (Doyle et al., 2006; Brown et al., 2003; AICR, 2004)

Cancer Transitions Focus on plant-based foods, whole grains, reducing fat especially saturated fat, and limiting alcohol

Emotional Health & Well-being Research Distress is the most common, yet underreported, side effect of cancer and can strain a person s coping style. (Jacobsen et al., 2005)

Cancer Transitions Teaches how to productively express negative emotions, reduce stress, increase positive emotions and enhance QOL through different techniques.

Medical Management Research After treatment, cancer survivors: •  have different health risks than before •  can have a hard time communicating with their healthcare team

Cancer Transitions Teaches how to: •  work most effectively with the participant s healthcare team •  discuss ways to manage physical changes

Evaluation Study Design •  Phase I: 5 Wellness Communities in 2007 (n=67) •  Phase II: 5 Wellness Communities in 2008 (n=84) •  Participants completed a series of validated questionnaires –  beginning of the first session –  end of the final session (6) –  mailed at 3-month and 6-month from the last session

Evaluation Study Design, cont. •  Outcome measures: –  SF-12v2 –  Impact of Cancer Scale* (41 item short version) –  International Physical Activity Questionnaire –  Fat- and Fiber-related Dietary Behavior Questionnaire˚

•  Weekly process evaluation •  Statistical analysis –  Longitudinal regression * Zebrack BJ, et al. (2006) Psycho-Oncology ˚ Shannon J, Kristal AR, et al. (1997) CEBP

Number of cancer survivors participating by phase and site


Phase I (n=67) Phase II (n=84)












15 9





J tra

lI nd

tra C en

C en

ia n




se ne s

Te n


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de n

R ed

ou is

sa Pa

hi a

St .L


el p ila d


ot a, ra s


C in

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Evaluation Study Participants Program Participants (n=151) Last treatment â&#x2030;Ľ 24 mo (n=7) Attended <3 sessions (n=10) Evaluation Study (n=134)

Participation Rates (n=134) Attendance Session 1 2 3 4 5 6

% 94 90 88 81 80 75

Response Rate Post-test 3 month follow-up 6 month follow-up

% 89 63 52

Sample Description (n=134) Socio-demographics –  87% female –  Mean age (range): 55 years (24 – 86) –  75% white, 8% black, 7% Hispanic, 5% Asian, 2% AIAN –  63% married/partnered –  69% college degree –  41% unemployed/ retired –  Among employed, 21% household income < $40k, 38% > $100k

Sample Description (n=134) Medical history –  BMI: 45% normal; 31% overweight; 22% obese –  Cancer diagnosis: 50% breast, 14% gynecologic, 7% blood –  Mean time since treatment: 9 months –  77% chemo, 80% surgery, 61% radiation –  49% had one or more comorbid condition –  2 smokers –  39% excellent or very good health, 44% good, 17% fair

Most Recent Cancer Diagnosis 70


50 40 30 20


14 8









1 er th O


om a an

ne y

n ai Br

Th yr o

M el

d ea H

Ki d

ne ck d an


at e st Pr o

l ta ec or ol






ol o ec

em at H

yn G


ea st


0 Br

Number of participants


Key Findings

Change in HRQOL




Health-related quality of life


* 50





46 44 42 0







Time (weeks) * p<0.05 compared to baseline

Change in Negative IOC Baseline 6 weeks 18 weeks 30 weeks Mean (95% CI) Health-related worry





Negative outlook





Body changes





Life interference





Negative self-evaluation 2.5




*p<0.05 compared to baseline.

Change in Physical Activity



2000 Total activity (min/wk)

* 1800


1600 1400 1200 1000 800 0







Time (weeks)

* p<0.05 compared to baseline

Change in Level of Activity 100% 90% 36






60% 50%

High Moderate Low


40% 33




20% 27



0% Baseline

6 weeks


10 18 weeks

30 weeks

Change in Fat- and Fiber-Related Diet 2.50 2.45




Dietary score



2.30 2.25 2.20 2.15 2.10 2.05 2.00 0


* p<0.05 compared to baseline


15 Time (weeks)




What Do Participants Say? •  •  •  •  • 

Thanks for letting me be a part of this program! I loved it! (facilitator) It helps to hear from other people with problems and how they handle things. I ve noticed I ve moved forward in my wellness… I m very excited!!! I m ready to exercise and move!!! I have gotten a lot out of each session & hate to see it end in another week. This program was very helpful to me at this stage of the recuperation. I m not sure I could have done it in the beginning. Very valuable information. Thanks for everything!

Conclusions Participants experienced positive changes in healthrelated quality of life and lifestyle change following the intervention and at 3- and 6-month follow-up –  Increase in HRQOL around physical, mental and social functioning –  Decrease in negative IOC, particularly healthrelated worry –  Increase in physical activity –  Improvement in fat- and fiber-related dietary habits

Next Steps •  Develop web-based component •  Train-the-trainer program •  Disseminate Cancer Transitions •  Issued RFP to 19 other sites •  Expand evaluation: 2 community cancer center, 1 academic NCI designated cancer center, 1 TWC

Thank you!

The Evolution and Validation of CancerSupportSource™: An evidence-based, psychosocial distress screening program designed for community practice settings Mitch Golant November 13, 2012


g Uniting The Wellness Community and Gilda’s Club Worldwide

The Challenge of Cancer Care Today Growing Numbers •  Today there are more than 13 million cancer survivors in the US •  There will be more than 1.5 million new cases this year alone •  There are more than 77 million baby boomers in the US today Growing Complexity More screening, diagnostic, and biomarker tools with complex results •  More treatment choices than ever before •  Multiple bouts, recurrence • 

Growing Need More people are in need of more services •  Great financial strain in this challenging economic environment • 


Striving for Complete Cancer Care

Health is a state of complete physical, mental and social well-being and not merely the absence of disease or infirmity.

–WHO Definition of Health

All cancer care should include appropriate psychosocial support. – IOM Report: Cancer Care for the Whole Patient

Enter The Cancer Support Community Our Mission: To ensure that all people impacted by cancer are empowered by knowledge, strengthened by action, and sustained by community


CSC’s Affiliate Network In the US: Phoenix, AZ Cathedral City, CA Pasadena, CA Redondo Beach, CA Santa Monica, CA Walnut Creek, CA Westlake Village, CA Wilmington, DE Washington, DC Ft. Lauderdale, FL Miami, FL Sarasota, FL Atlanta, GA Chicago, IL Indianapolis, IN Davenport, IA Louisville, KY Salisbury, MD Ann Arbor, MI Detroit, MI Grand Rapids, MI St. Louis, MO Bozeman, MT

Bedminster, NJ Eatontown, NJ Hackensack, NJ Linwood, NJ Buffalo, NY New York, NY Rochester, NY White Plains, NY Cincinnati, OH Columbus, OH Bethlehem, PA Philadelphia, PA Pittsburgh, PA Warminster, PA Knoxville, TN Nashville, TN Dallas, TX Seattle, WA Madison, WI Middleton, WI


In Development:

Simcoe Muskoka, Ontario Greater Toronto, Ontario Tel Aviv, Israel Tokyo, Japan

Paso Robles, CA Denver , CO Branford, CT Evansville, IN Greenville, NC Hanover, MA Minneapolis, MN Kansas City, MO Dayton, OH Austin, TX Southeastern Ontario

In Partnership: ARC Cancer Support Centre Dublin, Ireland Hope & Cope, Montreal, Canada Maggie’s Center United Kingdom The Carewell Community, Manila, Philippines V Care, Mumbai, India


Why Screen for Distress? •  Approximately 40% of all people with cancer have significant levels of distress •  Psychosocial distress is associated with: - Decreased adherence to treatment - Relapse and diminished survival •  Higher medical costs, greater burden on the medical system •  Concerns beyond emotional symptoms

THE NEED: Integration of Care •  Screening cancer patients for psychosocial distress is a new accreditation standard, established by the Commission on Cancer of the American College of Surgeons, effective 2015. •  Screening is an essential tool for identifying the barriers and maximizing the benefits of medical care. •  With reliable, problem-focused screening tools, resources can be allocated based on data; assessment is streamlined; and, the psychosocial team is aware of patient concerns prior to their initial assessment. •  There are few available solutions available to meet the demands for screening the 12.5 million cancer survivors seen in the U.S.

Cancer Support Source™ •  CancerSupportSource™ (CSS) is an evidence-based, validated, psychosocial distress screening program designed for community practice settings, where nearly 85% of cancer patients are treated. •  CSS effortlessly integrates a *valid and reliable* self-report measure with automated linkages to vital information and referral for support services thereby reducing the social, emotional and practical barriers that can impede optimal cancer care. •  CSS empowers patients to not only rate their current concerns, but to identify the specific type of assistance they desire for addressing those concerns (i.e., talk to a staff member, referral to online resources, quality information or no help).

The Evolution of CancerSupportSource: 1.  Created and Validated 36-item Tool 2.  Demonstration Project to test feasibility Ø  Lessons Learned- Refine and Reduce (36 to 25 items)

3.  CancerSupportSource Validation 4.  CancerSupportSource Pilot to test feasibility of screening in the community

The Validation Study Study Objective: •  Test the psychometric properties of CancerSupportSource TM (CSS) (Reliability, Validity, Sensitivity, and Specificity) Characteristic

Sample Characteristics (N=251) •  •  •  •  •  •  •  •  •  • 


Race Caucasian African-American

Phoenix Central New Jersey East Tennessee Pasadena Greater Lehigh Valley Miami Philadelphia Quad Cities (IA) San Francisco Bay area Cincinnati/ N. Kentucky

87% 3%

Sex Female


Education Bachelors and above


Time since diagnosis ≥ 2 years


Total annual income Less than 40k

15% Average

The Validation Process:

Age(30–83 years)


Time since diagnosis

3.5 years

•  Comparing our measure to other Gold Standard Measures to ensure top quality and effectiveness


Results: Patient’s Reports Figure 1. Top Five Concerns

Figure 2. Top Five Requests for Assistance


The CSS demonstrated high internal consistency (Cronbach's alpha=0.92).


Percent agreement between test and retest responses was acceptable (>66%) for 18 of the 25 items. The ICC was acceptable (≥0.75) for 16 of the 25 items.


The total distress score created using summed item scores correlated substantially with the: FACT-G (R-squared=0.49, p<0.001), CES-D (R-squared=0.46, p<0.001) and Distress Thermometer (R-squared=0.37, p<0.001) indicating strong concurrent validity and the ability to discriminate groups of clinical relevance.


Results: Psychometric Properties Figure 3. Mean Number of Items Rated ‘Seriously’ or ‘Very Seriously Concerned’ by Clinical Group*

Figure 1. Top Five Concerns

Conclusions 1.  CSS is the first web-based distress screening tool validated for use in the community setting 2.  The CSS shows moderate to strong psychometric properties 3.  This study takes an important step toward achieving psychosocial screening, referral and follow-up for all cancer survivors 4.  The present study addresses the screening chasm between the hospital and the community and is the first step in demonstrating the feasibility of screening in the community 5.  Distress screening will provide for the early identification and rapid reduction of the psychosocial barriers that may impact quality clinical outcomes, overall health and well-being, and patient satisfaction with the cancer care and with the CSC experience.

Acknowledgement of Funding