This document provides an overview and summary of a conference on early age onset colorectal cancer (EAO-CRC). It begins with an introduction by Dr. Thomas K. Weber and discusses increasing incidence trends in CRC, particularly among younger age groups. Several presentations are summarized that cover topics like psychosocial support needs, integrative wellness strategies, and survivorship care programs. The importance of a multidisciplinary approach to meet patients' complex needs is emphasized.

2. Introduction and Overview
Dr. Thomas K. Weber MD FACS
Course Director and Host
Professor of Surgery, State University of New York at Downstate
President and Founder Colon Cancer Challenge Foundation

6. The New York Times February 28, 2017

8. Siegel et al JNCI March 1, 2017

9. Incidence trends by age: 50+ versus 20-49
Source: SEER 9 delay-adjusted rates, 1975-2012; 2-yr moving average.
0
2
4
6
8
10
12
14
Men
Women
51% since 1994
0
50
100
150
200
250
300
Incidencerateper100,000
Men
Women
Ages 50+ Ages 20-49

10. Increase is confined to the left side
0
0.5
1
1.5
2
2.5
3
3.5
4
4.5
5
1975-77 1980-82 1985-87 1990-92 1995-97 2000-02 2005-07 2010-12
Incidencerateper100,000
2.6 in 1991
4.8 in 2012
Source: SEER 9 delay-adjusted rates, 1975-2012; 3-yr moving average.
Distal colon
2.1% annually since 1994
Rectum
2.7% annually since 1991
Proximal colon

11. Trends in young adults by 10-year age group
40-49
1.9% annually since 1994
30-39
2.2% annually since 1988
20-29
3.8% annually since 1987
0
5
10
15
20
25
Incidencerateper100,000people
0
0.5
1
1.5
2
2.5
20-29 years
Source: SEER 9 delay-adjusted rates, 1975-2012; 3-year moving average.
20-29 years
6%
30-39 years
20%
40-49
years
74%

12. FUTURE TRENDS: US COLON & RECTAL CA BY AGE GROUP
A
Colon Cancer
Rectal Cancer

13. Siegel et al, Journal of the National Cancer Institute
(2017) 109(8):
• “From 1989-90 to 2012-2013 the
proportion of rectal cancers
diagnosed in adults younger than
age 55 doubled from 14.6% to
29.2%. Compared with adults born
circa 1950, those born circa 1990
have double the risk of colon
cancer and quadruple the risk of
rectal cancer. As nearly one-third of
rectal cancer patients are younger
than age 55, screening initiation
before 50 years should be
considered.”

14. Early Age Onset Colorectal Cancer
A 21st Century Cancer Control Challenge
• What do we mean by EAO CRC?
• CRC incidence in the US?
• Is EAO CRC a major problem? Or not really?
• Specific Clinical Challenges of EAO CRC
• QOL Challenges
• What is causing the increase in EAO CRC
• How can we reduce EAO CRC Incidence, Morbidity and Mortality
• What can CGA, InSiGHT and others do to contribute to these efforts
• The EAO CRC Annual Summit

15. The Impact of Young Adult CRC
• Approximately 10% of the 140,000 CRC cases / year in the US
• 14,000 cases of CRC diagnosed in individuals <50 in the US per year
• This exceeds the annual incidence of:
• Hodgkin Lymphoma: 8,500
• Acute Lymphocytic leukemia: 6,600
• Chronic Myeloid Leukemia: 8,200
• Cervical Cancer: 13,000 (Noted by Rebecca Siegel JNCI 2017)

16. Siegel et al, Journal of the National Cancer Institute
(2017) 109(8):
• “From 1989-90 to 2012-2013 the
proportion of rectal cancers
diagnosed in adults younger than
age 55 doubled from 14.6% to
29.2%. Compared with adults born
circa 1950, those born circa 1990
have double the risk of colon
cancer and quadruple the risk of
rectal cancer. As nearly one-third of
rectal cancer patients are younger
than age 55, screening initiation
before 50 years should be
considered.”

17. The 2017 3rd Annual EAO CRC Program
• Multiple (many!) Survivor discussion forums, surveys and conference calls!
• Michael’s Mission & the Raymond Foundation
• The Colon Cancer Alliance
• Fight CRC
• Colon Town
• Drs. Peterson, Woodard & You, MD Anderson Cancer Center
• MSKCC (Too numerous to list!! Thank You All!!)
• Danielle Ivarone & the NYU Langone Perlmutter Cancer Center!!!
• AliveAndKickn It Takes Guts InSiGHT CGA & NCCRT!!!!

20. The COVINA Group
March 11th, 2017 NYC
T. Weber MD for the Young Adult CRC Research Consortium

21. The “Other Agenda”
For EAO CRC 2017: Based on the Covina Group Discussions
• To come to a consensus on the top priority Action Items:
Screening Guidelines : Family Health History : Earlier Diagnosis of
the Symptomatic Patient : The Causes – “The Epi Challenge”
• To lay out a road map of the constructive “Next Steps we plan to take.
• Build on the unique to date awareness prompted by Rebecca Siegel’s
article and the media attention it has received e.g. NY Times article
• Launch the formation of the Young Adult CRC Research Consortium.
• The COVINA Declaration?
• Support tools for patients and their Care Givers: The Provider Buddy
“App” for Patients, Care Givers & Providers
T. Weber MD for the Young Adult CRC Research Consortium

26. Finding the Ideal State of Wellness
Moderated By Susan K. Peterson PhD MPH Course Co-Director
Professor of Behavioral Science The University of Texas MD
Anderson Cancer Center

27. Psychosocial Support After an
EAO-CRC Diagnosis
Susan K. Peterson, PhD, MPH
Professor
Department of Behavioral Science
@S_K_Peterson
Early Age Onset Colorectal Cancer
Symposium
March 12, 2017

28. Integrating psychosocial health care into
cancer care and survivorship
Institute of Medicine (2008)
• Psychosocial support services and
interventions are important part of
cancer care
• Enable patients, their families, and
health care providers to optimize
biomedical health care
• Manage the psychological,
behavioral, and social aspects of
cancer and its consequences so as to
promote better health and quality of
life
Health and Medicine Division (HMD), formerly IOM, National
Academies of Science, Engineering and Medicine, 2008

29. Standard to improve psychosocial care for cancer survivors
Health and Medicine Division (HMD), formerly IOM, National
Academies of Science, Engineering and Medicine, 2008

30. Finding the Ideal State of Wellness
Psychosocial/Psychological Support(s)
Allison Rosen MS Dan L. Duncan Cancer Center Baylor College of Medicine
Stacy Hurt MHA MBA UPMC Integrative Oncology
Zana Correa NP-BC Memorial Sloan Getting Cancer Center

31. A L L I S O N R O S E N M . S . B A Y L O R C O L L E G E O F M E D I C I N E
TOOLKIT TO SURVIVAL: A
SURVIVOR’S PERSPECTIVE

32. Some challenges in meeting psychosocial
support needs in EAO-CRC
• Recognize specific needs in EAO-CRC
– Psychological well-being, feeling different, cancer & health
info needs, work/school, family, peer & social relationships,
financial & insurance, recurrence fears, post-treatment
adjustment
• Coping at each phase
– Diagnosis: information, relational interactions
– Treatment: taking action, control, adaptation
– Survivorship: finding normalcy, long-term impacts
• Reaching EAO-CRC survivors
– > 70% receive care in community settings, outside of
academic medical centers
– Rural areas: 20% survivors vs. 3% of oncologists
– Recognizing diversity
• Defining where to start and what to do

33. PSYCHOSOCIAL/PSYCHOLOGICAL SUPPORT
• Initial Diagnosis: seek support
• One on One support
• Local groups
• Imerman’s Angels
• Hospital offer matching programs
• Support groups specific for AYA: if they don’t have one
create one
• Psychologist or Psychiatrist: No shame

34. ATTITUDE IS EVERYTHING
Take a negative and turn it into a positive
• Volunteer to help others to understand you are not alone
• Focus on work and put all your energy into being your best
• Positive attitude makes a huge difference

35. USING WHAT YOU LEARN
• Use your experiences to help others: encourage screenings
• Still attend Support group: can relate to those just starting
their journey
• Serve on councils to make change
Young Adult Advisory Council
Patient and Family Advisory Council
Steering Committees

36. MY NEW NORMAL
• Helping others continues to be a source of
• Growth
• Positivity
• Healing
Everyone’s toolkit will be different

37. WHO SAYS YOU CAN’T GO WHITEWATER RAFTING WITH AN
OSTOMY?

38. THANK YOU!
Allison Rosen
Baylor College of Medicine
Dan L. Duncan Comprehensive Cancer Center
Office of Outreach and Health Disparities
Ar1@bcm.edu

39. Mental Health Along the
Cancer Continuum:
Staying One Step Ahead
STACY HURT, M.H.A., M.B.A.
stacyhurt.net

40. WE ARE
stacyhurt.net

41. Early Age Onset CRC
Roles and Responsibilities
• Caregiver (children, spouse, parents, pets)
• Partner (sex, intimacy, dating, fertility)
• Employee
• Friend
• Us (coach, drummer, volunteer, scrapbooker, wine aficionado)
stacyhurt.net

42. Early Age Onset CRC
Feelings
• Loneliness / Isolation (Am I the only one?)
• Anger / Resentment (Why me?)
• Vulnerability / Restriction (What can I no longer do?)
stacyhurt.net

43. “Cancer Continuum"
Initial
Diagnosis
(Depression)
Beginning
Treatment
(Anxiety)
Ongoing
Treatment
(Depression)
Recovery
(Anxiety)
stacyhurt.net

44. Initial Diagnosis: Emotions
• Fear of Unknown (Paralyzing)
• Deep sorrow, shock, despair, grief
• Regret
• Panic
• Desperation
• GOAL > TO MOVE FORWARD
stacyhurt.net

45. Initial Diagnosis: Tools
• Support System
1. “Cancer Coach”
2. Doctor/Nurses
3. “Inner Circle”
• Thought Replacement Therapy
• Pharmacological Intervention
stacyhurt.net

46. Beginning Treatment: Emotions
• Fear of Transformation (Loss of Control)
• Frustration
• Reluctance
• GOAL > TO MAINTAIN BALANCE
stacyhurt.net

47. Beginning Treatment: Tools
• Yoga / Movement / Exercise
• Nutrition
• Meditation / Visualization
• Music Therapy / Art Therapy
• Spiritual / Faith / Religious
• Activities That Bring Joy
stacyhurt.net

48. Ongoing Treatment: Emotions
• Fear of Defeat (Competition)
• Indefinite
• Weary
• GOAL > TO STAY RESILIENT
stacyhurt.net

49. Ongoing Treatment: Tools
• Adaptations / Accommodations
• Thought Shift
stacyhurt.net

50. Recovery: Emotions
• Fear of Recurrence (Uncertainty)
• Euphoria
• Victory
• Strength
• Satisfaction
• Doubt
• GOAL > TO REMAIN VIGILANT
stacyhurt.net

51. Recovery: Tools
• Pay It Forward
• Return to Work
• Self Reflection
• Evaluation / Assessment
• Seek Therapist
stacyhurt.net

52. stacyhurt.net

53. What is Survivorship?

54. What is Survivorship?
– (NCI) beginning at diagnosis
– (IOM) focuses on the post-treatment phase
– (NCCS) includes family members/care givers
• More than 15.5 million survivors in the US
– Estimated to grow to greater that 20 million by 2026
– >1million colon and rectal cancer survivors in US today
SEER Cancer Statistics Factsheets: Colon and Rectum Cancer. National Cancer Institute. Bethesda, MD,
http://seer.cancer.gov/statfacts/html/colorect.html

55. Potential effects of colorectal cancer treatment
• Bowel dysfunction
• Bladder dysfunction
• Fatigue
• Peripheral neuropathy
• Sexual dysfunction
• Psychosocial issues
• Fertility issues
• Cognitive issues
• Intimacy concerns/
body image
• Risk for secondary
cancers in radiation
field
• Employment / financial
concerns

56. Survivorship Care

57. Survivorship Care

58. Survivorship Programs

60. 1497
3459
4562
6252
7589
8486
9480 9640
11139
13083
14294
2006 2007 2008 2009 2010 2011 2012 2013 2014 2015 2016*
Adult Survivorship Clinics
*Annualized

61. Components of survivorship care
1. Prevention of new primary and recurrent
cancers/other late effects.
2. Surveillance for new cancers
3. Identification/ interventions for late effects of
cancer and its treatment
 Health promotion education
 Treatment summary and care plan
4. Coordination of care between oncologist and
primary care providers.

62. SurvivorshipTreatment Summary
http://www.cancer.net/survivorship/follow-care-after-cancer-treatment/asco-cancer-treatment-and-survivorship-care-plans

63. Health Promotion / Education

64. https://www.cancer.org/healthy/stay-away-from-tobacco/guide-quitting-smoking.html

66. Interdisciplinary Referrals
• Nutrition Counseling
• Wound and Ostomy
Nurse
• Sexual Health Program
• Clinical Genetics
• Rehab Medicine
• Dermatology
• Integrative Medicine
• Counseling Center
• Smoking Cessation
Colorectal Cancer Survivorship

67. What should patients know?

68. Importance of Follow-Up Care:
• What is my chance of recurrence now?
• How can I get a cancer treatment summary?
• What tests will I need for surveillance of my cancer?
• What other screening tests do I need to have done?
• What about my family? Should they have colonoscopies?
• Do I need a primary care provider?
• Support groups?
• What other resources are available ?

69. Education for Survivors: Resources
https://www.mskcc.org/cancer-care/patient-education

70. http://www.cancer.net/sites/cancer.net/files/cancer_survivorship.pdf
Education for Survivors: Resources

71. http://www.journeyforward.org/
Education for Survivors: Resources

72. Education for Survivors: Resources

73. Conclusion
• Increasing number of cancer survivors
• Multidisciplinary care to meet complex needs
• NP/PA led clinics successful model of care
• Education for survivors and families
• Final word for patients...Ask questions

74. Acknowledgements
Department of Colorectal Surgery at MSK
• Dr. Julio Garica-Aguilar (Chief of Colorectal Surgery)
• Dr. JoseGuillem
• Dr. Garrett Nash
• Dr. Philp Paty
• Dr. James Smith
• Dr. MartinWeiser
Program Director of Adult Cancer Survivorship
• Stacie Corcoran MS, RN

75. Thank you

76. Integrative Medicine and Wellness Strategies
Including Optimal Nutrition/Exercise/Wound
Ostomy
Vashti Livingston MS CWOCN DAPWCA Kimmel Urology MSKCC Ambulatory Division
Toyoko Yasui, MSN RN OCN AHN-BC HWNC-BC CCAp White Plains Hospital Center for
Cancer Care
Suzanne Gerdes, MS, RD, CDN Clinical Dietitian/Nutritionist Memorial Sloan Kettering
Cancer Center

77. Eat Well to Feel Well
Suzanne Gerdes, MS, RD, CDN
Clinical Dietitian/Nutritionist
Memorial Sloan Kettering Cancer Center
March 12, 2017

78. Magic Bullet?

79. Tip the Scale in the Right Direction
5 point decrease in BMI = 15% risk reduction for colorectal cancer

80. What Do I EAT?
Red Meat
Processed Meat
Alcohol
Added Sugars
Variety of Plant-based Foods
Fiber
Whole Foods

81. Move More

82. Sleep and Stress Less.

83. Steps to Feel Well
1. Aim for a healthy weight.
2. Change the way you eat.
3. Move your body.
4. Spoil yourself with sleep.
5. Manage your stress.

84. Find More
• Recipes
– CookingLight.com
– Skinnytaste.com
– Cookforyourlife.org
• Calorie and Fiber information
– MyFitnessPal.com
– LoseIt.com
– CalorieKing.com
• Nutrition & Cancer Information
– AICR.org

85. Thank you!
Questions?

86. INTEGRATIVE MEDICINE and
WELLNESS STRATEGIES
WOC Nurses (Wound, Ostomy and
Continence) and Early Onset Colorectal Cancer
Patients
Vashti Livingston MS CWOCN DAPWCA
livingsv@mskcc.org
www. MSKCC.org

87. Objectives
• Discuss the current role of the WOC nurse taking care of
colorectal patients.
• Identify howWOC nurses can partner with early onset
colorectal patients and improve our role, impact, and support.
DISCLOSURE: NO CONFLICTS OF INTEREST

88. Role of theWOC Nurse
• www.wocn.org Approximately 7600WOC nurses but only 40% take care of
people with ostomies
• There are differences in theWOC nurse’s time and availability with colorectal
patients from institution to institution.
• Stoma Site Marking (WOCN Society and ASCRS Position Statement on
Preoperative Stoma Site Marking for Patients Undergoing Colostomy or
Ileostomy surgery) JWOCN 2015.
• A preoperative visit is preferred for the patient scheduled to have ostomy
surgery for both assessment and education of the patient and their family
about their future ostomy.This evaluation can help reduce postoperative
problems such as leakage, fitting challenges, need for expensive custom
pouches, skin irritation, pain and clothing concerns. Poor stoma placement
can cause undue hardship and have a negative impact on psychological and
emotional health. Proper placement of the stoma enhances patient
independence in stoma care and resumption of normal activity.
• Traditionally the WOC nurse would be present at the MD Informed Consent
Visit and years ago this was in the operating room/hospital. Often the visit is
rushed so teaching has to be modified.
• ManyWOC nurses are using/exploring models such as pre operative ostomy
group classes and online/virtual education (which is more suited for younger
patients). Enhanced Recovery After Surgery (ERAS ) initiatives.

89. WOC Nurse Education for the Colorectal Patient: OSTOMY
• Discussion about the types of ostomy (colostomy, ileostomy) and ostomy
pouches
– Disposable closed end pouches; drainable pouches of various sizes; transparent or
opaque; with filters for gas and odor; stoma caps.
– Manufacturers have sampling programs and provide WOC nurse support; financial
support; distributors and coverage for supplies.
• Management options with an ostomy
– Pouching with modifications and accessories (desiccants, odor and gas control;
lubricating gels; colostomy irrigation; diet and hydration.
• Concealment of an ostomy and clothing
– Clothing options; discussion about lifestyle, activity (exercise, swimming, work/career,
travel, etc); body image changes and adaptation; pregnancy, children and family.
• Intimacy with an ostomy
– Concealment; tips; dating and disclosure; impact on sexuality.
• Support
– Colorectal support groups; online/virtual colorectal support groups; local ostomy
support groups;Trained Patient to PatientVolunteers (UOAA model OstomyVisitor);
online forums and blogs.

90. Concealment Garments For Men

91. Concealment Garments andTips

92. What’s
• Google (on the smart phone
during the visit)
• Instagram
• Blogs and Personal Stories
(“Irrigation:Its Not Just For Crops
Anymore”)
• YouTube
• Twitter #coloncancer;#ostomy;
#colostomy
• Facebook (The ColonClub)
• Pinterest (Images)
• Tumblr
• DiseaseAwareness “ostomy
selfies”
• There is a problem where some
websites have some outdated
information on ostomies and
lifestyle.
• There is a need for slight revision
of the websites with a task force
of EOS colorectal patients and
WOC nurses (our millennial and
Generation X )
• Update our patient teaching
materials. Use technology, more
audio visuals, webinars,and our
approach to working with
younger patients (Isaac D
JWOCN 2013)
• Patient Portals: underutilization
of secure server
Working and What’s Not

93. Young, Diagnosed, Surviving
Ostomy Selfie

94. Sharing:The Journey to Wellness

95. References
• Altschuler A, Ramirez M, Grant M et al. The Influence of Husbands’ or Male
Partners’ Support onWomen’s Psychosocial Adjustment to Having an
Ostomy Resulting from ColorectalCancer. JWOCN 2009:36(3) 299-305
• Batalla, Mary GraceAnne P. Presence of Stoma Nurse and Quality of Life
of ColorectalCancer Patients with Fecal Ostomy in the Early Post Operative
Phase. European Journal of Cancer July 2015 S2;51:e31
• Cengiz B, Bahar Z. Perceived Barriers and Home Care NeedsWhen
Adapting to a Fecal Ostomy: A Phenomenological Study. JWOCN
2017:44(1);63-68
• DanielsenAK, Soerensen EE et al. Learning to Live with a Permanent
Intestinal Ostomy : Impact on Everyday Life and Educational Needs.
JWOOCN 2013;40(4):407-412
• Isaac D. UsingTechnology for the Advancement of Patient Education.
JWOCN 40 May 2013
• Kelly K, Noyes K, Dolan J et al. Patient Perspective on CareTransitions
After Colorectal Surgery . Journal of Surgical Research June 2016(203) 103-
112

96. References
• Kent D, Long MA, Bauer C. RevisitingColostomy Irrigation: AViable Option for Persons
with Permanent Descending and SigmoidColostomies JWOCN 2015;42(2):162-164
• Klasnja P, PrattW. Healthcare in the pocket: Mapping the space of mobile-phone health
interventions. JournalOf Biomedical Informatics 45 (2012) 184-198
• Li Chia-Chun. Sexuality Among PatientsWith a Colostomy: An Exploration of the
Influences of Gender,SexualOrientation, and Asian Heritage . JWOCN 2009:36(3):288-
296
• Phatak ,UR, Li, LT et al. Systematic Review of Educational Interventions ForOstomates .
Dis Colon and Rectum 2014;57:529-537
• SunV; Grant M; et al. Surviving Colorectal Cancer: Long-term, PersistentOstomy-
SpecificConcerns and Adaptations. JOCN 2013;40(1):61-67
• Tallman N.J, Cobb M.D, Grant M, Wendel C.S,Colwell J, Ercolano E, Krouse R.
Colostomy Irrigation: Issues Most Important toWOC nurses. JWOCN 2015;42(5):487-493
• WOCN Society andASCRS Position Statement on Preoperative Stoma Site Marking
for Patients Undergoing Colostomy or Ileostomy Surgery JWOCN 2015 May-
Jun:42(3):249-52
• Photos retrieved from: www.ostomysecrets(2/2017); www.stealthbelt.com(2/2017);
www.colonclub.com(3/2017);www.pinterest.com(3/2017).

97. Toyoko Yasui, MSN, RN, OCN
AHN-BC, HWNC-BC, CCAP
Holistic Nurse Coordinator

98. Holistic Approach
 Holistic approach: maximizes the benefits of conventional care, and, combined with
complementary & integrative care, may lead to healing
 Looks at the needs of a person as a whole:
body, mind, spirit/emotions must be assessed and addressed.
 To heal, rather than to cure
 Caregiver’s role in this approach:
a tool in the healing process

99. Patient Centered Care
 Your Presence with Good Intention
 Healing Environment
 Communication WPH Nursing Professional
Practice Model
 Based in Nursing Theory:
 Patricia Benner
 Margaret Newman
 Martha Rogers
 Jean Watson
 Elizabeth Barrett
 Nightingale

100. Concept of Total Pain
Total
Pain
Physical
Social
Spiritual
Psychological

101. Pain Process
 Four steps for treatment
1. Transduction (NSAIDs, Local Anesthetics &
Anticonvulsants)
2. Transmission (Opioids, NMDA Antagonists)
3. Perception
(Distraction, Relaxation, Imagery)
4. Modulation (Tricyclic Antidepressants,
Opioids, GABA Agonists)

103. Pain management, Shortness of breath,
Anxiety, and Depression
 Try relaxation techniques: Guided imagery, Mediation,
Deep breathing, Music
 Use gentle Touch/massage, and Energy Healing
 Aromatherapy
 Excises, Stretching, Reposition
 Use Ice, Heat, Warm blanket, and Fan
 Exposure to natural light
 Provide emotional support:
Listen closely, provide reassurance in soft voice

104. What Does Holistic Care Program
at White Plains Hospital Offer?
 Provides evidence-based complementary and integrative
modalities/therapies
 2 Full time Holistic nurses
 14 volunteers are trained in Healing Touch
 Several bedside nurses who have been trained in Healing Touch and are
part of the Holistic Nursing committee
 Goals/outcomes:
 Improve quality of life,
 Manage symptoms (pain, anxiety, dyspnea, insomnia, fatigue,
nausea)
 And help individuals cope with illness and actively participate in
their health care and healing

105. Modalities/Therapies WPH Provides
 Relaxation (Breathing exercises)
 Guided Imagery
 Meditation
 Reiki (Energy Healing)
 Therapeutic Touch (Energy Healing)
 Healing Touch (Energy Healing)
 Gentle Touch/massage (‘M’ technique)
 Aromatherapy

106. Background
 In 2014 Holistic Nursing Care Program began
 Followed by Healing Touch Program
 Care for in-patient and out-patients at Cancer Center
 Services offered to patients and caregivers, including staff
 Referrals from any clinical personnel:
MD, NP, RN, SW, PT, or/and patient/family member
 No doctor’s order required

107. 0
500
1000
1500
2000
2500
3000
3500
total# referral average
visit/month
employee
2014
2015
2016
Numbers are rising!

108. Total Holistic Visits by Month 2016
0
100
200
300
400
500
600
Jan Feb Mar April May June July Aug Sep Oct Nov Dec

109. Magnet Exemplar
 How Often Is Your Pain Well-controlled?
 Pre-Intervention Data: Average of 61.8% of WPH patients responded
“Always” to HCAHPS Patient Satisfaction Survey Question.
 Interventions:
 Implementing Holistic Nursing modalities to patients
 Educating staff about Holistic modalities Care Committee Meeting
 During Nurses Week more than 100 nurses experienced these Holistic
modalities
 Intervention Timeframe: March 2014 – July 2014
 Post-Intervention Data: Average of 70% of WPH patients responded
“Always” to the HCAHPS Patient Satisfaction Survey Question.
 This represents 13.3% improvement in HCAHPS Pain Score.

110. WPH Pain Management HCAHPS Scores
Jan-14 Feb-14 Mar-14 Apr-14
May-
14
Jun-14 Jul-14
Aug-
14
Sep-14 Oct-14
Nov-
14
Dec-14
How well was your pain controlled 61.5 62 64.2 65.2 70.4 71.8 65.7 72.3 65 69.6 78 64.8
0
10
20
30
40
50
60
70
80
90
Patient Satisfaction
Mean
How well is your pain controlled?
“Always”
Intervention
March - July 2014

111. Evaluations at Cancer Center
 50 patients completed (January through April, 2016)
 #1 Energy Healing (Healing Touch, Reiki, TT)
 #2 ‘M’ technique on Foot
 #3 Relaxation techniques
 Reasons for referral: to promote relaxation and well-
being, and to manage stress, anxiety, pain, fatigue,
insomnia and nausea
 Did therapy help? “YES,” responded everyone.
 How was the therapy? “Relaxing,” responded all, and
“Feeling good, less stress, anxiety, pain, fatigue, and nausea,”
and “sleep better, more energized.” “Calming, soothing,
comforting, and supportive.”

112. Case 1: Treatment of anxiety at end-of-life
 43 y.o female with end-stage colon cancer with metastases
 c/o severe pain and high anxiety
 Offered Guided Imagery with Energy Healing
 Being at a beach, in England, at home, and smile of niece
 “Guided Imagery and Energy Healing,” said Miss M., “helped
me to relax and manage my anxiety.”
 Occasionally her family joined in Guided Imagery, which
offered them relief from being with the patient. Therapies
were comforting for both the patient and her family.

113. Modalities to help outpatients with
chemo-related symptoms
 Foot ‘M’ technique:
 Gentle foot touch/massage helped reduce discomfort
from Chemo Induced Neuropathy
 Evidence-based:
Relief of chemotherapy-induced peripheral
neuropathy with manual therapy (massage)
 Energy Healing:
Healing Touch/Reiki helped reduce anxiety and pain
 Evidence-based:
Relief of anxiety helped pain reduction in cancer care
Cunningham JE, Kelechi T, Sterba K, Barthelemy N, Falkowski P, Chin SH. Case report of a patient with chemotherapy-induced peripheral
neuropathy treated with manual therapy (massage). Support Care Cancer. 2011 Sep;19(9):1473-6. doi: 10.1007/s00520-011-1231-8
Jackson, E., Kelly, M., McNeil, P., Meyer, E., Schlegel, L., & Eaton, M. Does Therapeutic Touch help reduce pain and anxiety in patients with cancer? Clinical
Journal of Oncology Nursing. 2008; 12 (1):113-120.
Thrane, S. & Cohen, S. Effect of Reiki Therapy on Pain and anxiety in adults: an in depth literature review of randomized trials with effect size
calculations. Pain Management Nursing. 2014 Dec; 15(4):897-908.

114. Holistic Approaches Can Help!
 Help treat patients with Acute Pain before it
becomes chronic using evidence-based techniques
 Use less Opiates! Help reduce pain effectively
 Allows patients to actively participate in their care
and healing process
Mehl-Madrona L, Mainguy B, Plummer J. Integration of CAM Therapies into Primary-Care Pain Management for
Opiate Reduction in a Rural Setting. Journal of Alternative Complement Medicine, 2016 Aug; 22(8):621-6

115. ALTO Program at St. Joseph, NJ
Alternatives to Opiates Program in the ED
 Uses targeted non-opioid medications, trigger point
injections, nitrous oxide, and ultrasound guided nerve blocks
to tailor its patients’ pain management
 Includes Complementary Therapies, Energy Healing, and
live Harp Music
 Spotlighted in National Media:
http://www.nbcnews.com/nightly-news/video/this-hospital-fights-opioid-
addiction-with-holistic-healing-677449795529

116. Feeling Sooo Good!

117. The Future of Holistic Nursing Care
at WPH
 Expand Holistic programs
 Continuity of Care
 Participate in Nursing Research
 Education
 Patients, Caregivers, and Staff
 Self Care
 Patients, Caregivers, and Staff
 Planting a holistic seed ….

118. Support Systems and Resources for
Caregivers
Michael Sapienza Chief Executive Officer Colon Cancer Alliance
Martha Raymond MA CPN Michael’s Mission, The Raymond Foundation

119. You’re never too young
for colorectal cancer

120. • Bring awareness to the
increasing trend
• Focuses on highlighting the
most up to date research,
commemorating patients,
and sharing their stories.
– Young and Brave Survey
• June 2016
• 992 responses

121. Survey Results

122. What were you told you had before
being diagnosed with CRC?
Results
Anemia
Hemorrhoids
Result of Childbirth
Appendicitis
Gynecological Issues
Other
30.5%
38.75%
6.15%
13.16%
50.68%
3.57%

123. At what stage were you initially diagnosed?
• - Stage 0
• - Stage I
• - Stage II
• - Stage III
• - Stage IV
• - Don’t know
• - Don’t remember
8.8%
20.93%
41.56%
25.18%
0.3%
1.52%1.72%

124. Survey Responses
• 57% of respondents were diagnosed between the ages of 40-49
• 50% felt like their symptoms were ignored because of their age
• 44% felt that their diagnosis was delayed because of their age
• 40% felt that their doctor did not have proper knowledge of young
onset colorectal cancer

125. Survey Responses
• Experiencing the challenges of raising a family and being a parent,
while also undergoing treatment
– I was 36 at diagnosis, stage IIIc, with 4 kids under 6 years old. It
was hard to manage it all with such young kids.
• Financial issues, including insufficient or lack of health insurance
– Losing our house due to cancer bills even with insurance. Still
trying to regain credit so we can buy again.

126. Survey Responses
• Having to quit or take a leave of absence from school or work, causing
education and career gaps on a resume
– Fear about finding employment with the gap in my resume, anxiety
about needing restroom visits…during networking and job
interviews.
• Challenges involving fertility and the ability to carry a child
– The cancer had destroyed both my ovaries by the time it was finally
found…my husband and I can now not have children.

127. Action Items
• Better tools to assist the medical
community
• Recognizing symptoms
• Recommend diagnostic testing
• National education campaign
• Research into biomarkers and other
biological differences or quality of life
studies
• Support services specifically for those
diagnosed under age 50

128. CCA Chris4Life Research Program
Survey
• Medical Advisory Committee
• Additional Researchers
• Patiient & Survivor Community
Findings
Concentrate efforts on:
• Young onset
• Precision medicine
• Development of better
mechanisms for pre-disease
and early diagnosis
Program Goal
Develop and implement a peer-
reviewed program that offers grants in
basic, translational and clinical
research to researchers at varying
career levels.
To this end, the Colon Cancer Alliance
Strives to advance its goal toward a
cure for colon cancer.

129. CCA Chris4Life Research Program
• 2017/2018 Grants Timeline
– Young Onset Grants
• $100,000
• RFP Distribution (June)
• Grant Deadline (8/31)
• Award Distribution (January 2018)
– Precision Medicine & Pre-Disease/Early Diagnosis
• RFP Distribution (October)
• Grant Deadline (January 2, 2018)
• Award Distribution (June 2018)

130. Thank You!
ccalliance.org msapienza@ccalliance.org
Colon Cancer Alliance Helpline
(877) 422-2030

131. Martha Raymond, MA CPN
The Raymond Foundation, Inc.
Early-Age Onset Colorectal Cancer Summit
New York University Langone Medical Center - Perlmutter Cancer Center
March 12, 2017
Copyright © 2017 The Raymond Foundation
All rights reserved. No part of this presentation may be reproduced without written permission.
The Caregiver Voice:
Insights Into Caring For The Young
Adult Colorectal Cancer Patient

132. Results of 20 month/nationwide ongoing study
Start date Summer 2015 - Present
Caregiver Demographics: 37% Male 63% Female
576 participants to date
Focus groups were conducted in person &
online with virtual meeting format
Focus Group & Survey Findings

133. National Reach = 32 States & Counting

134. This Is Personal
Becoming a caregiver at a young
age as both my parents were
diagnosed with colon cancer

135. 1%
4%
20%
22%34%
19%
Under 25
25 to 29
30 to 34
35 to 39
40 to 44
45 to 49
Caregiver Age
at Time of Patient’s Diagnosis

136. 2%
17%
45%
36% Stage 1
Stage 2
Stage 3
Stage 4
Patient:
Initial Stage at Diagnosis

137.  Living a life of purpose – living in the present
 Spirituality – reflection – devotion
 Giving back – helping others - advocacy
 Spending time with family and loved ones
 Letting go of negative people & situations
 Simple pleasures – nature – friends – pets
 Being productive – service to others
 Ability to be independent – healthy days
 Taking time to ‘just be in the moment’ – gratitude
What does a meaningful quality of
life look like to you now?
Patient & Caregiver Perspective – Joint Interview Question

138. What Is “Normal” After Cancer Treatment?
Those who have gone through cancer treatment describe
the first few months as a time of change. It’s not so much
“getting back to normal” as it is finding out what’s normal
for you now. People often say that life has new meaning or
that they look at things differently now. You can also expect
things to keep changing as you begin your recovery.
Your new “normal” may include making changes in the way
you eat, the things you do, and your sources of support.
From Facing Forward: Life After Cancer Treatment – National Institute of Health; National
Cancer Institute, May 2014
What is the ‘New Normal’ ?

139. A paradigm shift
A work in progress
Part of a club you never wanted to join
There is no new normal
An opportunity
Nothing about the new is normal
A New Normal:
Patient & Caregiver Insight

140. 22%
19%
16%
14%
14%
11%
4% Fear
Regret
Perspective
Anger
Anxiety
Loss of Control
Gratitude
Initial Thoughts: ‘New Normal’

141. Caregiver Insight :
“What one word describes how you are feeling right now?”
Stressed
Anxious
Depressed
Exhausted
Frustrated
Alone
Overwhelmed
Burned-out
Angry
Guilty
Needed

142. Caregiver Insight:
Healthcare Information & Support
89% Are equal partners in all healthcare decisions – “We discuss all
options together, in private, before any decisions are made”
76% Did not receive adequate information/education on
diagnosis/treatment options “Disappointing” & “Discouraging”
72% Keep track of all medical records, appointments, track side effects and
treatment AEs
21% Are members of online support groups “Anonymous way to vent – but
not healthy sometimes – inaccurate information & unsolicited advice”
16% Attend caregiver support groups (at least once) “No time after work,
home, family – would attend more frequently if time allowed”

143. Caregiver Insight:
Emotional Concerns
97% Stress & Anxiety - “Desperate for whatever might help”
89% Depression - “We hurt because we can’t take their pain away”
73% Lost - “Totally helpless – no control over the situation or outcome –
Our young children need their Father”
55% Self Health Decline - “Can’t sleep, can’t focus – feel sad all the time ”
51% Withdrawn & Alone - “Difficult for friends, children and our extended
family to understand ”

144. Caregiver Insight:
Financial & Work Related Concerns
95% Financial instability – “Frightened for the future & daily uncertainty”
78% Employed Full Time – “Pulled in every direction – need balance”
71% 20+ hours per week spent on caregiving duties – “After work, caring
for my wife and children, there is no time left for anything else”
52% Career/work performance has declined – “I know I am not the
employee I used to be – and so does everyone else”

145. The needs are clear:
 What can we do to better educate and raise awareness about young
adult colorectal cancer?
 What can we do to support and empower caregivers of young adult
colorectal patients from diagnosis through survivorship?
 What can we do to provide ongoing services to caregivers, family,
children and loved ones of those affected by young adult colorectal
cancer?
Caregiver Resources: NYU Langone Medical Center; CancerCare; Colon
Cancer Alliance; The Raymond Foundation; Cancer Support Community;
and Fight Colorectal Cancer
Call To Action

146. Survey, Focus Group and Town Hall Participants
Symposium Co-Directors: Dr. Thomas Weber & Dr. Susan Peterson
NYU Langone Medical Center, Perlmutter Cancer Center
Colon Cancer Challenge Foundation Board of Directors, Cindy Borassi & Staff
Title Sponsor:
 Corporate & Individual Sponsors
Contact Information: Martha Raymond MA, CPN MRaymond@TheRaymondFoundation.org
© Copyright 2017 by The Raymond Foundation
All rights reserved. No part of this presentation may be reproduced without written permission.
Thank you!

147. Interested in Attending the
4th Annual EAO CRC Summit in 2018?
Join our mailing list by visiting
http://coloncancerchallenge.org