The Challenges of Surviving Cancer

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1 The Challenges of Surviving Cancer March 14, 2018 M. Alma Rodriguez, M.D. The University of Texas MD Anderson Cancer Center Vice President Medical Affairs

2 Conflict of Interest Disclosures No conflicts to disclose in relationship to this presentation.

3 Presentation Objectives Discuss cancer survivorship and what the landscape looks like in the US. Review data on current and projected survivors nationally. Describe the domains of Cancer Survivorship Care Review the risks and late effects of Cancer Survivorship Review the social and economic challenges Cancer Survivors face

4 Learning Objectives Describe current and projected US cancer survivorship statistics Discuss Survivorship Care Delivery models Articulate the domains of survivorship care and the importance of survivorship care as a distinct phase of the cancer continuum Utilize the take-aways from lessons learned at MD Anderson to envision/improve the quality of life and care for Arkansas cancer survivors

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9 Who is a Cancer Survivor? An individual is considered a cancer survivor from the time of diagnosis, through the balance of his or her life. Family members, friends, and caregivers are also impacted by the survivorship experience, and therefore included in this definition. NCI Office of Cancer Survivorship, 1996

10 18 Million Cancer Survivors Projected in 2022 Long-Term Intermediate Acute de Moor J S et al. Cancer Epidemiol Biomarkers Prev2013;22:

11 Phases of the Journey ACUTE INTERMEDIATE LONG TERM Remission Recovery Wellness Diagnosis Active Treatment Immediate Side Effects Surveillance For Recurrence Rehabilitation Late Effects of Treatment: Physical Psychosocial Mullan F., N Engl J Med (4):270

12 Survivorship Healthcare Challenge: Lost in Transition Persistent symptoms after cancer treatment Health effects of new onset years after treatment Difficulty finding physicians after treatment Lack of communication among physicians Emotional symptoms and disrupted relationships 2005, National Academies Press; IOM, Wash. D.C.

13 Consequences of cancer survival Physical anatomic or functional changes Organ toxicity/morbidities that lead to premature onset of chronic illnesses Psychological disturbances Socioeconomic burdens Increased risk of second malignancies In addition, other health co-morbidities can worsen, particularly in older cancer patients

14 Distribution of US Cancer Survivors by Age Groups 1% Children & Adolescents As of January 1, 2016 Young Adults 4% Working 21% Older Children & Adolescents (0-19) Young Adults (20-39) Working Adults (40-59) 74%

15 Patient related factors: Cancer survivors are a growing and aging population* One out of every six persons over 65 is a cancer survivor, and 1.4 million were diagnosed more than 20 years ago. 70 % of adults diagnosed with cancer today can expect to be alive in five years (CDC). Widespread screening, improved treatment and population aging (especially baby-boomers) will lead to continued growth of this cohort. Comorbid conditions can be exacerbated by cancer therapies *IOM/NRC From Cancer Patient to Cancer Survivor 2006

16 Source: Source: DeSantis C, Chunchieh L, Mariotto AB, et al. Cancer Treatment and Survivorship Statistics Cancer.

17 Survivor Populations are Unique by Treatment, Disease, and Health History Surgical interventions, radiation ports and doses, as well as chemotherapeutic interventions are unique for each of the malignant diseases, and Differ as well depending on stages or biological or hormonal characteristics within each disease, Hence, the anticipated or potential side effects (short and long term) of treatments will be unique to the patient s initial disease presentation, age and other potential comorbid conditions.

18 Domains of Survivorship Care Cancer Surveillance and Screening Detection and treatment of late malignancy recurrence or new second malignancies Risk Reduction and Cancer Prevention Lifestyle changes to prevent cancer and risk assessment Late Effects / Side Effects Management Health maintenance and observation of vital organ function Psychosocial Functioning Psychosocial support services to maintain healthy relationships and restored life

19 Cumulative incidence of chronic physical health conditions among 10,397 young adult survivors of childhood cancer Childhood Cancer Survivor Study Cumulative Incidence % with at least one chronic condition 42.4% with a severe or life-threatening condition or death Years since Cancer Oeffinger KC, et al. N Engl J Med, 2006

20 Cause-Specific Mortality in Early Stage Breast Cancer Survivors Breast cancer Cardiovascular disease Second malignancy Hooning MJ, et al. Int J Radiation Oncology Biol Phys, 2006

21 Cumulative incidence by causes of death for patients with stage I testicular seminoma SEER Registry; N=9193 men, diagnosed Second cancer Cardiovascular disease Testicular cancer Beard CJ, et al. Cancer, 2013

22 Risk factors for second malignancies Treatment related Radiation, chemotherapy Hereditary Genetic syndromes Environmental Exposure to harmful conditions Type of primary cancer Some cancers have risk of other second primary cancers for unknown reasons Health related Infectious agents Autoimmune disorders Lifestyle factors

23 Health and Lifestyle Smoking: lung, oral cavity Obesity: colon, breast, ovarian

24 Tiers of Medical Risk in Long-term Survivors Internal Medicine Tier 1: Prevention Psychosocial Support/ Symptom Management Very low risk of complications or relapse = Surgery Oncology Tier 2: Patients with complications/risk of treatment or second malignancies = Chemo, Radiation Tier 3: High risk of relapse; active indolent/controlled disease; intensive chemotherapy/radiation/sct with high risk of sequelae= SCT, Chronic, & High-Risk Cancers

25 Algorithm: Domains of Care

26 Algorithm: Domains of Care

27 Survivorship Care Delivery Models in the US Model Oncology-based Disease-based programs Treatment-based programs Comprehensive standalone programs Shared Care Shared care between oncology practice & primary care provider Community-based Oncologist, PCP, allied health professional Examples Breast, colorectal, genitourinary cancers Hematopoietic stem cell transplant All disease type cancer survivors Survivor is seen at cancer center and cofollowed by the community primary care provider Includes referrals to community providers such as physical therapist, nutrition counselors, etc.

28 Psychological Health Anxiety or fear over relapse Depression Grief over loss of health, lifestyle or work Body image Disrupted relationships

29 Returning to Life Activities Fatigue is a common complaint can be improved by exercise Impaired immunity is a consideration for travelers Gradual integration to normal prior level of activity recommended Activity is important for health and weight management

30 Sexual Health Decreased Libido: consider hormone levels, thyroid function Menopause symptoms that are uncomfortable Psychological factors: Anxiety/fear Depression Body image

31 Fertility Strategies to preserve fertility prior to treatment Post treatment evaluation for fertility: Sperm counts at least 6 months after treatment Return of menses may not always relate to fertility

32 Return to Work Factors associated with successful return to work are 1. younger age; 2. higher education level ; 3. employment prior to illness (Mosher et al, Psychooncology 2009) 84% of those who did not experience relapse of their primary malignancy were employed at 5 years post SCT. (Syrjala et al, JAMA 2004)

33 Annual Lost Productivity, Adults age 18-64, MEPS, Presented By Cathy Bradley at 2018 Cancer Survivorship Symposium: Advancing Care and Research

34 Interference with job tasks Presented By Cathy Bradley at 2018 Cancer Survivorship Symposium: Advancing Care and Research

35 Key findings: Employment & Hours Worked Presented By Cathy Bradley at 2018 Cancer Survivorship Symposium: Advancing Care and Research

36 Key Findings Presented By Cathy Bradley at 2018 Cancer Survivorship Symposium: Advancing Care and Research

37 Key findings: Predictors of poor work outcomes Presented By Cathy Bradley at 2018 Cancer Survivorship Symposium: Advancing Care and Research

38 Economics and Insurance A study in 10 year HSCT survivors indicated 24% had experienced denial of health insurance, and 27 % were denied life insurance, compared to age matched cohorts which reported no denials Those with health insurance had higher premiums, or lesser coverage which made health care for late effects difficult or unaffordable Syrjala KL, et al; JCO A report by the CDC also noted that cancer survivors had much higher out of pocket expenses, compared to age and gender matched cohorts CDC, Morbidity and Mortality Report, 6/2014

39 Slide 6 Presented By K Yabroff at 2018 Cancer Survivorship Symposium: Advancing Care and Research

40 Presented By K Yabroff at 2018 Cancer Survivorship Symposium: Advancing Care and Research

41 Presented By K Yabroff at 2018 Cancer Survivorship Symposium: Advancing Care and Research

42 Presented By K Yabroff at 2018 Cancer Survivorship Symposium: Advancing Care and Research

43 Presented By K Yabroff at 2018 Cancer Survivorship Symposium: Advancing Care and Research

44 Presented By K Yabroff at 2018 Cancer Survivorship Symposium: Advancing Care and Research

45 Presented By K Yabroff at 2018 Cancer Survivorship Symposium: Advancing Care and Research

46 Presented By K Yabroff at 2018 Cancer Survivorship Symposium: Advancing Care and Research

47 Presented By K Yabroff at 2018 Cancer Survivorship Symposium: Advancing Care and Research

48 Presented By K Yabroff at 2018 Cancer Survivorship Symposium: Advancing Care and Research

49 Summary Presented By K Yabroff at 2018 Cancer Survivorship Symposium: Advancing Care and Research

50 Strategies for addressing financial hardship Presented By K Yabroff at 2018 Cancer Survivorship Symposium: Advancing Care and Research

51 The Challenge of Surviving Cancer The challenge in overcoming cancer is not only to find therapies that will prevent or arrest the disease quickly, but also to map the middle ground of survivorship and minimize its medical and social hazards Fitzhugh Mullan. Seasons of Survival: Reflections by a Physician with Cancer. NEJM 1985

52 Suggested Reading Alfano, C. M., Smith, T., de Moor, J. S., Glasgow, R. E., Khoury, M. J., Hawkins, N. A., Rowland, J. H. (2014). An Action Plan for Translating Cancer Survivorship Research Into Care. JNCI Journal of the National Cancer Institute, 106(11), dju Blanch-Hartigan, D., Forsythe, L. P., Alfano, C. M., Smith, T., Nekhlyudov, L., Ganz, P. A., & Rowland, J. H. (2014). Provision and Discussion of Survivorship Care Plans Among Cancer Survivors: Results of a Nationally Representative Survey of Oncologists and Primary Care Physicians. Journal of Clinical Oncology, 32(15), Cancer Treatment & Survivorship Fact & Figures https:// Caruso, R., Pasquale, C. D., Lichosik, D., Dellafirore, F., & Pittella, F. (2013). Report on the 2013 European Multidisciplinary Cancer Congress ECC 17, Amsterdam, 27 September 1 October 2013: nursing highlights. Ecancermedicalscience, 7, Catt, S., Starkings, R., Shilling, V., & Fallowfield, L. (2017). Patient-reported outcome measures of the impact of cancer on patients everyday lives: a systematic review. Journal of Cancer Survivorship, 11(2), de Moor JS, et al. Cancer survivors in the United States: prevalence across the survivorship trajectory and implications for care. Cancer Epidemiol. Biomarkers Prev. 2013;22: doi: / EPI de Moor, J. S., Mariotto, A. B., Parry, C., Alfano, C. M., Padgett, L., Kent, E. E., Rowland, J. H. (2013). Cancer Survivors in the United States: Prevalence across the Survivorship Trajectory and Implications for Care. Cancer Epidemiology, Biomarkers & Prevention : A Publication of the American Association for Cancer Research, Cosponsored by the American Society of Preventive Oncology, 22(4), Halpern, M. T., Viswanathan, M., Evans, T. S., Birken, S. A., Basch, E., & Mayer, D. K. (2015). Models of Cancer Survivorship Care: Overview and Summary of Current Events. Journal of Oncology Practice, e19-e27. Kahana, E., Kahana, B., Langendoerfer, K. B., Kahana, B., & Smith-Tran, A. (2016). Elderly Cancer Survivors Reflect on Coping Strategies During the Cancer Journey. Journal of Gerontology & Geriatric Research, 5(5), Liu, Q., Leisenring, W. M., Ness, K. K., Robison, L. L., Armstrong, G. T., Yasui, Y., & Bhatia, S. (2016). Racial/Ethnic Differences in Adverse Outcomes Among Childhood Cancer Survivors: The Childhood Cancer Survivor Study. Journal of Clinical Oncology, 34(14),

53 Suggested Reading Nekhlyudov, L., O Malley, D. M., & Hudson, S. V. (2017). Integrating Primary Care Providers in the Care of Cancer Survivors: Gaps in Evidence and Future Opportunities. The Lancet. Oncology, 18(1), e30 e38. Nekhlyudov, L., Ganz, P. A., Arora, N. K., & Rowland, J. H. (2017). Going Beyond Being Lost in Transition: A Decade of Progress in Cancer Survivorship. Journal of Clinical Oncology, 35(18), O Malley, D., Hudson, S. V., Nekhlyudov, L., Howard, J., Rubinstein, E., Lee, H. S., Crabtree, B. F. (2017). Learning the Landscape: Implementation Challenges of Primary Care Innovators around Cancer Survivorship Care. Journal of Cancer Survivorship : Research and Practice, 11(1), Rowland, J. H., Kent, E. E., Forsythe, L. P., Loge, J. H., Hjorth, L., Glaser, A., Fosså, S. D. (2013). Cancer Survivorship Research in Europe and the United States: Where have we been, where are we going, and what can we learn from each other? Cancer, 119(0 11), Stone, D. S., Ganz, P. A., Pavlish, C., & Robbins, W. A. (2017). Young adult cancer survivors and work: a systematic review. Journal of Cancer Survivorship, 11(6),

54 References Presented By Cathy Bradley at 2018 Cancer Survivorship Symposium: Advancing Care and Research

55 Thank you! Questions!

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