Your Journey on the Survivorship Highway

Transcription

1 Your Journey on the Survivorship Highway Debra Loacker, RN BSN Moving Beyond Cancer to Wellness Survivorship Clinic, Seattle Cancer Care Alliance Survivorship Program, Fred Hutchinson Cancer Research Center

2 Objectives Describe what you might expect along the road after cancer treatment is completed. Have increased awareness of common hazards the long term and late effects of cancer and cancer therapies. How you can be in the driver s seat on your survivorship journey, survivorship care planning.

3 Grand Teton National Park

4 What to expect

5 Who are Survivors? anyone who has been diagnosed with cancer from the time of diagnosis through the balance of his or her life What is Survivorship? Addressing the unique needs of survivors after active treatment ends

6 Long Term Effects Effects or complications during treatment that can continue into the future Example fatigue, sexual problems, worry Late Effects Effects from treatment that may not show up for months or years after treatment ends Example secondary cancers, heart disease

7 Percentage of Respondents who report physical concerns

8 Lack of care: Percentage of respondents who did not receive help for their concerns

9 Percentage of respondents who experienced emotional concerns

10 Lack of care: percentage of respondents who did not receive help for their emotional concerns

11 Case Study: Colorectal Cancer 71 year old women with history of Stage III rectal carcinoma diagnosed at age 69. Previous history of ovarian cancer diagnosed at age 52. Treatment included: Neoadjuvent chemoradiation with capecitabine. Laparoscopic abdominopelvic resection with end-descending colostomy. Adjuvent FOLFOX chemotherapy.

12 What might be expected?

13 After Treatment: The Difference Between Late and Long Term Effects Long Term Effects Effects or complications during treatment that can continue into the future Example fatigue, sexual problems, worry Late Effects Effects from treatment that may not show up for months or years after treatment ends Example secondary cancers, heart disease

14 Potential Long Term and Late Effects Chemotherapy & Biotherapy Chronic Fatigue Cardiovascular disease Lung toxicity Infertility Metabolic syndrome insulin resistance, hyperlipidemia, hypertension. Cognitive dysfunction Chemobrain. GI toxicity Dental impairments Peripheral neuropathy Kidney dysfunction Liver dysfunction Second malignancy leukemia, skin cancers, endometrial cancer Hearing loss/tinnitus Late effects of corticosteroids bone loss, avascular necrosis, cataracts, myopathy. Unknown effects of newer agents?

15 And More Potential Long Term and Late Effects Surgery Organ dysfunction or loss Scarring or fibrosis, adhesions Lymphedema Change in Body Image Infection Radiation Organ dysfunction within radiation field: Thyroid, kidney, dental abnormalities, lung, bone, intestines, ovaries, testes. Skin fibrosis Second malignancy Cognitive changes with brain radiation.

16 But, How Do I Know What My Own Risk Is?

17 What Can Effect Your Risk? Age Gender Genetics Social RADIATION CHEMOTHERAPY Other Health SURGERY Lifestyle

18 Back to our Case Study: Colorectal Cancer 40 pack year smoking history, quit Family history of colon cancer, polyps. Widow with four adult children. Mild coronary calcifications on Staging CT, history of hypertension. Hypothyroidism. Osteoarthritis, bilateral knee replacements, hip replacements. Not much exercise/deconditioning Overdue for routine wellness evaluation with primary care.

19 Rough Roadway Long Term and Late Effects Permanent colostomy/peristomal skin issues. Neuropathy Fatigue/Deconditioning Financial worries Genetic evaluation End of life planning Fear of recurrence Wellness screenings Potential for: Scar tissue/adhesions Change in bowel function Nutrition issues Neuropathy Sexual function Second cancers High risk lung screening?

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

21 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 % of cancer survivors In survivors fatigue includes lack of stamina or energy, muscle loss and related weakness

22 Exercise Can Help Many Late Effects 44 randomized controlled trials Weight resistance training IMPROVES: Muscle mass, strength, endurance, flexibility Cardiopulmonary health, aerobic fitness Bone density, reducing fracture risk Sleep Positive mood Self-esteem Overall quality of life Brown et al. Cancer Epi Biomarkers Prev, 2011 (review) Fong et al. BMJ, 2012 (review)

23 Case Study: Breast Cancer 53 year old woman diagnosed with Stage III, ER /PR positive, Her2neu positive, left breast cancer. Treatment included neo-adjuvant chemotherapy with Doxorubicin and Cyclophosphamide mastectomy and axillary lymph node dissection adjuvent Taxol and Herceptin radiation to chest wall and draining lymph nodes Planned: 5-10 years of aromatase inhibitors

24 Dangerous Curves: Long Term and Late Effects Heart/cardiac risk Treatment related Personal or Family history? Screening Lung/pulmonary risk Lymphedema Body Image changes Intimacy and sexuality Bone health Fatigue Genetic risks Second cancers Fear of recurrence Muscle and joint aches and pain Menopausal symptoms Sleep disturbances Anxiety and depression Social isolation Changes in memory and brain processing speed

25 Let s look at two potential effects Distress Bone Health

26 Uncertainty Grief and Loss * Not knowing what the future will bring * Thoughts and feelings about recurrence * What will never be (fertility/pregnancy) * What is changed forever (hair, work, energy) * Includes body image, self-esteem Fear of Recurrence * Intrusive thoughts about cancer recurring * Worry encroaches on activities, sleep, enjoyment * Afraid to rebuild life - disappointment

27 In the Words of a Non-Hodgkin's Survivor After I was in remission a few years, I was told to call my doctor if I had a problem. But after cancer, you starting imagining the worst with every little twinge: is this something I should watch for or be concerned about?

28 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.

29 Perceived changes in self: Feeling stronger More self assured More experienced More able to face future challenges

30 Bone Health Assess and Address Osteopenia and osteoporosis Risks: radiation, steroids, aromatase inhibitors, sedentary lifestyle Testing: DEXA scans Treatment: Prevention diet, calcium, vitamin D, resistance exercise Physical Therapy Prescription medications

31 Prevention Works! Control the things you can control Keep blood pressure, cholesterol, blood sugar, weight and stress under control Good nutrition is vital Increased activity Addressing emotional needs Manage stress Alcohol and substance use Quit smoking Adequate sleep is critical for physical and emotional wellbeing, immune function, and coping

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33 Survivors Quality of Life Issues Can Be Multiple and Complex Medical Problems: Cardiovascular disease and cardiac failure Fatigue Osteoporosis / osteopenia Hypothyroidism Premature menopause Pulmonary function Lymphedema Urinary incontinence Infertility Neurologic problems (balance, neuropathy, memory) GI (bowels, bloating, acid reflux) Dental impairments Recurrence/Increased risk of 2 nd cancers Accelerated aging Emotional and Functional Concerns: Restricted social and physical activities Memory loss Fear of recurrence/living with uncertainty Muscle and joint stiffness, weakness, cramps or pain Sexual dysfunction Intimacy/relationship issues Distress and worry Job loss/job lock Role changes at home School concerns Insurance problems Financial concern or crisis Sleep disorders

34 IOM: From Cancer Patient to Cancer Survivor: Lost In Transition (2006) IOM Report Identified Survivorship Needs: 1. Every survivor should receive a treatment summary and care plan at the end of treatment. 2. Prevention, surveillance and detection of new and recurrent cancers. 3. Prevention, surveillance and detection for consequences of cancer and its treatment. 4. Coordination between specialists and primary care providers to ensure that survivor health needs are met.

35 Inclusion of Survivorship in COC Accreditation Standards

36 So, What Does a Treatment Summary and Care Plan Look Like??

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41 Survivorship Treatment Summary and Care Plan Templates ASCO ( Provider oriented Breast, colorectal, prostate, lymphoma and lung Journey Forward ( Providers & patients Free, downloadable Care Plan Builder Mobile apps for cancer care LIVESTRONG Care Plan ( Providers & patients User inputs basic info, generates summary and care plan Evidence & consensus-based

42 Cancer Advocacy Groups Cancer Care American Cancer Society ACS Cancer Action Network-advocacy arm Cancervive Livestrong National Coalition of Cancer Survivorshipwww.canceradvocacy.org Cancer Legal Resource Center 42

43 SCCA Survivorship Clinic Fred Hutch Survivorship Program K. Scott Baker, MD, Director Karen Syrjala, PhD, Co-Director Emily Rajotte, Associate Director Jennie Crews, MD Leslie Heron, ARNP Debra Loacker, RN Gabriella Emond, Admin Assistant Joli Bartell, Project Coordinator Sheri Ballard, Project Manager Vanessa Barone, Project Manager

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45 Thank You! You don t have to go round in circles Learn to manage your Survivorship and be in the drivers seat! Questions?