Let's Talk About It: Breast Cancer - Our Quality of Life as Long-term Breast Cancer Survivors
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Many of us who are 5+ years in our survivorship are still having to navigate through the damage from our toxic treatments and multiple surgeries that impede our quality life. Our guest speaker, Emily M. Beard from Northside Hospital Cancer Institute in Atlanta, GA will discuss things we can actively do as long-term survivors since many of us are at different life stages from our original diagnosis and active treatment days.
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Let's Talk About It: Breast Cancer - Our Quality of Life as Long-term Breast Cancer Survivors
- 1. OurQuality of Life as Long-term Breast CancerSurvivors SHARE Cancer Support September 19, 2023
- 2. About me Emily Beard, RN, OCN, CBCN Nurse navigator since 2007 Patient advocate, caregiver coach Daughter, sister, “co-survivor”
- 3. Longterm survivorship Emotions and feelings Gratitude, anger, grief, loss, fear Changes day to day and over time What emotions are part of your journey? Paradox “I am grateful to be a survivor, to be alive, AND I am also disappointed that things have not turned out like I thought they would.”
- 4. Mindset:Just say NO to Toxic Positivity! Both/And thinking or “sweet and sour” approach “I am BOTH grateful to be aliveAND angry that when I look at my body in the mirror I see scars where my breasts used to be” “I am BOTH happy to have a supportive partner AND also sad that my sex life is not as satisfying as it once was”
- 5. MENTAL HEALTH CONCERNS Anxiety Fear of recurrence Sleep Depression Relationship dynamics Family, dating, marriage/partnerships, providers, fellow survivors Memory problems
- 6. PHYSICAL HEALTH CONCERNS aka “Late Effects” Lymphedema Heart health Treatment related (cardiotoxicity risk) Bone health Pain Fatigue Weight gain, metabolic changes Brain Fog/Cognitive change/memory problems Menopausal symptoms Sexual function/intimacy Loss of fertility, inability to build family Others?
- 7. HOWTO MANAGE MENTALAND PHYSICAL CONCERNS? Symptom management = quality of life! This is your oncology team’s job Traditional medical approach Referral to specialist Survivorship clinic Rehabilitation/physical therapy Prescription medicine Mental health/cognitive behavioral therapy Complementary approach Restoring body to natural state of wellness Mind/body emphasis: meditation, yoga, mindfulness Exercise and nutrition Aromatherapy, acupuncture, Reiki, energy work
- 8. FEAROF RECURRENCE “I can’t stop worrying, all I think about is the cancer coming back” Scanxiety = powerful effect on the quality of your life How do you feel about your “Cancer-versary” Recognize emotions Talk about feelings and concerns, validate Notice triggers – follow up appointments, waiting for results Journaling, support groups, Role of therapist vs. discuss with loved ones When is a professional needed?
- 9. MANAGING MENTAL HEALTH NEEDS Get professional help when needed Oncology social worker can assess Who on your team can you talk to? Uncertainty is “new normal” How can you manage this? What does support/self care look like? online support groups, forums, journaling prompts, walking/hiking clubs Self care routines – walks, baths, class, funny movie, reading Self care splurges – massage, fancy meal, weekend trip Spend time with family and friends vs. plan time away
- 10. MANAGING SYMPTOMS of ESTROGEN DEPRIVATION Bone loss: Eat calcium-rich foods, such as greens, shellfish, and dairy Weight-bearing exercise strengthens bones - walking, hiking, dancing, gardening Consult with provider about calcium and vitamin D supplementation Baseline bone density/DEXA Scan if on estrogen blocking therapy Hot flashes: Dress in layers Recognize and avoid triggers hot drinks, spicy food, smoking, caffeine, stress, fatigue and alcohol Relax Mindfulness, yoga, sleep hygiene Medical management: prescription antidepressants Night sweats: Keep home/bedroom cool, use fan, make bed with layers that can be removed Avoid heavy comforters or flannel sheets Wear lightweight pajamas, or nothing
- 11. MANAGING SEXUAL SYMPTOMS Vaginal dryness and pelvic floor tightness: Try moisturizers such as Replens or Me Again, also coconut oil, vitamin E capsules For vaginal pain (penetrative sex, inserting tampon, or tension) use water based lubricant like Astroglide, K-Y Jelly, Good Clean Love Referral to pelvic floor physical therapist Low libido, loss of sexual desire Hormonal changes, lack of estrogen and testosterone can impact sex drive Body image impacts desire Take time, redefine sex goals, focus on touch Talk with your provider/oncology social worker Referrals to counseling (couples/sex therapist) for relationship concerns, and/or pelvic floor therapist Fertility loss, family building options
- 12. SELFCARE Focus on what you can control Schedule follow up appointments and screenings – Mammogram/MRI, skin screening, colonoscopy, pap smear Genetic testing and counseling up to date Get a screening buddy – accountability, celebrate when you both complete – lunch, movie Eating well – oncology dietician, cooking classes Secondary prevention: Smoking cessation, limit alcohol Emotional/Mental Health Manage stress, coping mechanisms Physical therapy - preventive/functional, not just when something is painful Plan ahead – trips, holidays, to do list
- 13. BEST PRACTICES Let’s talk about it What resonates and works for you? What questions do you have? What did we miss?
- 14. THANKYOU Please feel free to contact me with follow up questions Emily Beard, RN, OCN, CBCN Email: Emily.Beard@northside.com Phone: 404-213-5951 (text is best)