YOUNG WITH STAGE IV: YOUR PATIENTS UNIQUE NEEDS

Transcription

1 YOUNG WITH STAGE IV: YOUR PATIENTS UNIQUE NEEDS Pamela J. Ginsberg, Ph.D. Private Practice, Doylestown, PA Board of Directors: Cancer Support Community of Greater Philadelphia Staff Psychologist, Doylestown Hospital

2 Financial Disclosure Statement This presenter has no financial interests to disclose

3 Overview What are the issues that are unique to younger women with metastatic breast cancer? How can you, as healthcare workers, support and advocate for your young metastatic breast cancer patients? How can you manage the emotional impact of working with this unique population as healthcare workers? What national resources are available that focus on young women with metastatic breast cancer?

4 Issues unique to young women with MBC Confronting Mortality at a young age: Off Life-Cycle Event Lack of peers results in isolation Sense of foreshortened life, feeling cheated, sense of unfairness Less life experience to draw on for coping skills Who will care for my children Fears of how death will impact those who love them

5 Issues Unique to Young Women with MBC Challenges of getting support from family and friends Great support in the short term, but not the long term Lack of understanding of MBC among friends/family Long term adjustments need to be made Not relating to the general breast cancer community Peers are busy with their own young lives

6 Issues unique to young women with MBC Financial impact of metastatic breast cancer Working vs. disability? Financial consequences now and for the future If there is a spouse, how does he/she work and provide caregiving? If there is not a spouse, financial impact of disrupted work or living only on disability is very daunting

7 Issues unique to young women with MBC Managing fatigue as a young person Not just tired: does not improve with rest Can look like depression, and it can feed depression How much does fatigue interfere with life? Fatigue that s chronic at a young age is not well tolerated by society at large Interferes with childcare, socializing, work, intimacy

8 Issues unique to young women with MBC Caring for young children Fear of abandoning children What to tell them, how much to tell Worries about genetic vulnerability for children Logistical concerns of providing care

9 Issues unique to young women with MBC Dating, sex, intimacy Sexual dysfunction due to treatment side effects Sexual dysfunction due to emotional effects Early and abrupt menopause: more severe symptoms when abrupt Grief regarding menopause, fertility, loss of sense of femininity Communication about sex, relationship, fears Dating: Body image concerns, fertility concerns Dating: When to tell, how much to tell

10 Issues unique to young women with MBC Other general psychological factors Anxiety, depression, fears, anger, cognitive fatigue and dysfunction Spiritual crisis: Beliefs about illness/death and meaning of the illness How much are psychological factors interfering in the patient s life and quality of life? Treatment fatigue: Psychological exhaustion from pursuit of treatment/scans/uncertainty

11 Providing Our Best Support

12 Providing our best support Treating the whole patient: One of the biggest complaints is not having enough time to express self and being treated impersonally Looking for quality of life: Spiritual, physical, social, emotional How to live with illness instead of preparing to die from it: Check our own attitudes and mindsets about mortality Thinking of balance between quantity and quality of life: have the conversation

13 Providing our best support Metastatic breast cancer specific programming Living Beyond Breast Cancer: Young Survival Coalition: Metastatic Breast Cancer Network: Cancer Support Community: Metavivor:

14 Providing our best support Referrals to psychotherapy and counseling services: don t wait for the patient to ask you Be familiar with qualified local referral sources Have resource materials for qualified therapists on hand and easily accessed Helpline to connect to qualified psycho-oncology professionals (American Psycho-Social Oncology Society) (affiliated with the Cancer Support Community)

15 Providing our best support Complimentary therapies for symptom management and stress reduction Cancer specific programming is preferred Yoga Acupuncture Meditation Massage therapy Nutrition counseling Exercise training

16 Self Care: Managing the impact of working with this population Tiredness Lack of patience Compassion Fatigue Having less empathy Burnout

17 Self care: Overidentifying You may be working with patients who are of similar age, background, or life situation as you You may have children of similar ages You may have children who go to school together Overidentifying with a patient can cloud your judgment Reach out to peers when a particular patient is getting to you

18 Self Care Strategies Peer Support Stop and breathe Learn to meditate

19 Self Care Strategies Sending love or compassion Unplug Validate that what you are doing is hard

20 RESOURCES SPECIFIC TO YOUNG WOMEN WITH METASTATIC BREAST CANCER Online support groups Educational materials Referral to psychologists and other psychosocial support services Helplines

21

22

23

24

25

26 National Resources for all with metastatic breast cancer Cancer Support Community (with its local affiliates) ( Metavivor ( Susan G. Komen (ww5.komen.org) CancerCare ( AdvancedBC.org (