The Magic of Palliative Care: Our Stories
We continue our focus on supportive/palliative care in part 2 of our series. This week, we hear directly from those living with MBC about their own experiences with palliative care, including its impacts on their physical, mental, and even sexual health. Special co-host Dr. Paula Jayne joins hosts Natalia Green, Lisa Laudico, and Anne Woodward as they speak with Leda Dederich, Shonte Drakeford, Dr. Deanna Duncan, and Stephanie Walker. We explore how supportive care services can enhance not only our quality of life but even improve treatment outcomes by helping us stay on treatments longer. In addition we discuss geographic and racial disparities in access to these services throughout the U.S and how to advocate for supportive care for yourself.
MENTIONED IN THIS EPISODE and ADDITIONAL RESOURCES
Leda Dederich - How metastatic breast cancer prepared me for the coronavirus pandemic in MarketWatch
What is palliative / supportive care?
How can I find a palliative / supportive care provider?
Consider participating in the Nurse Amie clinical trial from Penn State University that provides virtual supportive care to people living with MBC
Online resources for palliative / supportive care issues
National Cancer Institute: PDQ summaries on common palliative and supportive care issues
National Comprehensive Cancer Network: Survivorship Care and Cancer Distress
What does the research & guidance say?
2017 American Society of Clinical Oncology (ASCO) Palliative Care Guideline Update
Their recommendation: “Inpatients and outpatients with advanced cancer should receive dedicated palliative care services, early in the disease course, concurrent with active treatment. Referral of patients to interdisciplinary palliative care teams is optimal.”
2018 European Society for Medical Oncology (ESMO) position paper on supportive and palliative care
“This position paper advocates for patient-centred care (including supportive and palliative care) to be integrated by a multidisciplinary team to anticancer treatment, from the time of diagnosis and throughout the continuum of disease…”
Geriatrician Assessment and Integrated Care May Help Older Cancer Patients
Racial Disparities in Palliative Care
Palliative Care in the African American Community : Fast Facts and Concepts
How to Increase Awareness and Reduce Gaps in Palliative Care for Minorities - Center to Advance Palliative Care (CAPC)
Sexual Health & Cancer
How Cancer and Cancer Treatment Can Affect Sexuality - American Cancer Society
Sex in the Face of Metastatic Disease by Dr. Don Dizon
We are planning an episode on sex/intimacy/dating for season 3. If you’d like to share your story or have a question you’d like answered contact us.
Complementary Therapies & MBC
Complementary and Integrative Medicine for Metastatic Breast Cancer - Living Beyond Breast Cancer
Mental Health Benefits from One Dose of Psychedelic Drug Last for Years in People with Cancer - NYU
Memorial Sloan Kettering Cancer Center’s About Herbs database
Do you have Appointment Fatigue? Cure Today Magazine offers some tips.
More reading:
In Palliative Care, Comfort Is the Top Priority by Paula Span, The New York Times 2/12/2016
Palliative Care for Metastatic Breast Cancer: A Knowledge Summary Fred Hutchinson Cancer Research Center Breast Cancer Initiative (BCI 2.5)
MORE ON OUR GUESTS
Leda Dederich First Opinion: A widely used guideline said I didn’t need a mammogram. It was wrong - STAT News
Shonte Drakeford Living With Metastatic Breast Cancer: How I Reinvented Myself - Cancer.net
Shonte Drakeford on Life as a Young Black Woman with MBC - MBC Alliance
When Hope Needs Hope - Deanna Duncan in the Chattanooga Times Free Press
Nurse of the Week Stephanie Walker on Living with MBC: “Don’t Put Your Head in the Sand” - Daily Nurse
An MBC Diagnosis and Job Loss Led Stephanie Walker to Become Her Own Best Advocate - Komen Blog
No one should face MBC alone.
Whether you have a diagnosis yourself, or you're a friend, family member or caregiver of someone with a diagnosis, we're here to lend support, give information, share experiences, and to lift you up every time you need it. Research has proven that having the support we need during our most challenging times is paramount to honing coping skills and striving for wellness. Our supportive network is made of people just like you, who DO know what it's like, who HAVE been there, who CAN help.
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