Patient Perspective on Strategies for Long-Term Management of Recurrent Ovarian Cancer
Strategies for Long-Term
Management of Recurrent
September 10, 2015
Ovarian Cancer Survivor/Research Advocate
11-year Ovarian (2 recurrences) and 4-year Breast Cancer Survivor
FDA Patient Representative
CDMRP Ovarian Cancer Research Program Integration Panel
Roswell Park Ovarian Cancer SPORE Patient Representative
2014 AACR Scientist↔Survivor Program
Ovarian Cancer National Alliance
◦ Research Advocate
◦ Formerly on Special Programs (Education) and Conference Committees
◦ Conference Speaker; Survivors Teaching Students®
◦ Helpline Peer
◦ Former Peer Support Group Facilitator
◦ Presented at SGO 2008 “The Patient’s Perspective”
NY Presbyterian-Columbia Woman to Woman Peer
Ovarian Cancer Research Fund: Clinical Trials Video and
2013 Congressional Briefing on Ovarian Cancer for Society for
Women’s Health Research (SWHR)
Journal of Gynecologic Oncology, November 2014, Volume 135, Issue 2, Pages 261–265
The work is not over until
everyone has a chance
to have a lasting and meaningful
Dance with NED.
No Evidence of Disease
FDA Ovarian Cancer Endpoints Workshop
Co-sponsored by FDA/SGO/AACR/ASCO
September 3, 2015
Ovarian Cancer Survivorship Survey
Ovarian Cancer National
The Patients’ Perspective
“Surviving and living with ovarian cancer is not an arbitrary
period like five years. It is an everyday thing where you
wake up, take a deep breath in spite of your fears and pain,
and find a way to take your place in the world”
“Surviving cancer is not a place you strive for in the
distance. It is here and now. You are in it. It is up to you to
be part of it, to find your hope.”
“Hope is falling asleep and
expecting to wake up each day
in spite of what you might have
heard. It is thinking about the
possibilities not probabilities.
It is preparing to die but
expecting to live.”
“When faced with uncertainty
there is nothing wrong with hope.”
• Feeling sad most of the time.
• Loss of pleasure and interest in activities you
used to enjoy.
• Changes in eating and sleeping habits.
• Slow physical and mental responses.
• Unexplained tiredness.
• Feeling worthless.
• Feeling guilt for no reason.
• Not being able to pay attention.
• Frequent thoughts of death or suicide.
• Repeated frightening thoughts.
• Being distracted or overexcited.
• Trouble sleeping.
• Feeling detached from oneself or reality
When to get help:
►Any time you feel you need assistance
►When mood/feelings get in the way of day to day functioning
Images: various internet sources
Various internet sources, SHARE and Robin Cohen
It is a truthuniversallyacknowledged,
that a womanin possessionof
must bein want of
Adapted from Pride and Prejudice by Jane Austin.
Goals and Priorities
After we have thought about our goals and priorities, it may be
easier to decide what we are willing to do to achieve them.
One day Alice came to a fork in the
road and saw a Cheshire cat in a tree.
“Which road do I take?” she asked.
“Where do you want to go?” was his
“I don’t know,” Alice answered.
“Then,” said the cat, “it doesn’t
If you don’t know where you want to go,
any road will take you there.
Empowered Decision Making:
Important Tools for Navigation
• Current tests and scans
• Location, volume
• Type of tumor
• Hereditary mutation status
• Genetic testing recommended
for all ovarian cancer patients
• Lynch Syndrome? BROCA Panel?
• Other information
• Molecular profiling?
• Open and honest dialogue
• Ask questions; Negotiate
• Plan to manage side effects
• Be your own advocate
Empowered Decision Making:
• Consider using clinical trials to expand treatment options.
• Consider participating in clinical trials sooner. The fewer
lines of therapy someone has had, the more trials they
can qualify for.
• Many novel drugs and targeted therapies are paired with
approved drugs in trials. Discuss with your medical team
whether it is reasonable to delay using those particular
approved drugs to help maintain eligibility down the road.
SHARE’s Clinical Trial Matching Service
Empowered Decision Making:
Second Opinions or Consultations
• Fresh look
• More treatment options
• Clinical trials
• Different approach
• Similar patient
• Confirmation / Explanation
• Manage Side Effects
• More brains thinking about YOU!
► Plan ahead!
• Access to slides
Is there a clinical trial option?
Is it reasonable?
Is it available?
How does it fit with how I want to live?
Adapted from GCF Survivor Course at NYU 5/15/10: Management of Recurrent Ovarian Cancer,
Matthew A. Powell, MD, Washington University School of Medicine, St. Louis, MO
Staying in the game: Keep Options in
• Be informed and be your own advocate!
• Incorporate Goals and Priorities
• Consider Clinical Trials to expand treatment options
• Second Opinions / Consultations
• Proactively Manage Side Effects
• Chemo Breaks!
• Keep Options in Play
• Explore Different Ways to Cope
• Ask for Support
NCCN Patient Guidelines: http://www.nccn.org/patients/guidelines/ovarian/index.html
NCI Designated Cancer Centers:
NCI’s Translational Research Program: Ovarian Cancer SPORES
Society of Gynecologic Oncology (SGO): Information for patients
NOCC: Ovarian Cancer Resource Guide for Women with Recurrent Disease
MSKCC About Herbs
SHARE Clinical Trial Matching Service through EmergingMed
Gilda’s Club NYC: http://gildasclubnyc.org/
OCRF—Ovarian Cancer Research Fund Alliance: http://www.ocrfa.org/
NOCC—National Ovarian Cancer Coalition: http://www.ovarian.org/
The Human Side of Cancer: Living With Hope, Coping With Uncertainty
by Jimmie Holland, MD (Chapter Two: The Tyranny of Positive Thinking)
Kevin MD Article about Positive Thinking quoting Jimmie Holland:
Cure Forward: https://www.cureforward.com/
(Slide updated 2016)