National Comprehensive Cancer Network forum examines the
impact knowledge gaps, societal stigma, and shifting policies can
have on quality of life for people with cancer.
WASHINGTON, May 6, 2024
/PRNewswire/ -- The National Comprehensive Cancer
Network® (NCCN®)—an alliance of leading
cancer centers—hosted an oncology policy summit, today, focused on
how sexual and reproductive health can impact people with cancer
before, during, and after treatment. Speakers covered a wide range
of topics, within the context of gender and sex, intimacy,
fertility and reproductive health, treatment side-effects, and the
impact of a changing policy landscape in the wake of new laws and
judicial decisions.
"We can't overlook the importance of
quality of life for people being treated for cancer and those in
remission."
The summit began with an introduction from NCCN's Chief
Executive Officer, Crystal S.
Denlinger, MD, who previously served for many years as
Chair of the NCCN Clinical Practice Guidelines in Oncology (NCCN
Guidelines®) for Survivorship. These evidence-based
expert consensus recommendations feature best practices for
addressing sexual health, fertility, hormone-related symptoms, and
many other late and long-term effects from cancer. The
clinician-facing NCCN Guidelines® for Survivorship, as
well as a patient- and caregiver-friendly format, are all available
for free at NCCN.org or via the Virtual Library of NCCN
Guidelines® App.
Dr. Denlinger remarked: "We can't overlook the importance of
quality of life for people being treated for cancer and those in
remission. High-quality cancer care means addressing any barriers
preventing patients from living their best possible life. When it
comes to sexual and reproductive health, lack of discussion can be
a significant limitation. That is why we have brought together a
diverse group of experts to take part in these delicate but
important conversations."
"Research strongly suggests that oncologists and other cancer
clinicians receive little training on how to discuss sexual health
and related concerns with their patients, to the detriment of their
patients' care and health outcomes," added Jennifer Barsky Reese, PhD, FSBM, Associate
Professor, Cancer Prevention and Control Program, Fox Chase Cancer
Center. "It is so important that education about sexual and
reproductive health be included into the training of cancer
clinicians if these critical health issues are to be addressed in
patients' comprehensive cancer care."
"No one should feel like they have to suffer just because
they've been diagnosed with cancer," agreed panelist
Mindy Goldman, MD, UCSF Helen
Diller Family Comprehensive Cancer Center, Member of the NCCN
Guidelines Panel for Survivorship. "Early menopause is a seldom
discussed, but frequent side-effect from cancer treatment. We have
options to address the symptoms, but patients are often afraid to
bring them up or don't know who to talk to about them, and
clinicians may also consider it to be a taboo topic. Patients
seeking answers will often find themselves confused or relying on
unvetted on-line material. We hope that by including
recommendations on treatment for sexual function issues in the NCCN
Guidelines, we can help people have the information they need to
facilitate these necessary conversations with their care
providers."
Cecile Ferrando, MD, MPH,
Professor of Obstetrics & Gynecology & Reproductive
Sciences UC San Diego Department of OBGYN & Reproductive
Sciences, gave a morning keynote address describing aspects of
cancer care and how they fit within the context of the larger life
experience of the patient.
According to Dr. Ferrando: "The cancer survivorship phase can be
just as important as the treatment phase. Clinicians should know
how to provide inclusive care that considers both one's gender
identity and sexuality in addition to the patient's personal values
and goals. This is why each individual patient story is so
important."
Two afternoon keynote speakers shared first-hand looks at the
issue of reproductive health and fertility preservation for people
undergoing cancer care.
"As someone who has fought for laws to protect fertility options
for cancer patients, and founded Cervivor, Inc. to educate and
empower cervical cancer patients and survivors, I believe sexual
and reproductive health should be core aspects of cancer care,"
said Tamika Felder, Chief
Visionary, Cervivor, Inc. "It's about quality of life and dignity.
By sharing our stories, we can also reduce the stigma around
cancers like cervical cancer. Policies must reflect this to ensure
everyone gets the care they need and deserve."
"Patient navigators help guide patients through the healthcare
system and overcome barriers," explained Kristin Smith, Fertility Preservation
Program Manager, Robert H. Lurie Comprehensive Cancer Center of
Northwestern University. "Fertility
preservation navigators can help bridge the institutional and
interdisciplinary boundaries that exist for patients who need
expedited care."
Speakers throughout the day spoke about the many obstacles that
prevent access to fertility preservation in eligible patients.
"A lesser-discussed side effect of common cancer treatments is
the high-likelihood of infertility," said Tracy Weiss, Executive Director, The Chick
Mission. "Despite this startling fact, very few insurance programs
offer preservation support to cancer patients, which leads to a
lack of access and equity. That's where The Chick Mission steps
in—we strive to give people options regarding a future family
before cancer makes decisions for them. We also try to keep this
conversation buzzing for the public at large. In the six years
since our organization was founded, we have awarded grants to more
than 500 patients, saving families more than six million dollars in total."
Sean Kern, MD, a urologic
oncologist with the Murtha Cancer Center, Uniformed Services University and Walter Reed
National Military Medical Center treats cancer patients and is also
a survivor himself.
Dr. Kern stated: "Adolescent and young adult cancer patients are
a particularly vulnerable population when it comes to sexual health
and infertility concerns. We can't emphasize enough how important
it is to be mindful of how to minimize and manage the late
toxicities from cancer treatment. Patients should be counseled on
the impact treatment may have on fertility and sexual health, so
they can know their options and receive appropriate,
multidisciplinary care."
The panelists also examined how an unclear patchwork of state
laws and regulations can impact patient access to appropriate,
expert-recommended cancer care. They discussed potential
"reproductive service deserts" and what care looks like in
environments where doctors and patients may face medical decisions
that could lead to possible criminal liability. Equity issues
involving gender, race, location, and other factors were also
highlighted.
Additional speakers included: Laila
Agrawal, MD, Medical Oncologist, Norton Cancer
Institute; Joyce Reinecke,
JD, Executive Director, Alliance for Fertility
Preservation; Scout, PhD, MA, Executive Director,
National LGBT Cancer Network; Rebecca Spence, JD, MPH, Chief Ethics
Counsel, American Society for Clinical Oncology (ASCO); and
Ana Tergas, MD, Assistant Professor, Division of Gynecologic
Oncology, Department of Surgery, City of Hope National Medical
Center. The panel discussions were moderated by Clifford Goodman, PhD, and closing remarks
were provided by Gary Weyhmuller,
MBA, Chief Operating Officer, NCCN.
NCCN's next policy summit will focus on Advancing Diversity,
Equity, and Inclusion in the Cancer Workforce. That event will be
taking place in Washington D.C.
and online on Tuesday, September 10,
2024. Visit NCCN.org/summits to learn more.
About the National Comprehensive Cancer Network
The
National Comprehensive Cancer Network®
(NCCN®) is a not-for-profit alliance of
leading cancer centers devoted to patient care, research,
and education. NCCN is dedicated to improving and facilitating
quality, effective, equitable, and accessible cancer care so all
patients can live better lives. The NCCN Clinical Practice
Guidelines in Oncology (NCCN Guidelines®) provide
transparent, evidence-based, expert consensus recommendations for
cancer treatment, prevention, and supportive services; they are the
recognized standard for clinical direction and policy in cancer
management and the most thorough and frequently-updated clinical
practice guidelines available in any area of medicine. The NCCN
Guidelines for Patients® provide expert cancer treatment
information to inform and empower patients and caregivers, through
support from the NCCN Foundation®. NCCN also
advances continuing education, global initiatives, policy, and
research collaboration and publication in oncology. Visit
NCCN.org for more information.
Media Contact:
Rachel Darwin
267-622-6624
darwin@nccn.org
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SOURCE National Comprehensive Cancer Network