On May 6, 2024 the National Comprehensive Cancer Network® (NCCN®)—an alliance of leading cancer centers—hosted an oncology policy summit which focused on how sexual and reproductive health can impact people with cancer before, during, and after treatment.

The participating 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.

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.

A lack of Discussion
In her introduction, Denlinger noted that “…we can’t overlook the importance of (health related) 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.

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“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,” Barsky Reese concluded.

“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
And while it overall survival from cancer has improved over the last decades, there are also more women who are experiencing the long-term effects of cancer treatment, including, early menopause. Managing menopausal symptoms after cancer treatment can be challenging, and is often more severe than at  managing ‘natural’ menopause. And symptoms can extend beyond vasomotor symptoms, while treatment-induced symptoms might include sexual dysfunction and impairment of sleep, mood, and health related quality of life.[1]

“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.”

Survivorship phase
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.

“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,” Ferrando said.

First-hand looks
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 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 at Cervivor.

“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,” Smith added.

Throughout the day speakers 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 of The Chick Mission.

Loss of infertility can have far reaching consequences and the emotional and physical impact of impaired or loss of fertility can be complex and long lasting, with women experiencing high levels of distress, menopausal symptoms, and changes in sexual function persisting into survivorship. [2]

“Despite [these startling facts], 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 cancer survivor himself.

“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,” Kern said.

Preservation of Fertility Planning Options
The emphasis on health related quality of life and the vulnerable position of patients follows Denlinger’s remarks earlier this year in which she urged policymakers to protect fertility preservation and planning services, including in vitro fertilization, to ensure people facing and surviving cancer have equitable access to appropriate fertility preservation options as a standard part of cancer care.

“Many cancer therapies can negatively affect reproductive health and fertility. Considerations of reproductive health, including fertility preservation and planning, are integral components of appropriate cancer care for people of reproductive age facing or surviving cancer. Evidence-based expert consensus clinical practice guidelines for adolescents, young adults, and all cancer survivors of reproductive age recommend consideration of fertility preservation options as a key component of care. Given the rising incidence of cancer in younger people, [3] jeopardizing access to these necessary services has significant ramifications for everyone engaged in cancer treatment planning and delivery,” NCCN’s Chief Executive Officer, Denlinger concluded.

Unclear patchwork of laws
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.

[1] Hickey M, Basu P, Sassarini J, Stegmann ME, Weiderpass E, Nakawala Chilowa K, Yip CH, Partridge AH, Brennan DJ. Managing menopause after cancer. Lancet. 2024 Mar 9;403(10430):984-996. doi: 10.1016/S0140-6736(23)02802-7. Epub 2024 Mar 5. PMID: 38458217.
[2] Carter J, Chi DS, Brown CL, Abu-Rustum NR, Sonoda Y, Aghajanian C, Levine DA, Baser RE, Raviv L, Barakat RR. Cancer-related infertility in survivorship. Int J Gynecol Cancer. 2010 Jan;20(1):2-8. doi: 10.1111/IGC.0b013e3181bf7d3f. PMID: 20130497.
[3] Koh B, Tan DJH, Ng CH, Fu CE, Lim WH, Zeng RW, Yong JN, Koh JH, Syn N, Meng W, Wijarnpreecha K, Liu K, Chong CS, Muthiah M, Luu HN, Vogel A, Singh S, Yeoh KG, Loomba R, Huang DQ. Patterns in Cancer Incidence Among People Younger Than 50 Years in the US, 2010 to 2019. JAMA Netw Open. 2023 Aug 1;6(8):e2328171. doi: 10.1001/jamanetworkopen.2023.28171. PMID: 37585204; PMCID: PMC10433086.

Featured image by Kelly Sikkema on Unsplash. Used with permission.

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