Podcast Summary: "323. Sexual Healing After Cancer"

You Are Not Broken with Dr. Kelly Casperson, MD
Guest: Erin Sullivan Wagner
Date: June 22, 2025

Episode Overview

In this powerful episode, Dr. Kelly Caspersen welcomes patient advocate and sexual health educator Erin Sullivan Wagner to discuss the often-overlooked challenges of sexual healing after cancer, especially for women. Together, they address the silence surrounding sexuality following cancer treatments, importance of patient-centered care, gender biases in treatment, the emotional journey of survivorship, and the need for better communication and resources within the medical system. The conversation is candid, empathetic, and actionable—demonstrating how sexual health and emotional intimacy must be normalized and prioritized as aspects of survivorship and overall quality of life.

Key Discussion Points & Insights

1. The Silence Around Sexual Health in Cancer Care (01:34–07:42)

• Dr. Caspersen notes historically patients are told to just be grateful for a cure, and sexuality is usually ignored post-cancer, particularly for women.
  • “The huge, huge elephant in the room, especially with female cancer treatment, is sexuality completely ignored.” (01:36)
• Erin shares her personal journey with anal cancer diagnosed in 2008, the confusion and fear at diagnosis, and initially being assured by clinicians that she’d have no sexual health challenges—without even being asked about her sex life.
  • "Throughout my journey, I was told that I would have no sexual health challenges. And it was interesting that I was told it because it wasn't like I asked about it." (05:13)

2. The Complexity of Diagnosis, Vulnerability, and Seeking Answers (07:42–10:58)

• Erin describes the stigma and emotional confusion of having a “non-sexy” cancer like anal cancer versus more familiar diagnoses like breast cancer.
• Erin reflects on the brain's compulsion to find a cause and the vulnerability of suddenly having a disease that doesn’t feel “real” because she felt fine physically.
  • “There is such a vulnerability in being told that you have something that you don't believe…you are so afraid of what's going to come out of their mouth. So whatever they say is going to be true.” (10:24)

3. Gender Bias and Lack of Focus on Female Sexual Health (11:59–16:28)

• Dr. Caspersen questions Erin on whether women are less likely to raise sexual health concerns upon diagnosis compared to men, noting differences she observes in her urology practice.

• Erin highlights how female sexual health is undervalued compared to men—there’s little discussion about proactively preserving sexual health for women in cancer care.

  • "We don't honor and respect women's sexual health, female sexual health, like we do men." (12:57)

• They discuss the pressures that lead many women with breast cancer to have double mastectomies, sometimes trading sexual pleasure and intimacy for perceived safety or anxiety reduction.

4. Survivorship, The Need for Normalization and Early Counseling (16:28–22:20)

• Erin shares her own struggle: having been told at every turn that there “shouldn’t be” sexual side effects, when she did experience major dysfunction (impossible penetrative sex), she was met with dismissal and circuitous referrals.
  • “Penetrative sex was impossible. I mean, not just uncomfortable, but impossible to the point that I would have passed out. It was so painful.” (19:21)
  • After six months of chasing answers, she suffered irreparable damage—something timely intervention could have prevented.
  • “Instead of all of that happening immediately after my treatment was done…I'm in September when I am getting dilator tools, estrogen cream, any sort of moisturizer. So five months, six months later, before I'm starting to be treated…” (20:12)

5. Systemic Gaps, Shame, and Medical Avoidance (22:20–24:59)

• Dr. Kelly observes how the medical field’s fear of liability can lead to further patient invalidation, passing blame, and missed chances to help suffering and healing.
  • “The medical field is so afraid of being held responsible or being sued, we invalidate you…We pass the ownership. This is a suffering person who needs help healing.” (22:20)
• Erin amplifies the need for systemic, integrated sexual health resources in cancer care.

6. Impact on Relationships & The Importance of Adult Sex Ed (24:59–27:46)

• They discuss how sexual dysfunction after cancer can devastate intimacy and relationships, sometimes leading to divorce and financial strain.
• Erin describes how her attempts to “fix” penetrative sex overtook deeper conversations about emotional and physical pleasure with her partner.
  • “It's funny how it's so difficult to talk to people you sleep with.” (26:18)
• Dr. Kelly points out that quality sex is about more than “just put hard things in soft holes”—it’s about communication and connection, which society fails to teach.

7. Prehabilitation, Group Education, and Building New Models (27:46–31:39)

• Erin suggests prehabilitation classes before treatment (as is sometimes done for prostate cancer patients), involving surgeons, therapists, and counselors to prepare patients (and couples) holistically for upcoming changes.
  • “At the class was the surgeon and a pelvic floor therapist to get them ready for…what to expect week one and week two and week three…” (28:12)
• Dr. Kelly notes the disparity in resources devoted to preserving non-sexual aspects (like hair) versus sexual health during cancer care.

8. The “30 Second Message” and Changing Standard of Care (31:39–33:12)

• Erin’s organization, After Cancer, trains care teams to deliver a short, standard message normalizing sexual health side effects, setting expectations, and opening the door for timely referral.
  • “Giving a patient message, a 30 second message…just to normalize that conversation…issues that are addressed sooner versus later are better resolved.” (31:39)
• She underlines that early, proactive messaging could have spared her irreparable harm.

9. Advocacy, Nonprofit Development, and Provider Training (33:12–39:51)

• Erin recounts how her journey of survival and advocacy led her to coaching and then to collaborating with clinicians and cancer consortia to create education programs and materials for care teams.
• After Cancer became a nonprofit in 2022, with the mission of making sexual health side effect screening a standard part of cancer care.
  • “Our mission really is that all patients impacted by cancer be screened for sexual health side effects as part of their care. A standard of care.” (36:31)
• Their provider-facing resources include workshops and online courses—plus coming initiatives to create patient-facing content and learning pathways tailored by cancer type and demographic.

10. Final Reflections: Emotional and Physical Intimacy (39:51–End)

• Erin’s closing message:
  • “It really is just at the core what all of us need to be emotionally healthy, it's that emotional intimacy. And it's also derived a lot of times through physical intimacy. We need to not forget that…” (39:59)
• Dr. Kelly echoes the importance of starting small, simple changes in clinical practice and supporting both patients and providers in this journey.

Notable Quotes & Memorable Moments

• On gender bias in cancer care:
  • "We don't honor and respect women's sexual health, female sexual health, like we do men." – Erin Sullivan Wagner (12:57)
• On misinformation after treatment:
  • “Penetrative sex was impossible. I mean, not just uncomfortable, but impossible…It was so painful…” – Erin Sullivan Wagner (19:21)
• On systemic issues in medicine:
  • "The medical field is so afraid of being held responsible or being sued, we invalidate you, we make it your fault. We pass the ownership." – Dr. Kelly Caspersen (22:20)
• On addressing survivorship care:
  • "This issue has to be addressed at the time of diagnosis so that expectations can be set, so that I know what to watch in terms of changes, so that I can get some help when I need it." – Erin Sullivan Wagner (17:11)
• On prehabilitation and group education:
  • "At the class was the surgeon and a pelvic floor therapist to get them ready for the types of exercises...and then what to expect week one and week two and week three..." – Erin Sullivan Wagner (28:12)
• On the importance of an early patient message:
  • "Issues that are addressed sooner versus later are better resolved. The chances are better we're going to resolve them. I waited six months. It was irreparable." – Erin Sullivan Wagner (31:39)
• On emotional intimacy and healing:
  • "It really is just at the core what all of us need to be emotionally healthy, it's that emotional intimacy…The sexual health is just a real obvious pathway to it." – Erin Sullivan Wagner (39:59)

Important Timestamps

• Sexuality ignored in post-cancer care: 01:34–02:24
• Erin’s personal diagnosis journey: 03:37–07:42
• Gender biases in sexual health after cancer: 12:57–16:28
• Failure of medical system and delayed care: 19:21–22:20
• Impact on relationships: 24:59–27:46
• Prehabilitation models: 27:46–29:42
• The 30 second message approach: 31:39–33:12
• Genesis of nonprofit and provider resources: 33:12–39:51
• Final words on intimacy: 39:51–41:09

Related Resources

• After Cancer Nonprofit: aftercancer.co (provider workshops, courses, roadmap development)
• Dr. Kelly Caspersen: kellycaspersonmd.com (sex ed, membership, patient resources)

Tone:
Candid, compassionate, and empowering. The conversation is frank, supportive, and focused on changing both culture and practice around sexuality after cancer.

This episode is essential listening for cancer survivors, their partners, healthcare providers, and anyone interested in supporting holistic health after cancer. It exposes gaps in care, offers hopeful solutions, and underlines that sexual health is NOT optional for well-being—it's vital.