"Sexual dysfunction is a common consequence of cancer treatment, affecting at least half of men and women treated for pelvic malignancies over a quarter of people with other types of cancer. Problems are usually linked to damage to nerves, blood vessels, and hormones that underlie normal sexual function. Sexual dysfunction also may be associated with depression, anxiety, relationship conflict, and loss of self-esteem." (source)
"Sexuality is an integral part of quality of life that can be radically altered by the adverse effects of cancer therapies. Following treatment, sexual dysfunction can arise from physical and psychological changes in body image and self-concept, altered sense of attractiveness, physical discomfort, and emotional distress, diminishing overall quality of life. Estimates of overall prevalence rates of sexual difficulties associated with cancer and its treatment range from 40% to 100%." (source)
"The incidence of sexual dysfunctions ranged between 30% and 80% in women with cancer. Women with cancer had a 2.7- and 3.5-fold higher risk of developing sexual dysfunctions, mainly alterations in desire, arousal, and orgasm, than women without cancer." (source)
"A survey of patients in a radiation oncology clinic showed that 87% of patients reported that cancer treatment impacted sexual function or desire, but only 27.9% reported ever formally being asked about sexual health." (source)
"When compared with men, women with cancer are significantly less likely to be asked about sexual health by their medical teams (53% vs. 22%, respectively). This is consistent with a previously reported study that estimated 80% of patients with prostate cancer received information about sexual dysfunction after cancer treatment compared with 33% of patients with breast cancer. These data continue to highlight the lack of attention paid to sexuality after cancer." (source)
"Decreased sexual sensation and sexual responsiveness affects over 60% of women diagnosed with cancer, while erectile dysfunction affect up to 75% of men with cancer." (source)
"Despite the high frequency of sexual toxicity, however, few survivors were warned about this potential side effect, and even fewer were formally asked about their sexual health after treatment. What’s more, results showed that women who survive cancer may be significantly less likely than men to have their sexual side effects addressed by their provider. Based on these findings, authors of the study recommended that oncology practices integrate questionnaires that assess sexual health into survivorship care for all patients." (source)
"Changes in sexual functioning – one of the most ubiquitous life-altering, adverse effects of prostate cancer treatment – impact gay and heterosexual men very differently. Yet too few health care providers ask about their patients’ sexual practices or know the answers when asked about the effect of prostate cancer on gay men’s sexuality or where we can receive culturally competent support on issues of sex, intimacy and our relationships." (source)
"Many of the issues that affect sexual function are much longer lasting than other cancer treatment side effects and often are not seen until years after treatment, as patients might not feel up to exploring their sexuality for some time and may not even realize any issues have arisen. But the distress related to these changes is real and measurable and can persist for years." (source)
"Noteworthy, this burden can affect the male subject even when he is not the patient but the caregiver. Indeed, since cancer involves all the family members, male partners of oncological patients may experience emotional distress leading to sexual issues. In this context, the male partner could experience feelings of unattractiveness, fear to start sexual activity and loss of libido, up to the occurrence of ED." (source)
Cancer types with higher rates of treatment-related sexual side effects:
Though sexual side effects are not discussed as often or as openly as they should be considering their prevalence, there are many resources for relief and help. You do not need to hide or "put up with" side effects that negatively effect your sex life, relationships, or self-esteem.
Below are some considerations for sexual side effect improvement:
Talk to your doctor about which of these possible solutions are right for you.
This is Me by Keala Settle & The Greatest Showman Ensemble
It's clear, when reviewing scientific literature, that both patient awareness and education of potential sexual side effects and the necessary follow-up and referral to appropriate specialists is not being delivered as it should. There is plenty of room for improvement in caring for people with cancer who are faced with or experiencing impactful sexual side effects due to treatment. Health care provider's embarrassment, shame, or discomfort surrounding conversations about sexual health needs to take a backseat to the needs and the care of patients. Patients want to be aware of possible sexual dysfunction resulting from their treatments, and they want education, discussion, validation, and support. Let's give it to them.
If you provide care to oncology patients, please consider incorporating the following practices to better serve the sexual health and psychosexual needs of your patients:
There's much more in store for this page. Stay tuned! In the meantime, please take advantage of the resource collection below to learn more about sexual health, intimacy, and fertility as it relates to cancer and cancer treatment. If you haven't yet visited the Newly Diagnosed page for a thorough overview of the early cancer experience, please check it out.
We regularly review these resources to make sure that all links work correctly and are of value to our visitors. If you find a link that isn't working, please email coral@oncologyoffense.com. If you would like us to consider adding a resource to our list, please email us with details.
Find a Pelvic Floor Therapist (APTAPelvicHealth.org)
https://www.aptapelvichealth.org/ptlocator
Find a Sex Therapist (Psychology Today)
https://www.psychologytoday.com/us/therapists?category=sex-therapy
Find Sexual Educators, Counselors, and Therapists (AASECT)
https://www.aasect.org/referral-directory
Find a Reproductive Medicine Specialist (ASRM)
https://www.reproductivefacts.org/find-a-health-professional/
Find a Fertility Specialist (Fertility Out Loud)
https://www.fertilityoutloud.com/find-specialist-results/
Find a Women's Sexual Health Provider (ISSWSH)
https://app.v1.statusplus.net/membership/provider/index?society=isswsh
Sex after Cancer: The Sexual Medicine Society of North America
Sexual Medicine Society of North America- Sexual Medicine Provider Directory
SMSNA - Healthcare Provider Directory (statusplus.net)
Scientific Network on Female Sexual Health and Cancer: Resources for Cancer Survivors
For Cancer Survivors (cancersexnetwork.org)
Sex, Relationships, and Cancer- Macmillan Cancer Support (YouTube series)
Sex, relationships and cancer - YouTube
American Association of Sexuality Educators, Counselors, and Therapists
AASECT:: American Association of Sexuality Educators, Counselors and Therapists |
University of Chicago Medicine: PRISM Program in Integrative Sexual Medicine (for women and girls with cancer)
https://www.uchicagomedicine.org/cancer/types-treatments/prism-clinic
ASCO: Self-Image and Cancer
https://www.cancer.net/coping-with-cancer/managing-emotions/self-image-and-cancer
The Sexual Self and Cancer: Redefining the New Normal (JONS)
Female Sexual Health and Intimacy After Cancer with Dr. Sage Bolte (Legacy Cancer Institute: 1-hour YouTube video)
https://www.youtube.com/watch?v=snZtkvEuibY
Men, Sexual Health, and Cancer (OncoLink)
Men, Sexual Health, and Cancer | OncoLink
Male Sexual Health After Cancer (Livestrong) Includes side effects & treatment options
Male Sexual Health After Cancer | Livestrong
The Scientific Network on Female Sexual Health and Cancer Our vision is that all women and girls affected by cancer will have timely access to evidence-based education and care to promote sexual well-being and optimize sexual outcomes.
https://www.cancersexnetwork.org/
Let’s Talk About Sexual Health and Fertility Issues Faced by People With Cancer (CancerHealth)
https://www.cancerhealth.com/article/talk-sexual-health-fertility-issues-faced-people-cancer
Prevalence of sexual dysfunction in women with cancer: A systematic review and meta-analysis. (Esmat Hosseini, Seyedeh et al. International journal of reproductive biomedicine vol. 20,1 1-12. 18 Feb. 2022, doi:10.18502/ijrm.v20i1.10403)
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8902793/
Sexual Dysfunction in Women with Cancer: A Systematic Review of Longitudinal Studies. (Sousa Rodrigues Guedes, Thais et al. International journal of environmental research and public health vol. 19,19 11921. 21 Sep. 2022, doi:10.3390/ijerph191911921)
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9564951/
Sexuality After Cancer as an Unmet Need: Addressing Disparities, Achieving Equality. (Anne Katz et al., Am Soc Clin Oncol Educ Book 42, 11-17(2022). DOI:10.1200/EDBK_100032)
https://ascopubs.org/doi/10.1200/EDBK_100032
Psychological Impacts of Male Sexual Dysfunction in Pelvic Cancer Survivorship. (Twitchell, David K et al. Sexual medicine reviews vol. 7,4 (2019): 614-626. doi:10.1016/j.sxmr.2019.02.003)
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6763375/
Unrecognized sexual dysfunction in gay and bisexual men after prostate cancer treatment: the antecedents and impact of anodyspareunia. (Wheldon CW et al., J Sex Med. 2023 Mar 31;20(4):515-524. doi: 10.1093/jsxmed/qdad009. PMID: 36796863; PMCID: PMC10078940.)
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10078940/
Sexual Health: An Issue for Many Survivors of Cancer (ASCO Post)
https://ascopost.com/issues/december-25-2020/sexual-health-an-issue-for-many-survivors-of-cancer/
Talking about sex: erectile dysfunction in the oncology patient. (Romeo, M., Spaggiari, G., Furini, C., Granata, A. R. M., Toss, A., Simoni, M., & Santi, D. (2023). Endocrine-Related Cancer, 30(6), e220401. Retrieved May 20, 2024, from https://doi.org/10.1530/ERC-22-0401)
https://erc.bioscientifica.com/view/journals/erc/30/6/ERC-22-0401.xml
Sexual dysfunction in young adult survivors of childhood cancer–A population-based study (Hovén, E. et al., European Journal of Cancer, Volume 154, 2021, Pages 147-156, ISSN 0959-8049, https://doi.org/10.1016/j.ejca.2021.06.014.)
https://www.sciencedirect.com/science/article/pii/S0959804921003890
Life After Cancer Treatment: Body Changes and Intimacy (NCI)
https://www.cancer.gov/publications/patient-education/facing-forward
New Survey Breaks the Silence on Women, Lung Cancer and Sexual Health (Go2) The Sexual Health Assessment in Women with Lung Cancer (SHAWL) survey asked women diagnosed with lung cancer about their sexual activity. Among the key findings: 77% percent reported little or no interest in sexual activity and 67% reported rarely or never wanting to have sexual activity. The most common reasons that impacted satisfaction with their sex lives were fatigue (40%), feeling sad or unhappy (28%), issues with a partner (22%) and shortness of breath (15%).
https://go2.org/blog/new-survey-breaks-the-silence-on-women-lung-cancer-and-sexual-health/
International Society for the Study of Women's Sexual Health (ISSWSH)
Menopausal Symptoms Due to Cancer Treatment (Cancer.net/ASCO)
Dating, Sex, and Reproduction (Cancer.net/ASCO)
https://www.cancer.net/navigating-cancer-care/dating-sex-and-reproduction
ASCO Answers: Sexual Side Effects of Cancer
https://www.cancer.net/sites/cancer.net/files/asco_answers_sexual_side_effects.pdf
How Cancer and Cancer Treatment Can Affect Sexuality (ACS)
Sexual Health Issues in Men with Cancer (NCI)
https://www.cancer.gov/about-cancer/treatment/side-effects/sexuality-men
Life After Cancer: Changes to a Man's Sex Life (Johns Hopkins)
Cancer Can Affect Male Sexual Desire and Response (ACS)
How Cancer Changes Your Sex Life--and What You Can Do About It (Yale Medicine)
https://www.yalemedicine.org/news/sex-intimacy-after-cancer
Sexual Health Issues in Women with Cancer (NCI)
https://www.cancer.gov/about-cancer/treatment/side-effects/sexuality-women
Managing Female Sexual Problems Related to Cancer (ACS)
Female Sexual Health After Cancer (Livestrong)
https://www.livestrong.org/we-can-help/finishing-treatment/female-sexual-health-after-cancer
Sexual Dysfunction in Women with Cancer: A Systematic Review of Longitudinal Studies. (Sousa Rodrigues Guedes, Thais et al. International journal of environmental research and public health vol. 19,19 11921. 21 Sep. 2022, doi:10.3390/ijerph191911921)
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9564951/
Addressing Common Sexual Health Concerns During Cancer Survivorship: An Expert Perspective (Cancer.net/ASCO)
Sexuality After Cancer as an Unmet Need: Addressing Disparities, Achieving Equality (Anne Katz et al., Am Soc Clin Oncol Educ Book 42, 11-17(2022). DOI:10.1200/EDBK_100032)
https://ascopubs.org/doi/10.1200/EDBK_100032
Regaining Sexual Health After Cancer Treatment (Mayo Clinic)
https://cancerblog.mayoclinic.org/2022/01/19/regaining-sexual-health-after-cancer-treatment/
For Cancer Survivors, Sexual Intimacy Can Pose Unexpected Issues (Washington Post)
https://www.washingtonpost.com/wellness/2023/04/24/cancer-sexual-side-effects/
Sexual Health & Intimacy (Leukemia & Lymphoma Society)
https://www.lls.org/managing-your-cancer/sexual-health-and-intimacy
Fertility Issues in Girls and Women with Cancer (NCI)
https://www.cancer.gov/about-cancer/treatment/side-effects/fertility-women
Fertility Issues in Boys and Men with Cancer (NCI)
How Cancer and Cancer Treatment Can Affect Fertility (ACS)
Fertility considerations in cancer treatment: Preserving hope for the future (Mayo Clinic)
Fertility Concerns and Preservation for Women (Cancer.net/ASCO)
Fertility Concerns and Preservation for Men (Cancer.net/ASCO)
Alliance for Fertility Preservation
Alliance for Fertility Preservation
The Oncofertility Consortium
The Oncofertility Consortium (msu.edu)
Livestrong: Fertility Program (resources, information, financial support)
Livestrong Fertility Program | Livestrong
American Society for Reproductive Medicine (ASRM) (patient site)
https://www.reproductivefacts.org/
ASRM Find a Health Professional
https://www.reproductivefacts.org/find-a-health-professional/
HER Abortion Resources (Health Education & Resources-HER)
https://sourcesforher.life/abortionresources
Society for Assisted Reproductive Technology (SART)
Society for Male Reproduction and Urology (SMRU)
https://connect.asrm.org/smru/home?_ga=2.77622484.1589911933.1710864826-349480847.1710864826&ssopc=1
Society for Reproductive Endocrinology & Infertility (SREI)
FORCE/facingourrisk.org: Fertility and Cancer Treatment: Understand the effects of cancer treatment and prevention on fertility and family planning and options for assisted reproduction.
https://www.facingourrisk.org/info/risk-management-and-treatment/fertility-and-cancer-treatment
Take Charge- My Cancer Fertility (F*ck Cancer) If you are interested in having a child after cancer, regardless of your gender, it is critical to advocate for yourself by talking to your medical team about your fertility options. Whether you want to preserve your fertility to have the best possible chances of having a biological child, choose to have non-biological children through adoption or surrogacy, or decide that your family looks perfect as is, your Oncofertility is just that – yours.
https://mycancerfertility.org/
Team Maggie's Dream Fertility Grants for Cancer Patients (egg & sperm preservation)
Team Maggie's Dream | Fertility Grants for Cancer Patients (teammaggiesdream.org)
Baby Quest Foundation provides financial assistance through fertility grants to those who cannot afford the high costs of procedures such as IVF (in vitro fertilization), gestational surrogacy, egg and sperm donation, egg freezing, and embryo donation.
BabyQuest Foundation | In Vitro Fertilization Financial Aid
Worth the Wait: Our mission is to ease the burden for young adult cancer survivors pursuing parenthood by providing financial support for fertility treatments, adoption and surrogacy.
Worth the Wait Charity | Fertility & Adoption Grants for Cancer Survivors
Fertility Within Reach offers a list of grants and discount programs for IVF, surrogacy, adoption, fertility preservation, and more.
Grant & Discount Programs (fertilitywithinreach.org)
Verna's Purse: ReproTech strives to make fertility preservation services available to all individuals who are facing fertility-threatening treatment, therefore we are proud to offer a generous financial assistance program to patients faced with economic challenges, particularly at a time when it is hardest to handle. Verna’s Purse is that program.
Verna's Purse Financial Aid - Reprotech
Allyson Whitney Foundation: Our ‘Life Interrupted Grants’™ cover a wide range of needs, including (but not limited to): current and residual medical bills, rent, utilities, car and health insurance premiums, * IVF start up treatments (egg retrieval and sperm banking), integrative therapies, travel expenses, and medical hair pieces.
Expect Miracles Foundation SAMFund (Surviving And Moving Forward) Family Building Grant for egg, sperm, or embryo preservation.
SAMFund - Expect Miracles Foundation
Hope for Two: The Pregnant with Cancer Network offers free support for women diagnosed with cancer while pregnant. We connect women who are currently pregnant with cancer with other women who have experienced a similar cancer diagnosis.
Hope for Two | The Pregnant with Cancer Network
Pregnancy & Cancer Registry
Cancer and Pregnancy - Cancer Treatment In Pregnancy - Registry
Resolve: The National Infertility Association
Homepage | RESOLVE: The National Infertility Association
Chick Mission Our mission is to ensure every young woman newly diagnosed with cancer has the option to preserve fertility through direct financial support, educational programs, and advocacy efforts.
The Prelude Network is the largest and fastest-growing network of fertility centers in North America—and it’s built on providing compassionate care throughout every step of the patient journey. We meet every aspiring parent exactly where they are in their journey, partnered or unpartnered, no matter how they identify or who they love. Our access to other premier fertility providers such as egg banks, cryopreservation facilities, fertility financing, and more, also equips us to tailor care to every patient’s unique needs.
https://www.preludefertility.com/
Oncofertility (Aspire Fertility) There are many options available for people with cancer to protect their fertility for the future. We encourage newly diagnosed patients to consult with a reproductive endocrinologist as soon as possible after their diagnosis. With early action, there are treatments available to minimize the risk of infertility after recovery. Many of the fertility preservation options for women with cancer require at least a few weeks to complete, which will delay cancer treatment.
https://www.aspirefertility.com/fertility-treatment/fertility-preservation/oncofertility
Livestrong Fertility Program Livestrong Fertility is dedicated to providing reproductive information, resources and financial support to survivors whose cancer and its treatment present risks to their fertility. With average cost for female fertility preservation in the United States being $12,000 for women and $700 for men, we hope to provide affordable preservation options to cancer survivors. The Livestrong Fertility Discount Program has partnered with compassionate clinics across the country who have all committed to providing at least a 25% discount to their services for qualifying patients. In addition, we partner with EMD Serono to provide free stimulation medication to patients approved through our program.
https://www.livestrong.org/what-we-do/program/fertility
Heart Beat Fertility Preservation Program For females of child bearing age, future fertility may be of concern. Fertility preservation treatment can help. Ferring Pharmaceuticals has a solution for providing the necessary medications through its Heartbeat program, available from AllianceRx Walgreens Pharmacy. Heart Beat provides select fertility medications at no cost for eligible patients. Qualifying patients must be female, be a US citizen or permanent resident, have received a diagnosis of cancer, and have received no chemotherapy within the previous 12 months. Oncologists and reproductive endocrinologists are required to determine that fertility preservation treatment is medically appropriate. Terms and conditions apply. To request additional information, and for full program terms and conditions, call 1-888-347-3415. For residents of Arkansas, Massachusetts, or New Jersey, please call 1-877-252-0553.
ReUnite Oncofertility offers discounted medications to oncology patients undergoing fertility preservation. This program will approve up to a 100% discount on the patient’s co—pay which will be based on clinical considerations and financial need.
https://reuniterx.com/discount-programs/#Oncofertility
Tinina Q. Cade Foundation Grants The Cade Foundation is a 501(c)(3) tax exempt non profit organization that was started in 2005 to provide information support and financial assistance to help needy infertile families OVERCOME infertility.
Gift of Parenthood Join hundreds of families who have used Gift of Parenthood to raise money for their fertility journey. Founded by Teresa Barbosa in 2019, Gift of Parenthood is a non-profit driven by a simple mission – to help families and individuals overcome infertility through education, awareness and fertility assistance grants. We provide grants to couples and individuals at least four times a year.
Fertility Outreach Questions are bound to come up as you go through your fertility journey, but Fertility Outreach is here to help you every step of the way. Our fertility coaches offer real-time personalized guidance and support right to your phone.
https://outreach.fertilityoutloud.com/
SaveMyFertility.org is an authoritative resource for adult cancer patients and the parents of children with cancer who want to learn more about preserving their fertility before and during cancer treatment. SaveMyFertility.org also provides information and guidance to oncologists, endocrinologists, and other health care providers concerned with the reproductive health of cancer patients and survivors. The mission of SaveMyFertility.org is to give patients, parents, and physicians the information they need to have a better, more comprehensive dialog about fertility preservation, and to provide patients with information about their long-term health and well-being.
https://www.savemyfertility.org/about-savemyfertility
How to Access and Interpret Fertility Clinic Success Rates (CDC)
https://www.cdc.gov/art/reports/2020/how-to-access-interpret.html
Empowering Intimacy Empowering Intimacy exists to empower and educate all humans on intimacy issues, sexual health & wellness, and sexual dysfunction issues throughout life, long-term illness, cancer, and the myriad of other “life things” that can trigger these issues. We offer educational presentations, webinars, one-on-one sessions, Empowerment Sessions, and so much more. Our goal is to help humans better understand their sexual bodies to feel more confident addressing intimate and sexual topics.
How to Rekindle Intimacy After Cancer Treatment (Patient Power)
Dana-Farber Cancer Institute: Sexual Health, Intimacy, and Cancer
Sexual Health, Intimacy, and Cancer - Dana-Farber Cancer Institute | Boston, MA
Reclaiming Intimacy We are a completely unique, one-of-a-kind cancer & illness advocacy organization providing people, caretakers, advocates, and medical community with educational resources, products, and tools to improve sexual health and intimacy through illness. There are extensive problems with medical care when it comes to sexual dysfunction and we have spent years researching and understanding the causes and the unfortunate affects.
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