HHS Public Access Author manuscript Author Manuscript
Cancer. Author manuscript; available in PMC 2017 July 15. Published in final edited form as: Cancer. 2016 July 15; 122(14): 2134–2137. doi:10.1002/cncr.29988.
Filling the gaps in knowledge and treatments for sexual health in young adult male cancer survivors Karen L. Syrjala, PhD Clinical Research Division, Fred Hutchinson Cancer Research Center, Seattle, WA University of Washington School of Medicine, Seattle, WA
Author Manuscript
Abstract Male survivors of childhood cancer will spend their entire adult lives with the late effects of treatment on their sexual health. As the article in this issue by Haavisto and colleagues makes clear, the sexual difficulties in these survivors, who are most often treated for hematologic malignancies such as acute lymphoblastic leukemia, are different from men treated for prostate or testicular cancer and their sexual function treatments must be adapted to fit those needs.
Author Manuscript Author Manuscript
Survivors of childhood cancer will spend their entire adult lives with the late effects of treatment on their sexual health. Although it tops the list of unmet needs in a survey of leukemia and lymphoma survivors, sexuality in these young male survivors has not received the same attention as for female or older male cancer survivors.1 Reasons for insufficient research and lack of clinical guidelines addressing the full spectrum of sexuality needs for young male survivors include and extend beyond men historically being less likely to express their concerns and the focus for male survivors on erectile dysfunction.2 Lost in most tested treatment approaches that focus on testosterone supplementation or erectile dysfunction treatments are the complex dimensions of male sexual response. When male sexual function is studied, a large proportion of the research has focused on testicular or prostate cancer survivors since these groups have such clear gonadal impacts from their cancer treatment.3–6 A smaller set of newer studies addresses colorectal cancer survivors.7, 8 However, as the valuable article by Haavisto and colleagues points out,9 alkylating agents, particularly cyclophosphamide, along with gonadal and/or cranial irradiation or intrathecal chemotherapy have unmistakable impacts on sexual function and hormones well beyond testosterone in men. While cyclophosphamide is not routinely used for prostate or nonmetastatic colorectal cancers, it is a mainstay of treatment for the most common malignancy of childhood, acute lymphoblastic leukemia (ALL), and for other leukemias and lymphomas, as well as hematopoietic cell transplantation, which has similar sexual function impacts.10, 11
Corresponding author: Karen Syrjala, PhD, Fred Hutchinson Cancer Research Center, 1100 Fairview Ave N, D5-220, Seattle, WA 98109-1024, phone 206-667-4579, fax 206-667-4356, [email protected]. Conflict of interest disclosures: None
Syrjala
Page 2
Author Manuscript
Increased attention is being paid broadly to the social and psychosexual needs of adolescent and young adult (AYA) cancer survivors.1, 12–14 Nonetheless, far more research has examined young adult female sexual function after treatment.15
Author Manuscript Author Manuscript
This new research by Haavisto and colleagues will hopefully shift some focus to the understudied needs of these young male survivors.9 It is worth highlighting what is not amiss in these young men. They were as interested in sex as the controls, they were as likely to engage in sexual fantasy and masturbation, and they were able to get full erections. Difficulties were found in maintaining erections throughout intercourse, frequency of engaging in sexual behaviors, sexual relationships, and orgasm intensity, duration and ejaculation volume. In examining factors associated with sexual dysfunction, testicular irradiation, testicular size and FSH did impact some dimensions of sexual function, but older age (30’s versus 20’s), single relationship status and depression were the strongest risk factors associated with sexual dysfunction. Interestingly, testosterone level and use of hormone supplementation were not associated with dysfunction. These findings differ from other male cancer survivors in that erectile function and sexual performance were not the focus of deficits. At the same time, findings were consistent with other research in that young male survivors reported relationship and sexual partner communication issues and were less likely to be married, but were as likely to engage in sexual fantasies and masturbation, while survivors in their 30’s had more problems than those in their early 20’s, depression was associated with sexual problems, and, with some variation in this result, that sexual interest was not impaired.16–18 The variability in sexual interest findings may be a function of assessment methods; sometimes interest and sexual desire have not been clearly distinguished. As the figure in their article makes visible, sexual function in these male childhood cancer survivors not only was poorer in their early 20’s but was even worse for those men assessed in their 30’s, raising the possibility that these male survivors were experiencing accelerated aging in sexual function. An alternative explanation is that the men treated 30 years ago received higher dose treatment exposures than the men treated 20 years ago. Clearly longitudinal research is needed to define how sexual function progresses over maturation from childhood through adulthood, along with further risk modeling to improve our knowledge of treatments and biopsychosocial factors that increase the likelihood of sexual dysfunction, and, most importantly, clinical trials to demonstrate methods that address the spectrum of psychosexual needs evident in the article by Haavisto and colleagues and other investigators.
Author Manuscript
Gaps in Assessment and Treatment Models Applicable to Young Men Treated for Leukemia or Lymphoma While the Haavisto and colleagues paper fills some important gaps in our evidence base,9 it also highlights areas that need further examination. We cannot wait longer to develop treatment models that can be offered to these young men during survivorship care in oncology and primary care settings. Areas needing investigation include: 1) survivors’ ability to establish sustained intimate relationships which may include communication
Cancer. Author manuscript; available in PMC 2017 July 15.
Syrjala
Page 3
Author Manuscript Author Manuscript
training for those with or without a partner, 2) the biologic sources of sexual difficulty for young males that include testicular size and erectile capacity but also gonadal and libido impacts of hypothalamic and pituitary endocrine levels, 3) longitudinal data on changes with maturation and aging that may differ from non-cancer survivor males, 4) use of assessments of sexual response that include all phases of the response cycle and relationships, integrated with psychosocial and other role functioning, 5) improved understanding of optimal time points for intervention with approaches adapted to developmental needs of adolescents and young men, and 6) better delineation of treatment models that are effective for specific deficits or individuals, including models that recognize same-sex practices which are largely unrecognized in research. Evidence supports that for men, including survivors of testicular cancer, long-term relationships predating diagnosis are protective for sexual function.6, 17, 19 Unfortunately this protection is not an option for males diagnosed as children and a consequence may be found in their decreased likelihood of ever finding those long-term supportive relationships. The findings from Haavisto and colleagues, along with other published research, underscores the importance of lifelong screening for hormonal deficiencies and sexual function. It is clear that there is no point of plateau in sexual late effects and men may remain vulnerable to decline in sexual responses at an earlier age than observed in men not treated for cancer at a young age. Interactions between pituitary and gonadal dysfunction, social deficits and isolation and their impact on physical fitness and quality of life are individual and may shift within relatively brief time frames.
Author Manuscript
Measures appropriate to young adult men are continually noted as a problem in articles on this topic. Clearly we need better standardized measures to know where problems related to cancer treatment exist and which interventions are effectively treating which problems. Treatments must be adapted specifically for this population and address their relationship needs including communication training, their mental health, and incorporate evaluation and treatment when indicated with hormone supplementation and other biologic or physical treatments. Although phosphodiesterase type 5 (PDE5) inhibitors are considered a standard of care for some male survivors, the Haavisto and colleagues’ study results for young ALL survivors make it clear that PDE5 inhibitors are not a sufficient solution. To my knowledge they have not been tested in a clinical trial for ALL survivors. Indeed, it appears that to date no evidence based treatments have been published that specifically address the needs of this most prevalent group of childhood cancer survivors.
Author Manuscript
During childhood and adolescence, when sexual identity is not fully formed and the focus is on curing cancer, discussion of fertility outcomes may be addressed but sexuality is rarely mentioned. Questions of when and where is the right time, place, useful messages to convey as a child develops through puberty into adulthood, methods for assessment, and treatments are all thus far largely unanswered for young adult male survivors of childhood cancers.
Cancer. Author manuscript; available in PMC 2017 July 15.
Syrjala
Page 4
Author Manuscript
Bridging Gaps to Meet Evaluation and Treatment Needs
Author Manuscript
Evidence for effective treatment models for young adult male survivors’ sexuality experiences remains rare. However, some excellent clinical resources are available through online and published references, and Table 1 lists an abbreviated set of evaluation and treatment points to consider. Extended information on clinical evaluation is available for providers working with young adult survivors.20, 21 These writers make a point that adolescent and young adult men need clinical evaluations in private, without parents who often accompany many to their survivorship visits. However, the evidence is equally clear that a sexual partner should be included if the survivor is in a relationship since couple’s communication is fundamental to sexual satisfaction and a healthy sex life whether or not functional performance includes residual impacts of cancer treatment. This partner support is an important factor in whether offered treatment for men will be accepted or ignored.2 While men do have PDE-5 inhibitors available as a widely prescribed treatment for erectile dysfunction, other treatments tend to be infrequently used even when offered, and are less than satisfactory for many.22 It is important to note that for men treated for hematologic malignancies, erectile dysfunction may not be the primary problem, and therefore PDE-5 inhibitors may not be effective, though data for this population is lacking. Meanwhile, for women more is known about their difficulties with vaginal dryness, dyspareunia, menopausal symptoms and lack of desire. More treatments are accessible for women, with greater indications of success when used, from vaginal moisturizers and lubricants to vibrators and dilators, and including intimacy and communication interventions.22 Routine gynecology exams also provide an ongoing opportunity to monitor and discuss symptoms, an option not available for men.
Author Manuscript
Not only do we need rigorous testing of sexuality treatment models for men, but we are lacking models that are adapted to the specific issues of childhood cancer survivors with their unique relationship and communication styles. Improved training is needed for tertiary cancer centers with survivorship programs that may be more likely to have the resources to develop these skills. However, training and outreach needs to extend to primary care where most young adult men who are cancer survivors are receiving a majority of their health care. Beyond this need for extending awareness and training, online approaches may offer both a compatible communication style for young men and would extend access to these interventions beyond cancer centers to where and when survivors need them.23
Author Manuscript
The evaluation and treatment of sexual dysfunction is a large challenge to add to an already stretched oncology and primary care workforce. While Table 1 provides some guidance, cancer centers and primary care providers would benefit from identifying a standard practice for screening male sexual function in cancer survivors beginning at puberty, followed by referral to providers who are trained and invested in treating these issues. At minimum, a standard brief screening, with established referral sources for full evaluation and treatment, is an essential component of providing care for these survivors and needs to be a routine component of provider education and cancer center follow-up for those seeing young male survivors.
Cancer. Author manuscript; available in PMC 2017 July 15.
Syrjala
Page 5
Author Manuscript
Conclusions
Author Manuscript
Young adult male survivors of childhood hematologic malignancies have sexuality needs that are strikingly different from older survivors of prostate cancer and even younger testicular cancer survivors. While young ALL survivors may have gonadotoxic effects that are associated with their risks for sexual dysfunction, erectile dysfunction is less often a primary difficulty. Rather they may have poorer orgasms, are less likely to have a sex partner and are less likely to have a sex life. Not surprisingly, these difficulties are more likely in young male survivors who are depressed or socially isolated. For childhood cancer survivors who have not been sexually active before cancer treatment, strategies for evaluation and treatment differ from those used with older survivors who are more likely to be in a stable sexual relationship and to have a reference point from which they evaluate their sexual health. Longitudinal research is sorely needed to develop risk models and define assessments that capture the dimensions of sexual development in these young men so that interventions can be targeted to their needs. Standardized screening tools are necessary along with improved training in screening together with methods for in depth evaluation and treatment of sexual function in young men so that these become a standard of care for male survivors. Finally, new treatment approaches are needed that address their hormonal and functional deficits along with integrating their self-image and relationship needs into their care.
Acknowledgments Funding support: National Cancer Institute R01 CA160684
References Author Manuscript Author Manuscript
1. Parry C, Lomax JB, Morningstar EA, Fairclough DL. Identification and correlates of unmet service needs in adult leukemia and lymphoma survivors after treatment. J Oncol Pract. 2012; 8:e135–141. [PubMed: 23277776] 2. Katz A, Dizon DS. Sexuality After Cancer: A Model for Male Survivors. J Sex Med. 2016; 13:70– 78. [PubMed: 26755089] 3. Chisholm KE, McCabe MP, Wootten AC, Abbott JA. Review: psychosocial interventions addressing sexual or relationship functioning in men with prostate cancer. J Sex Med. 2012; 9:1246–1260. [PubMed: 22458946] 4. Chung E, Brock G. Sexual rehabilitation and cancer survivorship: a state of art review of current literature and management strategies in male sexual dysfunction among prostate cancer survivors. J Sex Med. 2013; 10(Suppl 1):102–111. [PubMed: 23387915] 5. Dahl AA, Bremnes R, Dahl O, Klepp O, Wist E, Fossa SD. Is the sexual function compromised in long-term testicular cancer survivors? Eur Urol. 2007; 52:1438–1447. [PubMed: 17350159] 6. Jankowska M. Sexual functioning of testicular cancer survivors and their partners - A review of literature. Rep Pract Oncol Radiother. 2011; 17:54–62. [PubMed: 24376997] 7. Breukink SO, Donovan KA. Physical and psychological effects of treatment on sexual functioning in colorectal cancer survivors. J Sex Med. 2013; 10(Suppl 1):74–83. [PubMed: 23387913] 8. Den Oudsten BL, Traa MJ, Thong MS, et al. Higher prevalence of sexual dysfunction in colon and rectal cancer survivors compared with the normative population: a population-based study. Eur J Cancer. 2012; 48:3161–3170. [PubMed: 22608772] 9. Haavisto A, Markus H, Risto H, PV L-R, Kirsi J. Sexual function in male long-term survivors of childhood acute lymphoblastic leukemia. Cancer. 2016; 24
Cancer. Author manuscript; available in PMC 2017 July 15.
Syrjala
Page 6
Author Manuscript Author Manuscript Author Manuscript
10. Syrjala KL, Kurland BF, Abrams JR, Sanders JE, Heiman JR. Sexual function changes during the 5 years after high-dose treatment and hematopoietic cell transplantation for malignancy, with casematched controls at 5 years. Blood. 2008; 111:989–996. [PubMed: 17878404] 11. Yi JC, Syrjala KL. Sexuality after hematopoietic stem cell transplantation. Cancer. 2009; 15:57–64. 12. Yi, J.; Syrjala, K. Overview of cancer survivorship in adolescent and young adults. 2015. Available from URL: http://www.uptodate.com/contents/overview-of-cancer-survivorship-in-adolescent-andyoung-adults 13. Zebrack BJ, Foley S, Wittmann D, Leonard M. Sexual functioning in young adult survivors of childhood cancer. Psychooncology. 2010; 19:814–822. [PubMed: 19862693] 14. Zebrack B, Isaacson S. Psychosocial care of adolescent and young adult patients with cancer and survivors. Journal of Clinical Oncology. 2012; 30:1221–1226. [PubMed: 22412147] 15. Ford JS, Kawashima T, Whitton J, et al. Psychosexual functioning among adult female survivors of childhood cancer: a report from the childhood cancer survivor study. Journal of Clinical Oncology. 2014; 32:3126–3136. [PubMed: 25113763] 16. Arden-Close E, Eiser C, Pacey A. Sexual functioning in male survivors of lymphoma: a systematic review. J Sex Med. 2011; 8:1833–1841. [PubMed: 21324087] 17. Seidler ZE, Lawsin CR, Hoyt MA, Dobinson KA. Let’s talk about sex after cancer: exploring barriers and facilitators to sexual communication in male cancer survivors. Psychooncology. 2015 18. van Dijk EM, van Dulmen-den Broeder E, Kaspers GJ, van Dam EW, Braam KI, Huisman J. Psychosexual functioning of childhood cancer survivors. Psychooncology. 2008; 17:506–511. [PubMed: 17935145] 19. Ussher JM, Perz J, Gilbert E. Perceived causes and consequences of sexual changes after cancer for women and men: a mixed method study. BMC Cancer. 2015; 15:268. [PubMed: 25885443] 20. Aubin S, Perez S. The Clinician’s Toolbox: Assessing the Sexual Impacts of Cancer on Adolescents and Young Adults with Cancer (AYAC). Sex Med. 2015; 3:198–212. [PubMed: 26468383] 21. Althof SE, Parish SJ. Clinical interviewing techniques and sexuality questionnaires for male and female cancer patients. J Sex Med. 2013; 10(Suppl 1):35–42. [PubMed: 23387910] 22. Bober SL, Varela VS. Sexuality in adult cancer survivors: challenges and intervention. Journal of Clinical Oncology. 2012; 30:3712–3719. [Review]. [PubMed: 23008322] 23. Schover LR, Canada AL, Yuan Y, et al. A randomized trial of internet-based versus traditional sexual counseling for couples after localized prostate cancer treatment. Cancer. 2012; 118:500– 509. [PubMed: 21953578]
Author Manuscript Cancer. Author manuscript; available in PMC 2017 July 15.
Syrjala
Page 7
Table 1
Author Manuscript
Screening and treatment considerations when addressing sexual function in young adult male childhood cancer survivors treated for hematologic malignancies Areas to Assess and Treat
Specific Considerations
Assume sexual function is a concern beginning at puberty, even if no sexual partner
Address body image, masculinity self-image, relationship concerns, provide language for communicating with sexual partners
Ask about sexual interest as well as whether sexually active alone or with a partner
Young male survivors are less likely to have a sexual partner than young male non-cancer survivors but may be as likely to be sexually active
Ask about specific sexual response phases, sexual relationship, and psychosocial function
Include evaluation of: •
Sexual interest, desire, arousal (getting erections and keeping erections through intercourse and/or orgasm), orgasm qualities, masturbation, sexual behaviors engage in, any problems, overall sexual satisfaction
Author Manuscript
•
Sexual partner relationship and communication/support
•
Recognize that a survivor may be in a same-sex relationship
•
Depression and other psychological disruptions
•
Body image or sexual performance concern
•
Social network or isolation
Screen annually for new issues, even if none in the past
Sexual dysfunction may develop at an earlier age in younger male survivors (before age 40)
Screen endocrine function including hypothalamic, pituitary and gonadal
FSH, inhibin, and LH can be elevated or suppressed as well as testosterone and growth hormones
Physical exam is necessary
Reduced testicular size is an indicator of increased risk of dysfunction; some risks such as Leydig cell dysfunction or other tissue damage from treatment may not be visible
Treatments
Begin discussion of self-image and sexuality as a routine part of survivorship visits during adolescence:
Author Manuscript
•
Normalize concern about sexual health for male survivors
•
Acknowledge not all survivors have sexual problems
•
Provide information and evaluation even if not requested, though not if declined
•
If relevant, involve a sexual partner in evaluation and discussion of communication about intimacy and sexual practices
•
Know referral options for treatment needs beyond your skill level
•
Provide online resources as a way to make information accessible through a familiar modality
Author Manuscript Cancer. Author manuscript; available in PMC 2017 July 15.
Cancer. Author manuscript; available in PMC 2017 July 15. Published in final edited form as: Cancer. 2016 July 15; 122(14): 2134–2137. doi:10.1002/cncr.29988.
Filling the gaps in knowledge and treatments for sexual health in young adult male cancer survivors Karen L. Syrjala, PhD Clinical Research Division, Fred Hutchinson Cancer Research Center, Seattle, WA University of Washington School of Medicine, Seattle, WA
Author Manuscript
Abstract Male survivors of childhood cancer will spend their entire adult lives with the late effects of treatment on their sexual health. As the article in this issue by Haavisto and colleagues makes clear, the sexual difficulties in these survivors, who are most often treated for hematologic malignancies such as acute lymphoblastic leukemia, are different from men treated for prostate or testicular cancer and their sexual function treatments must be adapted to fit those needs.
Author Manuscript Author Manuscript
Survivors of childhood cancer will spend their entire adult lives with the late effects of treatment on their sexual health. Although it tops the list of unmet needs in a survey of leukemia and lymphoma survivors, sexuality in these young male survivors has not received the same attention as for female or older male cancer survivors.1 Reasons for insufficient research and lack of clinical guidelines addressing the full spectrum of sexuality needs for young male survivors include and extend beyond men historically being less likely to express their concerns and the focus for male survivors on erectile dysfunction.2 Lost in most tested treatment approaches that focus on testosterone supplementation or erectile dysfunction treatments are the complex dimensions of male sexual response. When male sexual function is studied, a large proportion of the research has focused on testicular or prostate cancer survivors since these groups have such clear gonadal impacts from their cancer treatment.3–6 A smaller set of newer studies addresses colorectal cancer survivors.7, 8 However, as the valuable article by Haavisto and colleagues points out,9 alkylating agents, particularly cyclophosphamide, along with gonadal and/or cranial irradiation or intrathecal chemotherapy have unmistakable impacts on sexual function and hormones well beyond testosterone in men. While cyclophosphamide is not routinely used for prostate or nonmetastatic colorectal cancers, it is a mainstay of treatment for the most common malignancy of childhood, acute lymphoblastic leukemia (ALL), and for other leukemias and lymphomas, as well as hematopoietic cell transplantation, which has similar sexual function impacts.10, 11
Corresponding author: Karen Syrjala, PhD, Fred Hutchinson Cancer Research Center, 1100 Fairview Ave N, D5-220, Seattle, WA 98109-1024, phone 206-667-4579, fax 206-667-4356, [email protected]. Conflict of interest disclosures: None
Syrjala
Page 2
Author Manuscript
Increased attention is being paid broadly to the social and psychosexual needs of adolescent and young adult (AYA) cancer survivors.1, 12–14 Nonetheless, far more research has examined young adult female sexual function after treatment.15
Author Manuscript Author Manuscript
This new research by Haavisto and colleagues will hopefully shift some focus to the understudied needs of these young male survivors.9 It is worth highlighting what is not amiss in these young men. They were as interested in sex as the controls, they were as likely to engage in sexual fantasy and masturbation, and they were able to get full erections. Difficulties were found in maintaining erections throughout intercourse, frequency of engaging in sexual behaviors, sexual relationships, and orgasm intensity, duration and ejaculation volume. In examining factors associated with sexual dysfunction, testicular irradiation, testicular size and FSH did impact some dimensions of sexual function, but older age (30’s versus 20’s), single relationship status and depression were the strongest risk factors associated with sexual dysfunction. Interestingly, testosterone level and use of hormone supplementation were not associated with dysfunction. These findings differ from other male cancer survivors in that erectile function and sexual performance were not the focus of deficits. At the same time, findings were consistent with other research in that young male survivors reported relationship and sexual partner communication issues and were less likely to be married, but were as likely to engage in sexual fantasies and masturbation, while survivors in their 30’s had more problems than those in their early 20’s, depression was associated with sexual problems, and, with some variation in this result, that sexual interest was not impaired.16–18 The variability in sexual interest findings may be a function of assessment methods; sometimes interest and sexual desire have not been clearly distinguished. As the figure in their article makes visible, sexual function in these male childhood cancer survivors not only was poorer in their early 20’s but was even worse for those men assessed in their 30’s, raising the possibility that these male survivors were experiencing accelerated aging in sexual function. An alternative explanation is that the men treated 30 years ago received higher dose treatment exposures than the men treated 20 years ago. Clearly longitudinal research is needed to define how sexual function progresses over maturation from childhood through adulthood, along with further risk modeling to improve our knowledge of treatments and biopsychosocial factors that increase the likelihood of sexual dysfunction, and, most importantly, clinical trials to demonstrate methods that address the spectrum of psychosexual needs evident in the article by Haavisto and colleagues and other investigators.
Author Manuscript
Gaps in Assessment and Treatment Models Applicable to Young Men Treated for Leukemia or Lymphoma While the Haavisto and colleagues paper fills some important gaps in our evidence base,9 it also highlights areas that need further examination. We cannot wait longer to develop treatment models that can be offered to these young men during survivorship care in oncology and primary care settings. Areas needing investigation include: 1) survivors’ ability to establish sustained intimate relationships which may include communication
Cancer. Author manuscript; available in PMC 2017 July 15.
Syrjala
Page 3
Author Manuscript Author Manuscript
training for those with or without a partner, 2) the biologic sources of sexual difficulty for young males that include testicular size and erectile capacity but also gonadal and libido impacts of hypothalamic and pituitary endocrine levels, 3) longitudinal data on changes with maturation and aging that may differ from non-cancer survivor males, 4) use of assessments of sexual response that include all phases of the response cycle and relationships, integrated with psychosocial and other role functioning, 5) improved understanding of optimal time points for intervention with approaches adapted to developmental needs of adolescents and young men, and 6) better delineation of treatment models that are effective for specific deficits or individuals, including models that recognize same-sex practices which are largely unrecognized in research. Evidence supports that for men, including survivors of testicular cancer, long-term relationships predating diagnosis are protective for sexual function.6, 17, 19 Unfortunately this protection is not an option for males diagnosed as children and a consequence may be found in their decreased likelihood of ever finding those long-term supportive relationships. The findings from Haavisto and colleagues, along with other published research, underscores the importance of lifelong screening for hormonal deficiencies and sexual function. It is clear that there is no point of plateau in sexual late effects and men may remain vulnerable to decline in sexual responses at an earlier age than observed in men not treated for cancer at a young age. Interactions between pituitary and gonadal dysfunction, social deficits and isolation and their impact on physical fitness and quality of life are individual and may shift within relatively brief time frames.
Author Manuscript
Measures appropriate to young adult men are continually noted as a problem in articles on this topic. Clearly we need better standardized measures to know where problems related to cancer treatment exist and which interventions are effectively treating which problems. Treatments must be adapted specifically for this population and address their relationship needs including communication training, their mental health, and incorporate evaluation and treatment when indicated with hormone supplementation and other biologic or physical treatments. Although phosphodiesterase type 5 (PDE5) inhibitors are considered a standard of care for some male survivors, the Haavisto and colleagues’ study results for young ALL survivors make it clear that PDE5 inhibitors are not a sufficient solution. To my knowledge they have not been tested in a clinical trial for ALL survivors. Indeed, it appears that to date no evidence based treatments have been published that specifically address the needs of this most prevalent group of childhood cancer survivors.
Author Manuscript
During childhood and adolescence, when sexual identity is not fully formed and the focus is on curing cancer, discussion of fertility outcomes may be addressed but sexuality is rarely mentioned. Questions of when and where is the right time, place, useful messages to convey as a child develops through puberty into adulthood, methods for assessment, and treatments are all thus far largely unanswered for young adult male survivors of childhood cancers.
Cancer. Author manuscript; available in PMC 2017 July 15.
Syrjala
Page 4
Author Manuscript
Bridging Gaps to Meet Evaluation and Treatment Needs
Author Manuscript
Evidence for effective treatment models for young adult male survivors’ sexuality experiences remains rare. However, some excellent clinical resources are available through online and published references, and Table 1 lists an abbreviated set of evaluation and treatment points to consider. Extended information on clinical evaluation is available for providers working with young adult survivors.20, 21 These writers make a point that adolescent and young adult men need clinical evaluations in private, without parents who often accompany many to their survivorship visits. However, the evidence is equally clear that a sexual partner should be included if the survivor is in a relationship since couple’s communication is fundamental to sexual satisfaction and a healthy sex life whether or not functional performance includes residual impacts of cancer treatment. This partner support is an important factor in whether offered treatment for men will be accepted or ignored.2 While men do have PDE-5 inhibitors available as a widely prescribed treatment for erectile dysfunction, other treatments tend to be infrequently used even when offered, and are less than satisfactory for many.22 It is important to note that for men treated for hematologic malignancies, erectile dysfunction may not be the primary problem, and therefore PDE-5 inhibitors may not be effective, though data for this population is lacking. Meanwhile, for women more is known about their difficulties with vaginal dryness, dyspareunia, menopausal symptoms and lack of desire. More treatments are accessible for women, with greater indications of success when used, from vaginal moisturizers and lubricants to vibrators and dilators, and including intimacy and communication interventions.22 Routine gynecology exams also provide an ongoing opportunity to monitor and discuss symptoms, an option not available for men.
Author Manuscript
Not only do we need rigorous testing of sexuality treatment models for men, but we are lacking models that are adapted to the specific issues of childhood cancer survivors with their unique relationship and communication styles. Improved training is needed for tertiary cancer centers with survivorship programs that may be more likely to have the resources to develop these skills. However, training and outreach needs to extend to primary care where most young adult men who are cancer survivors are receiving a majority of their health care. Beyond this need for extending awareness and training, online approaches may offer both a compatible communication style for young men and would extend access to these interventions beyond cancer centers to where and when survivors need them.23
Author Manuscript
The evaluation and treatment of sexual dysfunction is a large challenge to add to an already stretched oncology and primary care workforce. While Table 1 provides some guidance, cancer centers and primary care providers would benefit from identifying a standard practice for screening male sexual function in cancer survivors beginning at puberty, followed by referral to providers who are trained and invested in treating these issues. At minimum, a standard brief screening, with established referral sources for full evaluation and treatment, is an essential component of providing care for these survivors and needs to be a routine component of provider education and cancer center follow-up for those seeing young male survivors.
Cancer. Author manuscript; available in PMC 2017 July 15.
Syrjala
Page 5
Author Manuscript
Conclusions
Author Manuscript
Young adult male survivors of childhood hematologic malignancies have sexuality needs that are strikingly different from older survivors of prostate cancer and even younger testicular cancer survivors. While young ALL survivors may have gonadotoxic effects that are associated with their risks for sexual dysfunction, erectile dysfunction is less often a primary difficulty. Rather they may have poorer orgasms, are less likely to have a sex partner and are less likely to have a sex life. Not surprisingly, these difficulties are more likely in young male survivors who are depressed or socially isolated. For childhood cancer survivors who have not been sexually active before cancer treatment, strategies for evaluation and treatment differ from those used with older survivors who are more likely to be in a stable sexual relationship and to have a reference point from which they evaluate their sexual health. Longitudinal research is sorely needed to develop risk models and define assessments that capture the dimensions of sexual development in these young men so that interventions can be targeted to their needs. Standardized screening tools are necessary along with improved training in screening together with methods for in depth evaluation and treatment of sexual function in young men so that these become a standard of care for male survivors. Finally, new treatment approaches are needed that address their hormonal and functional deficits along with integrating their self-image and relationship needs into their care.
Acknowledgments Funding support: National Cancer Institute R01 CA160684
References Author Manuscript Author Manuscript
1. Parry C, Lomax JB, Morningstar EA, Fairclough DL. Identification and correlates of unmet service needs in adult leukemia and lymphoma survivors after treatment. J Oncol Pract. 2012; 8:e135–141. [PubMed: 23277776] 2. Katz A, Dizon DS. Sexuality After Cancer: A Model for Male Survivors. J Sex Med. 2016; 13:70– 78. [PubMed: 26755089] 3. Chisholm KE, McCabe MP, Wootten AC, Abbott JA. Review: psychosocial interventions addressing sexual or relationship functioning in men with prostate cancer. J Sex Med. 2012; 9:1246–1260. [PubMed: 22458946] 4. Chung E, Brock G. Sexual rehabilitation and cancer survivorship: a state of art review of current literature and management strategies in male sexual dysfunction among prostate cancer survivors. J Sex Med. 2013; 10(Suppl 1):102–111. [PubMed: 23387915] 5. Dahl AA, Bremnes R, Dahl O, Klepp O, Wist E, Fossa SD. Is the sexual function compromised in long-term testicular cancer survivors? Eur Urol. 2007; 52:1438–1447. [PubMed: 17350159] 6. Jankowska M. Sexual functioning of testicular cancer survivors and their partners - A review of literature. Rep Pract Oncol Radiother. 2011; 17:54–62. [PubMed: 24376997] 7. Breukink SO, Donovan KA. Physical and psychological effects of treatment on sexual functioning in colorectal cancer survivors. J Sex Med. 2013; 10(Suppl 1):74–83. [PubMed: 23387913] 8. Den Oudsten BL, Traa MJ, Thong MS, et al. Higher prevalence of sexual dysfunction in colon and rectal cancer survivors compared with the normative population: a population-based study. Eur J Cancer. 2012; 48:3161–3170. [PubMed: 22608772] 9. Haavisto A, Markus H, Risto H, PV L-R, Kirsi J. Sexual function in male long-term survivors of childhood acute lymphoblastic leukemia. Cancer. 2016; 24
Cancer. Author manuscript; available in PMC 2017 July 15.
Syrjala
Page 6
Author Manuscript Author Manuscript Author Manuscript
10. Syrjala KL, Kurland BF, Abrams JR, Sanders JE, Heiman JR. Sexual function changes during the 5 years after high-dose treatment and hematopoietic cell transplantation for malignancy, with casematched controls at 5 years. Blood. 2008; 111:989–996. [PubMed: 17878404] 11. Yi JC, Syrjala KL. Sexuality after hematopoietic stem cell transplantation. Cancer. 2009; 15:57–64. 12. Yi, J.; Syrjala, K. Overview of cancer survivorship in adolescent and young adults. 2015. Available from URL: http://www.uptodate.com/contents/overview-of-cancer-survivorship-in-adolescent-andyoung-adults 13. Zebrack BJ, Foley S, Wittmann D, Leonard M. Sexual functioning in young adult survivors of childhood cancer. Psychooncology. 2010; 19:814–822. [PubMed: 19862693] 14. Zebrack B, Isaacson S. Psychosocial care of adolescent and young adult patients with cancer and survivors. Journal of Clinical Oncology. 2012; 30:1221–1226. [PubMed: 22412147] 15. Ford JS, Kawashima T, Whitton J, et al. Psychosexual functioning among adult female survivors of childhood cancer: a report from the childhood cancer survivor study. Journal of Clinical Oncology. 2014; 32:3126–3136. [PubMed: 25113763] 16. Arden-Close E, Eiser C, Pacey A. Sexual functioning in male survivors of lymphoma: a systematic review. J Sex Med. 2011; 8:1833–1841. [PubMed: 21324087] 17. Seidler ZE, Lawsin CR, Hoyt MA, Dobinson KA. Let’s talk about sex after cancer: exploring barriers and facilitators to sexual communication in male cancer survivors. Psychooncology. 2015 18. van Dijk EM, van Dulmen-den Broeder E, Kaspers GJ, van Dam EW, Braam KI, Huisman J. Psychosexual functioning of childhood cancer survivors. Psychooncology. 2008; 17:506–511. [PubMed: 17935145] 19. Ussher JM, Perz J, Gilbert E. Perceived causes and consequences of sexual changes after cancer for women and men: a mixed method study. BMC Cancer. 2015; 15:268. [PubMed: 25885443] 20. Aubin S, Perez S. The Clinician’s Toolbox: Assessing the Sexual Impacts of Cancer on Adolescents and Young Adults with Cancer (AYAC). Sex Med. 2015; 3:198–212. [PubMed: 26468383] 21. Althof SE, Parish SJ. Clinical interviewing techniques and sexuality questionnaires for male and female cancer patients. J Sex Med. 2013; 10(Suppl 1):35–42. [PubMed: 23387910] 22. Bober SL, Varela VS. Sexuality in adult cancer survivors: challenges and intervention. Journal of Clinical Oncology. 2012; 30:3712–3719. [Review]. [PubMed: 23008322] 23. Schover LR, Canada AL, Yuan Y, et al. A randomized trial of internet-based versus traditional sexual counseling for couples after localized prostate cancer treatment. Cancer. 2012; 118:500– 509. [PubMed: 21953578]
Author Manuscript Cancer. Author manuscript; available in PMC 2017 July 15.
Syrjala
Page 7
Table 1
Author Manuscript
Screening and treatment considerations when addressing sexual function in young adult male childhood cancer survivors treated for hematologic malignancies Areas to Assess and Treat
Specific Considerations
Assume sexual function is a concern beginning at puberty, even if no sexual partner
Address body image, masculinity self-image, relationship concerns, provide language for communicating with sexual partners
Ask about sexual interest as well as whether sexually active alone or with a partner
Young male survivors are less likely to have a sexual partner than young male non-cancer survivors but may be as likely to be sexually active
Ask about specific sexual response phases, sexual relationship, and psychosocial function
Include evaluation of: •
Sexual interest, desire, arousal (getting erections and keeping erections through intercourse and/or orgasm), orgasm qualities, masturbation, sexual behaviors engage in, any problems, overall sexual satisfaction
Author Manuscript
•
Sexual partner relationship and communication/support
•
Recognize that a survivor may be in a same-sex relationship
•
Depression and other psychological disruptions
•
Body image or sexual performance concern
•
Social network or isolation
Screen annually for new issues, even if none in the past
Sexual dysfunction may develop at an earlier age in younger male survivors (before age 40)
Screen endocrine function including hypothalamic, pituitary and gonadal
FSH, inhibin, and LH can be elevated or suppressed as well as testosterone and growth hormones
Physical exam is necessary
Reduced testicular size is an indicator of increased risk of dysfunction; some risks such as Leydig cell dysfunction or other tissue damage from treatment may not be visible
Treatments
Begin discussion of self-image and sexuality as a routine part of survivorship visits during adolescence:
Author Manuscript
•
Normalize concern about sexual health for male survivors
•
Acknowledge not all survivors have sexual problems
•
Provide information and evaluation even if not requested, though not if declined
•
If relevant, involve a sexual partner in evaluation and discussion of communication about intimacy and sexual practices
•
Know referral options for treatment needs beyond your skill level
•
Provide online resources as a way to make information accessible through a familiar modality
Author Manuscript Cancer. Author manuscript; available in PMC 2017 July 15.
