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Prostate cancer awareness survey to proud postcards Article in Sexual and Relationship Therapy · July 2016 DOI: 10.1080/14681994.2016.1200026
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Prostate cancer awareness survey to proud postcards Ben Heyworth, Andrew Gilliver, Sean Ralph, Paula Hewitt & Peter Mackereth To cite this article: Ben Heyworth, Andrew Gilliver, Sean Ralph, Paula Hewitt & Peter Mackereth (2016) Prostate cancer awareness survey to proud postcards, Sexual and Relationship Therapy, 31:4, 462-472, DOI: 10.1080/14681994.2016.1200026 To link to this article: https://doi.org/10.1080/14681994.2016.1200026
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SEXUAL AND RELATIONSHIP THERAPY, 2016 VOL. 31, NO. 4, 462 472 http://dx.doi.org/10.1080/14681994.2016.1200026
Prostate cancer awareness survey to proud postcards Ben Heywortha, Andrew Gilliverb, Sean Ralphc, Paula Hewittd and Peter Mackeretha a
The Christie NHS Foundation Trust, Manchester, United Kingdom of Great Britain and Northern Ireland; LGBT Foundation, Manchester, United Kingdom of Great Britain and Northern Ireland; cThe Clatterbridge Cancer Care NHS Foundation Trust, Bebington, United Kingdom of Great Britain and Northern Ireland; d Prostate Cancer UK, Manchester, United Kingdom of Great Britain and Northern Ireland b
ABSTRACT
ARTICLE HISTORY
This paper describes the production and analysis of an informal prostate cancer awareness survey (n D 217), which was conducted in Manchester, UK, in August 2014 by the LGBT (Lesbian, Gay, Bisexual, Transgender) Cancer Support Alliance. Data collected from the survey along with anecdotal evidence collected by the researchers was used to produce a series of four “Prostate Cancer Awareness” postcards targeted at gay and bisexual men and trans women, and which could be displayed in public spaces likely to be accessed by these groups. The aim was to raise awareness of key issues picked up by the survey amongst the local population and highlight particular issues which may encourage men or transsexual women to think about the risk of developing prostate cancer, and what their relationship with sexual partners, carers and health care professionals might be following diagnosis and treatment. The postcards were titled: (1) We are struggling to have sex after treatment (2) Are gay men more likely to develop prostate cancer than straight men? (3) Tips for the guys…looking after your G-spot (4) My doctor always asks me about my wife.
Received 12 June 2015 Accepted 23 April 2016 KEYWORDS
Prostate; cancer; gay; bisexual; postcards; awareness
Introduction Prostate cancer is the most common male cancer in the UK. According to the Department of Health (2013), one in eight will develop the disease and some 250,000 men are currently living with a diagnosis. Prostate Cancer UK has estimated the numbers to be as high as 330,000. By 2030, it is predicted to become the UK’s most prevalent of all cancers (Filiault, Drummond, & Smith, 2008). However, there is limited evidence in the literature pertaining to the experience of gay and bisexual men and prostate cancer, and not all of it is robust. Although there is no current evidence that suggests gay and bisexual men are more likely to develop prostate cancer (Department of Health, 2013), the risk of men in a same sex couple encountering prostate cancer in one or the other sexual partner is increased as both partners will have a prostate gland. Therefore, men within same sex relationships
CONTACT Ben Heyworth
ben.heyworth@christie.nhs.uk
© 2016 College of Sexual and Relationship Therapists
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will be disproportionally affected by prostate cancer within their lifetime as they may also find themselves caring for a partner with the disease. Evidence from Stonewall’s “Gay and Bisexual Men’s Health Survey” suggests that twothirds (68%) of gay and bisexual men over 50 have never had a conversation with a health care professional about prostate cancer (Glickman, Emirzian, & Queen, 2013). This remains an area for further research. However, Katz (2011) and Filiault et al. (2008) suggest that gay and bisexual men with prostate cancer may be reluctant to disclose their sexuality to professionals for fear of negative reactions, perceived or actual discrimination, or that following disclosure, this information may be ignored. It could be postulated that these issues may be more acute for an older generation who have lived through periods of acute minority stress due to lack of equality legislation and social exclusion from a heteronormative society. This is compounded by the fact that single gay men may not only lack the support of a partner, but also other family support systems.(Macmillan Cancer Support, 2014) All men have (and trans women retain) a prostate gland. This organ is situated just beneath the bladder and is considered to be the male G-spot (Mistry, Parkin, Ahmad, & Sasieni, 2011). For men who have sex with men, this organ may therefore have special significance as an area of sexual pleasure (Department of Health, 2013). To what extent gay and bisexual men understand the function and indeed the exact location of the prostate gland is unknown. However, the lack of relative discourse around safe practice during anal sex in relation to the prostate could suggest that this knowledge is limited, and anecdotal evidence collated by the LGBT (Lesbian, Gay, Bisexual, Transgender) Cancer Support Alliance suggested that some men may fear that anal sex could cause or increase the likelihood of developing prostate cancer. We have uncovered no evidence to support this concern. Where gay and bisexual men are affected by the consequences of treatment, this can often include significant bowel problems including diarrhoea, urgency and incontinence, fibrosis, and damage to the blood supply making the bowel tissue and small blood vessels in it more fragile. Symptoms can include bleeding from the lower rectum, passing mucus, cramps or spasms, tenesmus or passing a lot of wind (Prostate Cancer UK & Stonewall, 2013). Other issues may include loss of ejaculate/reduced volume of ejaculate, and mild to moderate erectile dysfunction, where erections are possible but less firm, making anal penetration more difficult. Anal penetration requires a firmer erection than vaginal penetration, making penetration more challenging for individuals where mild erectile dysfunction is a consequence of treatment for a pelvic tumour. Where gay or bisexual men are not in a monogamous relationship but prefer instead to have successive or multiple partners (their preferred sexual lifestyle), the impact of androgen deprivation therapy (ADT) can be significant. Used to reduce the growth of prostate tumours, ADT can also have a significant impact on masculine body shape, weight gain, and reduce desire. Indeed, ADT has been described by one patient as a form of “chemical castration” (The Christie NHS Foundation trust, 2015). This can be a significant additional challenge for individuals who find conversations about sex and sexuality with their health care team already compromised due to real or perceived discrimination, anxiety, and a potential lack of empathy. The renewal of sexual activity can help to promote recovery for some gay and bisexual men; however, some studies have suggested that gay and bisexual men have lower levels
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of sexual functioning than heterosexual men after prostate surgery and during hormone therapy treatment (Latini, Hart, Coon, & Knight, 2009). In a study conducted by Lee et al. (2015), some men who have sex with men reported concerns that the inability to get an erection could also lead to giving up on the possibility that they might recover from such changes, and subsequently have no resumption in sexual activity whatsoever, citing a lack of conďŹ dence and an unwillingness to try and fail. However, all participants reported the ability to achieve orgasm after treatment even without arousal provided they had prolonged sexual stimulation. This activity was described as “interestingâ€?, “superďŹ cialâ€?, or “incompleteâ€? suggesting it was not entirely satisfactory. The paper suggests that this may be a particular problem for men who may wish to have sex with multiple partners, particularly if the partner interprets lack of arousal as lack of desire or interest. In September 2012, Prostate Cancer UK (Department of Health, 2013) held a one-day workshop in London to explore the needs of gay and bisexual men dealing with cancer. The workshop was the ďŹ rst of its kind in the UK and brought together health professionals, researchers, expert organisations, as well as gay and bisexual men with prostate cancer. Discussions held on the day recognised the need for more work to develop targeted information and support services for gay and bisexual men and this was a key driver for the work undertaken by the LGBT Cancer Support Alliance as described below. Department of Health (2013) found that lesbian, gay, and bisexual patients had a much poorer overall cancer experience compared to heterosexual patients and were less likely to answer positively to the following statements:
Patient told sensitively that they had cancer. Doctors never talked in front of patient as if they were not there. Patient always treated with respect and dignity by hospital staff. Patient never felt treated as a set of cancer symptoms rather than a whole person. Patient was given information about support of self-help groups (Stonewall, 2013).
The prostate cancer survey
August 2014
In 2014, the LGBT Cancer Support Alliance was formed by a group of professionals working for the National Health Service (NHS) and third sector organisations. The purpose of the group is to take forward collaborative health and well-being projects around cancer and related lifestyle issues relevant to the LGBT community to ensure that the LGBT voice is heard by the cancer community and to inuence strategy and service delivery within organisations, promoting consistency of approach across localities, and to improve the provision of LGBT-speciďŹ c patient information. The group’s ďŹ rst project was to conduct a prostate cancer awareness survey at Manchester PRIDE 2014, the results of which would inform the development of new patient information (the postcards).
Methodology Based on discussions with members of the LGBT Cancer Support Alliance, including patient and carer representatives, a survey was devised which would informally gather
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data about prostate cancer, sexuality, and related concerns from the LGBT community and their supporters at Manchester PRIDE. The development and survey activity was managed and approved by consensus from members of the Alliance. Due to the nature of the group’s work, it was agreed that gay and bisexual men greater than 45 years old would be preferentially targeted during the data collection phase, although researchers used their best judgement when approaching individuals in the field. A copy of the survey can be obtained from the lead author. The survey was completed anonymously by individuals attending the launch event for “An Introduction to Male Cancers for Gay and Bisexual Men” at the LGBT Foundation by way of a pilot, and members of the general public attending Manchester PRIDE 2014 a few weeks later. Eight members of the LGBT Cancer Support Alliance volunteered to conduct the survey on Saturday 30th of August at Manchester PRIDE and approximately 40 surveys were also completed during the pilot.
Data analysis and survey findings The data collected from the survey was entered into Microsoft Excel. Given the wide range of variables, no statistical analysis was performed. Descriptive statistics are reported in Tables 1 and 2. The majority of the 217 respondents were White British (n D 180) and homosexual (n D 153), mostly ranging in age from 20 to 60 years old with the highest number in the 41 50 age bracket. Only 19 respondents were over 60 years of age. Although 68% of gay and bisexual men over 50 have never discussed prostate cancer with a health care professional (Glickman et al., 2013), the results from this prostate cancer awareness survey in Table 2 indicate that prostate and prostate cancer awareness is Table 1. Demographic characteristics. Ethnicity Ethnic group: Asian or Asian British Ethnic group: Black or Black British Ethnic group: Mixed Black and White Ethnic group: White Total Gender Male Female Transgender Do not wish to disclose Total Age 0 40 41 50 51 60 61C Not disclosed Total Sexual orientation Homosexual Heterosexual Bisexual Do not wish to disclose Total
6 5 16 191 217 183 32 1 1 217 94 67 35 19 2 217 153 49 10 5 217
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Table 2. Prostate cancer survey data. Where is the prostate gland? Brain Above kidneys Under bladder Total Which statement(s) is/are true? Most common cancer in men More at risk if Afro-Caribbean descent Prostate cancer always causes symptoms All of the above Total Are gay men are more likely to get HIV than prostate cancer? True False Don’t know Total Prostate cancer only affects men over 65 True False Total Able to talk frankly to health care professional about sex and sexuality Yes No No response Total Receiving anal sex can cause prostate cancer True False Don’t know Total Which is/are the symptom(s) of prostate cancer? Difficulty urinating Getting up more often at night to urinate Blood in the semen All of the above Total What does the prostate gland do? Adds fluid to semen Produces enzyme enabling sperm to swim Male G-spot Urine runs through it when leaving the bladder All of the above Don’t know Total
1 3 213 217 144 35 18 44 217 28 187 2 217 7 210 217 118 68 31 217 29 185 3 217 29 33 9 166 237 (not mutually exclusive) 42 27 29 49 90 12 249 (not mutually exclusive)
generally good amongst gay and bisexual men. Ninety-eight per cent of respondents correctly identified the position of the prostate being below the bladder; 66% knew that prostate cancer is the most common cancer in men; 76% correctly identified all of the symptoms listed as symptoms of prostate cancer; 86% answered false to the statement “gay men are more likely to get HIV than prostate cancer”; and 55% of respondents knew about the prostate being the male G-spot. Only 16% of respondents identified Afro-Caribbean men as being more at risk of prostate cancer, although only 2% of respondents identified as being from African or Caribbean descent. Thirteen per cent of respondents incorrectly thought that anal sex caused prostate cancer. Fifty-four per cent said that they were able to talk frankly to health professionals about sex and sexuality.
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Other results from the survey also detailed in Table 2 reinforced many of the messages expounded by current literature although 54% did state that they were able to talk frankly about sex and sexuality to professionals, a proportion of men have never discussed prostate cancer. The survey did not differentiate between those individuals who had not discussed sex and sexuality (perhaps because it was felt to be irrelevant during the course of the consultation), with those who felt they could not, and this distinction may warrant further study. Some individuals approached during the survey were willing to disclose information informally about episodes of discrimination they had encountered while dealing with health care professionals. SpeciďŹ c details on these episodes were not recorded, but individuals were advised to speak to the appropriate NHS Patient Advice and Liaison Service. Clearly, worries around real or perceived discrimination continue to play a signiďŹ cant role in whether individuals choose to disclose their sexuality to health care professionals, and if they feel comfortable discussing issues which may be intimate, challenging, or directly related to sex and sexuality.
From survey results to proud postcards Using the data from the survey and the available evidence base, it was agreed that four postcards should be produced, addressing four key areas:
Survivorship and speciďŹ cally issues around sexual function following treatment The prevalence of prostate cancer in gay and bisexual men Taking care of your prostate reducing cancer risk Communication
Each postcard was drafted with a few pieces of clinical advice linked to each theme supported by data pulled from the survey. The postcard around survivorship contained clinical advice only. The postcards were then branded and each card presented with an appropriate stock photograph designed to reect the wide diversity and ethnicity of gay and bisexual men. On the front of each card, the group agreed to reect each of the four themes in the form of a quote, in the hope that it might reassure individuals that the issues discussed were reected by the experiences of “realâ€? people, hence: “We are struggling to have sex after treatmentâ€? (Survivorship Figure 1) “Are gay men more likely to develop prostate cancer than straight men?â€? (Prevelance Figure 2) “Tips for the Guys‌looking after your G-Spotâ€? (Taking care and reducing risk of cancer Figure 3) “My doctor always asks me about my wifeâ€? (Communication Figure 4)
Distribution The postcards were distributed to pubs, clubs, Macmillan Information Centres, sexual health centres, free standing information stands at libraries and local hospitals and GP
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Figure 1. Survivorship.
Figure 2. Prevalence.
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Figure 3. Taking care and reducing risk of cancer.
Figure 4. Communication.
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practices, and at health and well-being events organised by a variety of cancer service providers.
Discussion and conclusion Conducting an informal prostate cancer awareness survey at an LGBT Pride event was an effective method to provide targeted health information for the community and also raise awareness of cancer during the data collection process. It is hoped that the visibility of these postcards across Greater Manchester will encourage gay and bisexual patients to have conversations with health care professionals around sex and sexuality following a diagnosis, and indeed encourage health care professionals to consider the specific needs of gay and bisexual men in this area. Future work may involve promoting wider research into this patient group, strengthening the evidence base. A greater insight is needed into the experience of gay and bisexual men with prostate cancer across all sections of the cancer pathway. For health care professionals, the visibility of these postcards might improve their confidence in exploring issues around sexual relationships with men who have sex with men in the context of cancer rehabilitation. A survey conducted by Richardson, Hopwood, Cawthorn, Swindell, and Calvert (2006) suggested that 46% of nurses do not respond to the sexual needs of patients and only one-third of nurses gave out practical information. Sexual function concerns were rarely raised in patient/clinician discussions and, although this staff survey was not specifically focused on prostate cancer or on gay and bisexual men, this may suggest a reluctance to discuss the sexual consequences of cancer and its treatment within the Trust. How these figures may differ if we explored specific communication patterns between staff and gay or bisexual men affected by cancer remains an area for future research. How these figures may differ for gay and bisexual men remains an area for further research. Are professionals even more uncomfortable discussing the mechanics of sexual activity where such activity deviates from perceived heterosexual “normality”? Is there an unwillingness to discuss sexual behaviour which until the late 1960s was considered illegal in the UK, and is still stigmatised by some sections of society today? Or is this because professionals lack the appropriate language to facilitate this discussion adequately, and which might suggest deficiencies in education and training provision in sexual health which stem from levels of “discomfort” or lack of acknowledgement/equivalence around homosexual behaviour? Either way, the identification and engagement of gay and bisexual patient and carer advocates remain the most powerful drivers for change across the health care system, and the chosen methodology to deliver the prostate cancer postcards (i.e. patient representation on the project board) underlines the importance of embedding the patient’s voice into new information resources to help to create an environment where change is possible. To this end, the LGBT Cancer Support Alliance will continue to distribute the postcards around the region and review their content and design on a biannual basis. The LGBT Cancer Support Alliance, in partnership with Macmillan Cancer Support, The Christie NHS Foundation Trust and NHS England, has also pledged to support a program of work looking at the experience of LGBT patients regardless of cancer type across Greater Manchester and will endeavour to support ongoing research uncovering the particular needs
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of this community. The Alliance also hopes to use this improved evidence base to influence providers at a strategic level, where commissioners and managers will also be encouraged to reflect on the particular needs of the LGBT community.
Disclosure statement No potential conflict of interest was reported by the authors.
Notes on contributors Ben Heyworth is the Living with and Beyond Network Manager based at The Christie Hospital in Manchester, United Kingdom of Great Britain and Northern Ireland and the LGBT Strategy Manager and chair of the LGBT Cancer Support Alliance. He also chairs the organising committee for the Changing Prospects for Cancer Conference and is a trustee on the board of Relate GMS. His principle interests are in cancer survivorship, health inequalities affecting the LGBT community, mental health and the arts. Andrew Gilliver is the community involvement manager for LGBT Foundation based in Manchester, United Kingdom of Great Britain and Northern Ireland. His main role involves connecting with LGBT members of the community around issues relating to health, wellbeing and social care. He also liaises with professional health and care organisations to ensure they are understanding of the specific needs of LGBT people. Andrew has been a key member of the LGBT Cancer Support Alliance since its inception. Sean Ralph works as a therapeutic radiographer at The Clatterbridge Cancer Centre NHS Foundation Trust on Merseyside, United Kingdom of Great Britain and Northern Ireland. For the past year, he has also been on a clinical academic research internship with the National Institute for Health Research during which time he has undertaken a qualitative research study exploring the views and experiences of health professionals on discussing sexual orientation and sexuality with lesbian, gay and bisexual patients in an oncology setting. He has been involved in the work of the LGBT Cancer Support Alliance since its inception. Paula Hewitt is the senior officer for Change Delivery for Prostate Cancer UK, United Kingdom of Great Britain and Northern Ireland. Prior to that she commissioned services for men with prostate cancer, and as a part of that role she also worked closely with members of the LGBT Cancer Support Alliance representing Prostate Cancer UK. She is interested in “seldom heard” groups, particularly LGBT. Dr Peter Mackereth is the recently retired clinical lead for Complementary Health & Wellbeing Services at The Christie, United Kingdom of Great Britain and Northern Ireland, managing therapists and health advisors. Their therapy team provide massage, reflexology, acupuncture, hypnotherapy and relaxation techniques supporting patients whilst inpatients, during medical procedures and end of life. Peter has an extensive portfolio of research and run training programme/courses to disseminate best practice, and has been involved in the work of the LGBT Cancer Support Alliance since its inception.
References Department of Health. (2013). Cancer patient experience survey (CPES) 2013. Retrieved from http:// www.quality-health.co.uk/resources/surveys/national-cancer-experience-survey/2013-
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The Christie NHS Foundation Trust. (2015). Men, sex and sexuality: A guide for patients [online film]. (Published by The Christie NHS Foundation Trust). Retrieved from www.christie.nhs.uk/ withandbeyond Filiault, S.M., Drummond, M.J.N., & Smith, J.A. (2008). Gay men and prostate cancer: Voicing the concerns of a hidden population. Journal of Men’s Health, 5, 327 332. doi:10.1016/j. jomh.2008.08.005 Glickman, C., Emirzian, A., & Queen, C. (2013). The ultimate guide to prostate pleasure: Erotic exploration for men and their partners (eBook: Charlie Glickman, Aislinn Emirzian, Carol Queen, Debby Herbenick: Amazon.co.uk: Kindle Store). Retrieved from http://www.amazon.co. uk/The-Ultimate-Guide-Prostate-Pleasure-ebook/dp/B00APDAU0M Katz, A. (2011). Gay and Lesbian patients with cancer. Cancer and Sexual Health, 397 403. doi:10.1007/978-1-60761-916-1_26 Latini, D.M., Hart, S.L., Coon, D.W., & Knight, S.J. (2009). Sexual rehabilitation after localized prostate cancer. The Cancer Journal, 15, 34 40. doi:10.1097/ppo.0b013e31819765ef Lee, T.K., Handy, A.B., Kwan, W., Oliffe, J.L., Brotto, L.A., Wassersug, R.J., & Dowsett, W. (2015). Impact of prostate cancer treatment on the sexual quality of life for men-who-have-sex-withmen. International Journal for Sexual Medicine, 12, 2378 2386. doi:10.1111/jsm.13030 Macmillan Cancer Support. (2014). Managing the late effects of pelvic radiotherapy in men (2nd ed., pp. 28 29). London: Macmillan Cancer Support. Mistry, M., Parkin, D.M., Ahmad, A.S., & Sasieni, P. (2011). Cancer incidence in the United Kingdom: Projections to the year 2030. British Journal of Cancer, 105, 1795 1803. doi:10.1038/ bjc.2011.430 Prostate Cancer UK & Stonewall. (2013). Exploring the needs of gay and bisexual men dealing with prostate cancer. Retrieved from http://prostatecanceruk.org/about-us/news-and-views/2013/2/ stonewall-meeting-the-needs-of-gay-and-bisexual-men Richardson, L., Hopwood, P., Cawthorn, A., Swindell, R., & Calvert, M. (2006). Audit results: Is sexuality still the uninvited guest in the nurse-patient relationship? Paper presented at The Christie NHS Foundation Trust (On behalf of: Greater Manchester and Cheshire Cancer Network, Cancer and Sexuality Group). Stonewall. (2013). Stonewall’s gay and bisexual men’s health survey. Survey of 6,861 gay and bisexual men across Britain. 2012. Retrieved from http://www.stonewall.org.uk/
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