4.1 Gay and bisexual men, and men who have sex with men

What changes when the patient is a gay or bisexual man

In Module 3 you learned to build a sexual rehabilitation plan with a couple: returning to sexual activity, treating erectile difficulties, and supporting the partner's own needs. You worked through that plan with Andrew and Jeff as well as with Doug and Jean. For gay and bisexual men, seven parts of it change:

What changes in sexual function

What changes around the patient

The lesson works through the first six one at a time, in the order above. Gaps in care is the exception: it is covered first, under 'Why this matters, and how to ask' and 'Creating an inclusive care environment'.

Guideline statement 25 offers two recommendations¹. Give these patients and their partners information relevant to their sexual experience and guide them towards support that suits them.

The guidelines name gay men, bisexual men and men who have sex with men separately. The last group describes what a man does rather than how he identifies, and it includes men who would not call themselves gay or bisexual.

4.1 Gay and bisexual men, and men who have sex with men

Why this matters, and how to ask

Many LGBTQIA+ people have had reason to expect discrimination. In an Australian study of 430 LGBTQI people with cancer and 132 carers, 84% had experienced discrimination in their lives because of being LGBTQI, and a third had experienced it in cancer care³.

Most sexual health care assumes a heterosexual patient, and that can alienate people with different sexual identities and preferences. Gay and bisexual men have historically experienced discrimination in health care, and many do not feel comfortable disclosing their sexual orientation. Where that happens, the support that would have been relevant is not offered⁴. Many gay and bisexual men report that no clinician ever discussed anal sex, their sexual practices or rehabilitation suited to them². When LGBTQIA+ people can discuss their sexuality openly, their outcomes are better.

You can only adjust the plan for a gay or bisexual man if you know he has sex with men. Ask every patient two questions:

ASK

• Is sex and sexuality important to you?
• What are your sexual preferences?

The second question lets a patient tell you without having to come out, and it includes anyone whose preferences differ from what you might assume.

4.1 Gay and bisexual men, and men who have sex with men

Creating an inclusive care environment

The guidelines recommend making the clinic welcoming before any question is asked⁵. It takes the confrontation out of asking about sexuality.

• Show allyship. Share your pronouns, wear a rainbow lanyard. It can seem tokenistic, but it can help create an inclusive environment with LGBTQIA+ patients.
• Normalise diverse relationships. Include male couples in clinic brochures, and inclusive art on the walls.
• Use the intake form. Ask every patient about their gender, sexual orientation, culture and ethnicity. A patient who can disclose on a form does not have to repeat it to every clinician they see⁵.
• Take accountability. You will sometimes get it wrong. Say so, and carry on with the appointment:

SAY

• Sorry, I assumed.
• Sorry, I used the wrong pronoun.

4.1 Gay and bisexual men, and men who have sex with men

Why men who have sex with men may need a firmer erection

Once a patient has told you he has sex with men, or engaged in anal intercourse, the first change to the plan is the firmness of erection he needs. Erections for anal penetration require greater firmness than erections for vaginal intercourse⁴. Two men can recover the same erectile function and still have different needs, because the firmness a man needs depends on the sex he has.

A survey of gay and bisexual men after prostate cancer treatment asked about sexual function and sexual roles. Two-thirds rated their sexual functioning as fair to poor, and 22% had erections adequate for insertive anal sex. Among men taking the receptive role, one-third experienced pain on penetration¹.

The same study found difficulty with erections given as a reason for not using condoms, and three participants acquired HIV after prostate cancer treatment.

The firmness a man needs depends on whether he penetrates his partner, is penetrated, or both, so the sexual history has to establish his role. In the next film, Andrew's clinician asks him what he and Jeff did together.

Watch a clinician ask Andrew about his sexual role

Andrew, 14 months after surgery

This appointment comes after the sensate focus sessions you watched with Andrew and Jeff in Module 3. Jeff is away, so Andrew has come alone. His clinician is taking him through what he and Jeff used to do together.

Listen for the point where Andrew says what he has not been able to say to Jeff.

You are watching the extract from 12:37 to 14:25. The full session runs for 29 minutes and is available in the resources at the end of this module.

4.1 Gay and bisexual men, and men who have sex with men

How losing erectile firmness affects sexual roles

The second change is the role a man holds during sex. Taking the penetrating role (top) or the receptive role (bottom) can be part of a gay man's sexual identity. Losing a firm erection disrupts familiar sexual activity and upends the role a man takes in a sexual encounter⁴.

Losing a preferred role can also affect how a man sees himself sexually, and his sense of belonging in the gay community⁶.

Some men and some couples adapt to new roles. Others do not find the adaptation acceptable, and the guidelines ask you to recognise that when you counsel a man about pro-erectile aids.

Men describe both outcomes. One man who switched said he had reinvented himself as a bottom, and his partner was happy with it. Another man said he could still take the receptive role without an erection, but he did not find it very pleasurable⁷.

Whether a couple can switch roles often depends on the partner. A partner who takes both roles makes the switch possible, and a partner with a fixed preference does not. Ask about both partners' roles.

Andrew has always taken the top role, and being penetrated hurts him. His clinician offers him a strap-on, so he can keep the role he has.

Watch the top role kept without an erection

Andrew, at the appointment about treatment options

His clinician shows him a strap-on dildo and a harness.

Listen for Andrew's objection, and for what she suggests in reply.

You are watching the extract from 05:48 to 08:55. The full session runs 16 minutes and is available in the resources at the end of Module 3.

4.1 Gay and bisexual men, and men who have sex with men

Ejaculate, and the prostate as a sexual organ

The third change is what treatment does to ejaculate and to the prostate. Gay and bisexual men value ejaculate beyond its reproductive role and beyond the sensation of orgasm. It can be part of erotic play and exchange between partners. The guidelines therefore consider it extremely important that the effect of each treatment on ejaculate is discussed while the patient is still choosing one⁴.

What to tell him: the initial loss of semen is greater after surgery than after radiation therapy for localised disease. Over time, semen is also diminished after radiation and after hormonal therapy.

The prostate is a sexual organ, and prostatectomy takes away a source of sexual sensation. For many gay and bisexual men that is a larger loss than it is for heterosexual men, because the prostate plays a part in erotic stimulation and sensation. Radiation also reduces prostate sensitivity.

4.1 Gay and bisexual men, and men who have sex with men

Anal sex after treatment, and what each treatment does to it

The fourth change is receptive sex. For a man who takes the receptive role, what matters most is how treatment affects the anus and rectum. After prostatectomy, anal penetration is unavailable for six to eight weeks. The prostate lies directly in front of the rectum, so the surgical site is close to the anal canal. It has to heal before the tissue can take the stretching of the anal canal⁸.

Watch a clinician name her own limit

Andrew, earlier in the appointment about roles

Before the clinician asks him anything about his sexual history, she asks whether she may, and she tells him why she wants to.

Listen for what she says about her experience with gay men, and how she asks Andrew to correct her.

You are watching the extract from 03:19 to 04:32.

4.1 Gay and bisexual men, and men who have sex with men

How to ask, and what to say

• Ask what he does, rather than what he is.
• Ask about role and firmness in the same question.
• Tell him why you are asking.

Try:

ASK

• Are you having sex with anyone at the moment? What do you usually do together?
• When you have anal sex, are you usually the one penetrating, the one being penetrated, or both?
• How firm does your erection need to be for what you want to do?
• Some men miss ejaculating more than they expected to. Has that been true for you?
• Some men keep the top role with a strap-on. Is that something you and your partner would want to talk about?

If a patient has not told you he has sex with men:

ASK

• I ask everyone these questions, and I ask because the answers change what I can offer you.

If he says he would feel nothing through a strap-on:

ASK

• Some men find it feels more familiar if their partner strokes their penis with a lubricated hand at the same time. That might be worth trying.

If you get something wrong:

ASK

• If I use a word that doesn't fit for you, tell me, and I'll use yours instead.

4.1 Gay and bisexual men, and men who have sex with men

How a partner's unchanged sexual function can affect the patient

The fifth change is the partner.

Sexuality can be a core part of identity for gay and bisexual men and for men who have sex with men. Where discrimination and lack of acceptance have made that identity something to keep quiet, sexual encounters also become a way of belonging. Being seen as sexually potent is highly valued in the gay community, as it is in the wider community⁴.

The guidelines draw the conclusion directly.

Some experience the loss of libido as a loss of social energy. Gay men report that they feel sexually disqualified. One man put it as having lost all confidence that he could be in a relationship with anyone. He gave his reasons as being older, heavier and less attractive⁷.

In the next film, Andrew's clinician works with a thought like this. She asks him to write the thought down and helps him put together a response in his own words. Then she checks whether he believes it. It builds on the sensate focus work in Module 3, where you offered Andrew a replacement for the thought 'why bother'.

Watch a clinician help Andrew respond to an unhelpful thought

Andrew, at his next appointment

The thought that interrupts Andrew during sex is that Jeff is missing out because of him. His clinician does not tell him the thought is wrong. She helps him write a response to it in his own words.

Listen for the sentence Andrew comes up with, and how she checks whether he believes it.

You are watching the extract from 08:19 to 10:13. The full session runs 14 minutes and is available in the resources at the end of this module.

4.1 Gay and bisexual men, and men who have sex with men

Single, dating, and the friendships at risk

Anxiety about starting a new relationship and having to disclose a sexual difficulty can be debilitating. The guidelines name avoidance, loneliness and depression as consequences¹. The disclosure rehearsal you watched with Anthony applies to these patients as well.

It can apply more often. Gay and bisexual men are more likely than heterosexual men of the same age to be single, and to have casual or new partners, so a man may have to disclose a sexual change repeatedly, to people he has only just met⁹.

4.1 Gay and bisexual men, and men who have sex with men

Body image and confidence

The sixth change is body image. Treatment can change how a man's body looks and behaves: a shorter penis, leaking urine, an erection that does not hold. For a single man, those changes go with him onto dating apps and into community spaces.

Men who are single or in open relationships report losing confidence and finding it harder to meet other men after treatment⁹. He is unlikely to raise it himself, so ask:

• Ask how he feels about his body since treatment.
• Ask whether it has changed how he dates or where he goes.
• Offer help with the changes you can treat, such as continence, alongside the conversation.

Try:

ASK

• Some men tell me they feel differently about their body since treatment. Has that been true for you?
• Has it changed how you go about meeting people?

If he says it no longer matters to him:

ASK

• That's fine. Tell me if that changes.

4.1 Gay and bisexual men, and men who have sex with men

Finding support resources for gay and bisexual men

Gay and bisexual men may need a different kind of support. The guidelines say general support groups may not suit them, and point to online support instead¹.

What suits them may be online or run by an LGBTQIA+ health organisation rather than a cancer service. Some places to start:

• malecare.com, a United States organisation named in the guidelines, with online support for gay and bisexual men. Open malecare.org
• Guy's Cancer Academy, which has a learning module for clinicians on supporting gay and bisexual men with prostate cancer, and information for patients. Open the module for clinicians
• LGBTIQ+ Health Australia, the national peak body for LGBTIQ+ health and wellbeing. Open LGBTIQ+ Health Australia
• Rainbow Health Australia, at La Trobe University, which trains organisations. Open Rainbow Health Australia
• Out with Cancer, a Western Sydney University research program on LGBTQI people with cancer. Open the Out with Cancer project

Which of these suit your patients depends on where you work.

4.1 Gay and bisexual men, and men who have sex with men

Knowledge check

A gay man two years after external beam radiotherapy tells you his erections have improved and are now good enough for sex. He is single and has started dating again. He asks whether he can go back to how he used to have sex.

4.1 Gay and bisexual men, and men who have sex with men

What you can do now

4.2 Transgender women and gender non-conforming people

Who this lesson is about

A transgender woman who has had gender affirming surgery usually still has a prostate. So does a gender non-conforming person who has had hormone therapy and no surgery. Anyone with a prostate can develop prostate cancer.

Research on prostate cancer in this population is still developing, and the guidelines note that these patients' needs are not yet fully understood¹. This lesson draws on the guidelines and on an interview with a urologist who provides gender affirming surgery.

With these patients, as with every patient, say what is known and where the evidence is still developing. The next film starts with the most basic fact: whether the prostate is still there.

Watch a urologist explain why the prostate usually remains after surgery

This clip comes from an interview with Dr Marissa Kent, a reconstructive urologist at Beth Israel Deaconess Medical Center.

The interviewer suggests that a transgender woman sitting in a urology clinic may feel they should not be there.

Listen for what she says about what gender affirming surgery does and does not remove.

You are watching the extract from 01:58 to 03:04. The full interview runs 28 minutes and is available in the resources at the end of this module.

4.2 Transgender women and gender non-conforming people

What most gender affirming surgery leaves in place

Three treatments matter for prostate cancer care.

They are vaginoplasty, orchiectomy and hormone therapy. Before you read what each one leaves behind, test what you already assume.

Some patients do not know this. The urologist interviewed for this lesson raises the prostate in every vaginoplasty consultation she does. It matters for urinary control and for sexual satisfaction. Patients should understand what is still part of their body.

4.2 Transgender women and gender non-conforming people

The impact of long-term hormone therapy on the prostate

Prostate cancer responds to hormones. Oestrogen with androgen blockade lowers testosterone, which is also how androgen deprivation therapy treats prostate cancer. An orchiectomy lowers testosterone in the same way.

After many years the prostate atrophies and shrinks, and the incidence of prostate cancer in this population is lower. The guidelines attribute that to the protective role of hormonal treatment as part of gender transition¹.

Cancer still occurs despite that. When it does, it is more likely to be the aggressive, hormone-resistant kind, because hormone-sensitive disease has already been suppressed.

Surgery raises separate questions. In the next film, the urologist explains how prostate surgery and vaginoplasty each affect continence.

Watch a urologist explain how surgery affects continence

This clip comes from the same interview and covers continence after both operations.

Two sphincters hold urine in the bladder. Prostatectomy removes one of them, and vaginoplasty weakens the pelvic floor that supports the other.

Listen for what happens to continence when a patient has had both operations.

You are watching the extract from 06:29 to 08:23.

4.2 Transgender women and gender non-conforming people

How the order of surgeries affects treatment

Two things follow from what you have just watched.

The first is the order the operations happen in.

Which way round the operations happen changes what you tell them.

Open each one to see what it changes.

4.2 Transgender women and gender non-conforming people

How radiation affects vaginoplasty in transgender women

Vaginoplasty creates a vaginal canal directly behind the urethra, prostate and bladder. Because it sits so close to the prostate, prostate cancer treatment can affect it.

Radiation for prostate cancer is given in different ways. It can be delivered externally, through small radioactive seeds placed in the prostate (brachytherapy), or as a combination of the two.

Hormone therapy shrinks the prostate over time. In studies of cisgender men, seeds placed in a smaller prostate had a greater effect on the tissue around it. After vaginoplasty, that surrounding tissue includes the vagina. The radiation can cause scar tissue that narrows the vagina, a condition called vaginal stenosis².

It is also unknown whether radiation works as well for these patients. High-risk prostate cancer is usually treated with radiation and androgen deprivation therapy together. Patients on gender affirming hormone therapy are already taking androgen blockade, so it is not known whether adding radiation gives the same long-term survival.

When radiation is being considered, discuss the risk of vaginal stenosis and explain that survival evidence for this group is limited.

4.2 Transgender women and gender non-conforming people

How to read a PSA result in a patient on gender affirming hormone therapy

Prostate cancer screening uses a blood test for prostate-specific antigen (PSA). A raised PSA can be a sign of prostate cancer, and each result is compared against an action level that signals when to investigate further. In Australia, the action level for the general population aged 50 to 69 is 3.0³ based on cisgendered men with no history of hormone therapy.

Reading a PSA result on hormone therapy

So a result under 3.0 can still be unusually high for a patient on hormone therapy. A PSA of 1.8 is under the general action level, and it is three times the 0.6 that 95% of the women in that study stayed at or below.

No action level has been validated for this population. A systematic review found the available data cannot yet establish clinical reference intervals for this population⁵.

So the useful comparison is the patient's own history.

Compare the patient's result with their own earlier results and discuss it with a urologist.

4.2 Transgender women and gender non-conforming people

Why prostate cancer may be diagnosed later in this group

Four factors can delay diagnosis:

1. 1

   Clinicians may not know if the prostate is still there.

2. 2

   Patients do not always disclose.

   Some expect to be discriminated against, so a surgical history goes unmentioned, particularly where no intimate examination is expected.

3. 3

   Prostate cancer is usually silent.

   By the time it produces symptoms it is generally advanced.

4. 4

   There is no agreed screening threshold for transgender women.

   No PSA action level has been validated for this group, and there is no agreed schedule for how often to screen after hormone therapy or surgery.

The research on this population is largely case reports, and the cases reported are the patients who already had problems.

4.2 Transgender women and gender non-conforming people

How to ask, and what to say

• Ask what surgery the patient has had and say why you are asking.
• Tell them the prostate is still there.
• Explain how the order of their surgeries affects their options.
• Explain what their PSA result means for them.

Try:

SAY

• I need to ask what surgery you've had, because it changes which treatments are open to you and what the risks of each one would be. It's a clinical question rather than a personal one.
• Most gender affirming surgery leaves the prostate in place, so you're in a urology clinic for the same reason anyone else would be.
• Because you've had the vaginoplasty already, the continence risk from prostate surgery is higher for you than the figures quoted for most patients. I'd rather you heard that from me.
• The range on your report is based on men who aren't on hormones. Hormone therapy lowers PSA a lot, so your result is higher than I'd expect for someone on your treatment, even though it's under that range.
• There's no tested range for women in your position, so I'd like to compare this with your earlier results and ask a urologist to look at it with me.

If they ask whether the hormones protected them:

SAY

• They lower the risk and they don't remove it. Cancer that does develop tends to be the more aggressive kind, which is why I want to look at this properly.

4.2 Transgender women and gender non-conforming people

Say it out loud

This rehearsal asks you to say two things aloud. Say both.

You are with a 58-year-old transgender woman who has been on hormone therapy for 20 years and had vaginoplasty 12 years ago. Their PSA has come back at 1.8, which is inside the reference range printed on the result.

First, tell them they still have a prostate, and that a urology clinic is the right place for their care.

Say it out loud, now, in whatever room you happen to be in.

Then tell them that their result cannot be read against the range on the report, and that there is no tested range for them. Say it in the same tone as the first.

Watch a urologist explain why she offers every patient the same appointment times

This clip comes from the same interview and covers appointment times.

Some arrangements are offered with the best of intentions and still set the patient apart. The most common is a quiet appointment at the end of the day, away from a full waiting room.

In this video, the interviewer describes a doctor who offered a transgender woman a 6 pm appointment and presented it as convenient for her work and her child. It also meant the waiting room would be empty. The interviewer then asks the urologist whether separate appointment times are a good idea.

Listen for her answer: the best appointment is the earliest one, and she wants that for every patient. The conversation then turns to a waiting room designed for men.

You are watching the extract from 20:50 to 24:03. The full interview runs 28 minutes and is available in the resources at the end of this module.

4.2 Transgender women and gender non-conforming people

What the guidelines ask of you

The guidelines make four recommendations for this group¹.

• Screen and diagnose anyone who still has a prostate

  in an environment that is inclusive and welcoming.

• Ask about sexual concerns and rehabilitation needs based on the patient's anatomy and priorities

  rather than on an assumed anatomy.

• Acknowledge that the patient's sexual concerns relate to their identity

  to their history of hormonal and surgical treatment, and to their own goals, across the whole of survivorship care.

• When you look for support resources

  follow the same approach as for gay and bisexual men, because the usual resources may not suit this patient⁶.

4.2 Transgender women and gender non-conforming people

Questions patients ask, and what the evidence can answer

The urologist names the three questions patients ask her most. Patients who have not had surgery ask how prostate cancer treatment would affect their options for surgery later. Patients who have had surgery ask how prostate cancer treatment would affect them, given the surgery they have had. Both groups ask about continence and sexual function, which the urologist describes as the areas urology knows best.

You can answer the first two from the patient's surgical history and the treatment options. You can answer questions about continence and sexual function as you would for any patient.

The evidence cannot yet show whether prostate cancer treatments work as well for this group. Beyond hormones, the evidence is single case reports, so no firm conclusion is possible. The guidelines also say it is uncertain what sexual distress these patients experience and which losses will matter to them¹.

No centre specialises in this care. The urologist recommends a multidisciplinary opinion instead, with the surgeon and the radiation oncologist working together. Prostate cancer treatment is individualised for every patient.

4.2 Transgender women and gender non-conforming people

Knowledge check

A 57-year-old transgender woman had vaginoplasty eight years ago and has been diagnosed with localised prostate cancer. They are choosing between prostatectomy and radiation therapy.

4.2 Transgender women and gender non-conforming people

What you can do now

4.3 Boundaries, scope and ethics

The four situations this lesson puts to you

Sexual health appointments can raise boundary questions that other clinical work raises less often. You talk with patients in detail about sex and intimacy, often over longer or repeated appointments. Patients may share things they have never told anyone else. That closeness helps the work, and it can also make the line between a professional and a personal relationship harder to see.

This lesson covers four common situations:

Select each one to read it.

Each situation involves a decision.

4.3 Boundaries, scope and ethics

When you notice a change in how you treat a patient

You have been seeing a patient several times about the sexual effects of their treatment. You notice that you look forward to the appointments. You are more conscious of how you dress on the days you are seeing them. The sessions run over. You make more social conversation than you would with another patient.

4.3 Boundaries, scope and ethics

What to do once you have noticed

• Tell one colleague before you decide anything.
• Put the appointment back to its scheduled length.
• Decide whether to continue with the patient and decide it with someone else.

Try, to a supervisor or a peer:

SAY

• I've noticed my appointments with one patient are running long, and I want to talk it through before I do anything about it.
• I'm not sure whether I'm the right person to keep seeing them. Can you help me work that out?

Try, to the patient:

SAY

• We're going to keep to the 45 minutes from now on, so we get through everything you came for.

If you decide to hand the patient on:

SAY

• I want to get you in with a colleague who can give this the time it needs. I'll tell them where we've got to, so you can pick up from there.

4.3 Boundaries, scope and ethics

When a patient touches you

You have been seeing a couple about the sexual effects of prostate cancer. One of them reaches out to hug you every time they leave. You return the hug briefly, and you are uncomfortable about it every time.

4.3 Boundaries, scope and ethics

How to change what happens at the door

• Change your own position before you say anything.
• Say it warmly and once, rather than each time.
• Name what you are keeping, so the change does not read as a withdrawal.

Try, offering a hand as you stand:

SAY

• It's been good working with you both.

Try, if you would rather say it:

SAY

• I'm not much of a hugger, so you'll have to make do with a handshake. It's been good working with you.

If they ask whether something is wrong:

SAY

• Nothing's wrong at all. It's just me.

4.3 Boundaries, scope and ethics

When a patient asks about your own sex life

You are working with a couple. One of them has decreased sexual interest and difficulty reaching orgasm. The other turns to you and asks what you do to spice up your own sex life.

The question follows from the appointment. You have spent an hour asking them about their sex life, and they have answered every question. Asking you back is what makes the exchange feel even.

If you answer, you share personal information that changes your professional relationship with them. If you refuse abruptly, they may feel embarrassed for asking after sharing so much themselves.

4.3 Boundaries, scope and ethics

How to decline a personal question respectfully

If the question keeps coming back:

SAY

• I'm going to keep ducking that one. Let's stay with what the two of you are working out.

4.3 Boundaries, scope and ethics

When one of them asks to see you alone

You have seen a couple together several times. One of them rings and asks for an appointment on their own.

A private appointment can help, because people sometimes say things alone that they would not say in front of their partner. Andrew waited until Jeff was away to tell his clinician that being penetrated had hurt him, and the rest of that appointment built on it.

The risk is that one partner tells you something the other does not know you have heard. In later joint appointments, you are holding information that one of them has not shared.

4.3 Boundaries, scope and ethics

Patient or partner, and what you settle first

It matters whether the person asking to see you alone is the patient or the partner, because your responsibilities to each of them are different.

The patient is yours. A private appointment with the patient is ordinary care, and the partner has no claim on what is said in it.

Services differ on whether the partner is a patient. In some, a partner can be seen in their own right. In others, the partner is not your patient, and a private appointment with them is a different thing. Check how your own service works before you agree to see a partner alone.

Either way, they may want help with their own sexual health, which the guidelines support and Module 3 taught you to ask about, or they may want to tell you something about the patient.

Settle the same thing either way, before the appointment starts:

SAY

• Anything you tell me stays with me unless you and I agree otherwise. I won't bring it into the joint sessions on your behalf.
• If it's something the two of you need to talk about, I'll help you work out how to say it. I won't say it for you.

4.3 Boundaries, scope and ethics

Rewrite it

A man you have seen three times since his prostatectomy has been describing how hard it has been to have sex without an erection. He stops and asks whether you have ever had problems with sex yourself.

Here is what a lot of us would say.

• I'm not going to answer that. Let's keep the focus on you.

Rewrite it: say why the question makes sense, give your reason for not answering rather than a rule, and replace it with what you can offer instead.

Write your version before you reveal the model answer.

4.3 Boundaries, scope and ethics

Knowing where your expertise ends

Clinicians come to this work from different starting points. Sexual health is not yet a standard part of medical or health professional education¹, so a urologist or oncology nurse may know prostate cancer treatment well and have less training in sexual health. A sexual health specialist or psychosexual therapist may know sexual health well and have less experience with cancer treatment.

Wherever your expertise sits, it has limits and recognising them is part of good practice. Knowing where your expertise ends lets you decide what to manage yourself and when to involve a colleague.

As patients come to trust you, they may raise issues that go beyond what you are trained to manage.

4.3 Boundaries, scope and ethics

Coping with boundaries being tested

Guideline statement 44 asks clinicians to undergo sexual health education in interprofessional groups, using case-based and reflective learning, and it is a strong recommendation¹.

That is a statement about education, and it also describes what you need when a boundary has been tested: a case, discussed with people from other disciplines who are willing to examine their own part in it.

All four situations in this lesson have the same first step. Find the group, or the supervisor, or the one colleague, and have the conversation there.

If your service has no such group, supervisor or colleague, setting one up is a change worth making. The last lesson in this module covers how to make changes like this in your service.

4.3 Boundaries, scope and ethics

Knowledge check

You have seen a patient six times about the sexual effects of his treatment. You realise you have moved his appointments to the end of the day, and last week you gave him your personal mobile number so he could text you between appointments.

4.3 Boundaries, scope and ethics

What you can do now

4.4 Why sexual health gets left out of care

Why sexual health support is often missing from cancer care

The previous lesson covered decisions about your own practice. This lesson looks at the wider system: why sexual health care is often missing from cancer care, and what changes that.

Many patients see sexual health as a very important part of their care, but the support available to them is limited. The guidelines set out several reasons for this¹.

Clinicians can feel uncomfortable discussing sex. They may lack knowledge, resources, or a sexual health provider to refer a patient to. Some believe that a person with cancer is more concerned with survival than with sexuality.

Cancer patients report a high need for sexual health information, and that need is rarely met. Men with prostate cancer have better access to sexual health support than people with other cancers. Even so, many of their needs are not met.

4.4 Why sexual health gets left out of care

What stops clinicians raising sexual health

In a hospital-based study, clinicians named their two most common barriers to discussing sexuality.

4.4 Why sexual health gets left out of care

The belief that sexual health belongs to another discipline

Training is only part of the picture. One study of nurses and one review of 18 studies found the same two things^3,4: significant gaps in education and confidence, and a belief among nurses that sexual health was not primarily their responsibility.

The second finding matters because training alone may not change that belief. Clinicians who see sexual health as part of their own role can raise it with patients, even when another discipline also provides care.

This belief is not limited to nursing. Robinson and Lounsberry describe health professionals across disciplines who believe the responsibility lies with another discipline⁵. When every discipline assumes another will ask, the patient may never be asked at all.

4.4 Why sexual health gets left out of care

Why patients do not raise sexual health themselves

Patients also wait to be asked. O'Brien and colleagues interviewed 35 men after treatment for prostate cancer, with partners present in 18 of the interviews⁶. The men said their clinicians rarely invited them to discuss sexual health concerns.

4.4 Why sexual health gets left out of care

Why patient handouts can fall short

Asking patients about sexual health is the first step. The written information you give them afterwards also needs to be easy to use. An observational study of patient resources on the sexual side effects of prostate cancer found them often inadequate. More than 50% of the materials reviewed were written above a high school reading level. Another 16% scored unacceptably for the cultural sensitivity of their visual messaging⁷.

So, a patient who wants to know more may be given material that is too hard to read, or with images and examples that do not reflect their culture or their life.

This is the easiest barrier in this lesson to check. Read the handouts your service gives out and consider whether your patients could understand them and whether the images and examples reflect the patients you see.

4.4 Why sexual health gets left out of care

Patients who have even less access to expertise

The guidelines note that every barrier in this lesson is greater for lesbian, gay, bisexual, transgender and intersex patients, because even less expertise is available to them¹.

Earlier in this module you learned what changes clinically for gay and bisexual men and for transgender women. There are also fewer specialists to refer these patients to.

The American Society of Clinical Oncology has called for more education and competency training, so that providers can work effectively with sexual and gender minorities. The guidelines agree it should be part of any sexual health education, which is the approach described on the next screen.

4.4 Why sexual health gets left out of care

Three changes you can start with

• Add a sexual health question to the standard follow-up form.
• Take one real case to a group that includes other disciplines.
• Read your own handouts before you give another one out.

Try, to whoever owns your follow-up template:

SAY

• Can we add one sexual health question to the standard template? At the moment only a few of us ask it, so many patients aren't asked.

Try, at a team meeting:

SAY

• I'd like to bring a case to the next one. It's a sexual health case and I want more than my own discipline looking at it.

Try, with the patient:

SAY

• I ask everyone I see about sexual health, so it's a normal part of your appointment.

4.4 Why sexual health gets left out of care

4.4 Why sexual health gets left out of care

Knowledge check

An audit of your service finds that patients treated for prostate cancer are asked about their sexual health in about one appointment in ten, and that only a small number of clinicians ever ask.

4.4 Why sexual health gets left out of care

What you can do now

4.5 Being the destination

Why sexual health care belongs in your service

Most of this course has focused on what happens within appointments. This lesson looks at the service around them, and at becoming the clinician other services refer patients to.

The guidelines note that cost is usually the reason given for not including a psychosexual specialist in a cancer service. Leaving that role out tells patients and partners that sexual health is not an essential part of prostate cancer care¹.

When sexual health care is part of the service, it reduces the stigma of asking for help and gets people into rehabilitation sooner.

The next film shows what ongoing care makes possible. It returns to a couple you have followed since before surgery.

Watch a couple review their priorities a year after surgery

Doug and Jean, at their fifth appointment

In Module 2, you watched Doug and Jean, before his surgery, rate how much they each valued physical pleasure and how much they valued closeness with each other. A year after his surgery, their clinician asks them to rate it again.

Listen for how their ratings have changed, and the reasons they give.

You are watching the extract from 08:15 to 10:01. The full session runs 17 minutes and is available in the resources at the end of this module.

4.5 Being the destination

Why follow-up appointments matter

Doug and Jean have been seen five times across a year. Between the first appointment and the fifth, what they wanted from sex changed, and they say so themselves.

Couples usually work out what they want over several appointments, by trying things, finding that some do not work, and adjusting the plan.

Module 3 followed couples across several appointments. From the service's side, this means building follow-up into the plan at the first appointment, so the plan can be adjusted to what happened.

4.5 Being the destination

Deciding which referrals to take on

Becoming a referral destination means deciding what you will accept. You have already learned when to refer patients on, and this is the other side of that decision.

• Take on what your training covers and what you can see through. Passing a referral on after accepting it delays the patient's care.
• Take on the conversation even where the treatment is managed elsewhere. A man whose medication is managed by a urologist may still need a clinician to talk about what he wants from treatment.

4.5 Being the destination

Other disciplines involved in the patient's care

A patient treated for prostate cancer is seen by several disciplines. Each can contribute something different to their sexual health care.

• Urology. The prostate, the nerves and the pro-erectile treatments. Medication doses, devices and surgical options sit here.
• Radiation oncology. What the radiation did and what recovery to expect, including side effects that can develop months after treatment ends.
• Nursing. Nurses often have the most contact with the patient, which puts them in a good position to ask about sexual health.
• Psychology and psychosexual therapy. Specialist couple and psychosexual therapy when education and support in your appointments are not enough (guideline statement 26).
• Physiotherapy. The pelvic floor, which affects both continence and arousal.
• General practice. Prescriptions between appointments, and ongoing care for the rest of the patient's life.

You are unlikely to be the only one of these clinicians your patient sees, and some of them see him more often than you do. Find out who they are, so you can work with them on his sexual health between your appointments.

4.5 Being the destination

What referrers need from you

Some clinicians hold back from raising sexual health because they are not sure where to send the patient next. One health professional described it:

When you accept referrals, you give colleagues like this an answer. They are more likely to keep referring when they learn what happened, can tell the next patient what you will do, and can see the referral was worth making.

Timely feedback shows referrers that the referral was worth making. Send it soon after you see the patient, while the referrer still remembers them.

4.5 Being the destination

How to respond to a referral

• Acknowledge it the same week, even where the appointment is months away.
• Tell the referrer what you are going to do, in one line.
• Send something back after the first appointment.

4.5 Being the destination

Making it easy for colleagues to refer to you

Colleagues can only refer patients to you if they know about your service and how to reach you.

A referrer needs four things: your name, what you take on, how to send a patient, and how long the wait is. Write these down and send them to the services that should be referring to you, so referring is simple.

The guidelines make a similar point about the whole system. There are too few experts in this area, which limits the education and resources available to support sexual recovery². Making your service easy to find helps patients reach the expertise that does exist.

4.5 Being the destination

Making patient materials culturally appropriate

Guideline statement 45, a moderate recommendation, asks providers and healthcare systems to develop culturally appropriate materials for counselling about what prostate cancer treatment does to sexual health².

The recommendation draws on the study of patient materials described in the previous lesson, which found many were hard to read or not culturally sensitive. The authors concluded that what is available in healthcare practices may not meet patient needs for content, cultural sensitivity or readability³.

The guidelines recommend asking patients, partners and other stakeholders to review materials before they are used.

4.5 Being the destination

How culture shapes what recovery means

The definition of sexuality varies with cultural, ethnic and racial understandings, and so does the value attached to each part of it. The guidelines ask for enough cultural awareness to define what the population you serve needs, and to use language they find acceptable².

Two studies show what that means in practice. Among Black African and Black Caribbean men, support systems differed from those White men described. Cultural definitions of masculinity also shaped how these men understood their experience after treatment. Among Latino men, cultural taboos around sex and masculinity limited what they learned and delayed detection. Fathers were a valued source of information, and their roles affected whether sons intended to be screened.

The guidelines also note that some patients have unrealistic expectations of treatment and experience regret about its side effects². When a patient and clinician understand recovery differently, misunderstandings about side effects are more likely and can go unnoticed by both of them.

4.5 Being the destination

Tailoring education to your local community

Guideline statement 46 is expert opinion. It asks that patient education programs about sexual recovery be tailored to local cultural influences, to the resources available in the region, and to how recovery and its priorities are understood there⁴.

The guidelines explain why local tailoring matters. Local understandings of sexual health shape what support men and partners receive, and how an institution applies guidelines like these.

The aim is for each patient to meet a clinician whose information is locally relevant, respectful and free of bias. Patients who get that are more likely to accept psychosexual care.

4.5 Being the destination

How cost affects access to treatment

Guideline statement 47 is a clinical principle. It asks that all insurance providers cover the treatment of sexual dysfunction caused by prostate cancer therapy, to recognise it as part of cancer care and to reduce differences in who can get it⁵.

The guidelines describe the current position plainly. Medications and devices cost a considerable amount. There is little data on what is available globally, and most men are unlikely to be able to access it. Even in wealthy countries, sexual rehabilitation after prostate cancer treatment is not part of usual health care.

4.5 Being the destination

Where the evidence is still developing

The guidelines close by naming the areas where more research is needed. Three of them relate directly to what this course has taught you⁶.

• Penile rehabilitation. There is not yet convincing evidence that rehabilitation protocols improve the recovery of erectile function. The guidelines see its current value in bringing the couple into recovery early and building confidence with erectile aids.
• Interventions for sexual and gender minorities. These are still being developed. The guidelines call for research into what these populations need, so interventions can be designed and tested.
• Culture and stigma. Where laws or religious prohibitions threaten particular sexual practices or relationships, men may avoid cancer treatment to preserve sexual function, which can lead to late diagnosis and early death. The guidelines call for research to guide action on this.

This course has taught both established practice and areas where research is still developing. When you offer care, tell patients which parts are well established and which are still being researched.

4.5 Being the destination

4.5 Being the destination

Planning one change in your service

• Pick what you just wrote down.
• Make it small enough to do without a business case.
• Name the person who has to agree and go to them this month.

Most changes of this size need only one person's agreement. For example, you could add a line to the follow-up template, send a short description of what you take on to the services that should be referring to you, add a standing item to a team meeting agenda, or ask two patients to read a handout before it is reprinted.

Try, to whoever has to agree:

SAY

• I want to add one line to the follow-up template. It takes a minute in the appointment, and it means every patient gets asked.
• Can I have ten minutes at the next team meeting? I want to set up a standing slot for a sexual health case, because the guidelines ask for it to be worked across disciplines.

4.5 Being the destination

Knowledge check

A general practitioner refers a man 14 months after prostatectomy. He is using tadalafil, it works about half the time, and he and his wife have stopped trying to have sex on the nights the medication does not work. The referral letter asks you to review his medication.

4.5 Being the destination

What you can do now

4.5 Being the destination

You have completed the course

You began with the case for having the conversation. Since then, you have learned to assess and to plan and deliver interventions. You have also learned to adapt your practice for patients whose needs are less well covered by current research, such as gay and bisexual men and transgender women.

Your toolkit holds the reflections you wrote, the words you rehearsed and the one change you named.

Keep the guidelines you have been working from as your reference. No other document in this field covers all of this in one place: assessment, intervention, particular populations and the systems around them.

Your next step is to book the conversation with the person who has to agree to your one change.

Resources from this module

Tick the resources you would like to keep, then email them to yourself. Anything you saved as you went along is already ticked for you.

Your reflections

Everything you wrote during this module is still here, on this device. Open it to read it back, print it or email it to yourself.