Before you begin

Frequently Asked Questions (FAQs)

Select any question to expand the answer.

Let's start with Anthony

Anthony is 62 and starts radiation therapy for prostate cancer in a month. He's recently divorced and was dating before his diagnosis.

Press play to hear his clinician introduce the case. The clinician sets out three challenges that men in Anthony's position often face: not knowing what to expect from treatment, deciding what to tell someone new, and beliefs about masculinity that can stop men from asking for help.

You'll follow Anthony through the course, from his first appointment at the sexual health clinic to a year after treatment. You'll sit in on that appointment later in this module.

1.1 The conversation that's not always had

The moment that mattered had already passed

For most men you'll meet in this course, one appointment decides everything: the one where the treatment is chosen.

The man is told he has cancer. He is told his options. He is asked to choose and often that decision is made within the hour.

The appointment is also usually the only time anyone mentions what treatment will do to sexual function, if it is mentioned at all.

It's worth slowing down on this moment, because it's what the whole course is built around, and it's missed far more often than it's caught.

What Anthony heard

Anthony's doctor did mention sex when they talked through radiation therapy. Ask Anthony what he was told, and he'll say there probably wouldn't be much impact and that he should recover fully.

Picture the appointment. He's just been told he has prostate cancer. There's a lot to take in – survival rates, surgery or radiation, recovery times and what any of it means for his life. Sexual function got a sentence, and the part he kept was the reassuring one.

He left with a treatment chosen and an expectation that wouldn't survive the next eight months.

Now picture a couple

Same news, same room, but this time a partner is beside him.

Prostate cancer. Treatment options. Recovery times. Part-way through the doctor mentions briefly, and only once, that treatment can affect sexual function.

Nobody picks it up. Not the man who is still processing the word cancer. Not his partner, who hesitates: it doesn't feel like their place, and it feels small next to survival. Not the doctor, who said the words and moved on.

This time the silence lands on two people. In one survey of physicians treating cancer patients, 44.4% said they never or rarely include the patient's partner as standard practice when sexual health is discussed at all².

1.1 The conversation that's not always had

Eight months later

Anthony is cancer-free.

But he can't get an erection, he's leaking urine during sex, and his sex drive is gone. It's been 8 months since he completed his last radiation treatment. He didn't think he'd be having these problems so many months after treatment had finished. He has many anxious thoughts:

• Are these issues permanent?
• Can they be fixed?
• And where does he go for help?

And there's something else. Anthony has just started a new relationship. They don't know he was treated for prostate cancer.

Should he tell them? How much? How do you raise erectile dysfunction with someone new? Should he be dating at all like this?

Some days he doesn't feel like much of a man.

Anthony doesn't feel adequately prepared for this. So when it came, he had no framework for it and nowhere to take it, and he's treating it as a private failure, rather than a known and expected consequence of his treatment.

For a couple, the same symptoms play out differently

The changes are the same. What happens next isn't.

He ties erectile function to being a man and a husband, so the loss reads as a loss of himself. He withdraws. He hasn't touched his partner in months. In turn, the partner reads withdrawal as rejection.

He can't find the words to explain that it isn't. Neither of them can find a way to say they still want closeness. The silence that started in the consulting room has now moved into their home, and it's costing them intimacy and closeness.

1.1 The conversation that's not always had

This isn't a niche problem

Between 81 and 93 per cent of people treated for prostate cancer report that it affected their sex life⁴. The range depends on the treatment and the measure used.

1.1 The conversation that's not always had

Why one mention is never enough

Four reasons this keeps happening, none of them is about clinicians not caring:

• A man at diagnosis cannot always hear it. Information about sexual function is competing with mortality, and it loses every time. Saying it once, at a catastrophic point, is not the same as telling him.
• He can't imagine it until he's living it. Erectile function, ejaculation, sensation, desire, continence, body image – abstract in a consulting room but a reality eight months later. He can't weigh what he can't picture, and that's precisely what produces regret.
• Partners are rarely spoken to directly. Nearly half of clinicians never or rarely include partners in the conversation². Addressing only the patient means the partner doesn't get permission to enter the conversation and no support when the changes arrive.
• We don't feel equipped. The most commonly cited barriers clinicians face in this area are lack of training, lack of time and discomfort with the topic.

1.1 The conversation that's not always had

Every treatment, not only surgery

Surgery, radiation, hormone therapy and chemotherapy all affect sexual function to some extent. The effects of these reach beyond erections and include:

1.1 The conversation that's not always had

Quality of life understates it

Sexual dysfunction gets filed under altered quality of life and set aside, which is broadly what has happened for thirty years. The consequences are more serious than that framing suggests.

Open each marker to see what that consequence looks like.

1.1 The conversation that's not always had

Nobody had written it down

The knowledge already existed. It was scattered across urology, nursing, psychology and physiotherapy, and nobody had ever pulled it together into something a clinician could use in a consultation.

In 2015 Movember convened a global working group, chaired by Dr. Daniela Wittmann (University of Michigan) and co-chaired by Professor Eilis McCaughan (Ulster University) and a decision was made to synthesise what all the disciplines already knew separately. Professor McCaughan died in 2020, before the work was published but much of what follows exist because of her.

Between 2017-2021, the team grew to include oncologists, sexual medicine urologists, primary care physicians, psychologists, social workers, nurses, physiotherapists and the men and their partners who had gone through the treatment.

In 2022, the group published the world’s first Clinical Guidelines for Sexual Health Care for Prostate Cancer Patients: 47 statements and recommendations, and the first time anyone anywhere had done this.

1.1 The conversation that's not always had

The biopsychosocial model of sexual health care

The Guidelines view sex through a biopsychosocial lens, and recommend caring for men and their partners holistically which includes the biological, psychological and social impacts together.

Using that lens matters for the whole person and the world they live in. Someone whose erectile function has been restored by medication, but who hasn't spoken to their partner about any of this in eight months, hasn't really been helped. A couple who have quietly redefined intimacy without erections may need nothing further from you at all.

This course is built on that principle. You'll meet it again in Module 2 as the integrated model of sexual health, and you'll use it every time you formulate: every time you draw the three together into one working explanation of what's happening for the person in front of you.

1.1 The conversation that's not always had

The first guideline is the one nobody does

Of the 47 recommendations in the Guidelines, the first is the simplest: ask. Raise sexual health before a man chooses his treatment, and keep raising it afterwards.

Not asking the question closes the door on understanding one's health. This is what it costs:

The knowledge exists and the guidelines exist. What's missing is the conversation, and that's what this course is about: the first guideline, and what to do once someone has been referred to you.

1.1 The conversation that's not always had

A note before we begin

It starts with you

When clinicians are asked what stops the sexual wellbeing conversation happening, the answer is rarely about the patient. Research across the field points to the same place: the clinician's own comfort, confidence and preparation¹.

Patient factors are hard to shift. Comfort and confidence are learnable, and they're built through language you've practised and a structure you trust. They also come from knowing what to do with the answer once you get it, which is what this course sets out to give you.

You may also be the last person in the pathway who can ask, which makes your version of this conversation matter more than most.

1.2 Getting ready to ask

Assumptions that quietly close a door

These examples came up unprompted when clinicians were asked what gets in the way, and none of them involves anyone behaving badly.

Each of these looked reasonable to the person making it. That's what makes them hard to spot in your own practice.

1.2 Getting ready to ask

1.2 Getting ready to ask

A more useful question than bias

Bias is an uncomfortable word, and not a very useful one. It invites you to work out whether you're a good person, which is hard to answer and harder to act on.

More specific questions you can ask yourself:

Each of those has an answer, and an answer you can name is something you can change on Monday morning.

1.2 Getting ready to ask

The fixing instinct

There's a second thing in your way, and it happens to be the thing you were trained to do.

One clinician put it this way:

The ability to listen and not jump in and fix. The confidence to allow people to be uncomfortable and not be scared that you can't fix them.

This urge to fix is a good instinct, built by years of clinical training, and it's frequently what the person came for. It just isn't always what's needed. Sometimes being heard is the help, and the conversation is the fix.

1.2 Getting ready to ask

When to fix, and when not to

You'll fix a great deal in this course: erectile rehabilitation, pro-erectile therapies, sensate focus, symptom management. That's the job.

The skill lies in recognising which of three situations you're actually in.

• Fix it when there's a treatable mechanism and the person wants it treated.
• Don't fix it yet when they're still describing the problem. A solution offered at minute two ends the history at minute two, and you'll spend the rest of the consultation treating something they hadn't finished explaining.
• Don't fix it at all when the loss is real and permanent, and what's needed is for someone competent to sit with that without flinching. Someone whose erections won't return doesn't need a fifth device. They need a clinician who can say so and stay in the room.

1.2 Getting ready to ask

Say it out loud

This is the first of 13 rehearsals in the course, and they work considerably better if you do them rather than reading past them.

You're with a patient three months after a radical prostatectomy, and you need to ask whether they're leaking urine during sex.

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

1.2 Getting ready to ask

Why saying it aloud matters

Research into sexual health conversations has shown that awkwardness is audible.

Talking around the subject broadcasts the same discomfort.

Clinical education reaches for more knowledge when a clinician sounds uncomfortable. What settles a voice is having said the words often enough that they stop arriving with a wince attached. Which is why this course will keep asking you to speak them aloud.

1.2 Getting ready to ask

Your own history with this

Every clinician arrives carrying a sexual history of their own. What they were taught, what was never mentioned at home, and what they find easy to say now.

You won't be asked to share any of it. It's in the room whether you've reflected on it or not. The clinicians who have reflected on their own understanding of sexuality are consistently the ones who find the conversation easiest.

What follows is a values exercise originally developed for men and partners affected by prostate cancer. We're using it on you first, before you ever use it with anyone else.

1.3 How sex works, and how cancer changes it

Why this lesson exists

You already know the anatomy. This lesson is about the model of sexual response you carry in your head, because that model decides what you ask about and what you count as a problem.

Two clinicians can see the same patient on the same afternoon and take completely different histories, one working from a linear model and one from a circular one. They'll reach different conclusions about what's wrong.

So this lesson is about the map rather than the parts.

1.3 How sex works, and how cancer changes it

The structures involved

The prostate sits below the bladder, surrounding the urethra, and the neurovascular bundles carrying the nerves responsible for erection run along either side of it. They're close enough to the gland that surgery in this area puts them at risk even in expert hands.

Erection itself is neurovascular. Arousal signals cause smooth muscle in the corpora cavernosa to relax, blood fills the sinusoids, and the expanding tissue compresses the veins that would otherwise drain it. Damage the nerves and the signal doesn't arrive; damage the vessels and the tissue doesn't fill.

Emission and ejaculation are separate processes again, and separately vulnerable, which is why someone can have an orgasm without producing any semen at all.

1.3 How sex works, and how cancer changes it

Three things that get conflated

Erection, orgasm and ejaculation are separate processes with separate mechanisms, and prostate cancer treatment can affect any or all of them.

Someone can have an orgasm with no erection, or an erection with no orgasm. Almost everyone who has had a radical prostatectomy will have orgasms with no ejaculate at all, because the structures that produce it have been removed.

If you don't separate these three when you take a history, you'll hear my sex life is ruined without knowing which of them they mean. Separating them tells you what has actually been lost, and what might be recoverable.

1.3 How sex works, and how cancer changes it

The linear model of sex – the script we first learned

Masters and Johnson described sexual response as a linear sequence: excitement, plateau, orgasm and resolution, to which Kaplan later added desire at the front.

Desire, then arousal, orgasm and then it's over. One direction, one destination.

As a description of a young man having sex he already wanted to have, in a body with no pathology and no ageing changes, it holds up reasonably well. And that's exactly what most of us learned.

This is where sexual scripts get written. Desire shows up unbidden. Erections arrive without being asked. Orgasm is reliable, and it's the point to sex.

The script is invisible precisely because it works.

Where the script breaks:

Then the body changes, through ageing, illness and treatment and the script doesn't.

Look at what prostate cancer treatment can actually change: erections, desire, orgasm, ejaculation, body image, incontinence and libido. If you run that list against the linear script, almost every stage of it is affected – but the script only has one obvious failure point, and that's the erection.

So that's where the man's attention goes. It can leave men or couples feeling frightened, out of practice and quietly grieving the sex they used to have all while measuring themselves against a sequence their bodies can no longer perform in that order.

1.3 How sex works, and how cancer changes it

Basson's circular model

Rosemary Basson proposed something different, initially describing women's experience, and it has since been applied a good deal more widely – including to men after prostate cancer.

In her model many people begin from sexual neutrality rather than from desire. They choose to be receptive for reasons that are often relational rather than physical: closeness, reassurance, the wish to give something to a partner.

Arousal follows that choice, and desire, if it arrives at all, arrives after arousal rather than before it, and satisfaction may or may not involve orgasm.

Here is what it changes in practice. If desire follows arousal rather than arriving before it, then someone who no longer gets spontaneous erections has lost the thing that used to start the whole sequence. The desire may still be there. What's gone is the entry point, and that's a different problem with different answers.

1.3 How sex works, and how cancer changes it

Why the model you hold changes the history you take

The model in your head decides the questions you ask. It's rarely a conscious choice, and it shapes everything that follows.

1.3 How sex works, and how cancer changes it

Put the history in order

A 63-year-old man is eight months on from a radical prostatectomy, and he tells you his sex life is ruined.

Six questions are worth asking. Which one do you ask first?

Select the six questions in the order you would ask them. Each one takes its number as you select it.

1.3 How sex works, and how cancer changes it

Sexual values, and why they matter more than function

Beck, Robinson and Carlson proposed a way of thinking about sexual motivation that turns out to be particularly useful in this population: the physical pleasure and relational intimacy model¹.

Some people are motivated principally by physical pleasure, others by relational intimacy, and most by some combination of the two. The ratio is stable for them, and largely invisible to everyone else.

When prostate cancer treatment removes reliable erections, the person motivated mainly by relational intimacy will often adapt. The person motivated mainly by physical pleasure frequently doesn't and encouraging them to focus on closeness will land as a consolation prize rather than a plan.

Same diagnosis, same operation, two entirely different problems.

1.3 How sex works, and how cancer changes it

1.4 What each treatment does

Each treatment, and a different effect in each case

People are routinely told that treatment may affect sexual function.

Here are the four this lesson covers. What follows over the next few screens is what each one does, in the terms someone will experience it.

• Radical prostatectomy
• Radiation therapy
• Androgen deprivation therapy
• Chemotherapy, and active surveillance

1.4 What each treatment does

Radical prostatectomy

Turn each card to see what radical prostatectomy does to it.

ErectionsTurn

Some degree of nerve injury is close to universal, even with nerve-sparing technique, because the bundles run across the surface of the gland. Where recovery happens it occurs over 12 to 24 months, and it isn't guaranteed.

EjaculationTurn

Gone, permanently. The prostate and seminal vesicles produce almost all of the ejaculate and both are removed, though orgasm remains possible and people describe it as dry.

Penile lengthTurn

Shortening is common and consistently under-discussed. People who aren't warned tend to experience it as a further loss inflicted without their consent.

ClimacturiaTurn

Leaking urine at orgasm. Common early on, improving for most people, and almost never mentioned in advance.

OrgasmTurn

May be altered in intensity, delayed, or occasionally painful.

1.4 What each treatment does

Radiation therapy

Radiation does not take erections away at once, the way surgery does. The chart below sets the two side by side across five years.

Here are the three changes followed by the reason they are so often missed.

• Erections. The decline is gradual rather than immediate, arriving over the years after treatment as radiation damages nerves, blood vessels and the smooth muscle that holds an erection. People are often reassured in the first year and then caught out later.
• Ejaculation. Volume declines gradually and variably, and may cease altogether. Orgasm can be painful, for some people.
• Bowel and urinary symptoms. Both bear directly on sexual confidence, and people very rarely volunteer either of them in a conversation framed as being about sex.
• The timing problem. Because the decline is slow (between 1 and 3 years)¹, people are frequently discharged from follow-up before the sexual consequences arrive, so by the time they notice, nobody is still asking. That gap between treatment and consequence is where most of them are lost.

1.4 What each treatment does

Androgen deprivation therapy

ADT does something categorically different from the other treatments. Surgery and radiation damage the machinery; ADT removes the drive.

Open each marker to see what androgen deprivation therapy does to it.

++++

Desire

Around 90 per cent of men on ADT report reduced libido, and for many it goes altogether². This is the effect people find hardest to describe, because they aren't distressed about sex so much as no longer interested in it, and that in itself is distressing.

Erections

Reduced independently of desire.

Body and self

Weight gain, muscle loss, breast tenderness or growth, hot flushes, fatigue, mood change, and frequently a felt loss of masculinity that men rarely name directly.

Partners

ADT changes the relationship more than any other treatment, precisely because the person's interest in sex has gone rather than their ability to perform it. Partners routinely interpret this as rejection, and nobody has explained to them what the drug does³.

1.4 What each treatment does

Chemotherapy, and active surveillance

Chemotherapy is used in advanced disease, where fatigue, nausea and altered body image typically dominate. Sexual concerns are frequently deprioritised by everyone involved, including the patient, and that's a decision worth making explicitly rather than by default.

Active surveillance involves no treatment, and therefore, in principle, no sexual side effects. In practice people on surveillance report erectile difficulty at higher rates than age-matched men without cancer, driven by anxiety, by repeated biopsy, and by the experience of carrying an untreated cancer.

Someone on active surveillance who develops erectile difficulty has a sexual problem caused by their cancer without ever having been treated for it. They usually won't connect the two, and neither, in our experience, will their clinician.

1.4 What each treatment does

Back to Anthony

You met Anthony at the start of this module, a month before his radiation therapy begins. What follows is his first proper conversation about sex with a clinician.

Everything you've just read about what each treatment does is about to arrive in the room as Anthony's question.

1.4 What each treatment does

Pause and choose · Anthony

This is Anthony's first conversation about sex with a clinician. You'll watch a short clip from it and decide what the clinician should say next.

How it works

1. Press play. The clip runs for about 20 seconds, then stops.
2. Choose what you would say next.
3. Read the feedback on your choice. Then press play to see what the clinician actually said.

You can replay the clip as many times as you need, before or after you choose.

What you'll see

Anthony is 62 and starts radiation therapy in a month. The clinician has been asking about his desire, and now asks about his erections. Anthony says his interest in sex rises and falls with how well he feels, and that his erections are fine. The clinician reminds him that treatment starts in a month, and the clip stops.

What do you say next? Choose one. There is a best answer here, and it's what the clinician actually said. The feedback explains what each of the other three would do.

1.4 What each treatment does

What that rehearsal was doing

Option B isn't better because it's softer, but because of what it buys you.

Most people hold a private model of what's going to happen to them. It gets assembled from a rushed sentence in an oncology appointment, something they read at two in the morning, and a friend's experience of an entirely different treatment.

Until you've heard that model, everything you tell them lands on top of it rather than replacing it. That's why people so often appear not to have absorbed information they were definitely given.

Elicit before you inform. It costs a sentence, and you'll use it in every consultation for the rest of this course.

1.4 What each treatment does

What people are not told

The 2022 guidelines say patients and partners should be counselled about every one of the following. These are the ones that most often go unsaid.

• That ejaculation ends permanently after surgery, and that this is a different thing from erectile difficulty
• That the penis may be shorter afterwards
• That they may leak urine at orgasm
• That desire itself can disappear on ADT, rather than simply performance
• That radiation effects arrive years later, long after discharge
• That partners are affected too, and can be seen

Each of these is easy to say in advance and distressing to discover alone.

Someone else treated most of the people you'll meet, so none of these omissions are yours. You may still be the first person willing to name them.

1.4 What each treatment does

Knowledge check

A 66-year-old man had external beam radiotherapy three years ago. He reports that his erections have become unreliable over the past year, and he was told at the time of treatment that his sexual function should be fine.

What is the most likely reason his erections have become unreliable?

1.5 What partners carry

The person nobody asks

Partners are affected by every one of the changes in the last lesson, and they're almost never included in the conversation about any of them.

Research on partners' experiences finds their own needs for intimacy are overlooked when couples approach services, and that partners are routinely left out of discussions about sexual side effects. The Guidelines are explicit that sexual health care in prostate cancer is dyadic, and clinical practice, overwhelmingly, isn't.

This lesson is short. It's here because the most common gap in otherwise competent care is that only one of the two people was ever asked anything.

1.5 What partners carry

What partners report

• Being read as the problem.

  When desire disappears on ADT, partners routinely interpret it as rejection, or as a signal that the relationship is ending, because nobody has told them what the drug does.

• Intimacy, not just sex.

  Many partners describe the loss of everyday closeness as the bigger loss. Holding hands and cuddling stop as well, and that's a loss of sexual wellbeing beyond the act itself.

• Silence mistaken for coping.

  People withdraw to protect their partner, and the partner reads that withdrawal as rejection.

• Their own sexual health, unexamined.

  Partners have bodies too. A partner in their sixties may have pain or dryness that predates the cancer entirely and that nobody has ever asked about, because they've been categorised as the well one.

• Guilt about wanting sex.

  Partners frequently describe a sense that raising it at all would be selfish while their partner has cancer.

• No standing.

  Many report having no legitimate place from which to ask a question, because the appointment belongs to the patient.

Sexual wellbeing is more than penetration. Many female partners report the loss of intimacy as being the major loss. Not holding hands or cuddling anymore results in a loss of sexual wellbeing that is beyond the physical act of sex.

Relationships that survived the cancer don't always survive the silence.

1.5 What partners carry

What this means for your practice

Three things, and none of them requires a service redesign.

Select each card to see what it sounds like in the room.

• +1 of 3Ask who else is affected.
• +2 of 3Offer the invitation explicitly.
• +3 of 3Ask the partner a question of their own.

You'll practise all three in Module 3 with Chris and Patti.

Every phrasing in this module is collected in a conversation guide on the Resources screen.

1.5 What partners carry

What now?

You've reached the end of Module 1.

You've looked at what the silence costs and at getting ready to ask. You've looked at how sexual response works, at what each treatment does in the terms someone experiences it, and at the person sitting beside them who nobody asks.

In Module 2: Assessment and models of care, you'll take a full sexual history, learn the words for the parts most people avoid, and turn what you've heard into a plan.

Your toolkit so far

• Conversation guide: Modules 1 and 2, with every phrasing and the pre-treatment discussion prompt

Your reflections

Review everything you wrote during this module, and email or print a copy to keep for your own records.

Resources from this module

Tick the resources you'd like to keep, then email them to yourself. The conversation guide is ticked for you.

Your reflections

Everything you wrote in this module is saved on this device. You can read it back, print it or email it to yourself.

Changelog

Current version: v0.48