Decisions and supportProstate cancer

Back to the Prostate cancer hub →56 questions · 6 red cards · 1 decision aid

The decisions you may face, the aids that walk through them, the warnings on record, the first sixty days and the questions to ask.

Decisions and support

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The first 60 days →Appointment prep sheet →Side effects →Help with costs →

Decisions you may face

10 with more than one option · full decision page →

One section per setting: the options named, what each is for, the trials behind them, the recorded trade-offs and the questions to ask.

Screening2 Biochemical recurrence3 Metastatic hormone-relapsed disease: what is in trials once the approved order runs out6 Localised prostate cancer: monitoring, surgery or radiotherapy, and what each one costs you6 If you choose radiotherapy: the schedule, and the hormone therapy that comes with it4 Living with hormone therapy: hot flushes, bones, heart, weight and mood, and what is offered for each8 Continence and sexual function: what happens, what help exists, and how to ask for it4 A rising PSA after treatment: what it means, how fast it is rising, and what happens next When prostate cancer reaches the bone: cord compression, pain, and protecting the skeleton5 A clinical trial or standard treatment When to talk about palliative care6 Localised prostate cancer, CPG 1 (low risk): the case for doing nothing yet2 Localised prostate cancer, CPG 2 to 3 (intermediate risk): surgery or radiotherapy, and how many visits Localised and locally advanced prostate cancer, CPG 4 to 5 (high risk): radiotherapy with long androgen deprivation After radical prostatectomy with adverse pathology: wait for the PSA rather than irradiate everyone Metastatic hormone-sensitive prostate cancer: androgen deprivation is never given alone Hormone-relapsed non-metastatic prostate cancer with a fast-rising PSA Hormone-relapsed (castration-resistant) metastatic prostate cancer: the order the approved treatments are given in Combinations and strategies that were tested and abandoned

Decision aids

All decision aids →

Answer a few questions from a report and read the guideline statement that applies, quoted word for word with its source. Educational aids to prepare for an appointment, not advice.

Localised prostate cancer

Red cards

What to watch for and who to call, from the labels and guidelines behind the standard of care. Your team's thresholds win.

Emergency services now
Blood clot (tamoxifen and others)
A swollen painful calf, or sudden breathlessness with chest pain; the tamoxifen boxed warning covers pulmonary embolism and stroke.
Abiraterone acetate Bicalutamide Enzalutamide Relugolix source
Emergency services now
Cytokine release syndrome
Fever of 38 C or higher, chills, low blood pressure, fast heartbeat or breathlessness, especially after a step-up dose. Boxed warning on teclistamab, epcoritamab, glofitamab, tarlatamab and blinatumomab.
Pasritamig Tarlatamab Xaluritamig source
Emergency services now
Sudden severe pain in a hip, thigh, arm or rib, especially after a minor knock
Hormone therapy thins bone from the first year of treatment: in a study of 50,613 men, 19.4 percent of those on androgen deprivation who survived at least five years had a fracture, against 12.6 percent of those not on it. A bone weakened by cancer or by treatment can break with very little force, so sudden severe pain with an inability to bear weight is an emergency assessment.
Bone metastases and skeletal-related events Denosumab Zoledronic acid source
Emergency services now
Bone pain flare or fracture (radium-223)
Sudden severe bone pain, or back pain with weakness or numbness in the legs (possible spinal cord compression).
Actinium-225 PSMA agents Radium-223 dichloride source
Emergency services now
Chest pain, breathlessness, or the signs of a stroke while on hormone therapy
Prostate Cancer UK says evidence suggests hormone therapy might increase the chance of developing heart disease, stroke and type-2 diabetes; in 73,196 men, GnRH agonist use carried an adjusted hazard ratio of 1.16 for coronary heart disease and 1.16 for sudden cardiac death. Chest pain or stroke symptoms are 999 whatever the cause.
Bone metastases and skeletal-related events Cancer-related fatigue (tiredness)source
Emergency services now
Signs of sepsis
The NHS says to call 999 or go to A and E for breathing very fast, confusion or slurred speech or not making sense, blue, pale or blotchy skin, lips or tongue, a very high or very low temperature, feeling hot or cold to the touch or shivery, or a rash that does not fade when pressed.
Febrile neutropenia Neutropenia source

See all on the product pages:Abiraterone acetate Actinium-225 PSMA agents Bicalutamide Bone metastases and skeletal-related events Cancer-related fatigue (tiredness)Denosumab Enzalutamide Febrile neutropenia Neutropenia Pasritamig Radium-223 dichloride Relugolix Tarlatamab Xaluritamig Zoledronic acid·Printable cards in the navigator

Treatment journeys

What the next twelve months look like, phase by phase, with the decision points.

High-risk localised

Questions to ask

Bring to your appointment

Questions to ask your oncologist about Prostate cancer

Curated set · 56 questions

Newly diagnosed

Who is my prostate cancer clinical nurse specialist, and what number do I ring between appointments?
Why: Every urgent card on this page starts with that number. Prostate Cancer UK also runs a free line staffed by specialist nurses on 0800 074 8383 for the questions you think of at nine in the evening.
What is my Cambridge Prognostic Group, and which three numbers decided it?
Why: NICE NG131 (1.2.15) asks the urological cancer multidisciplinary team to assign a risk category to everyone newly diagnosed with localised or locally advanced disease, and writes a separate recommendation for each of the five groups. The group comes from your Gleason score or grade group, your PSA and your T stage.
What is my Gleason score or grade group, my PSA, and my stage, in writing?
Why: Nothing else on this page can be used without those three numbers, and you will be asked for them by every service you are referred to. A UK report carries both the Gleason score and the grade group, because they are two ways of saying the same thing: Gleason 3+4 is grade group 2, 4+3 is grade group 3, 8 is grade group 4.
What percentage of my cancer is Gleason pattern 4, and does my report mention intraductal or cribriform carcinoma?
Why: The UK pathology reporting dataset added both as core items in its October 2024 revision, so they now appear on reports without explanation. The percentage of pattern 4 separates a Gleason 3+4 that is nearly all pattern 3 from one that is nearly all pattern 4, and intraductal or cribriform carcinoma is the pattern that argues against monitoring, so it is worth asking what yours says and what it changes.
You said hormone-relapsed, or castration-resistant. Do those mean the same thing?
Why: They do. NICE uses hormone-relapsed throughout NG131; hospitals and papers more often say castration-resistant or castrate-resistant. All three describe prostate cancer that has started growing again despite testosterone being switched off, and hearing two names for it is a vocabulary problem rather than a change in your diagnosis.
Has the cancer spread outside the prostate, and which scans was that based on?
Why: NICE NG131 (1.2.16) says not to routinely offer isotope bone scans to people with CPG 1 or 2 localised disease, so not having had one is often a statement about your risk rather than a gap.
Is the aim of treatment to cure the cancer, or to control it?
Why: NICE's own definitions separate active surveillance, which is part of a curative strategy, from watchful waiting, which is a strategy for controlling rather than curing. The two words sound alike and mean different things, so ask which one is being proposed.
How long do I have to decide, and what happens if I take a few weeks?
Why: Prostate Cancer UK's page on choosing a treatment is built on the idea that this decision is yours to make with time; for most localised prostate cancer a few weeks changes nothing, and hearing that said out loud takes the panic out of the first fortnight.
Can my partner or a friend come to the next appointment?
Why: NICE NG131 (1.1.12) says to tell people and their partners or carers about the effects of the cancer and the treatments on sexual function, physical appearance, continence and other aspects of masculinity, and to support both of them in making treatment decisions.
Should anyone in my family be tested, and should I have genetic testing?
Why: The NHS says a GP may ask whether anyone in the family has had prostate, pancreatic, ovarian or breast cancer, because certain genes raise the risk of all of them, and that men over 40 with a faulty BRCA2 gene should see a GP about prostate cancer risk.
Has sperm storage been offered to me?
Why: NICE NG131 (1.3.2) says to explain the potential loss of ejaculation and fertility associated with radical treatment and to offer sperm storage, and (1.4.7) repeats the offer for men starting long-term hormone therapy. There is no age at which the offer stops applying.
Which decision aid does this clinic use, and can I take it home?
Why: NICE NG131 (1.1.6) says to use an up-to-date decision aid in all urological cancer multidisciplinary teams, offered by someone trained in its use, and (1.1.9) to discuss all relevant management options even if they are not available locally.

Urology appointment

Has my case been to the urology multidisciplinary team, and what did they recommend?
Why: NICE NG131 (1.2.15) makes the multidisciplinary team responsible for assigning the risk category, and (1.5.11) sends treatment options for hormone-relapsed disease back to the same meeting.
Have I had a multiparametric MRI, and what was the Likert score?
Why: NICE NG131 (1.2.2) says to offer multiparametric MRI as the first-line investigation for suspected clinically localised prostate cancer and to report the result on a 5-point Likert scale, and (1.2.3) to offer an MRI-influenced biopsy to people scoring 3 or more.
If I go on active surveillance, can I have the monitoring timetable in writing?
Why: NICE NG131 (1.3.14, table 2) sets out the protocol: PSA every 3 to 4 months in year 1, a digital rectal examination at 12 months, an MRI at 12 to 18 months, then PSA every 6 months and an examination every year. Knowing the timetable is the difference between being monitored and being forgotten.
What exactly would make you recommend moving from monitoring to treatment?
Why: NICE NG131 (1.3.16) says to offer radical treatment to people on active surveillance who now have evidence of disease progression, and (1.3.15) that a move to treatment at any stage is a shared decision based on your preferences, comorbidities and life expectancy.
Do I have any urinary symptoms now, and should they be assessed before treatment?
Why: NICE NG131 (1.3.4) says to offer a urological assessment to people who have troublesome urinary symptoms before treatment, because symptoms that are already there change what treatment will feel like afterwards.

Surgeon appointment

Would this be nerve-sparing, and how likely is that in my case?
Why: Prostate Cancer UK says the erectile nerves surrounding the prostate may be removed or damaged during the operation, which often causes problems getting or keeping an erection, and that recovery, where it happens, takes months to years.
In your own patients, what proportion are pad-free at twelve months, and how do you count that?
Why: In the ProtecT trial, pad use went from 1 percent before treatment to 46 percent at 6 months after surgery, and was still 17 percent at 6 years, against 4 percent in the radiotherapy group. Surgeons' own series vary, so the honest question is what happens here.
How long will the catheter be in, and what happens on the day it comes out?
Why: Prostate Cancer UK says you will usually have a catheter for about seven to ten days, that most men cannot control their bladder properly when it is first removed, and to take pads, spare underwear and loose trousers to the appointment where it comes out.
Can I see the continence physiotherapist before the operation?
Why: Prostate Cancer UK says it is a good idea to start pelvic floor muscle exercises four to six weeks before surgery so that you can do them properly afterwards, and that it might help you stop leaking sooner. The exercises are not done while the catheter is in.
What does the pathology report after the operation change?
Why: The report gives the true grade and stage and whether the cancer reached the edge of what was removed, and those determine whether radiotherapy afterwards is discussed. NICE NG131 (1.3.32) says not to offer immediate post-operative radiotherapy routinely, even with involved margins, outside a trial.

Oncologist appointment

Which radiotherapy schedule, and how many visits is that?
Why: NICE NG131 (1.3.19) says to offer hypofractionated radiotherapy, 60 Gy in 20 fractions, using image-guided intensity modulated radiation therapy unless contraindicated, or conventional radiotherapy, 74 Gy in 37 fractions, for people who cannot have the shorter course.
Is a brachytherapy boost offered here, and would it suit me?
Why: NICE NG131 (1.3.24) says to consider brachytherapy in combination with external beam radiotherapy for CPG 2, 3, 4 and 5 disease, and (1.3.25) not to offer brachytherapy alone for CPG 4 and 5.
How many months of hormone therapy go with the radiotherapy, and why that long?
Why: NICE NG131 (1.3.21) says to offer radical radiotherapy combined with androgen deprivation therapy rather than either alone for CPG 2 to 5, (1.3.22) six months of it before, during or after, and (1.3.23) to consider up to 3 years for CPG 4 and 5 and to discuss the benefits and risks of that option with you.
What are the bowel side effects, in the first weeks and years later?
Why: NICE NG131 box 2 reports that moderate to severe impact of bowel habits on quality of life at 6 months affected 10 in 100 men offered radiotherapy against 3 in 100 in each of the other groups, and the ProtecT 12-year results found faecal leakage in 12 percent of the radiotherapy group against 6 percent of the others by year 12.
What do I do about my bladder and bowel before each session?
Why: Prostate radiotherapy is planned around a bladder and rectum in a reproducible state, so the preparation instructions are part of the treatment rather than housekeeping.

Hormone therapy review

How long am I on this, and what is the plan for stopping?
Why: Prostate Cancer UK says side effects usually last for as long as you are on hormone therapy, that testosterone rises gradually afterwards but recovery can take several months to several years, and that surgery to remove the testicles cannot be reversed.
Should I have a bone density scan before I start, and again later?
Why: NICE NG131 (1.4.13) says to consider assessing fracture risk in people having androgen deprivation therapy; Prostate Cancer UK says a DEXA scan before starting checks whether any bone is already weak and that some men need repeat scans. In a study of 50,613 men, 19.4 percent of those on androgen deprivation who survived at least five years had a fracture against 12.6 percent of those not on it.
Who is checking my blood pressure, cholesterol and blood sugar, and how often?
Why: Prostate Cancer UK says hormone therapy raises weight around the waist, cholesterol and insulin, and suggests general health checks about every six months. In 73,196 Medicare enrollees, GnRH agonist use carried an adjusted hazard ratio of 1.44 for new diabetes and 1.16 for coronary heart disease.
My hot flushes are disrupting my life. What can I take?
Why: NICE NG131 (1.4.3) says to offer medroxyprogesterone 20 mg a day, initially for 10 weeks, for troublesome hot flushes caused by long-term androgen suppression, and (1.4.4) to consider cyproterone acetate 50 mg twice a day for 4 weeks if that does not work or is not tolerated.
Can I be referred to a supervised exercise programme?
Why: NICE NG131 (1.4.19) says to offer people starting or having androgen deprivation therapy supervised resistance and aerobic exercise at least twice a week for 12 weeks to reduce fatigue and improve quality of life. This is a recommendation to offer, not a suggestion to try harder.
Would intermittent hormone therapy be an option for me?
Why: NICE NG131 (1.4.1) says to consider intermittent therapy for people on long-term androgen deprivation outside the adjuvant setting, and to discuss the rationale, the limited evidence for a reduction in side effects, and the effect on progression, and (1.4.2) to measure PSA every 3 months and restart at 10 nanogram/ml or above.

Sexual function and continence

Can I be referred to the erectile dysfunction service before treatment rather than after?
Why: NICE NG131 (1.3.36) says to offer people who have had radical treatment access to specialist erectile dysfunction services, and (1.4.8) to ensure people starting androgen deprivation have that access too. Prostate Cancer UK says treatments work better when started soon after treatment, and that regular erections help keep the penis healthy.
Which treatment for erections would you start me on, and how many times do I try it before we change?
Why: NICE NG131 (1.3.37) says to offer PDE5 inhibitors, and (1.3.38) vacuum devices, intraurethral inserts, penile injections or penile prostheses if those do not work. Prostate Cancer UK says to try each type of tablet at least eight times before changing, and that all of this is free on the NHS with no age limit.
Is there a psychosexual counsellor my partner and I can see?
Why: NICE NG131 (1.1.13) says to offer people with prostate cancer and their partners or carers the opportunity to talk to a healthcare professional experienced in dealing with psychosexual issues at any stage of the condition and its treatment, and (1.4.9) to consider referring people on long-term androgen deprivation and their partners for psychosexual counselling.
Who do I see about leaking, and what do they do?
Why: NICE NG131 (1.3.39) says to ensure access to specialist continence services for assessment, diagnosis and conservative treatment, which can include coping strategies, pelvic floor muscle re-education, bladder retraining and medicines.
At what point would you refer me for a sling or an artificial urinary sphincter?
Why: NICE NG131 (1.3.40) says to refer people with intractable stress incontinence for consideration of an artificial urinary sphincter, and (1.3.41) not to offer bulking agent injections. Prostate Cancer UK says a sling may be an option if you are still leaking two to three pads a day a year after treatment, and a sphincter if you leak a lot at least six months after it.
Who supplies my pads, and do I pay for them?
Why: Prostate Cancer UK says services vary from area to area and that your GP or the hospital continence nurses may provide some pads free, and describes the sheaths, bed protectors, handheld urinals and clamps that exist alongside them.

Palliative care appointment

Can I be referred to palliative care alongside my cancer treatment?
Why: NICE NG131 (1.5.4) says to ensure palliative care is available when needed and is not limited to the end of life, and that care should not be restricted to being associated with hospice care; Marie Curie says palliative care can be given alongside treatments aimed at controlling the illness.
What is the plan for pain, and who adjusts it between appointments?
Why: NICE NG131 (1.5.20) says to consider oral or intravenous bisphosphonates for pain relief in hormone-relapsed metastatic disease when analgesics and palliative radiotherapy have not given satisfactory relief, so uncontrolled bone pain is a reason to ring the team rather than to take more tablets.
Have my preferences about where I am cared for been written down?
Why: NICE NG131 (1.5.3) says to discuss personal preferences for palliative care as early as possible with people with metastatic prostate cancer, their partners and carers, to tailor care plans accordingly and to identify the preferred place of care.
Who reviews everything I am taking, and how often?
Why: NICE NG131 (1.5.5) says to offer a regular assessment of needs to people with metastatic prostate cancer, which is the guideline asking for the review rather than waiting for you to request it.

For carers

What should I do if he suddenly cannot pass urine at all?
Why: Prostate Cancer UK says acute urine retention, when you suddenly and painfully cannot urinate, needs treating straight away: call the doctor or nurse or go to the nearest accident and emergency department, and make sure they know what prostate cancer treatment he has had.
What are the signs of spinal cord compression, and who do I ring at three in the morning?
Why: Prostate Cancer UK says to get medical advice straight away for new back pain, weakness or numbness in the legs, or problems controlling the bladder or bowel, not to wait to see if it gets better, not to worry that it is an inconvenient time, and to go to A&E if you cannot reach anyone. Ask the team to write down who to contact during the day, at night and at weekends.
Am I entitled to a carer's assessment, and what does it get me?
Why: The NHS says a carer's assessment is free, is for anyone over 18 caring for someone, and looks at how caring affects your life and what might help; it also lists Carer's Allowance and other benefits.
How do I raise sex without making it worse?
Why: Prostate Cancer UK says many men avoid asking for help or trying treatments, that you may need to bring it up more than once or with a different person in the team, and that a partner is often the one who notices the change first. Saying it plainly is usually kinder than waiting to be asked.
He is not himself. Is that the cancer, the treatment, or something treatable?
Why: Prostate Cancer UK says hormone therapy itself can affect mood, cause tearfulness and mood swings, and bring low mood, anxiety or depression; a meta-analysis of 18 studies in 168,756 men found androgen deprivation carried a 41 percent higher risk of depression. Any of that is a reason to ring the team rather than to wait.
Where do we go for support that is not the hospital?
Why: The NHS lists Prostate Cancer UK, Cancer Research UK, Macmillan and the Prostate Cancer Research infopool; Prostate Cancer UK runs one-to-one peer support, a Black men's support service and an online community; Maggie's centres are free and need no appointment.

Localised prostate cancer: monitoring, surgery or radiotherapy, and what each one costs you

Has anyone taken me through box 2 of NICE NG131, the table of benefits and harms?
Why: NICE NG131 (1.3.7) says to use box 2 to discuss the benefits and harms of active surveillance, prostatectomy and radical radiotherapy with people with CPG 1, 2 and 3 disease. It is the table with the numbers in it, and it exists so that this conversation is not held in adjectives.
Have I been seen by both a surgeon and a clinical oncologist, and did they agree?
Why: NICE NG131 (1.3.5) says candidates for radical treatment should have the opportunity to discuss the range of treatment options and their serious side effects with a specialist surgical oncologist and a specialist clinical oncologist. Seeing both is the standard, not a second opinion you have to argue for.
What would you choose if you were me, and what would change your mind?
Why: ProtecT found no significant difference in death from prostate cancer at 15 years between the three options, so this is a decision about what you are willing to live with rather than a calculation with one right answer. Asking what would change the recommendation usually reveals what it was really based on.

Living with hormone therapy: hot flushes, bones, heart, weight and mood, and what is offered for each

Which of these effects should I ring about, and which do I just live with?
Why: Prostate Cancer UK says there are treatments and support for most of the side effects of hormone therapy, and that if they continue to affect daily life it might be possible to try a different treatment or take a break. Knowing which category a symptom is in saves months of putting up with something treatable.
What is being done about my bones?
Why: NICE NG131 (1.4.12) says not to routinely offer bisphosphonates to prevent osteoporosis in people on androgen deprivation therapy, (1.4.13) to consider assessing fracture risk, (1.4.14) to offer bisphosphonates to those who have osteoporosis, and (1.4.15) to consider denosumab where bisphosphonates are contraindicated or not tolerated. The order of those four sentences is the answer to most bone questions.

Continence and sexual function: what happens, what help exists, and how to ask for it

What will actually happen to my erections and my continence, month by month?
Why: In ProtecT, 67 percent of men could get an erection firm enough for intercourse before treatment; at 6 months that was 12 percent after surgery, 22 percent after radiotherapy and 52 percent on monitoring. Pad use after surgery was 46 percent at 6 months and 17 percent at 6 years. Those are trial-wide figures, not a forecast for you, but they are the shape of it.
If I am still leaking at a year, what happens then?
Why: Prostate Cancer UK says that if you still leak six to twelve months after surgery and pelvic floor exercises have not helped, medicines, an internal male sling, an artificial urinary sphincter or adjustable balloons may be options. There is a next step, and asking for it is not giving up on the exercises.

Newly diagnosed? Read the first 60 days with Prostate cancer, then print the one-page appointment sheet with room for the answers.

Print this page for your appointment (your browser's print command). These prompts are for discussion; your clinical team knows your case.

ProvenanceLast edited 2026-09-25 · Jude Gomila · Prostate review · diff · file · history

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