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What is the prostate gland and what does it do?

If you look at a prostate gland in isolation it resembles a small ring doughnut in shape.

It sits just below the bladder and wraps around the urethra, the pipe that carries urine out of the body.

The prostate’s main role is to produce the fluid that mixes with sperm to produce semen.

Why do some men get ‘prostate trouble’ as they get older?

That’s because the prostate gland is constantly growing.

It doubles in size during puberty, and from the age of 25 it’s slowly getting bigger all the time – it’s thought due to hormonal changes as men age – so, having started as the size of a walnut, it can develop in some cases into the size of a lemon – and almost a third of men over the age of 60 develop symptoms as a result.

That’s because this enlargement can put pressure on the water pipe that carries urine out of the bladder and the bladder itself. Known medically as benign prostatic enlargement (BPE) or benign prostatic hyperplasia (BPH), the condition can lead to poor flow, and some men may have the urge to go more frequently at night or the feeling that they can’t empty their bladder properly.

This is a normal part of the ageing process and does not increase your risk of developing prostate cancer.

What is prostate cancer and why did I get it?

Cancer occurs when cells grow and spread in an uncontrolled way. With prostate cancer this arises within the tissues of the prostate.

When someone is first diagnosed with cancer, one of their first thoughts is often ‘why me?’ Many men diagnosed with prostate cancer wonder if they could have prevented it, if they have done something wrong – but that’s almost always not the case.

The main risk factor for prostate cancer is age. Most cases are diagnosed among men aged 60-65 – it is rare for men to develop it under the age of 40.

Other risk factors include having a family history of prostate cancer, and being part of certain ethnic groups, such as those of African ancestry who are, according to some estimates, twice as likely to develop it as others. Western populations in the USA and Northern Europe also show a higher incidence than elsewhere. This may be partly due to more screening, but it is possible that environmental factors – for example, exposure to certain chemicals – are involved, though this has yet to be confirmed.

Other risk factors under investigation include links to eating more dairy. While some small studies have suggested this may be a factor, other studies have failed to find any proof that it is.

What are the symptoms of prostate cancer?

Prostate cancer doesn’t cause ANY symptoms IN its early stages – but most cases are caught early through testing. That’s why if you are a man over 50 you should talk to your doctor about having a PSA test. If you are in a higher risk group – for example, if you are of African or Caribbean ancestry – then ask for one after the age of 40.

Prostate cancer starts to cause symptoms until it starts to grow and push on the tube that carries urine out of the body. At this stage it may cause poor flow, difficulty starting to pee, a feeling of urgency when you get the urge to pee, a need to pee more often than normal or a sensation that the bladder isn’t empty, despite having just peed.

However, remember that, while these symptoms can be a sign of cancer, they are also a sign of an enlarged prostate, a natural part of the ageing process.

Once the cancer starts to become more advanced, it may lead to other symptoms such as bone pain – often in the hips, back or chest – or unexplained weight loss.

Can prostate cancer spread elsewhere in the body?

It is often said that many men die with, rather than of, prostate cancer.

It is true that in the majority of cases the cancer is slow-growing and may take years before it is even detectable. That is why some men may be given the option to defer treatment (active surveillance for low-risk prostate cancer or watchful waiting for older men).

However, that is not to say all prostate cancer cases fall into this category. The cancer can spread, and when it does, it typically grows into the surrounding tissues and organs, such as the bladder. It can also spread via the lymph vessels (part of the immune system) to the pelvis and abdomen, or via the blood to, for example, the bone. That’s why you should seek medical attention urgently if you suspect you may have the cancer.

What is a digital rectal examination?

For this, the doctor inserts a finger gently into your back passage – from where they can examine the prostate with their finger. This allows them to assess the size and consistency of your prostate. Ideally, it should feel smooth. If it is tender, that may suggest inflammation or infection, whereas a hard mass may suggest the presence of cancer cells.

Some men find it embarrassing – although it shouldn’t be painful – but it is an important check, as it can help your clinician determine whether further investigations are necessary.

Prostate Examination

What is a PSA blood test?

This is a blood test that checks your levels of a protein called prostate-specific antigen (PSA). This protein is made by the prostate and the amount that is shed into the blood can give doctors an idea of the general health of the gland.

What is defined as a normal PSA level varies according to age and ethnicity, but generally anything below 3 ng/ml of blood is normal for men aged 50-70 and a level below 5 ng/ml is normal for men aged 70-80. However, a higher reading doesn’t mean you have cancer. Levels can rise due to, for example, an infection, enlargement of the prostate, vigorous exercise, or even as a result of having had sex.

What happens if I have an abnormal PSA result?

Normally, your doctor will look at your individual circumstances to decide if further tests are necessary. They make this decision taking into account, for example, your age, symptoms and whether there is a family history of prostate cancer. They may decide that the best course of action is to have your doctor recheck your PSA again in six months or a year – only a small proportion of those men who have a raised PSA will have prostate cancer. Or they may decide to send you for an MRI or a biopsy.

What is PSA doubling time?

The time it takes for PSA levels to double. The quicker the PSA doubles, the higher the chance that this is due to the presence of cancer. This might be mentioned if you have a higher-than-normal PSA or if you have had treatment and are having regular check-ups.

Are there alternative blood tests to the PSA?

In the UK, as yet, there is no alternative blood test that is widely available – although a new test that looks for differences in immune cells called white blood cells is showing promise in trials.

In the US there are other options. PSA comes in two forms – one is attached to proteins in the blood and the other circulates freely in the blood. The 4k test looks at other specific PSA-like proteins also known to be prostate biomarkers and combines it with a clinical examination. There is also the Stockholm 3 test (STHLM3) that looks at five different prostate blood biomarkers.

What are PSA velocity and density?

The terms may sound complex, but what they represent is straightforward. If you have a large prostate gland – simply through age or swelling, for example – you will most probably have higher levels of PSA anyway. The PSA density calculation accounts for that by measuring the volume of the prostate with ultrasound and dividing that by the PSA level. A high PSA in a small prostate suggests a higher chance of finding cancer at prostate biopsy.

PSA velocity is the rate at which the PSA level climbs. This is similar to PSA doubling time – except it measures the rate of the rise, not the time that it takes to double. The higher the rate, the higher the chance of finding cancer during a biopsy, or the higher the likelihood the cancer has returned after treatment.

What is an MRI?

This is a special scan using a powerful magnetic field to create a detailed image of the prostate and the surrounding tissues – the image is detailed enough to spot potential cancer growing there. Depending on the hospital you go to, or your circumstances, you may be offered a multi-parametric MRI instead. This gives four different types of images – so provides an even more detailed image than the MRI – and can help a doctor determine how quickly any cancer present is likely to grow.

Why do I need an MRI?

This is offered if your PSA and other previous assessments suggest that it warrants it. It helps give your doctor a better idea of what is going on in the prostate and helps them decide if you need a biopsy of the prostate.

Unlike a biopsy an MRI is noninvasive, although the machine can be noisy and some men may find lying in the scanner uncomfortable if they don’t like being in confined spaces. However, it should take no more than 30-40 minutes.

What do my MRI results mean?

The MRI will be looking for areas that look unusual – which will typically be referred to as lesions in your MRI report. These aren’t necessarily cancer – they could be an area of inflammation, for example – but could also be a cluster of cancer cells. When the radiographer who does the MRI spots a lesion, they “score” them using a system known as PI-RADS.

What is a PI-RADS score?

This is a score, graded from 1-5, which represents how likely it is that any lesions spotted on your MRI are in fact cancer in the prostate. A score of 1 means it is very unlikely that you have prostate cancer that needs treatment. A score of 5, however, suggests a high risk (70-80 per cent) that you have prostate cancer that needs treatment. A score of 4 means it is likely you have cancer that needs treatment, whereas 3 is sometimes called ‘borderline’ (approx. 20% chance of finding cancer), meaning it is impossible to tell from the result if you have prostate cancer that needs treatment or not. A biopsy will usually be recommended if you have a score of 4 or 5, and sometimes 3, depending on personal circumstance and risk factors.

Can I have copies of my MRI images?

Yes, you can request digital copies of your scans.

What happens during a typical prostate biopsy?

For this, tiny samples of prostate tissue (typically 10-12, each measuring around 1mm wide by 2cm long) are extracted using a needle, which can then be examined under the microscope to help confirm or rule out a cancer diagnosis.

There are different ways of performing a prostate biopsy. The transperineal biopsy, where the needle passes through the perineum, the area of skin between your anus and testicles, is increasingly the most popular option.

For this, you lie on your back and the perineum is numbed with an injection of local anaesthetic. Once that is numbed, local anaesthetic will be injected into the prostate itself.

The biopsy needle is put in place using ultrasound guidance, which means you need to have an ultrasound probe inserted into your rear end during the procedure.

The whole procedure takes around 20 minutes, depending on how many samples are taken.

The other option is a transrectal biopsy, the only differences being that you lie on your side and the needle passes through the wall of the back passage, not the perineum. This is now rarely used in the UK and is becoming increasingly less popular in the US, as it has a slightly higher infection risk than a transperineal biopsy.

You will, however, be given antibiotics to take in the days before and after either form of biopsy to reduce the risk of infection.

Are there alternative ways of performing a prostate biopsy?

Around 80 per cent of prostate biopsies are done under local anaesthetic, but in some cases – for example if you found other examinations painful or need a large number of biopsies taken – you may also be offered sedation or a general anaesthetic.

If a previous biopsy has not found any sign of cancer, despite there being a high degree of suspicion that cancer is present, or if your previous biopsy was inconclusive, then you may be offered a transperineal template biopsy, which involves taking more samples than are normally taken during other prostate biopsies. This is done under a general anaesthetic and involves using a grid (or template), which is pressed between the anus and scrotum. The idea is that a biopsy needle can then be used to systematically take a sample from each grid box so that every area of the prostate is sampled. In total, 30-50 samples may be taken.

Does a prostate biopsy hurt?

A biopsy should not be painful, as those not done under general anesthetic are done under local anaesthetic. It will hurt briefly as the local anaesthetic is injected, but this takes only a matter of seconds.

When each sample is taken, you will hear a clicking sound and may feel a flicking sensation.

No one is going to look forward to a biopsy, but remember it will be over in 10-20 minutes and it is the best and most accurate way to detect prostate cancer.

How long will I have to wait for my prostate biopsy results?

This varies according to your hospital or clinic, but they should be available within about a week.

Who will do my biopsy?

This is almost always the job of a urologist. In unusual circumstances, experienced specialist nurses may also perform them.

Will I need to stay in hospital after my biopsy?

No, even if your biopsy is done under general anaesthetic, it is a day case procedure and you should normally be able to go home afterwards.

Are there any risks involved with having a biopsy?

The main risk is infection, which is why you will usually be given antibiotics to take in the days before and afterwards. The risk is, however, far lower with the transperineal biopsy (under 1 per cent) than with other forms of biopsy.

The majority of infections begin within a week of the biopsy. Signs that you have a possible infection include having cloudy or smelly urine, pain in your abdomen or a fever – if you have any of these symptoms in the days following your biopsy, immediately contact your urologist or seek other urgent medical help. Some infections may require treatment in hospital with intravenous antibiotics.

The swelling caused by the procedure may cause some problems urinating in the days afterwards – this is most common after a template biopsy, as more samples are taken than during other biopsies. You will normally be asked to urinate before you go home after your biopsy. If you are later unable to pass urine at home, contact your doctor – you may need a temporary catheter.

You may also notice some blood in your urine (or stools) for a few days afterwards. This is normal – but if it persists beyond a few days or becomes heavier, consult your doctor.

It is also common to have blood in your semen for up to 12 weeks afterwards – which may appear red or rust-coloured. This is not a cause for concern, nor is it dangerous for your partner.

Some men experience temporary erection problems after a biopsy, due to swelling around the prostate affecting the nerves involved in having an erection. However, this only happens in a minority of cases and the issue will normally resolve itself within weeks as the swelling calms down.

There are two nerves that control erections, with one nerve running down each side of the prostate in the groove between the prostate and the rectum.
How effective is a biopsy at identifying the presence of cancer?

While a biopsy is the most effective way to determine if you have prostate cancer, there is a chance that the presence of cancer may be missed, as the needle samples only the prostate tissue and not any cancer that maybe present.

This is less likely with a template biopsy, which involves taking more samples than other types of biopsy.

A biopsy is the best and most reliable way to identify cancer that requires treating. A biopsy can also identify a cancer that is slow-growing and not aggressive and unlikely to cause any symptoms.

Will I need scans after a biopsy?

If your biopsy has found signs of cancer, a scan may be suggested to see if it has spread beyond the prostate. The type of scan suggested varies but may include a CT scan, an isotope bone scan or a PSMA PET CT scan.

What is a CT scan?

A computerised tomography scan or CT scan helps build images of the internal structures of the body – not just the bones as an X-ray would, but also the blood vessels and soft tissues – and can detect if your cancer has spread elsewhere in the body.

To have a CT scan, you lie on your back and pass through a thin, ring-shaped machine. The scans should be completed in 10-20 minutes. It won’t hurt and, unlike an MRI, does not generate a lot of noise; nor are you enclosed, so it is less likely to make you feel claustrophobic.

What is an isotope bone scan?

An isotope bone scan is performed to check if the cancer has spread to the bones.

For this, a small amount of radioactive dye is injected into your veins, which will gather at areas of abnormality, where bone is breaking down.

The scanner is then passed over your body and will detect these ‘hot spots’. It can take up to an hour to complete.

What is a PSMA PET CT scan?

This is the most sensitive type of scan for detecting prostate cancer cells, wherever they are in the body. At the moment it is mainly used for those whose cancer has returned after TREATMENT, but the potential for its use is developing all the time.

To have the scan you first have a dye injected which contains radioactive makers which attach to PSMA, a protein found on the surface of prostate cancer cells and then show up on the scan.

PSMA PET CT scans are increasingly used in the UK, but have only recently been approved by the FDA in the USA and so there is limited availability.

We suggest you speak to your urologist about whether you are eligible, and where the scan is available.

The scan takes 20-40 minutes to complete.

Who can I discuss my scan results with?

Your urologist or GP will explain and help you to understand the results of your scans.

What difference will scans make to my treatment?

Scans help determine if your cancer is low, intermediate or high-risk – which helps your medical team plan and recommend the appropriate treatment options.

Do I really need to have my cancer genetically tested?

Tests that determine the genetic profile of the cancer can help doctors understand how your cancer is likely to behave and how quickly it might grow or spread.

These tests are used at different stages of the process. Exosome Dx or Select MDx can pick up genetic material from prostate cancer cells in a urine sample before a prostate biopsy. Oncotype MDx tests tissue taken during the biopsy. Another genomic test, Decipher, can be done on either prostate biopsy tissue or prostate tissue removed after surgery.

Genomic tests have limited availability in the UK (where they are available privately) and the US (where they can be expensive). They can, however, give additional useful information to help determine the best form of treatment for you. The best option is to discuss with your urologist whether genomic tests are necessary and which of them is most suitable to your situation.

I have just been diagnosed with prostate cancer. Now what?

First, take a deep breath. Cancer is an understandably frightening term, but prostate cancer is one of the better ones to have. In the majority of cases you may have to live with prostate cancer, but you won’t die of it.

Your doctor will suggest a course of action based on your age, your general health and your own personal preferences.

After receiving your diagnosis, you will normally be given some time to weigh up your options before any treatment begins. You may have days, or even months, to consider what you want to do.

Take the time to talk to others (for example through the NowWhat community) and write a list of the questions you want to ask your doctor before making a decision.

What do my results mean?

Cancer comes in many forms, sizes and degrees of aggression, and your results will reflect the type and likely behaviour of yours.

Although we talk about ‘prostate cancer’, there are different types.

The most common is Adenocarcinoma, which accounts for over 90 per cent of cases and develops in the gland cells in the prostate, which make the fluid that mixes with sperm to make semen.

The most important part of diagnosis is the stage of any disease and determination of risk factors. Firstly, is the disease localised (confined to the prostate) or advanced (spread to other parts of the body). Secondly, what is the risk stratification determined by, amongst other parameters, the Gleason grade, which is a histological (Pathological tissue) scoring system. [See question ‘What are the Gleason grade and score?”]

What is the ‘stage’ of the cancer?

This refers to the size of the cancer and how far it has spread. The stage will normally be represented as a letter T (for tumour), followed by a number from 1 to 4.

T1 means it is so small it may not be seen on a scan.

T2 means it is still enclosed within the prostate.

T3a means it has just broken beyond the perimeter of the prostate, and T3b means it is invading the sperm tubes. Both are referred to as being ‘locally advanced’.

T4 means it has already spread elsewhere surrounding structures such as the rectum OR pelvic wall.

There may also be an ‘N’ number, which reflects whether the cancer has spread to the lymph nodes in the pelvis. – Zero (N0) means no nearby lymph nodes are affected; 1 (N1) signifies that the cancer has spread to one or more nodes.

The “M” number refers to the presence of metastasis – M0 means no metastasis present and M1 means metastasis present.

Fig 1: T1 refers to prostate cancer that is localised to the prostate, in a small proportion of one half of the gland. The original classification of T1 was complicated and split into 1a, 1b and 1c. 1a and 1b were diagnosed after a TURP operation, and 1c was diagnosed after screening biopsy but this has been changed after the introduction of MRI.
Fig 2: T2 means it is still enclosed within the prostate, but involving either both halves of the prostate or more than 50% of one half.
Fig 3a: T3a means it has just broken through the capsule of the prostate.
Fig 3b: T3b means it is invading the sperm tubes.
Fig 4: T4 means invading surrounding structures beyond the sperm tubes such as the pelvic side wall or the rectum. T3 and T4 are referred to as locally advanced.
What are the Gleason grade and score?

The Gleason grade measures the potential aggression of the cancer, which is determined after a pathologist has looked at samples of your prostate cancer under the microscope.

The grade goes from 1-5, with 1 indicating cancer that is going to grow very slowly, if at all, and 5 being the highest, meaning the cancer is likely to grow quickly.

To give the most accurate picture, two scores are given – the first representing the most common type of cells found in the biopsy, and the second number being the highest grade of the remaining cells. The two are added together to give a total score. So, if most of the cells were a Gleason grade 3 and the rest were mainly a 4, this would give 3 + 4 (and a total score of 7).

Generally, a total score of 6 or less means the cancer is likely to grow slowly if at all, 7 indicates an intermediate risk cancer with a moderate risk of growth, and above 7 means it is a high risk cancer likely to grow quickly.

Your Urologist may also refer to another grading system known as the ‘Gleason Grade Groups’ (GGG), which also runs on a range from 1 to 5. GGG1 is the equivalent of total Gleason score of 6; GGG2 equates to Gleason 3 +4; GGG3 to Gleason 4+3; GGG4 to Gleason 4+4; and GGG5 to a total Gleason score of 9 or 10.

How do doctors decide what treatment I need?

The plan moving forward will very much depend on your staging and the Gleason score.

If you have slow-growing, low-risk disease, then surveillance – in other words, running regular tests to check to see if the cancer is progressing – is all that is needed.

For intermediate-risk disease that is localized to the prostate, surgery or radiotherapy may be suggested.

For high-risk localized disease, you may need combinations of surgery, radiotherapy and hormones or “multimodal treatment”, which still aims to achieve a cure.

For advanced or metastatic disease, the standard treatment is hormone therapy, but some patients may also be offered chemotherapy.

The doctors will take into account individual factors such as your age and general health, as well as your own wishes.

Can I get a second opinion on my diagnosis or treatment options?

It’s your right to seek a second opinion if you are not comfortable with the advice and diagnosis given.

How quickly do I need to start treatment?

If you have been diagnosed with low-risk cancer that is confined to the prostate, it is likely that your urologist will recommend you just stay under surveillance, with regular PSA checks and MRIs.

For those with the next level, intermediate or high-risk localized prostate cancer, you aim to make your decision about starting treatment within three or six months.

Finally, for patients with advanced disease the situation is a bit different. The recommendation is to start treatment, which is likely to be hormone therapy to begin with, as soon as possible.

Can I get copies of my scans and test results?

Yes, you can get digital copies. These will make it easier to get a second opinion should you choose to do so.

Who can I talk to about my prostate cancer diagnosis?

Your medical team can help with any questions you have, to help you understand your diagnosis and what will happen going forward.

But it’s important to discuss your feelings, too. Many people with cancer fear telling family and friends, as they worry the news will upset them. Of course, this may be the case, but coping with a cancer diagnosis is challenging and talking to others about your fears and feelings is vital.

What can be really helpful is talking to others who have been through the same experience. If you don’t know anyone who has had a cancer diagnosis, and specifically a prostate cancer diagnosis, then you can use the Now What site to connect to others who have.

How do I tell my family I have cancer?

It’s common – and completely understandable – that men worry about how their family will react to the diagnosis. There’s no right or wrong way to discuss this, but it is usually better to talk about it rather than keep it to yourself, which will only contribute to any feelings of isolation that you have.

If you don’t tell your nearest and dearest from the start and they then find out later, they may feel anger at being shut out of such a big event in your life.

Choose a moment when you feel able to talk about the diagnosis and keep it simple – just talk honestly about how you feel.

Encouraging your supporting family to learn about the disease and its treatment through sites such as this one will help all of you.

I have been offered active surveillance. What does that mean?

You are usually offered this option if the tests conducted suggest that you have low-risk, slow-growing cancer that is confined to the prostate.

It means that rather than having any active treatment, such as radiotherapy or surgery, your cancer will be monitored to see if it progresses.

You will typically have a PSA blood test every three months, an annual MRI and a repeat biopsy about 2 years after your initial biopsy. The MRI may be repeated more frequently if your PSA climbs quickly.

Is active surveillance safe?

As we understand more and more about prostate cancer, it is clear that low-risk disease (defined by a Gleason score of 3+3 on your biopsy) is very different to intermediate or higher risk disease. Defining it as cancer is arguably inaccurate, as cancer cells normally grow and multiply uncontrollably – whereas low risk prostate cancer cells multiply very slowly.

As the risk posed by such cancer is so low, the internationally approved recommendation is that active surveillance is the right treatment. The low risk of this type of cancer does not warrant the potential risks that can come with surgery or radiotherapy.

How likely is it that my low-risk cancer will become higher risk?

Over 10 years, approximately 30 per cent of patients with low-risk disease go on to show signs of having intermediate or higher risk disease and then require treatment. But with regular surveillance tests this is detected quickly.

I don’t want to live with untreated cancer. Are there other options?

It really depends on your biopsy and staging results. If your Gleason score was 3 + 3 and it is clear from tests that you have low-risk disease, it is highly unlikely that you will be offered surgery or radiotherapy, even if you request it.

The recommendations for active surveillance for low-risk disease are determined by international convention and it is also highly unlikely that a reputable doctor will offer treatment that goes beyond those guidelines.

How often do I need a biopsy with active surveillance?

This varies from centre to centre, but you will normally have a repeat biopsy one or two years after your first. Further biopsies after this may be required if there are any changes in your physical examination, PSA, or MRI results.

I’ve been told I need surgery. What will this involve?

You may be offered surgery if your cancer is contained within the prostate or has only spread just outside – and in most cases it will be curative. Some cases involving high risk disease may need “multimodal” treatment, including additional radiotherapy at variable times after surgery.

The operation is known as a ‘radical prostatectomy’ and involves removing the prostate, as well as the connecting seminal vesicles, where fluid which helps form semen is produced. In some cases, lymph nodes may also be removed from the side of the pelvic wall. The idea is to remove all the cancer.

After the prostate has been removed, the urethra – the tube that carries urine out of the body, and which passes through the middle of the prostate – will then need to be reconnected to the bladder.

The operation will be done while you’re under general anaesthetic using a keyhole technique – tiny incisions – or by open surgery, where a larger incision is made.

Fig 1: Diseased prostate is removed. Fig 2: The urethra and seminal vesicles are cut. Fig 3: The urethra is reconnected to the bladder
Are there different ways of doing the surgery?

There are two main options.

The most common option in modern prostate cancer centres is to have a robotic-assisted keyhole procedure, whereby six small 1-2cm incisions are made to insert the tools needed for surgery. The largest, just above the navel, is for the robotic camera which sends the surgeon images. The other incisions are below the navel.

The surgical tools in this case are manoeuvred by robotic hands, which are controlled by a surgeon sitting at a console right by the operating table. The use of this robot allows very precise movements, and the robotic camera magnifies the operative field by a factor of 4, giving a very clear image for the dissection. The surgeon uses the robotic tools to cut around the prostate, which is then removed through one of the small incisions. There is evidence that the magnification and degree of precision gained by using the ‘robot’ when trying to avoid nerve damage leads to better long-term continence and potency rates than those achieved by the alternative approach, open prostatectomy.

An open prostatectomy involves the creation of a large 15cm incision made to access the prostate, normally below the navel. Less commonly, the incision is made via the perineum, the skin between your testicles and your back passage. This option is used less now than it was in the past.

Both of these surgical options are equally as effective at removing the prostate cancer itself. However, the keyhole procedure involves smaller incisions, which results in quicker healing, less post-operative pain and blood loss, and generally in shorter hospital stays.

You may also hear about Retzius-Sparing Robot-Assisted Radical Prostatectomy (RS-RARP) which refers to an alternative anatomical approach to removing the prostate with the robot. The incisions are the same, but the dissection is performed largely from below and behind the prostate, with a view to minimising damage to the urinary sphincter. This helps to improve post-surgical incontinence. Speak to your surgeon to determine whether you are a candidate for this approach.

Which of these options you are offered will depend on what is available locally and on the expertise of the surgeon – the robotic option requires extra technology not available everywhere and may require a referral to a specialist cancer centre.

It will also depend on whether your cancer is thought to have spread and your own general health. Your surgeon will advise you on the best options for your circumstances.

Does it matter who does my surgery?

Studies have shown that, for prostate cancer surgery, outcomes are better for surgeons who have a high volume of cases. In other words, the more experience they have the better.

How do I choose the best surgeon (USA)?

If you are in the US state healthcare systems, you may be referred to a surgeon based on geography. Prostate cancer surgery tends to be conducted in major cancer centres, and as long as your surgeon is doing a high volume of cases, they will be proficient.

In the private sector, you can shop around to find a surgeon you’re comfortable with. Take advice from your urologist and ask around for recommendations. You may choose to meet different surgeons before making a final decision.

How do I choose the best surgeon (UK)?

NHS patients will normally be referred to a surgeon operating locally, but you can ask to see another if you are unhappy. Take advice from your GP or urologist and ask around for recommendations.

All Urologists practising in the UK are legally required to be on the Urology Specialist GMC Register: https://www.gmc-uk.org/registration-and-licensing/the-medical-register

What are the risks of surgery?

As with all surgery, there is a risk of infection, in the short term. Typically, this will cause you to feel shivery and generally unwell. Most infections occur within two weeks of surgery. There will also be a risk of bleeding, but this rarely requires transfusion.

There is also a very slight risk of damage to the intestine, but this is very rare and occurs in fewer than 1 per cent of cases. The risk is higher with the keyhole approach.

There is also a slight risk of blood clots developing in the legs, which can travel to the lungs. This would usually occur within the first week or two at home.

Very rarely there may be complications related to the anaesthesia.

Will surgery cause any long-term side effects?

The main long term complications after a radical prostatectomy are urinary and erectile problems.

During surgery the nerves and muscles that help control urination, such as the pelvic floor that supports the bladder, may be damaged or inflamed and so when your catheter is removed you may find you experience some leakage. This may be a few drops or it may be strong enough that you need to wear a pad.

However, in the vast majority of cases this improves within one to six months as the swelling in the area reduces. It will continue beyond that in only a small proportion of men, who may take up to a full year to get back to normal urinary function. If you had Retzius-Sparing Robotic surgery, then your likelihood of incontinence is only for a very short period, if at all, although the long term risk of continence is the same for both Retzius Sparing and standard Robotic Radial Prostatectomy. [See also question ‘Are there different ways of doing surgery?’]

The risk of becoming incontinent in the long-term increases with age, especially if you had urinary problems before the surgery. Ageing tissue heals less quickly and sometimes not as well.

Very rarely, some men may experience difficulty passing urine at all following surgery, due to the formation of scar tissue around the urethra – the tube that takes urine out of the body. You must let your medical team know if this happens to you.

You may also experience sexual difficulties, as the nerves that control erections may be damaged or affected by the surgery. As a result, it may take some time to be able to achieve an erection. How long this takes can vary from three months to two, or even three, years after the surgery. There are devices and medications that can help if you are affected. Your medical team will be able to advise you on this.

Also you may find your orgasms change. That’s because the tubes that produce the fluid that helps form semen and the prostate are removed during surgery. This means orgasms may become ‘dry’ and you will no longer be fertile. If you want to have children, then storing sperm before the procedure may be an option for you.

Many patients and their partners benefit from consulting a specialist sexual psychotherapist who will help them with the emotional as well as physical side-effects.

What is nerve-sparing surgery?

There are two sets of nerves that run either side of the prostate, which control erections. Nerve-sparing surgery means the surgeon tries to remove the cancer and the prostate without damaging these nerves.

This is technically difficult, which is why the skill of the surgeon is important, and those surgeons who perform more of these operations tend to have lower complication rates.

However, in some cases the position of the cancer may make it impossible to save or spare the nerves. Your surgeon will discuss this before the surgery.

Should I start taking Viagra before surgery?

There is no clear evidence that starting Viagra prior to your treatment will improve long-term erectile function, but some surgeons recommend it. This is because Viagra may have side effects such as flushing or an upset stomach, which with ongoing treatment you can get used to, so that your body becomes more tolerant to it. Getting this process started early, before you start your recovery may be beneficial. Discuss this with your surgeon.

How do I know I am fit enough for surgery?

Your surgeon will take into account your medical history before suggesting surgery as an option for you.

A week or more before your operation you will be asked to attend a hospital or clinic to undergo a series of tests to check your general health. These include blood and urine tests, as well as an electrocardiograph (an ECG), which records the electrical activity of the heart and gives an idea of overall health.

They will also give you advice on pelvic floor exercises to help strengthen the muscles that help maintain bladder control. This will help with your recovery.

They also may encourage you to make some lifestyle changes to get ready for your surgery. You wouldn’t run a marathon without doing some training, and similarly, improving your physical fitness as much as you can may help your recovery after surgery. There is increasing evidence that longer term lifestyle changes, such as physical exercise, diet and mindfulness activities, may also improve your cancer prognosis – so the sooner you start, the better, even if it’s before your treatment.

The NowWhat team are enthusiastic supporters of these long-term lifestyle changes and we will support your throughout the process through our platform.

What happens on the day of surgery?

Most, but not all, surgery is done in the morning. On the day, you will need to fast beforehand – normally the requirement will be for six hours, but check with your surgeon’s team and the hospital.

At hospital, you will normally be checked in by a nurse and asked to sign a consent form. A member of the anaesthetic team will visit you and go through the final checks.

The surgery itself will take two to three hours.

How will I feel straight after surgery?

When you wake up you may feel a little groggy at first. You will have a catheter in place and you may have a plastic drain in the stomach, depending on how much bleeding there was during the operation, to be determined by the operating surgeon. If placed, the drain is only a safety precaution and is removed before you go home.

Depending on the technical approach and your own surgeon’s preference, the catheter will be removed sometime between a few days to two weeks after you leave hospital and you’ll return to have this done.

It is major surgery, so there may be some discomfort afterwards, but you will be given intravenous pain medication immediately after the surgery and painkillers to take at home after you have been discharged.

What will the pain be like following surgery?

On a scale of one to ten, most patients grade the pain as three or four for the first two or three days after surgery, but typically, the pain calms down a lot from that point on.

The night and morning after surgery, you’ll be in hospital, and your medical team will ensure the painkillers you are given are as strong as necessary. At home, most patients can manage with paracetamol or ibuprofen.

How long will I have to stay in hospital after surgery?

You will normally be discharged after one or two nights in hospital following a keyhole procedure, and three to seven nights after an open procedure.

You will be sent home with a catheter – a thin tube in your penis, connected to a collection bag –  to drain urine whilst your urethra heals. Depending on the technical approach and your own surgeon’s preference, the catheter will remain in place for between a few days to two weeks after your surgery. During the day, the bag is normally strapped to the upper thigh and can be hidden under clothing. At night it can be connected to a larger bedside receptacle, to avoid disrupting your sleep.

Will I be able to drive home after surgery?

No. The advice is usually that you don’t drive for the first two weeks after prostate surgery.

How will I be when I get back home after surgery?

You may feel tired and need to take it easy, especially for the first couple of weeks, as you start to heal.

You will be given strong painkillers to take home to deal with any discomfort, but many men only need paracetamol or ibuprofen.

The stitches used during a keyhole radical prostatectomy will dissolve, but the stitches used for open surgery may need to be removed at a later date.

Your surgeon will give you individual advice on diet, but normally the recommendation is that you stick to light meals for the first two or three days until you open your bowels.

While walking is fine, you should avoid heavy lifting (above 5kg or 10lbs) for four weeks. Most hospitals advise no driving for two weeks.

As you won’t be bed-bound, you should be able to cope alone without a carer. It is useful, however, to have someone who can, for example, drive you around if needs be or to give simple peace of mind.

However, men are often surprised how mild their post-operative symptoms are when they are back home.

Who can I talk to when I get home if I have a problem?

You will normally be given a contact number for someone at the hospital or a connected clinic to call when you are discharged from hospital.

How long will I need to be off work following surgery?

You will need at least two weeks off work afterwards, and some doctors may recommend a whole month.

How soon can I fly after surgery?

Usually, the advice is to wait two weeks. This is primarily because most post-operative problems occur within a fortnight of surgery. There is also a clear benefit in being close to your hospital and being able to be seen by the same surgical team if problems do arise.

How soon after surgery can I start exercising?

Your surgeon’s team will give you detailed advice on post-operative recovery exercise regimes. Most surgeons will encourage you to start walking as soon as you get home, as much as you can. This will encourage blood flow in the lower limbs, reducing the risk of blood clots, as well as improving breathing, bowel function and overall recovery.

However as your internal muscles and tissues need to repair you must avoid heavy lifting (above 5kg or 10lbs) for four weeks.

You should also avoid cycling or horse riding for six weeks.

You can practice putting at golf after two weeks, but don’t hit any golf balls with irons or a driver for six weeks.

From between six weeks and three months after surgery, you can usually start to return to your exercise as normal, including light exercises in the gym, but take advice on this from your surgeon.

Will my insurance cover all my treatment?

If you’re planning private treatment, you’ll need to check with your insurance company. Many insurance companies insist on pre-approving any treatment.

Might I need more treatment after surgery?

This depends partly on what the tests before your operation found – and whether or not it seemed likely that the cancer had spread beyond the prostate.

However, it will also partly depend on the findings of the pathology report on your cancer.

This is done by microscopic examination of tissue samples removed during your surgery.

The cancer will be graded according to its aggression and the margins will be examined. The margins are the edges of the tissue that was removed – a positive margin means cancer cells were found at the very edge – which may mean not all the cancer was removed. A negative margin means no cancer was present at the edge, which can indicate all the cancer was removed.

Your full pathology report will help your surgeon decide what comes next. You should have your results within two weeks of your operation.  

When will my catheter be removed?

Depending on the technical approach and your own surgeon’s preference, the catheter will remain in place for between a few days to two weeks after your surgery. This allows the new connection between your bladder and urethra (water pipe) to heal. You must not try to remove it yourself. The catheter will be removed by a nurse at a follow-up hospital appointment.

Will the catheter cause me any pain?

It should not be painful, but it can cause some irritation around  the tip of the penis. When you are discharged from hospital, you should be provided with some anaesthetic jelly to apply on the tip, and a lubricating jelly may also be helpful. Removing the catheter will be surprisingly painless. It takes seconds to slip it out, but you must not try and do this yourself.

Will the catheter be visible to others?

No, nobody will be able to see it. You will be given a leg strap that goes through the edges of the collection bag, and you can strap it to your leg under your trousers. You can empty the bag via a valve at the bottom of the bag straight into the toilet.  You should also be given a night bag, which is slightly different and sits on the side of the bed while you sleep.

Will I leak when the catheter is removed?

Not all patients leak when their catheter is removed, but a significant proportion do. This will also depend on the technical approach of your individual operation.

However, starting pelvic floor exercises before your operation and continuing them afterwards will help speed up your recovery. And for most people the leaking won’t be a long-term issue. Our specialist Lynn Buckley has lots of advice, read our article “Introduction to NowWhat’s Psychosexual Therapist” for more information.

How long will it take for me to stop leaking?

Studies show that approximately 50 per cent of men will be continent in other words, they will no longer leak three months after their catheter is removed. After six months, 70 per cent are continent, and at 12 months the figure is 90 per cent.

Of course, no one wants to be in that 5-10 per cent of men for whom leaking is a long-term issue and there are a number of factors that affect your risks of falling into that bracket. Your surgeon should be able to advise you about the chances of this beforehand. And be reassured that even if it does apply to you there are ways to manage it.

A relatively recent new technical approach known as Retzius-Sparing Robot-Assisted Radical Prostatectomy (RS-RARP) is reporting excellent early post-surgery continence without any recovery period. Speak to your surgeon to find out whether you are a candidate for this approach.

How does radiotherapy help against prostate cancer?

Radiotherapy uses high-energy rays to target cancer cells. It may be offered to you if you have prostate cancer that is enclosed within the prostate or have cancer that has spread locally, outside of the prostate envelope, into the surrounding tissue and lymph nodes but not to the bones or other parts of the body.

It may also be recommended if your cancer has spread further around the body, to help improve your quality of life and to help relieve symptoms such as pain.

Is radiotherapy a better option than surgery?

Both have similar results for treating cancer that is confined to the prostate or that has spread locally. However, if you are older and have other medical problems that make a general anaesthetic more challenging, you may be encouraged to opt for radiotherapy.

Radiotherapy is painless and can be curative, but it does require frequent trips for treatment – which may be as much as five days a week for eight weeks or more.

What different types of radiotherapy are there?

The most common form is external beam radiotherapy, which, as the name suggests, involves having an external beam of radiotherapy aimed at the prostate.  This is normally given in conjunction with hormone therapy, which helps block the hormone testosterone that encourages the growth of prostate cancer cells.

The most commonly used type of external beam radiotherapy is intensity-modulated radiotherapy. For this, scans are used to make a detailed picture of your prostate and your cancer, so that the radiotherapy can be accurately targeted where it’s needed. The rays can be shaped, and the strength varied around the prostate as necessary, reducing the risk of damage to healthy tissues and nearby organs.

3D conformal radiotherapy is a less commonly used form of external beam radiotherapy. Again, scans are first taken to map out where the rays will be focused, but the strength of the beam used is constant and cannot be altered. Few centres now offer this form.

The other option is to use internal radiotherapy such as brachytherapy.

Brachytherapy involves having tiny radioactive pellets – each about the size of a grain of rice – surgically implanted into the prostate where they remain and release radiation treatment.

Implanted brachytherapy involves having tiny radioactive pellets – each about the size of a grain of rice – surgically implanted into the prostate where they remain and release radiation treatment.  It is suitable for cancer that has not spread, as the radiation does not travel far. The amount released is highest for the first two months and after two years they will have lost their radioactivity altogether – although they can remain harmlessly in the prostate after that.

Men who have brachytherapy must avoid close contact with children and pregnant women for the first two months.

Brachytherapy can also be carried out by inserting tiny narrow tubes into the prostate, which then deliver doses of radiotherapy. The therapy last minutes and the tubes are then withdrawn. This is known as high dose or temporary brachytherapy.

Stereotactic radiotherapy – of which Cyberknife is one example – involves firing multiple rays rather than one focused one, and so delivers higher doses of radiotherapy, meaning fewer treatments are required.

Cyberknife requires daily treatments for only a week in total whereas external beam radiotherapy requires daily treatments over a number of weeks. However, this is not widely available in the UK and only at limited centres in the US.

What side effects might radiotherapy cause?

Radiotherapy can damage healthy tissue, and this can lead to side effects – although most of these effects are short-term problems, as often the damaged tissue will heal.

One of the most common side effects is tiredness, which you may find builds as the treatment continues. Your energy should start to return in the weeks after the treatment ends – although in some men it takes months.

External beam radiotherapy may also cause sore skin that resembles sunburn at your treatment site and a loss of pubic hair.

The radiotherapy may irritate the lining of your bowel, leading to diarrhea and other bowel symptoms. While in the vast majority of cases these resolve in months, this can become a long-term problem.

You may also experience urinary problems, such as feeling the need to urinate with greater frequency, or a burning sensation when you do, as a result of the radiotherapy causing inflammation around the bladder or the urethra (the tube through which urine travels out of the body). If you had incontinence issues before the treatment there is a stronger chance that these symptoms will endure.

Very rarely – and most often with brachytherapy – the urethra itself can become narrowed by scarring, known as a stricture, making it difficult to pass urine. This narrowing can be treated with laser therapy or surgery to remove it.

Longer term, some men go on to experience hip pain, as the radiation can damage the bone cells and the blood vessels supplying the pelvic area. This is, however, rare, occurring in under 3 per cent of cases.

Erection problems can also occur – and these may develop over time (unlike after surgery, where they will be immediately apparent). Some studies suggest this is less likely with brachytherapy than other forms of radiotherapy.

You are far less likely to have erectile difficulties if you are under 65 and if you have no other health complaints.

Radiotherapy can also leave you infertile, as it may damage the cells and vessels needed to produce and carry semen. Some men find they have a dry orgasm – where they orgasm without ejaculating.  If you want to keep the option of having children, you may want to consider storing some of your sperm before treatment.

In a very small number of cases, radiotherapy can itself lead to cancer of the bladder and bowel, which typically develops five years or more after your initial radiotherapy has ended. The risk is, however, very small – with fewer than 4 per per cent of men likely to develop cancer as a result of their radiotherapy.

Your medical team will talk you through these possible complications, and in some cases can suggest ways to help or combat them.

How many radiotherapy sessions will I need?

A full course of radiotherapy typically takes between 20 and 37 sessions, given over a period of four to seven weeks.

Where should I have my radiotherapy treatment?

As radiotherapy often involves multiple treatments, most men opt to have it as locally to their home as possible.

Why might I need to have radiotherapy after surgery?

Radiotherapy may be suggested if and when your PSA starts to rise after surgery. If your PSA reaches 0.2 mg/ml, this is then termed a biochemical recurrence and may mean your cancer has come back.

Radiotherapy may also be suggested if the surgeon thinks that not all of the cancer cells were removed during surgery. This may be suspected if, for example, your pathology report suggests that there were some cancer cells at the edge of the tissue removed during surgery.

Secondary radiotherapy like this may be targeted both at your prostate bed (i.e. where the prostate gland was) and the surrounding lymph nodes, as this gives a better chance of cure than targeting the prostate bed alone.

Should I have radiotherapy after surgery to be on the safe side?

Evidence from recent studies suggests that there is no real benefit to having secondary radiotherapy unless your PSA level climbs above 0.2. Starting the radiotherapy before this happens may also bring a higher risk of long-term side effects.

What is hormone therapy?

The hormone testosterone, produced mainly in the testicles, is a bit like a food source for prostate cancer – encouraging the cells to grow faster. Hormone therapy aims to stop testosterone reaching the cancer cells or to halt the production of it. This is not in itself a cure, but it can halt the progression of the cancer and may also shrink it.

When might I be given hormone therapy?

You may be given hormone therapy alongside radiotherapy, as hormone therapy increases the chance of the radiotherapy being successful. Hormone therapy can help shrink the cancer and/or target any cancer cells remaining after radiotherapy. It’s normally given up to 6 months before starting radiotherapy and may continue for up to three years afterwards.

You may also be given hormonal therapy if your cancer returns after surgery or radiotherapy to slow its growth.

Hormone therapy is also used for treating advanced prostate cancer, to help reduce symptoms (for example, difficulty urinating or pain) and to slow its progression.

Are there different types of hormone therapy?

Yes – you can take tablets, have it as implants or injections, or you can have surgery. The type used depends on the stage of your cancer and your own personal preference.

Tablets (such as bicalutamide) are taken daily and block the action of testosterone by binding to receptors, which the hormone would normally lock onto. This stops the testosterone from reaching cancer cells.

Another option is an injection – the most common being what are called LHRH agonists (such as Zoladex or Goserelin), which is normally given into the arm, leg or buttock – or implants (put under the skin in the abdomen) administered anywhere from once a month to once every six months. These injections and implants stop the production of testosterone by interrupting the messages running between the brain and the testicles that prompt the production of the hormone.

The other option is surgery, called orchiectomy (also known as castration), which involves removing the testicles during day-case surgery. As this is where the majority of testosterone is made, it dramatically reduces its production. Due to the effectiveness of the medications above, surgery is rarely used nowadays.

What side effects might hormone therapy cause?

Testosterone has many effects within the body, so blocking its action or significantly reducing its production can cause a number of side effects.

The most common for those taking tablets is breast swelling or tenderness, brought about by the shift in the body’s hormone balance. Many men find this distressing but there are ways to counter the development of breasts – for example, by taking the drug tamoxifen, or a brief one-off dose of radiotherapy. Your medical team should be able to advise you on this.

Other side effects of hormone therapy include hot flushes, lethargy, weight gain, muscle weakness, reduced libido and erectile dysfunction, bone thinning, depression, hair loss and increased cholesterol levels.

However, again, there are ways or combat many of these – antidepressants, for example, can help counter hot flushes and depression, while exercise can help maintain your bone mass. Sticking to a good diet and exercise can help with weight gain and mood changes too.

Radiotherapy can also impact on your concentration and your memory, so it can be helpful to use lists and notes to jog your memory.

How long do the side effects of hormone therapy last?

The side effects will last as long as you’re taking the hormone therapy (although they can take some months to clear fully).

The exception to this is if you have had surgery to remove your testicles, as the effects of this will be permanent.

If you find the side effects hard to cope with, it may be possible in some circumstances (if your PSA levels are low) to take the hormone therapy intermittently, but this is something to discuss with your medical team.

Is chemotherapy effective against prostate cancer?

Chemotherapy can help slow down the progression of prostate cancer and extend your life expectancy, but in most cases it won’t cure your cancer, which is why in the early stages other more effective treatments are used.

Typically, chemotherapy is suggested as an option when the cancer has spread, possibly elsewhere in the body, and hormone therapy has stopped working. It can improve quality of life by holding back the spread of the cancer and reducing some of the symptoms it may be causing, such as pain which may occur as the cancer touches on nerves.

What are the side effects of chemotherapy?

Chemotherapy targets cells that divide quickly (as this is what cancer cells do), but this is also how certain healthy cells in the body behave, so these too may be targeted by the chemotherapy drugs, leading to side effects.

For example, there is a rapid turnover of cells in the mouth (which is why ulcers and sores may develop there) and the intestine (which is why diarrhea and nausea may affect you). There are also rapidly dividing cells in bone marrow which the chemotherapy may target, leading to shortfalls in white blood cells which are part of the immune system – leaving you prone to infections – and red blood cells which help carry oxygen around the body, which is why you may feel fatigued.

There may be other side effects too, such as hair loss, muscle aches and tingling.

Individual chemotherapy drugs may have their own specific side effects, but your medical oncologist will review these with you.

None of these are not long-term side effects and they will clear once the treatment has ended.

Are there different types of chemotherapy I can try?

The drug docetaxel is the most common form of chemotherapy used in advanced prostate cancer, and may be given in combination with the steroid prednisone. Docetaxel is normally given as an hour-long infusion, once every three weeks.

If docetaxel doesn’t work, you may be offered the chance to try another chemotherapy drug, such as cabazitaxel.

Will I need to stay in hospital if I have chemotherapy?

No. Docetaxel, for example, is given as an infusion in a clinic or hospital, after which you can go home. The only time chemotherapy may lead to an overnight hospital stay is in the event of side effects, such as an infection caused by a low white blood cell count.

Are there treatments I can try as part of a trial?

Yes. These are treatments that might show early promise, but have not been tried on enough men to be certain of the outcome. The treatments will, however, have been through regulatory safety checks and tested in laboratory studies.

In some cases, treatments may have been approved for other conditions but just not for prostate cancer, hence the need for further investigations.

Trials can help determine a number of things: if treatments or drugs are safe, for example; what dose or length of treatment is needed; how well a treatment works; and whether it is better than existing treatments.

How do I find out about available trials?

Ask your urologist and oncologist whether there are any trials for which you may be eligible to join.  

NowWhat will soon be launching a trial search service.

What sort of treatments might I be able to try if I participate in a trial?

Broadly speaking, treatments being tested through trials today fall into one of four categories: cryotherapy; immunotherapy; high-intensity focused ultrasound (or HIFU); and cancer vaccines.

What is cryotherapy?

Cryotherapy is administered by inserting needles into the prostate, which target freezing gas at the cancer, destroying the tissue. It may be offered as a treatment for early cancer or as part of a trial if you have locally advanced or advanced prostate cancer that has spread beyond the prostate.

While quick and less invasive than many treatments, cryotherapy can bring the risk of erectile and urinary problems.

What is immunotherapy?

Immunotherapy works by using the body’s own immune system to target cancer. Often, this involves medication, which trains immune cells to recognize and attack prostate cancer cells.

This is an emerging field and will only be offered to you if you have advanced prostate cancer and as part of a trial, as so far it has only been tried on small numbers of men.

One of the main advantages of immunotherapy is that it is well tolerated by the body. The main side effects may be flu-like symptoms, skin reactions, muscle aches, headaches or diarrhoea. These will also only normally occur in the immediate days after having the treatment.

How do prostate cancer vaccines work?

We tend to think of vaccines as being protective against catching an infection, but vaccines are now being developed that attack cancer too.

There are different types of cancer vaccines but for one of the commonest modern vaccines used in advanced prostate cancer (sipileucel) a blood sample is taken, and from this, white blood cells are extracted. These are then mixed with protein from prostate cancer cells. The resulting vaccine is then given to you as an infusion. Two treatments are given, usually two weeks apart.

In the US a vaccine called sipuleucel has been passed for use for patients with advanced disease that is no longer responding to hormone therapy and which is causing mild or minimal symptoms, but even this is typically only available as part of a trial. It won’t cure the cancer, but it can help extend life expectancy. Sipuleucel has not been approved for use on the NHS in the UK due to its cost.

One of the advantages of vaccines is their limited side effects, especially compared to chemotherapy. These may include fatigue, chills and, in some cases, breathlessness.

What is HIFU?

Focal high-intensity focused ultrasound – commonly referred to as HIFU – uses powerful beams of sound energy to attack tumours.

The treatment requires the insertion of a probe into the rectum, which is conducted under general anaesthetic.

The probe has a tiny camera on the end which means the treatment can be precisely aimed at the tumour. The advantage of this is that it reduces the risk of damage to healthy surrounding tissue.

At the press of a button, the tip of the probe fires an ultrasound beam at the tumour site. The beam generates temperatures of up to 80 Celsius on the surface of the prostate, which is sufficient to destroy cancerous cells in the area.

HIFU is still the subject of ongoing trials – one recent study found it was just as good at destroying cancer as current mainstream treatments, but with fewer side effects.

In the UK only a few NHS centres, plus some private hospitals, offer this treatment. In the US, the Food and Drug Administration has approved HIFU use in prostate cancer treatment, but trials are still ongoing to establish precisely how effective it is.

What are my options if I suffer from long-term leakage after surgery?

After surgery there is a small chance (approx. 5%) of long-term incontinence. If you have your prostate removed, the surgery can sometimes damage the complex SPHINCTER mechanisms which control the urinary function. It can take a while for the tissues to fully recover and to regain good bladder control.

You may find that small gestures, such as coughing or lifting heavy objects, may cause you to leak, or you may find yourself caught with an unusually sudden urge to go to the toilet – but don’t despair if this does happen. In the vast majority of cases, the problem will resolve itself within a year.

What can be very beneficial is to try pelvic floor exercises, which strengthen the muscle that extends like a hammock supporting the bladder and the bowel (and also has a role in sexual function). Strengthening the pelvic floor can help support the bladder and improve control over the urethra.

Although there are videos and advice about pelvic floor exercises online, talk to your medical team about how soon after surgery you should start and how often to do them, as this varies from person to person. If you are able to start doing exercises before your surgery to get your pelvic floor in good shape, this is ideal.

If your problems persist despite trying this, there are other surgical options that can help.

If you find that you’re still leaking after a year and that it is significantly affecting your quality of life, then you may want to consider surgery to insert a sling, which supports the urethra and helps keep it closed. This is suitable for some but not for all, and comes with the risk of side effects itself – it can, for example, lead to an infection. So, check with your surgeon whether this maybe an option for you.

Another possibility for those who are still leaking a lot is an artificial urinary sphincter. This involves an operation to insert a device – a type of pump – into your scrotum, which you squeeze to activate a balloon in front of the bladder and a cuff around your urethra. The cuff opens for a few minutes so you can urinate, then closes automatically. This procedure also comes with the risk of side effects, such as infection, which can lead to the need to remove the device.

Will I be able to have sex after my treatment has ended?

Having prostate cancer can impact on your ability to enjoy a healthy sex life in two ways – it’s not just the physical impact of treatment that may be at play, but dealing with the emotional fallout of being told you have cancer and then going through treatment may impact on your feelings of desire.

Physically – even if you have had nerve-sparing surgery or other treatment that minimises damage to the nerves and muscles that control your erections – it can take time for any inflammation brought about by the treatment and for tissues to heal. So, it can take up to three years for your sexual function to return after surgery.

Your chance of making a full recovery sexually depends not just on your treatment, but on how your sexual function was before the treatment. Around 50 per cent of men who had full sexual function before (nerve-sparing) surgery will regain it after surgery.

If you have nerve-sparing surgery (meaning that the mechanics that control your erections have been left in place) but are still experiencing problems, Viagra or similar tablets such as Cialis (tadalafil) may help. They work by opening up blood vessels in the penis to encourage blood flow and by blocking the work of an enzyme that makes an erection subside.

If you have hormone therapy, this reduces your testosterone production, which can reduce your feelings of desire, as well as your ability to gain an erection. This will, however, improve when you come off the treatment.

Am I less likely to have long-term sexual problems if I have radiotherapy?

Unlike surgery, where sexual function will be affected immediately and gradually recover, if you had radiotherapy, the impact on your ability to have erections as normal will slowly become apparent over time (approx.. 2-3 years). Overall the long-term risks of erectile dysfunction are very similar for either treatment.

What can help me regain my sexual function?

Do not be embarrassed about talking to your medical team about this. Sex is an important part of many people’s lives.

Also, after your treatment, erections can help maintain the health of your penis – we refer to this as penile rehabilitation – so there are multiple benefits to finding an option that works for you.

Tablets such as sildenafil (also known as Viagra)tadalafil (Cialis)vardenafil (Levitra) or avanafil (Spedra) can help if the nerves that control erections were not damaged during treatment. These work by widening blood vessels to encourage blood flow to the penis and typically work within an hour. Effects usually last around four or more hours, though this varies according to the type of tablet.

However, these sorts of tablets are not suitable for those with angina (chest pain arising from blocked arteries to the heart) being treated with nitrates medication, as this can cause serious side effects.

An alternative option is self-administered injections of drugs including alprostadil (also known as Caverjector or Viridal Duo). Many men find the idea unappealing, but, should you choose this option, you will be shown how to administer the injections, which are painless and take effect within minutes.

Other options include a vacuum pump, which fits over the penis and draws blood, thus creating an erection. You then use a rubber ring around the base of your penis to hold the blood in place.

If none of these options work, then the other alternative is a surgical implant. The most common involves the inserted into the scrotum of a pump, which you squeeze so that it fills an implant in your penis with saline, achieving an erection.

Talking through your emotions with a sex therapist may also be helpful – and in fact can be beneficial for both you and your partner. A therapist can help unpick any emotional distress that is hampering you sexually, but can also help you find alternative ways to be intimate with your partner.

How often will I have a follow-up appointment following treatment?

Typically, you will have your first follow-up around six weeks after the end of your treatment. You’ll then be invited for further follow-ups every three to six months for the first two years and annually after that.

In the US, after two years you’ll be offered a test every six months and after five years you’ll just have one annually.

What happens at follow-up appointments?

A follow-up appointment is a chance for the doctor (or nurse) to see how you are and to check on any side effects, and for you to raise any concerns you may have.

Normally, prior to the appointment you will be asked to have a PSA test, and this meeting is a chance to review the results. If there is a rise compared to a previous result, further tests, such as an MRI or a physical examination of the prostate (if you still have one), may be suggested.

Don’t be embarrassed to raise any concerns you have, as these appointments are intended to provide you assurance and to help you access any further help you may need.

What is an ultrasensitive PSA test?

This is a type of PSA test that measures PSA in the blood at very low levels – much lower than the normal PSA test.

The theory behind ultrasensitive PSA tests is that they can give a better idea if the cancer is starting to return. However, their use is controversial – they can give fluctuating results – and some hospitals in the UK and the US have stopped offering them.

Should I be worried by slight fluctuations in my ultrasensitive PSA test?

Not necessarily. While the ability of the ultrasensitive test to detect tiny levels of PSA is why it is sometimes used after surgery, as levels of PSA are so low once the prostate gland is removed (because this is where PSA is made) as to be barely detectable (usually 0.1 mg/ml or less), this sensitivity also means it can detect tiny changes in PSA levels, which may not in fact be significant. This is why the use of ultrasensitive PSA tests remains controversial.

If your PSA level does start to climb, your urologist will usually review your original reports and take a view based on these as well – not just the ultrasensitive PSA results – as to whether there is any need for further (adjuvant) treatment.

If my PSA rises after surgery, does that mean my cancer has returned?

PSA is created in the prostate, so if you have that gland removed, your PSA level should be barely noticeable – by which we mean, typically, 0.1mg/ml or less. If your levels rise above 0.2mg/ml, this can be a sign the cancer has returned. Your doctor may refer to this as biochemical recurrence.

My PSA is rising after radiotherapy. Should I be concerned?

Some variation in PSA levels up to three years after radiotherapy is normal – in fact, this actually has a name: PSA bounce. Typically, levels rise by between 0.1 and 0.5 mg/ml and then go down again.

Quite why this happens is not fully understood. One theory is that cancer cells destroyed by radiotherapy release PSA; another is that it is a late reaction to the radiotherapy, causing some inflammation in the prostate.

One study found that 12 per cent of men who had external beam radiotherapy had PSA bounce nine months after their treatment ended – but this can occur for up to three years. Studies suggest that it can be even more common after brachytherapy.

A study published in 2017 even suggested that those who have a PSA bounce are at reduced risk of their cancer returning.

However, your doctor may propose further tests if your PSA level changes by more than 2 mg/ml above its lowest level, as this may suggest some cancer is present.

If my PSA rises, will I have more tests?

Possibly, as your doctor will need to weigh up whether more treatment is necessary.

You may be offered a PET scan which checks the whole body for the presence of cancer – dyes or reactive agents help show up areas of high cell turnover or activity which could indicate cancer. You may also be offered a CT scan (a series of X rays), or a bone scan.

The most sensitive is the PSMA PET scan which can detect cancer even when your PSA is below a relatively low 0.5. It works by detecting PSMA, a protein that is found on prostate cancer cells. A radioactive dye is injected, which is then attracted to the PSMA and shows up on the scan. However, it is only recommended for those who satisfy certain criteria – for example, those at high risk of recurrence – so check if this is an option for you.

I’ve had surgery and my PSA is rising. What’s the treatment?

If your PSA is rising after surgery, you will normally be advised to have radiotherapy, which will be targeted at the prostate bed (in other words, where your prostate gland was) and lymph nodes in the pelvis. You will also usually be given a six-month course of hormone therapy – the two together appear to be more effective.

If  your PSA is rising and scans show there is cancer in one or more lymph nodes in the pelvis, some surgeons will consider removing the lymph nodes alone at a second operation. For some patients, this can result in a long-term drop in PSA. However, it may not be suitable for all – your medical team can advise you.

I’ve had radiotherapy and my PSA is rising. What’s the treatment?

If your PSA is rising after radiotherapy, the most common next treatment is hormone therapy.

However, other options may be suitable, such as surgery, cryotherapy, or HIFU.

Can I have more radiotherapy if I had it as my primary treatment?

Sometimes, further radiotherapy is a possibility if your cancer has recurred in the prostate or pelvic lymph nodes. You should consult your radiation oncologist.

Why has my cancer recurred?

Some groups of cells may have migrated beyond the prostate (for example into the pelvic lymph nodes) before your treatment, but your pre-operative tests were not sensitive enough to pick them up. These would then grow sometime after treatment and subsequently show up on your PSA test.

Recurrence is more likely if, after surgery, there was a positive margin on the tissue removed – in other words, if cancer cells were found right up to the edge of the tissue removed. However, even where this is the case, it doesn’t always mean that the cancer will recur.

How likely is it that my treatment will cure me?

The prognosis will depend heavily on the stage of disease and whether it is advanced or localised to the prostate at the time of diagnosis.

For advanced disease cure will not be possible but with modern treatment the long-term prognosis and lifespan after diagnosis may still be very favourable.

For localised disease the long-term prognosis is excellent for most cases. Although some doctors will talk about remission as opposed to cure, most doctors would agree if you are disease free after 10 years, this is effectively a cure, because the chances of the disease coming back is so rare.

For all types of localised disease, after treatment, the chances of remaining disease free after 10 years are probably over 80-85%, but this will also depend on the risk stratification. Over this period higher risk localised disease may require secondary treatments.

I have been told I’m in remission. Is there any way to predict if my cancer will return?

Your doctor will be able to give you some idea of this.

You may also wish to consult one of the many online tools known as nomograms, which require you to provide your test results and other details about your disease, then calculate the likely outcomes of treatment. You should be aware, however, that the results provided by such tools are for guidance only – they cannot predict with 100 per cent certainty what will happen.

A number of leading academic centres have developed their own nomograms.

For example, Memorial Sloan Kettering a leading cancer centre in New York, has a number of online nomograms predicting long term prognosis which can be found at https://www.mskcc.org/nomograms/prostate.

Another example is the NHS nomogram developed at Cambridge University which does the same, as well as offering information about the side effects of treatment. It can be found at https://prostate.predict.nhs.uk/.

Are nomograms useful?

They can be – but remember the information they give may not always be the news you were hoping for. So, do talk to your urologist and family before deciding if you want to use one. 

Which nomogram is best?

No one nomogram is better than the other.

Some may suit some patients better, because they are directed at different stages of diagnosis or treatment – for example, after biopsy when considering which treatment to have, or when considering further radiotherapy.

Just ensure the one you use is supported by a reputable institution such as a university or hospital.

Can you live without a prostate gland?

Having your prostate gland removed will not interfere with your life expectancy. Indeed, if you’ve had it removed as a result of prostate cancer it will, potentially, improve it.

However, the removal of the gland, which is made up of a mixture of muscle and glandular tissue, will have a knock-on effect on some of your normal bodily functions.

One of those effects is on the way you orgasm.

That is partly because the prostate produces PSA, the protein that helps make semen more fluid, so allowing sperm to swim freely.

It’s also because during surgery the seminal vesicles, which are attached to the prostate and which produce around 70 per cent of the volume of semen, are also removed.  This means that although you will continue to produce sperm cells (in the testicles) you will no longer produce semen or be able to father children.

The muscle of the prostate normally forcibly pushes out semen into the urethra (the tube that carries it out of the body), so you will have largely dry orgasms – in other words there is no ejaculate (although some men may produce a small amount of fluid before or after an orgasm, which is fluid made by glands in the urethra). The intensity of your orgasms, however, should not be affected.

The removal of the prostate gland can also lead to incontinence issues. The surgeon will usually have to remove one of the two valves that controls the flow of urine through the urethra (the tube which also carries urine out of the body). These issues normally resolve over time.

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