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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?”]

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.

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.

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.

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.

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.

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.

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 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.

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.

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.

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