Understanding your prostate cancer journey: a personal guide

If you've just been diagnosed with prostate cancer, I know the medical jargon alone can feel overwhelming. This guide will help you make sense of that jargon, as well as explaining some of the things that helped me navigate the information I received when I was diagnosed.

Understanding what’s happening can help you feel more in control of your prostate cancer journey. And it’s important to know there are people you can contact if you want to talk things through. You don’t have to read the literature or navigate the information by yourself.

Making sense of medical information

Your medical team will use technical terms that probably weren't in your vocabulary until recently. Words like PSA level, Gleason score and androgen deprivation therapy. They can make your head spin. 

But the truth is, you don't need medical training to understand what's happening to your body. You just need clear, simple explanations – and the confidence to speak up when something doesn't make sense to you.

Don’t be afraid to say, “I don’t understand”. And never feel embarrassed about asking your doctor or nurse to explain something again. Or again after that.

They expect questions – in fact, good doctors welcome them. If you're nodding along but don't understand, stop them and say so. This is your body, your health and your life. You have every right to understand what's being discussed.

It can be difficult to take in everything you’ve been told, especially if you’re neuro-diverse like me. The change in routine can sap your energy levels too. So try to get an appointment at a time of day when you know your energy levels will be higher.

And if you find yourself doing excessive research, like I did, just make sure you’re checking accurate and reliable sources.

Specific medical terms you might hear

When I was diagnosed, there were certain medical words I kept hearing and had to look up later. Not everyone is the same, but I find it helps to get all the information I can – even if it’s sometimes scary.

As soon as I got my diagnosis, I ordered the Tool Kit, which is a really useful folder of all the relevant resources from Prostate Cancer UK. 

Here are some of the key terms you might hear at the start of your journey:

PSA (prostate specific antigen)
PSA is a protein that’s made in your prostate and measured through blood tests. Higher levels can suggest problems, although PSA levels can increase for reasons unrelated to cancer, too. I had a simple blood test that took five minutes and it suggested something that needed further investigation. Prostate Cancer UK has lots of useful information about the PSA blood test if you want to find out more.

Gleason score
The Gleason score rates how aggressive your cancer cells look. It’s worked out by adding together two numbers, which represent the grade of most of the cells seen in your sample plus the grade of the most aggressive ones. A Gleason score of six means the cancer is slow-growing. A score of seven means moderate risk. And a score of eight means the cancer cells are likely to grow quickly. My score was three plus four, equalling seven, which meant my level of risk was moderate. To find out more, you can read Prostate Cancer UK’s guide to the different test results.

Localised vs advanced
Localised prostate cancer means the cancer is still inside your prostate. Advanced prostate cancer means it’s spread to your bones or other organs. If you’ve just been diagnosed, you can find out more in Prostate Cancer UK’s ‘What stage is my cancer?’ information.

And remember – if you’re not sure what something means, keep asking questions until it makes sense.

Understanding tests and what they mean

Diagnosing your cancer typically involves several tests, each building a more complete picture of what's happening inside your body. Understanding why you need each test helps to reduce any anxiety you might be feeling and empowers you to ask better questions.

Don't hesitate to ask, “what are we looking for with this test?” or “what happens if we find something?” Knowledge reduces fear. It’s your body – you deserve to understand what’s happening.

I’m autistic, so for my own journey, I found it really helpful to do some research on the various tests beforehand. And on the day of the MRI or biopsy, you might find – like I did – that you need a little help in the form of relaxation exercises to get you through these procedures.

These are the main tests you’ll come across, which your doctor or clinical nurse specialist will explain to you:

MRI scan
An MRI scan creates detailed pictures of your prostate using magnets – no radiation. The images help doctors see suspicious areas without being too invasive. You’ll lie still in a tube for 30 to 45 minutes. Some men find it claustrophobic, while others close their eyes and zone out. Bring an eye mask (without metal bits) if you think that might help. And feel free to ask for some music. 

Prostate biopsy
A prostate biopsy is where small tissue samples are taken from your prostate using a thin needle, usually guided by ultrasound or an MRI. You'll likely have some blood in your wee, poo or semen for a while afterwards – that's normal. For me, it was quick and a little uncomfortable, but it wasn’t painful. The results are very important to help you understand what you're dealing with.

CT scan, bone scan and PET scan
These scans check if the cancer has spread to your bones, lymph nodes or other tissues. Each type uses different technology to build a complete picture. 

Making difficult decisions about treatment

The treatment your doctor recommends will depend on the stage and grade of your cancer, your age, your overall health and – importantly – what matters most to you. Most treatments involve a trade-off between controlling your cancer and improving your quality of life.

I was handed a leaflet that covered the ins and outs of the various treatments, which I kept with me throughout my journey. My medical team also explained all my options, including a short discussion on success rates and potential side effects.

As doctors only have a limited time for each appointment, you might need to do some additional research or call Prostate Cancer UK’s Specialist Nurses for a chat, like I did. The final decision is yours, so think about what matters most to you: maximising your chances of a cure, avoiding certain side effects, keeping your sex life the same, or something else entirely. There's no wrong answer – just your answer.

What matters most to one man might not mean so much to you

For my own treatment, I was offered either radiotherapy with hormone therapy, or robotic surgery to remove my prostate (known as a prostatectomy). I wasn’t keen on radiotherapy – I didn’t want to risk bowel problems as well as incontinence. To help me decide, I also spoke with other men, including a Peer Support Volunteer at Prostate Cancer UK.

I decided on surgery and it was scheduled for four months’ time. While I waited, I did some more research into other treatments – my doctor said I could change course up to a week before the planned surgery.

I was interested in a treatment called HIFU, which stands for high-intensity focused ultrasound, after hearing a friend with the same Gleason score had been successfully treated. I contacted a focal therapy surgeon who said it might be an option, but there was an increased chance of my prostate cancer coming back (known as recurrence) – partly because of the location. Also, it wasn’t available in Scotland. 

I wrote to the Scottish government about this and their response helped me feel confident in my choice to have surgery. Try to speak to as many people as you can about treatments – men with lived experience and health professionals.

Since I’d read up about prostatectomy surgery before my operation, the side effects didn’t come as a surprise. I knew what to do to manage most of them. And despite the inconvenient side effects – like incontinence (leaking urine) and lack of erections – it looks like surgery was the right choice. What also helped was talking with fellow patients and the Specialist Nurses – before and after my surgery.

As a starting point for making your treatment decisions, take a look at Prostate Cancer UK's 'just diagnosed' webpage. As well as providing useful information, you'll also find guidance on how you might go about choosing a treatment.

Remember: your treatment choice is personal. What matters most to one man might not matter most to you, and that's okay.

Finding a sense of control

Understanding the medical terms is important, but it's not everything. This journey is tough – physically, emotionally and practically. You’ll need support, and help is out there.

The combination of expert medical care, clear information and support from nurses and other men who truly understand, can make what you’re facing more manageable. You're not alone. Thousands of men are dealing with prostate cancer right now, and thousands more have come through it before you. Other men have been where you are now. They've adapted to it and learned to live well despite it. You can too.

Understanding what's happening isn't just about being informed – it's about taking back some control when everything feels like it's spinning. You didn't choose this diagnosis – but you can choose how you respond to it.

Understanding the language your medical team uses, knowing what the tests will involve, and learning about your treatment options puts you back in the driver's seat – at least to some degree. You'll have bad days when the weight of it all feels crushing, and good days when you feel almost normal. Both are part of this journey.

Take time to deal with things when you feel you have the energy to do so. Don’t be rushed into anything and give yourself the space to process what will be a big event in your life.

We're here for you

Do you need immediate support with any of the issues raised in this article? Whatever you'd like to talk about, our Specialist Nurses are here to help. You can call 0800 074 8383, send an email or write us a message on WhatsApp. 

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