A raised PSA - what it actually means, and what happens next

A raised PSA is not a diagnosis. What the test can and cannot tell you, why the MRI now comes before the biopsy, and the questions worth asking your own consultant.

I am not a doctor, and this post does not pretend otherwise. I wrote a short book about the prostate after watching friends go through treatment and realising how little of what was happening to them any of us understood at the time, and after a slightly abnormal blood result of my own led to further tests.

What follows is what I wish somebody had explained to me then. It is written for the man who has just been handed a number he does not understand, and for the partner or daughter sitting beside him in the waiting room, trying to follow the conversation.

The PSA test is not a cancer test

This is the first thing worth getting straight, because almost everything else follows from it.

PSA is a protein the prostate makes. The test measures how much of it is in your blood. That is the whole of what it does. It cannot tell you whether you have cancer, and it certainly cannot tell you whether any cancer you do have is the sort that matters.

Plenty of things raise PSA besides cancer. A urinary infection, an inflamed prostate, a catheter, a prostate examination, vigorous exercise, cycling, even recent sexual activity. A raised reading is a reason to look further. It is not a diagnosis, and treating it as one is how men end up having tests they did not need.

There is also no single figure that counts as abnormal. What is high for one man is unremarkable for another. Age matters, prostate size matters, and the trend over time often matters more than any single number.

Why the test divides doctors

If you have read anything about PSA testing, you will have noticed that experts disagree about it in public, which is unnerving when you are the one waiting for the result.

The argument is not really about whether the test works. It is about what happens afterwards. For every man whose life is saved by finding an aggressive cancer early, there are men who are found to have a cancer that would never have troubled them, who then have treatment they did not need, and who live with the consequences of that treatment for the rest of their lives.

That is why this country has never had a national screening programme for prostate cancer, in the way it does for breast and bowel cancer. The harm of finding cancers that would never have mattered is real, and it is weighed against the harm of missing the ones that do.

Both halves of that sentence are true at once. Anyone who tells you the PSA test is simply a good idea, or simply a bad one, is selling you half the story.

If your PSA is raised, here is the order of events

This is the part most men are not told in advance, and it is the part that causes the most anxiety. In most places now it goes like this.

First, the test is repeated. A single reading is not enough to act on. Your doctor will want to know whether it is rising, and how quickly.

Then an MRI scan. This is the big change of the last decade. Not long ago, the next step after a raised PSA was straight to a biopsy. Now, in most centres, you have a scan first.

Then a biopsy, but only if the scan shows something worth sampling. Many men with a raised PSA never get as far as a biopsy.

One more thing worth saying plainly. Most men with a raised PSA do not have cancer. It may not feel that way at 3 in the morning, but it is true.

The MRI changed the arithmetic

The MRI is not a perfect test. It misses some cancers, and reading it takes skill. But it has genuinely improved things, and the reason is simple - it shows the urologist where to take the samples.

A blind biopsy takes a dozen samples on a grid and hopes. A scan-guided biopsy takes samples from the place that looks wrong. That means more of the dangerous cancers are found, and fewer of the harmless ones are found by accident and then treated as though they mattered.

If it is cancer, what the grades mean

Here is where a lot of people get lost, so it is worth two minutes.

Cancer tissue is examined under a microscope and given a Gleason score, made of two numbers added together. A Gleason 3 + 4 and a Gleason 4 + 3 both add up to seven, but they are not the same cancer, which is exactly why the score on its own is so easy to misread.

So it is now reported alongside a Grade Group, from 1 to 5, which is much simpler:

  • Grade Group 1 is Gleason 3 + 3. The least aggressive, and often monitored rather than treated.
  • Grade Group 2 is Gleason 3 + 4. This is where most of the difficult decisions sit.
  • Grade Group 3 is Gleason 4 + 3.
  • Grade Group 4 is Gleason 4 + 4.
  • Grade Group 5 is Gleason 9 or 10.

The Grade Group is the number to hold on to. If a consultant uses one number in the conversation, it will be that one, and it is worth asking for it explicitly.

Doing nothing is a real option, and it has a name

Active surveillance, sometimes called watch and wait, is not the same as ignoring the problem. It means monitoring the cancer properly, with regular PSA tests, scans and sometimes repeat biopsies, and treating it only if it starts to change.

It is a legitimate choice, not a cop-out, and the evidence behind it is better than most people realise. The ProtecT trial followed men for fifteen years and found that death rates were similar whether men had surgery, radiotherapy or monitoring. But monitoring did mean more men eventually needed treatment as their cancer changed.

So it is a trade, and it should be your trade. It is a reasonable choice for some men and a poor one for others, and the grade is what usually decides which.

What the treatments actually cost you

Every option has a price, and it is usually a price paid in side effects rather than in money. This is worth knowing before the appointment, not after.

  • Surgery to remove the prostate can leave men with erectile difficulties and, less often, urinary leakage. Both improve with time for many men, but not for all.
  • Radiotherapy can cause bowel and urinary symptoms and erectile difficulties, and the effects can appear months or years later.
  • Hormone therapy lowers testosterone, and with it energy and sex drive. It can cause hot flushes, muscle loss and thinning bones. It is usually given for a period rather than forever, but the period can be long.

None of this is a reason to refuse treatment. It is a reason to ask what each option would mean for you specifically, given your age and your grade, rather than accepting the first one offered.

7 questions worth asking

Print these, or put them in your phone. Consultants are used to them, and they will answer them better than they might answer a blank stare.

  1. What is my Grade Group, and what does it mean for me?
  2. Is there any reason not to monitor this for now, rather than treat it?
  3. If I do nothing for six months, what is the risk?
  4. What are the side effects of each option, for someone my age?
  5. How many of these procedures do you do in a year?
  6. What happens if the first treatment does not work?
  7. Can I have some time to think about this?

That last one is the most important. Almost nothing about this disease is so urgent that you cannot take a fortnight to read and think, and any clinician worth having will tell you so.

2 things worth holding on to

Most men over 70 who are found to have prostate cancer will die of something else. That is worth knowing when a diagnosis lands and it feels like a death sentence.

But usually slow is not always slow, and that is why the grade matters so much, and why monitoring is not the same as ignoring.

Where to read more, from people who are qualified

I am not qualified, so check out these links for confirmation of any information.

If you are the sort of person who likes to keep an eye on your own numbers, you may also enjoy my post on home blood pressure monitors. The logic is the same in both cases: a reading is only useful if you know what it means and what to do about it.

If you would like the whole thing in one place

Everything above is covered at greater length, with the diagrams, in a short book I wrote on Prostate Awareness, about fifty pages, in plain English, with five diagrams drawn for the revised edition. It is a layman's guide and it says so on the cover. It is not medical advice and it is not a substitute for your consultant. It is simply the explanation I wanted and could not find.

You can see it on my books page, or find it on Amazon here:

If you found this post useful and know a man over fifty, send it to him. That is worth more than any review.

This post is general information, not medical advice. It is not a substitute for professional diagnosis or treatment. If you have symptoms or a worrying result, speak to your doctor.