Knowledge Is Power

Don't believe me? Ask Google, they became quite powerful peddling knowledge.

I see some recurring lines of questions and concerns on here, I thought putting it here might make it easier to find.

TLDR; Until you dig deeper with modern science and have advanced testing, like Decipher tests and PSE tests, you might either be worrying for nothing or not worrying when you should be. An MRI + biopsy + PSA is not enough knowledge to tackle this disease.

Your worries probably started the moment you heard your PSA was elevated. Before knowledge, it was our "oh crap" moment and we were in trouble. We now know that it's just a "check engine" light telling us we need to look at the dipstick and check our fuses. If we want to maybe stop here, ask for the PSE test, which is 95% accurate in determining prostate cancer.

The next stop is probably either a biopsy or MRI. Which one you do next is kind of a roll of the dice and dependent upon the urologist. The MRI might see things but it's far from a complete picture. The biopsy will see things a bit clearer but only in a handful of small samples.

In either case, you will likely end up with both the MRI and biopsy.

The biopsy is going to be where you get your Gleason score and that starts to really get scary. The problem is that a biopsy is a very tiny sample of your prostate, they target the edges of your prostate and any lesions detected via the pre-biopsy ultrasound or the MRI or both. This means they may hit the area of the worst cancer or miss it entirely.

Bear in mind that you will not have "a cancer", there will always be multiple occurrences of your cancer in the prostate. If you get a result of, say, 4 + 4 = 8 then there will likely be other areas that are 3 + 4, 4 + 3, 3 + 3 - all less severe versions. If they miss the 4 + 4 area then you might get a false sense of security, it's just how biopsies go.

At this stage you should be asking for a Decipher test, regardless of your Gleason score. This test analyzes the DNA of the cells extracted in the biopsy and compare the patterns and behaviors of those samples to samples from hundreds of thousands of other samples gathered over the years. Based on that analysis it can help provide insight if your biopsy indicates that the cancer is good, bad or worse.

With a biopsy + Decipher you will have some idea of the severity (Gleason score) and the aggressive nature of the cancer (Decipher score). Until you have both of these things then you are really not going in with the information you need to make a decision.

One exception: if your Gleason is 4 + 3 or worse, the Decipher is more of a confirmation of what is already considered aggressive cancer. But, if you are like the majority of men that get 3 + 3 or 3 + 4, the Decipher can have significant impact on your decision.

I'll use my own history. My PSA was 4.8, with 4 being the point where doctors say "hmmm, the check engine light came on". It becomes more noticeable when it was a big jump over a year or six months (mine was 3.2 the year before).

Off to the super sensitive PSA test with my urologist (I didn't know about PSE and it was not offered as it's not standard practice as of now), to confirm that it wasn't a faulty test, and the PSA is correct.

Then I went to the biopsy. 3 + 4 = 7, intermediate grade cancer. And it was only about 20% of one sample, with the rest being various samples sizes of 3 + 3 = 6. At this point the urologist said I would be on active surveillance but that he was ordering a Decipher test.

My Decipher came back at 0.68, meaning that it is likely to be worse than the biopsy indicated and also aggressive. This changed everything. AS was no longer a viable option, treatment was recommended. I could choose AS but it was not recommended now.

Fast track to my RARP and the knowledge gained, which pointed to trouble, was correct. My cancer stage was upgraded and the amount of 3 + 4 = 7 in my prostate was more than three times what the biopsy indicated - meaning the Decipher was correct.

If I didn't get the Decipher then I would be on AS. Three months would have passed and my PSA likely would have gone up again. This could happen for a while before additional uncomfortable biopsies indicated that I was 4 + 3 or worse and I would have likely had a worse outcome.

Because I got as much knowledge about this disease as I could before deciding treatment (and after talking to 9 doctors), I dodged one hell of a bullet. No incontinence, no erectile disfunction (not a single second of either) and part of that is because action was taken before it invaded my nerves or my bladder neck or other areas that make things far worse.

So, know your options. Get every reasonable test possible, because they will never know what you have until the entire prostate is out of you and they do pathology on it - it will always be a guessing game until then. It's why they have things like PSE tests and Decipher tests, so they can try to give a better picture with the limited amount of knowledge. There's also a genetic test you can do, but it takes a while to get done and the results don't necessarily shape your treatment, but might raise the eyebrows of your urologist to the point of recommending treatment - it's still extremely new science and not universally accepted.

Morals of this true story: your PSA and your Gleason scores are not the end of the discussion. Gleason grades are somewhat subjective, one urologists 4 + 4 is another's 3 + 4, downgrades do happen - but so do upgrades. Deciphers and PSE's help fill in the blanks and you should take advantage of them. Get neither a false sense of relief nor set yourself up for a harder life by just assuming the two standard tests are all you need. Get as many opinions as you possibly can, this is your life and strangers on the Internet are not good stewards of your health, but you are and should be.