What a coincidence! My daily dose of straight dope, just after returning from the hospital where I made an appointment for a radical prostatectomy.
I’ve had an elevated PSA value since at least 2010, when I started measuring it regularly (3.5 back then), though in 2001 it was only 0.9. It rose slowly but steadily to around 7.5 by then end of 2014, when I had the first biopsy with 58 samples. 4 had cancer, 3 on one side and one on the other. Gleason 3+3.
I’ve been studying this (I’m a physicist by training) since 2010. Once at a conference, the head of a university urology department thought I must be some physician he hadn’t yet met. 
Here is my condensed advice. I am not a physician, but my advice is well within the wide range of advice offered by serious physicians.
Measure the PSA starting at 35 years. As long as it is less than 2, measure it yearly. If it is between 2 and 4, measure it every 6 months; if between 4 and 10, every 3 months. Have a biopsy done if it is more than 4 for two successive measurements. If there is no cancer, continue as before. If there is cancer, measure it every three months and have a biopsy annually. (Depending on where you live, health insurance might pay for the PSA test (about $30), at least if you have cancer. If you are not living somewhere where biopsy and treatment are covered by insurance, you should be.)
Exception: If it is more than 10 on the first measurement, measure it again after 6 weeks. If it is above 10, have a biopsy. If not, see above.
Important: Measure the PSA in the same lab every time; there is considerable variation. What is important is not so much the absolute value but rather how it changes (unless the value is high, in which case the variation doesn’t matter as much). Measure it under the same conditions every time. It is usually measured from blood drawn in the morning. For three full days and 4 nights, avoid strain on the prostate. So, if the blood is taken Tuesday morning, Friday night is the last time you can live it up. The main sources of strain are orgasm and pressure (e.g. from riding a bike, horse, etc) and any sort of athletic activity which might involve indirect blows to the prostate.
When should you have treatment? If ANY of the following are true, you should have treatment: 1) Gleason score is more than 6, 2) a tumor is palpable in a digital exam (note: that is not the opposite of analog, but rather a finger in the rectum) or visible via transrectal sonography AND the biopsy shows cancer in it (otherwise you might need treatment for a benign tumor), 3) the PSA value is above 10 in two measurements 3 months apart. The more criteria are fulfilled, the more urgent it is. You always have at least a month to plan things, consider your options, etc (except if you did no monitoring at all and one day awake with blood in the urine due to prostate cancer, which might have already spread).
Alternatively, if the Gleason score is less than 7, tumor is visible at most in MRI (not sonography, digitally, etc), and the PSA is less than 10, you are probably safe without treatment. You can have it if you want, of course, but chances are it is not necessary, at least for now. It is now known that most men die with prostate cancer, but not of it. They would be in this category. However, those for whom it is a problem are also in this category—at the beginning. Most in this category will stay in it, but not all. If you monitor, you can almost always cure it—with greater or lesser side effects, depending on how long you wait). If you don’t, remember that prostate cancer is one of the leading causes of death.
Prostate cancer is different from other cancers for three main reasons. First, it usually needs no treatment. With almost all other cancers, you will die in much less time than your remaining life expectancy if nothing is done. Second, the treatment often has long-term side effects: incontinence (nerves and muscles damaged by treatment), impotence (nerves damaged), infertility (because of impotence and/or the lack of semen—at least via ejaculation; sperm can still be extracted from the testicles for in-vitro fertilization), lack of ejaculation (if the prostate is destroyed or removed during treatment), colon problems (tissue damaged during treatment). Many cancer treatments have no serious long-term side effects. This combination is the real problem. If it were only the question whether it will eventually cause problems or not, one could just treat it to be on the safe side—except for the side effects, which will probably occur in more cases than those which would have eventually needed treatment. If it were only the question of side effects, one would still treat it, unless one wants to die. The combination means that if you treat it early, you might have long-term side effects, but probably the treatment wasn’t necessary, and never would have been. So the best strategy is to wait as long as possible, but not longer, and once treatment is needed (see above), get that treatment.
What treatment should you have? This is the third difference. Most cancers have a preferred method of treatment. Prostate cancer has two main ones: surgery and radiation (X-rays through the skin), though brachytherapy (radioactive stuff in the prostate—either weak sources which remain (seeds), LDR, or strong sources which are inserted two or three times for 15 minutes (HDR) is also not uncommon. Chemotherapy is used only palliatively after it has spread. Hormone therapy (“chemical castration”) is sometimes used before and/or during other therapies, and occasionally as a standalone therapy. The advantage is that incontinence is never a problem. Impotence is, but the libido decreases as well, so this is less noticeable. Also, it affects the memory, so you don’t know what it used to be like. For some people, this is fine, though usually it is used after it has spread and no other treatment is available. It also doesn’t work forever.
There are also more-experimental methods, such as cryotherapy (freezing it with liquid nitrogen) and HIFU (highly focussed ultrasound). Both are sometimes used when surgery or radiation would be the standard treatment, but aren’t possible for whatever reason. For a couple of years now, HIFU can also be used in a focal therapy, i.e. destroying only the (small, at most Gleason 6) tumor. If you are lucky, this works, and in such a case it is by far the best treatment: the cancer is gone, there are essentially no side effects, not even short-term ones (except a catheter for a couple of days), and you can have it again if necessary (i.e. cancer appears again) and you still meet the criteria and/or have any other treatment. (Surgery is possible only once; if something was missed, it can spread and then there is no curative treatment. Radiation therapy is possible only once as well, since repeating would have too much damage from the radiation. First radiation then surgery is not possible since the prostate is then full of scar tissue. Radiation after surgery is done occasionally if the tumor was not completely in the prostate, just to make sure.)
From 2010 to 2014 my PSA went from about 3.5 to about 7, at which point I had a biopsy (see above). With no palpable or visible (except in MRI) tumor, Gleason 6, and PSA under 10, I did nothing but monitor the PSA (and get the annual digital exams and also transrectal ultrasound, neither of which ever found anything). Early 2016 the PSA started rising more quickly, and went from about 8 to about 12 in three months. Thus an MRT and second biopsy, which indicated the tumors known from the first biopsy. Still Gleason 6, still no palpable nor visible (except in MRI) tumor, but PSA was above 10 and rising, so I needed to do something.
I gathered a lot of information. Do this, and do this before you have to hurry. Also, join a self-help group (but be aware that there is a bias towards those with problems). The most common recommendation for me was surgery, because I am relatively young (born 1964, so 50 when the first biopsy was done in 2014). I was almost ready to be operated on by the physician in whose hospital I had the second biopsy, but due to fear of side effects I wanted to check if there was something better, and focal treatment with HIFU seemed worth investigating. The physician in whose hospital I had the second biopsy offers it (which is why I had the biopsy there), but didn’t want to do it with me since the cancer was on both sides (though only 1 (of 29 on each side) sample on the left side was cancerous, and only 5 per cent of the cells were cancerous). Another recommended surgery since I was young; not enough is known about long-term success of focal HIFU. Another said I had too much calcification. A fourth said OK. I didn’t search until I found someone who said yes; I found four nearby, contacted them all, and said before that I would decide after consulting with them. By chance, the one who said OK was the last one I visited. (Even if one had said OK before, I would have still visited all.) Probably not coincidentally, the last hospital was also the only one which examined me again (the others relying on results of previous examinations). Calcification? Yes, but not in an area which would cause problems. Both sides? Yes, but the tumor on one side was really small and hardly affected. (Keep in mind that a standard biopsy with 12 or 24 samples might well have found no cancer at all in my case.) So treat the larger tumor and, if necessary, treat the smaller one later. Young? Yes, but if it doesn’t work I can still do something else.
So I had the treatment in spring 2017.
Unfortunately, although the PSA dropped from 12 to 7.5, it didn’t go below 5, as it should have. 6 weeks and 24 weeks after HIFU it was about 7.3, but after another three months it was almost 9—rising again, and fast. Thus another MRI and biopsy (best is to have the MRI first then use it, together with ultrasound, in a so-called fusion biopsy, to take more samples where the MRI indicates a tumor, but of course samples from everywhere as well). I know have Gleason 3+4 (better than 4+3, which means that it is likely to spread quickly), the percentage of cancer cells is higher than before, the tumors are larger, and there are also cancerous cells in the area treated by HIFU. Thus, I decided to have surgery. I am lucky in that the tumor is ventral and still contained within the prostate, so nerve-sparing should be possible.
Why didn’t HIFU work? I probably had a bit of cancer all over the prostate, so treating the obvious tumor wasn’t enough. Also, I had two known tumors from the beginning. They probably arose independently, i.e. one didn’t spread from the other. Further treatment with HIFU would mean destroying the whole prostate, and this is better in the long term by surgically removing it, even though it is more trouble in the short term (major operation, incontinence and maybe impotence, at least at first).
Looking back, should I have had this after the first biopsy, and/or should I have had the first biopsy earlier? Not in my case, since the apparatus capable of focal HIFU (Focal One) has only been on the market for a couple of years. But this can be an option for people who are now in the situation I was in then. Also, in my case, it would probably have to have been repeated and/or followed by another treatment anyway, since my cancer is not concentrated at one place. It doesn’t help to remove a small tumor early if other tumors arise independently later. (For prostate cancer: for tumors which rarely arise independently but rather spread from a first one, one should cut it out as soon as possible.)
The first biopsy had 46 samples taken through the perineum and 12 through the rectum. (This sounds like a lot, but these are thin needles and even with this many less than half a per cent of the prostate tissue is removed.) The second had 14, also through the rectum. I noticed no difference. In both cases it was a night in the hospital afterwards and some soreness for a few days, along with blood in the urine, and blood in sperma a bit longer. Harmless (but let the significant other know, so that she won’t be surprised). The third biopsy had 24 samples, all through the rectum. Afterwards, only slight pain for a couple of hours afterwards. Blood in urine and sperm, but not as much as before. (Also, the amount of semen produced has decreased after the HIFU treatment. One goal of focal therapy is to keep at least part of the prostate, and thus at least some ejaculate. A dry orgasm is strange, and of course not as much fun as shooting a big load, but one can get used to it. Many women also don’t ejaculate, and things are less messy. Note, however, that the ability to achieve orgasm almost never suffers due to any sort of prostate-cancer treatment; different nerves are involved.) Thus, a biopsy is essentially harmless, and not having one due to fear of pain, running the risk of having the cancer detected only when it is too late, is really not an option, unless one wants to know nothing in advance and die unexpectedly and painfully.
Because there are so many methods, you will get many different recommendations. Also, different people have different wishes: some want the cancer removed no matter what, some want to avoid an operation and/or anesthesia, and so on. Thus, even with the same cancer, different people will have different preferences. Find what is best for you. Also, the cancer is different: Gleason score, size, location, PSA value, and so on. These influence the choice of therapies.
What can one do to prevent prostate cancer? There seem to be three main factors: genetic disposition, age, and diet. One can’t do anything about the first two. There are some indications that it is influenced by diet, but it is not clear exactly how. Prostate cancer is relatively uncommon in Japan, but just as common in Japanese who have lived for decades elsewhere, indicating that there is also an environmental component. That there is a genetic component is clear: one is more likely to get it if one’s relatives have it, even allowing for similar diet and so on; also, some races get it more than others, wherever they live and whatever they eat. Some studies indicate that red and/or processed meat (also implicated in colon cancer) can encourage prostate cancer. Alcohol does also. (Alcohol is actually a big cause of cancer.) Also, anything bad for the general health, like smoking, being overweight, not enough exercise, etc. There are some hints that pomegranate extract can at least slow the growth, though it can’t cure it. Since it is otherwise harmless, there is no reason not to take a couple of capsules each day, and also eat more fish and chicken and less red meat, which probably has other advantages as well. The main factors seem to be genes and age, though.
Is PSA screening a good idea? One often hears that it isn’t worth the advantages it brings, and that it leads to unnecessary treatment. With regard to the first, if screening could save one life in a thousand for, say, a million dollars (about the cost of a PSA test a year for 1000 men for 30 years), in a statistical sense, this would be about the same price as saving a life via chemotherapy. In the latter case, it is clear that the person will die. In the former case, it is just statistical, and also depends on people following advice like that I am giving here. With limited resources, it probably makes more sense to spend money on chemotherapy, say. Also, someone with chemotherapy can’t pay the cost themself, but PSA screening costs about 10 cents a day. So even if it is not worth it to society, is your own life worth 10 cents per day? What about unnecessary treatment? PSA screening gives information. No-one is forced into a biopsy, and in any case a biopsy is a very minor disturbance with the potential to make a huge difference. Also, no-one is forced to have treatment. You can do what you want with the information. Again, from the point of view of society, maybe it isn’t worth it if there is no guarantee that the people will use the information, but it should be worth it to yourself.
I’ll report back after I’ve had surgery.