This blog, initially, was not intended to be a diary about prostate cancer but that is what it has become. The last post was in January, just over two years ago which probably shows that not much has happened on that front. So it’s time to move on and put this blog back on the track originally intended although that is quite difficult to define. This post brings the prostate cancer story up-to-date and, hopefully, close it. Then it will be back to contemporary issues – brexit, the current Tory government and its policies, the coronavirus pandemic, my life in writing (!) and so on….

After 2 years of 6 monthly PSA tests to check for any recurrence of cancer from any stray cells post operation, all being well the blood rests become 6 monthly. It is now 3 and a half years since the operation and have had three 6 monthly blood tests all reporting 0 PSA. If this remains the case for 5 years I’m given the all clear. That’s not to say I will not get cancer in the future but that it will be, in all probability, unrelated to the previous prostate cancer. So, unless one of my remaining blood tests gives cause for alarm, that’s the end of my prostate story.

Health-wise, I have other problems now as it happens! I have a worn right hip and may have to have a replacement. It makes walking quite painful and I can no longer play competitive racketball. Just to add insult to injury I was diagnosed with a DVT a few days ago and am having to take anticoagulants while waiting for a blood test and scan. This may all be down to me having a bad chest infection for most of February and lack of exercise.

If I do need a hip replacement it is likely to be delayed as the whole health service is creaking under the pressure of the coronavirus pandemic. We have learnt today that the government is preparing to tell all over 70 year olds to self-isolate for 4 months. The logic of this and the government’s policy to combat this new strand of flu is worth a post to itself. Due any time soon.

I got a letter this morning notifying me of an appointment with Mr. Singh my urology consultant. This is very much out of sync with the 3 monthly interval but I was warned recently that the 3 monthly appointments had drifted back to about 5 months so I wasn’t too worried. However, I did ring the specialist nurse to check that this was just a routine appointment and not that something had come up they were concerned with. He checked and confirmed it was routine so I could rearrange it if I wished – it clashes with my U3A racketball group Christmas lunch. While he was at it he checked my last PSA blood test and told me it was less the 0.01, not the 0.02 I had been told. He also said that I can continue to have my blood tests at BRI rather than my GP. If this is true it’s good news on both counts.

Got the result of my blood teat at the beginning of October, I think probably the 4th three monthly test since my operation. This time the PSA level is 0.02. This is in the ‘no worries’ range – anything under 0.1 – but a rise on last time (<0.01). Apparently my blood went to a different lab this time and they may well use a different testing kit. There are 5 and each would give a marginally different reading. Also he had to search for my results under my HHS number rather than my hospital number, no doubt because of the new system they recently started using for patient records.

Another change is that they will no longer be reminding me of when a test is due and sending the plastic bag and instruction slip for the blood nurse. From now on patients will be responsible for remembering and arranging their own test with their GP. David, my specialist nurse, fears that GPs will baulk at this as it means they will have to pay for the test form their budgets. If mine does the BRI will have to make a specific appointment for me to come in for the sample to be taken rather than the current system where I just turn up at the blood clinic and wait in a queue. I predict this will cost lives where elderly and confused forget to arrange a test. On top of this, routine 3 monthly consultations are now running at about 5 months. For individuals in my condition this is not really a problem.

So my news is still good and I will in nay case be going onto 6 monthly tests before long and eventually, all being well, to annual tests. They are very happy if there has been no recurrence of cancer in the first year post-op, two years is generally considered to be evidence of a cure with 5 years being decisive. By then I’ll be nearly 77. On target so far.

The PSA level is now 0.02 so good news. This is the 5th blood test since my radical prostatectomy, 0.02, 0.04, 0.01, 0.01, 0.02 so far.

I got the result of my recent 3 monthly blood test this morning and my PSA level is now 0.01, so as yet no evidence of a biochemical recurrence of cancer activity. This is excellent news of course especially as I have been quite stressed about what the latest reading will be and the prospect of further treatment being necessary. I expect to get quite nervous every time I’m waiting for a blood test result but with every one that passes with no significant increase no doubt I will become more relaxed about it. So far my three post operative tests have given PSA levels of 0.02, 0.04 and now 0.01. If a test shows I need further treatment it will probably be 4 to 6 weeks or radiotherapy, five days a week, but I can now plan at least 3 months activity before the next one. My brother-in-law Kevin and I are planning a walk in April or May now, probably from Winchester back to Brighton where he lives along the South Downs Way. I will be OK also for our early July trip to France.

Biochemical recurrence is normally deemed to have happened if the PSA level is over 0.1 or 0.2 depending on which country you’re in. Also the rate of rise is significant:

“When looking at PSA velocity in a few hundred men who had undergone either prostatectomy or radiation therapy, researchers found that men whose PSA doubled in under three months had the most aggressive tumors and were more likely to die from their disease, whereas those whose PSA doubled in more than ten months had the least aggressive tumors and were less likely to die from their disease”. https://www.pcf.org/c/the-role-of-psa/

Even with biochemical recurrence it can be many years, at least five I think, before detectable tumours can be seen is scans so even if nothing is done survival can be reasonable, depending on how old you already are. Obviously the introduction of other treatments at this point would hopefully buy a few more years with radiotherapy being the usual one recommended.

There is no doubt that living with cancer can be rather emotionally debilitating and can have psychologically an adverse effect on the quality of life in your remaining years. The main thing is to keep healthy and active, eat well and exercise regularly and give your self the best chance of living longer and enjoyably.

Saw Mr Singh this morning and he confirmed the PSA result as 0.04. Although this is double the reading of 6 weeks ago he was not concerned, In fact the level can bobble about a bit and until it reaches 0.1 there is no concern and at that point then they will consider further treatment, Typically it would be years before this happens and in 50% of cases it doesn’t happen at all. In the cases where it does this is called biochemical recurrence. Even then it can be 3 to 5 years before any evidence of clinical recurrence, the visibility with scans of any tumours. My Gleason score was 7 which indicates a comparatively slow growing cancer so all should be well.

If the PSA level reaches 0.1 then radiotherapy is considered. Given that it could take 5 years before clinical recurrence this won’t automatically be offered. If for instance a biochemical recurrence is detected in a 78 year old with a life expectancy of 84 then the return of the cancer may not reduce life expectancy anyway and any problems and side effects of further treatment are worth it. Dr Singh assured me the decision to offer further treatment would be made on a case by case basis. I was concerned that life expectancy varies with socio-demographic group and individual characteristics of health and fitness. My next appointment is for 3 months time.

I had a chance to speak to the research nurse for the trial I have been offered and have pretty well made up my mind not to enter it. She’ll ring on Monday for a final answer.

I am in danger of  suffering from what is called PSA anxiety but I found the following on the internet that is encouraging

PSA Anxiety:

The Downside of Ultra- Sensitive Tests

You’ve had the radical prostatectomy, but deep down, you’re terrified that it didn’t work. So here you are, a grown man, living in fear of a simple blood test, scared to death that the PSA- an enzyme made only by prostate cells, but all of your prostate cells are supposed to be gone — will come back. Six months ago, the number was 0.01. This time, it was 0.02.

You have PSA anxiety. You are not alone. This is the bane of the hypersensitive PSA test: Sometimes, there is such a thing as too much information. Daniel W Chan, Ph.D., is professor of pathology, oncology, urology and radiology, and Director of Clinical Chemistry at Hopkins. He is also an internationally recognized authority on biochemical tumor markers such as PSA, and on immunoassay tests such as the PSA test. This is some of what he has to say on the subject of PSA anxiety:

The only thing that really matters, he says, is: “At what PSA levels does the concentration indicate that the patient has had a recurrence of cancer?” For Chan, and the scientists and physicians at Hopkins, the number to take seriously is 0.2 nanograms/milliliter. “That’s something we call biochemical recurrence. But even this doesn’t mean that a man has symptoms yet. People need to understand that it might take months or even years before there is any clinical physical evidence.”

On a technical level, in the laboratory, Chan trusts the sensitivity of assays down to 0. 1, or slightly less than that. “You cannot reliably detect such a small amount as 0.01,” he explains. “From day to day, the results could vary — it could be 0.03, or maybe even 0.05” — and these “analytical” variations may not mean a thing. “It’s important that we don’t assume anything or take action on a very low level of PSA. In routine practice, because of these analytical variations from day to day, if it’s less than 0. 1, we assume it’s the same as nondetectable, or zero.”

http://urology.jhu.edu/newsletter/prostate_cancer52.php