Prostate and Beyond

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.

January blood test

I managed to arrange for my blood test to be done at the Bradford Royal Infirmary so had it done last Monday so the result would be in time for my appointment with Mr Singh today , 11th January. I got to see him only 10 minutes later than scheduled which was better than usual and there was nothing to report other than my PSA level now being less than 0.01, effectively zero. My next test will be in 6 months now, July, and if that is OK I’ll probably be put back to an annual test. If after 5 years 2021 the level is still within the range that counts as zero, that will be it. I’ll have no more scheduled tests or appointments with the BRI. Any further tests will have to be arranged by me with my GP. If and when it comes to this I will do so for my own piece of mind.

As a result of my experience several friends of a similar age to myself have had their prostates examined and PSA levels checked. So far only one has had to be further investigated and recently had an MRI scan and biopsy. No results yet. I think it is important to spread the word; as David, one of the specialist urology nurses said, to continue the missionary work! It’s not nice to discover you may have prostate cancer but what is immeasurably worse is to have it and not know about it. Actually, this isn’t quite true because if you have a very slow developing variety, as the majority of men will have in old age, then it won’t have any life threatening effects and you will undoubtedly die of something else, in complete ignorance of the cancer. But if it is a more aggressive variety, then you need to know as early as possible. So the choice is between head in sand or finger up bottom.

October 2017 blood test update

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.

October 2017 blood test

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.

July 2017 blood test

I had a blood test just before going away for 2 weeks to France so didn’t get the result until I phoned yesterday. The PSA level is still 0.01 so good news. This is the 4th blood test since my radical prostatectomy, 0.02, 0.04, 0.01 and 0.01, so things are as good as they can be at the moment.

I spoke to the specialist nurse today to find out what my Gleason score was after the pathology tests on the removed prostate and surrounding tissue. It was 3+4 so a total of 7. He said only 50% in my condition would get a recurrence and only 50% of them would go on to further treatment. An article I referred to in an earlier post gives this table:

If you have a Gleason score of 5-7
Your PSA increased more than two years after surgery

AND your PSA doubling time was greater than 10 months:
Your chance of not developing metastasis(having a bone positive scan) in:

      • Three years:  95 percent
      • Five years:     86 percent
    • Seven years:  82 percent
OR your PSA doubling time was less than 10 months:
Your chance of not developing metastasis in:

      • Three years:  82 percent
      • Five years:     69 percent
    • Seven years:  60 percent
OR your time to first PSA recurrence was less than two years:

AND your PSA doubling time was greater than 10 months:
Your chance of not developing metastasis in:

      • Three years:  79 percent
      • Five years:     76 percent
    • Seven years:  59 percent
OR your PSA doubling time was less than 10 months:
Your chance of not developing metastasis in:

      • Three years:  81 percent
      • Five years:     35 percent
    • Seven years:  15 percent

I was also told that the post operation pathology on the tumours were graded at T3a. This implies a locally advanced cancer, i.e it has spread beyond the prostate capsule, but it has not spread to other organs. My seminal vesicles and a surrounding margin was removed to be on the safe side. Another paper concluded:

Survival was significantly different when comparing pT3a to pT3b groups. The 5-year overall survival (OS), cancer-specific survival (CSS), disease-progression-free survival (DPFS), and biochemical-progression-free survival (BPFS) were 96% versus 72%, 98% versus 77%, 97.3% versus 79.3%, and 60% versus 24.2%, respectively. Specimen Gleason score was the most significant predictor of OS, CSS, DPFS, and BPFS. The risk of death increased up to 3-fold when a Gleason score 8–10 was present at the final pathology. Conclusions. Radical prostatectomy may offer very good CSS, OS, DPFS, and BPFS rates in pT3a PCa. However, outcomes in patients with pT3b or specimen Gleason ≥8 were significantly worse, suggesting the need for multimodality treatment in those cases.

This is also promising for me.

Exercise, not being over weight and maintaining a high level of general fitness and health, although there are no guarantees, are highly correlated with remission and higher survival rates. At the moment I am 13 stone 12 lbs, about a 10 lb heavier than when I had the operation last August. The plan now is to get back to 13 stone over the rest of this year. To this end I will be buying a smart trainer for my bike and start training and get involved in on-line racing using Zwift and a Facebook group called The Big Ring. This will involve a significant investment but but it is literally for life.

How Exercise Might Reduce Prostate Cancer Progression

“A new study suggests that vigorous physical activity will offer protection against prostate cancer progression because of its effects on DNA repair and cell-cycle pathways. The finding might help explain previous observations that men who exercise vigorously have a reduced risk for all-cause mortality and prostate-cancer-specific mortality”.

“Men who reported that they undertook vigorous physical activity for 3 hours per week or more were found to have a 49% lower risk for all-cause mortality and a 61% lower risk for prostate-cancer-specific mortality than those who exercised for less than 1 hour per week. The vigorous physical exercise consisted of jogging, cycling, tennis, or swimming. Men who reported this type of exercise for more than 3 hours per week before and after their diagnosis of prostate cancer had the lowest risk for all-cause and prostate-cancer-specific mortality”.

Prostate cancer update

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”.

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.

All’s well for the moment

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.”

Trial decision

Went to see Dr. Owen at 4.00pm on the 3rd November to discuss the trial I’m invited to join. I qualify as I have positive margins, i.e. cancer cells in the tissue around the prostate where the tumour was pressing against the surface, a low PSA level of 0.02 and am fully continent. All this was as described in my last post Today’s post prostatectomy consultation. My feeling at the moment is not to go in for the trial and stick with the default position of PSA monitoring and only having further treatment if needed. Hopefully this won’t be necessary but if it is my levle of fitness and health over the next few years will mean I will be able to cope with it.

I went for a blood test on Monday of this week and phoned for the result this morning. My PSA level is now 0.04 but I was assured this was not significant. It is expected that it will bobble about a bit and only of a pattern of regular increase and approaching or going past 0.1 will they be concerned. I’m seeing Mr Singh tomorrow (at 8.45!) so I’ll wait to see what he has to say before I make a final decision on the trial. I need to find out how much longer they will give me to decide. I think it is supposed to be withing 12 weeks of the operation but I might be wrong. It’s been 15 already. I was supposed to get a follow up call from Dr. Owens’ research assistant after my meeting with her but it never came. She may have decided from that interview that I was unlikely to accept.

Today’s post prostatectomy consultation

I made some notes on questions to ask Mr Sing in a recent post Decisions. He was able today to give me a little more detail.

The apex of the prostate where my tumour was pressing on the surface in fact has no capsule so dissecting this area is not so clear cut as the prostate goes right up to the pelvic floor muscle and it is not possible to take as wide a margin for testing as it is elsewhere. Dmaging the floor muscle could lead to permanent incontinence. The sample tissue sent off for testing showed some small areas of limited and focused cancer cells but there is no way of telling if these had gone any further into the surrounding tissue. The dissection is done with an electrical current and it is possible that any cancer cells outside of the incised margin may have been killed off anyway.

I was shown pictures of my prostate and there was an awful lot of cancer marked in red! I forgot to ask if it was confirmed as stage T3a but can ask on the phone which I will tomorrow.

My PSA was confirmed as 0.02, described as very encouraging, especially due to the small and focused positive samples. Although PSA is not a reliable indicator or prostate cancer while you still have one, once removed it is very reliable. It’s early days but there is a good chance it will go down to zero over a little more time and they will check again and arrange another meeting in 6 weeks time. If it rises, especially to over 0.2, then radiotherapy will be recommended. Even then, if left alone, it could be many years before it developed into a recurrence of a discernible cancer tumour.

The standard procedure from here on would be to simply monitor my PSA level and only offer further treatment if it reaches the 0.2 threshold. 50% of men in my condition will not need this. Of the remaining 50% a large proportion will still be cured and the rest most would be able to keep it under control fr many years before palliative care became the last option. This seems to warrant quiet confidence.

I still have to make a decision about whether to go into the trial in which I may be assigned to the group that has radiotherapy more-or-less immediately. At the moment my feeling is that I am likely to be in the 50% who won’t need it based upon my own strategy of nutrition and exercise to stop the cancer developing. I’ll need more information from Dr Owen next week.

Mr SIngh seemed mildly surprised that I have had no problems whatever with incontinence and that I played in my first racketball tournament last week, 9 weeks after my operation. I also mentioned I had just got back on my bike this weekend for very short distances. He didn’t say anything to dissuade me other than to remind me I had had major pelvic surgery. I’ll check this again by phone tomorrow. Also I need t check if it is advisable to not ride for a few days before PSA tests as was the case when I still had a prostate. Could it irritate the residual cancer in anyway and produce a higher reading?