After playing squash competitively from the age of 17 to 40 I didn’t play any racket sports until about 12 years ago, at the age of 65. That’s if you don’t count a couple of years playing table tennis in the Halifax TT League in my early 60s.Then I rediscovered racketball, a variant of squash with a shorter strung racket and a larger bouncier ball. I say rediscovered because in the mid 1970s when squash was losing its popularity and player numbers several squash clubs experimented with racketball as an easier game to play for beginners and older players. At the time I and my fellow squash players thought it was great fun but not a serious game. We called it rather disparagingly old mans’ squash. Much later, as an old man, I thought, and still think, it’s a great game.
The story so far. As most European countries are moving towards lock-down – Eurpoe is officially the epicentre for the world pandemic having taken this role on from China – the UK government is following its own path despite massive criticism from 100s of doctors and experts. We are not trying to contain the disease. We are trying to roll it out across the population in a controlled way so that it is eventually defeated by ‘herd’ immunity. There is no vaccine and one wont come along in time anyway so we will be vaccinating our population by giving them the disease. Most will recover (the death rate is estimated between 1% and 3%) and develop the required antibodies.
In order for there not to be massive death and the total inundation and collapse of the NHS, the vulnerable, particularly the elderly over 70s, will be kept in isolation mainly at home for as many months as it takes. When they are eventually let out the disease will have been eradicated as there will be no hosts or infected people to pass it on.
This is a risky strategy. The NHS may still be unable to cope and the death toll will still be massive. The disease may not be eradicated by this strategy of herd immunisation and when the elderly are let out the virus will have a field day.The virus can evolve and mutate and visit us i a different form. Maybe in the long term we will have a flu vaccine that will deal with it but this will be too late for 100s of thousands, possibly millions.
I’m not sure of an accurate figure for the percentage of the population who are 70 and over but it is at least 12%. The vast majority of these are designated economically inactive but none the less they make a significant contribution to the economy in two ways – their unpaid work in the voluntary sector and child care and their role as consumers of goods and services. Just one example: many grandparents look after their grandchildren while their children go to work. If and when schools are closed, as is happening across Europe, parents will have their ability to work seriously compromised.
Of course the alternative to the UK policy would be to follow what the rest of Europe is doing – general social exclusion and closure. The problem with this, one the government is trying to avoid, is economic meltdown. The plus side is that it has been shown to save lives. The government is weighing up what balance it wants to achieve between the extent of the death toll and the extent of economic damage. Critics say they are prioritising the economy.
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 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.
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.
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:
|WHAT THE NUMBERS MEAN|
|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:
|OR your PSA doubling time was less than 10 months:
Your chance of not developing metastasis in:
|OR your time to first PSA recurrence was less than two years:
AND your PSA doubling time was greater than 10 months:
|OR your PSA doubling time was less than 10 months:
Your chance of not developing metastasis in:
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.
“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”.
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.
I’m currently doing a Future-learn free course on the use of exercise to treat diseases and conditions of various sorts https://www.futurelearn.com/courses/exercise-prescription. This is of particular interest to me due to my general concern to keep fit and healthy and ward off possible heart disease in the future but also as exercise may also inhibit the development of my remaining cancer. I also have a very dear friend who is currently recovering from a quadruple bypass operation to deal with her heart condition and am keen to see if there is anything I can do to help her recovery. The course is for health professionals who are interested in prescribing exercise for their patients. Reading some of the materials it is clear that exercise can be potentially dangerous for some heart condition patients and should be prescribed with great care. Any activity is better than no activity even in these cases but it is imperative not to overdo it. There are ways of assessing an individual’s readiness for exercise and it will be important to listen to the consultant’s and physio’s advice. I think it is normal these days for heart patients to be put on a supervised exercise programme, as was my brother-in-law after having a couple of stents inserted. What will be important is keeping an appropriate level of exercise going after the programme (coupled to any dietary changes needed). The problem here is likely to be motivation, an area where friends and family can definitely help.
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
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.”