The first signs of a possible problem came with a routine check-up showing an elevated PSA level. The check-up was not carried out by my usual GP (who I have visited once in the last 10 years!) but the doctor carrying out the check advised that I should go to my GP in 2 or 3 months and get the PSA level checked again. At 9, the level was not considered to be a real concern and it was thought that it would probably go down.

I duly went to my own GP and found that there was no change in the PSA level. My doctor carried out a rectal examination and said that I had a fairly large prostate, but what did I expect at my age? Never the less, he recommended me for a ultrasonic examination. This is a rather unpleasant procedure with a probe that looks to be about the size of a baseball bat which is inserted where the sun does not shine.

An appointment was made and another couple of months went by. The doctor carrying out the ultrasonic examination told me "you have a large prostate, but what do you expect at your age?" He could not see any problem, but recommended that I have an MRI scan. He also arranged for me to take a peeing competition test. For this, you have to drink lots of water an hour or two before turning up at the hospital bursting to go to the toilet. You then pee into a bucket on a weigh scale (a little bit more sophisticated actually) and it records how fast you urinate and how much you urinate. I did really well on both speed and quantity, but after the great relief of filling the bucket the doctor took an ultrasonic scan of my bladder and saw that I had retained approximately half a liter of urine - even though I felt comfortable and finished.

More time went by and I eventually had the MRI scan. A familiar story, the doctor carrying out the scan told me "you have a large prostate, but what do you expect at your age?" He could not see any problem, but recommended that I have a biopsy.

Another couple of months and the biopsy was duly carried out. A most uncomfortable procedure with the ultrasonic baseball bat again, but in addition this time a needle is shot into your prostate again and again to take the samples. 11 cores were taken and when the results came back they showed that 10 of the samples were clear, but one of them showed a very small positive trace.

At this time, the hospital bought a new machine that was able to combine the results from an MRI scan with the image from the ultrasonic baseball bat and build up a 3D image of the prostate when taking biopsy cores. The doctor was, of course, keen to use the new machine and recommended that I have a further biopsy. The second biopsy was far more uncomfortable than the first, as it took much longer, but with the added accuracy from the enhanced picture, the doctor only took 6 cores. This time 3 were clear, but 3 showed clearly the presence of cancer cells. I scored a Gleason of 3+3 and 4+3. This was now approximately 12 months after the original high PSA count had been noted.

It was recommended that I have a radical prostatectomy. Based on very little background reading, I trusted to the recommendation of the doctor and just a couple of weeks later I no longer had a prostate. Then the surprises came. After the operation the surgeon told me that the procedure "had not been optimal". The report from the pathology lab said that my prostate had not only contained "a substantial tumour", but that the cancer had spread outside of the prostate capsule. After the time and difficulty in determining that I had a tumour at all, I had expected to hear that the tumour was small and completely contained within the prostate.

I was quite anxious after the operation, but very relieved when after a few weeks a PSA check returned the result "no detectable level".

My recovery from the surgery, in hind sight, went well. I was prepared for the expected side effects, but I was devastated for the first couple of days after the catheter was taken out. I was prepared for incontinence problems (expecting to be a bit "leaky") but not prepared for what seemed to be a continual deluge of urine flowing out of me. I had to use a diaper that was about a foot thick and it still seemed to need changing every few minutes! Fortunately this improved rapidly after the first few days. Within a few weeks I was just using light pads and after 6 months the pads were mostly just a precaution to protect against the occasional drip. Erectile dysfunction came and went and after 6 months or so, although it was now much more difficult to get an erection than before the operation, things were functioning fine as long as my partner put a little extra effort into it (not a bad thing!).

For the first 12 months, regular checks showed a PSA level of zero. Happy days. Then came a check where the PSA showed as 0.1. The doctor was not worried by this, saying that the level had to be perhaps 0.3 before there was any cause for concern. If this should happen, perhaps a little radio therapy might be needed. The next test also showed 0.1, with the doctor commenting that no change was very positive.

My last routine check was a few weeks ago and the PSA was up to 0.2. The doctor recommended that we wait another 3 months, take a new test and see if there was any change. Shortly after the check-up, I began to experience pain in my lower back. I thought that this was the result of straining it working on the car, but the pain did not go away. I also began to feel an uncomfortable feeling in my hip and pelvis. Back to the doctor and I am booked in for an MRI scan next week. The pains continue and I am trying to steel myself ready to be told that my cancer is metastatic. At least this time I am much more prepared to talk about the alternative treatments. Maybe I really have just strained my back...

My doctor told me that it was rather unusual for a patient to respond "that is really good news" when diagnosed with two prolapsed discs in the lower spine. Compared to the diagnosis of metastatic PC that I was preparing myself to hear, it was fantastic news.

So now it is back to waiting again. Another 6 weeks or so to see if the PSA level has decreased or if it is steady or increasing. Then the possibility of radiation treatment. So far I have no questioned or looked into the methodology of radio therapy. I am not at all sure what they use as a target when my prostate went into the incinerator nearly two years ago. I suppose that they probably just nuke the general area where it used to be on the assumption that the PSA is originating from prostate cells remaining behind after the surgery. I have plenty of questions to ask if the doctor tells me that I need this treatment after my next check-up. It is not something that I look forward to, with possible return of the incontinence and erectile dysfunction that I thought was pretty much behind me. Maybe it will not be necessary. Fingers crossed.........

Nearly two years on from having the radical prostatectomy and things have seemed to be going very well. Erectile problems are minimal, with sexual relationships requiring a bit more work than before the operation but on the whole quite satisfactory.Incontinence problems are a thing of the past and I have not had to wear a pad for the last 6 months or more, even when exercising hard, even when out drinking beer! I still concentrate before coughing, but I think more from habit then need.

However, the last three routine tests have given a PSA level of 0.2. After the operation, the first few tests over the next 9 months or so gave the result "undetectable". Then came a test result of 0.1, which repeated for the next two tests, before the first result of 0.2 came in. This might seem pretty low, but for somebody that does not actually have a prostate any more, it is too high. The doctor has recommended that I have radiation therapy and I am currently waiting to see the specialist that will advise what will be done and hopefully tell me more about the treatment itself as well as the likely effects.

It may be that the PSA level is resulting from a few remaining prostate cells that are in fact perfectly healthy. The chance is relatively high though that even if they are healthy now they will mutate sooner or later, so the doctor wants to see the gone. I hope it is a good idea.

There is quite a lot of information available on the internet regarding radio therapy and the effects that it has when administered as the primary treatment. I have not been able to find anything that talks about the treatment when there is no prostate to target. The doctor that has recommended the treatment told me something about the procedure and said that basically the radiation would target the periphery of the space that my prostate used to occupy. To me, that sounds like exactly the place that my remaining nerve ends are! That may be bad news for the erectile dysfunction. The doctor said that the side effects are similar to full radiation therapy as a primary treatment, but that the effects are very variable from person to person. He also said that the amounts of radiation used are relatively low as there is a much smaller total target area. Maybe that is positive.

I hope to get much more information when I see the specialist in a few week's time. It is a bit depressing to be facing a treatment that is not only likely to have side effects, but is likely to have side effects that will get worse as time goes on. At least with the surgery, a few weeks after the operation was as bad as it could get and I had at least a couple of years of continual improvement to look forward to. There doesn't seem to be much to look forward to after radiation therapy, just the consolation that to have not had it was potentially much worse.

More news when I have seen the specialist and have a program for treatment.

Next step coming up.

My PSA level has stayed at 0.2, but the recommendation is to have radiation therapy as a precaution. Thankfully, no signs of any spreading or any tumours, but the recommendation is to have the radiotherapy anyway to finish off the remaining prostate cells that are responsible for the PSA level not being zero.

As far as I can tell, the treatment is identical to radiation therapy as the primary treatment. I will be going in every day, Monday to Friday for 33 sessions; total treatment time about 7 weeks. I am not looking forward to going back to the side effects that I had pretty much got over after the surgery, but I just have to tell myself it is better than the alternative.

Treatment starts in a week or so. I will write at the end of the treatment and report on how it goes.

Roughly ten months now since the radiation therapy. PSA at around 0.2 when I started the therapy, which had doubled to 0.4 after 6 months and now has more than doubled again in the last 6 weeks.

The doctors think that it is unlikely that the cancer has spread (PSA would be higher) and suspect that there is probably a bunch of cells in the area of my ex-prostate that were missed during the prostatectomy, that survived the radiation treatment and are now growing.

Next step will be PET CT scans to see if they can find the growth and then decide on a treatment. A bit depressing, as it seems that there is no hope of a cure any more and the next treatment is almost certainly hormone therapy, which I do not look forward to.

Look on the bright side - no sex should mean that my golf handicap is going to plummet :-)

An interesting year, because I started work in South Korea and continued my treatment here.

The first checkup here in March showed that my PSA was up to the highest value since my prostatectomy, at nearly 5. The level was in fact continuing to increase at an exponential rate. The doctor here didn't take longer than a couple of minutes before recommending hormone therapy. This was something that my Norwegian doctors had been suggesting was the next step and it came as no surprise.

I was surprised when the Korean doctor told me that they routinely used hormone treatment following a prostatectomy; I do wonder if that had been applied for me, the few cancer cells that presumably survived the operation would have been killed off. At the time, I did not know enough to question if this was a sensible precaution, especially knowing that the biopsy on my prostate showed spreading outside the prostate capsule. As things have panned out, the treatment is only being used now that the cancer has re-established itself somewhere and is growing.

I was immediately given a Leupolin injection and a course of Bicadex tablets to take daily and I was told to come back in a month. The end of April saw a dramatic improvement, with my PSA right back down to 0.1. The doctor seemed very pleased with this. I was too, seeing the PSA fall so far and not noticing any ill effects from the treatment. I was given a new Leupolin injection and told that I did not need another check-up for 3 months. No more tablets.

I was quite pleased with this as well, because there were no serious side effects from the injection and I was feeling pretty good. Not so good at the check-up in August though, the PSA was back up to 4.5, almost as high as the peak that it reached in March. This time the treatment was a much larger dose of Leupolin and a big box of Bicadex, one tablet daily. That was just over a couple of months ago.

This time, side effects blossomed! The first thing that I noticed was a hard lump in my arm at the site of the injection, but this was not painful, so just a distraction really, Then came the hot and cold sweats, particularly at night. General tiredness and lethargy came next together with an overall feeling of not being particularly well. Then I noticed tachycardia. I check my blood pressure fairly often, due to suffering with slightly high blood pressure and the monitor that I use also displays pulse rate. My resting pulse had always been a bit on the high side, typically in the 70+ bpm region, but in the beginning of October this very often showed as up close to 90. Now in November, I am often seeing a pulse rate of around 100, sometimes a fair bit higher.

The tachycardia and all of the other symptoms seem to be getting progressively more severe. I am waking many times in the night bathed in sweat and break out in a sweat many times during the day. All together with a general feeling of not being very well. Altogether, not very pleasant.

Next check-up is due in a couple of weeks and until then I am still taking the Bicadex and there is nothing to be done with the injection. I am fairly sure that the tachycardia is a result of the treatment and this is probably also a large contributor to all of the other side effects so I hope that firstly this tough few months will have knocked the PSA level right back and that secondly the next treatment will be a little less stressful.

More news soon........

The last 12 months have been interesting, with a change to being treated by Doctors in South Korea, where I decided to take a job for 12 months.

After I began to have a detectable PSA level again, the actual level showed a classical exponential increase. It took a long time for the first detectable level of 0.01 to work its way up to a 1.00 level, but the last check that I had in Norway (PSA 1.2 in December 2017) had increased to PSA 3.5 when I had my first check in Korea.

The Doctor put me on to hormone treatment immediately, with an injection of a slow release hormone into my arm muscle and a daily oral tablet. 1 month later and the next check-up showed that my PSA level had fallen dramatically, right back to 0.15. The Doctor was very pleased (me too!) and decided that another slow release injection would be all that I needed for the next 3 months. At this point I had minimal noticeable side effects and I was optimistic that the low PSA level would continue.

No such luck. 3 months later and my PSA level was back up to over 3. The slow release injection was repeated for the next 3 months, together with the daily tablet again. This time the side effects kicked in seriously. Probably the worst side effect is the tachycardia; at rest my pulse often starts racing up to 100 plus, often accompanied by hot sweats and dizziness and pains in the chest. This happens several times a day as well as frequently at night, resulting in loss of sleep and ending up with me generally feeling tired. It has been a bit like living every day with a heavy hang-over and expectation of an imminent heart attack.

The plus side was that at the end of the 3 months, the next check-up showed my PSA right back down to 0.15. Some compensation for feeling so lousy all the time. This was my final check before leaving Korea to return to Norway and the Doctor gave me a final injection (reduced amount to last for just 1 month and hopefully reduce the side-effect consequences) and more tablets.

I had a new check-up as soon as I returned to Norway and continued with the daily hormone tablets, but no further injection. This has lead to a steady increase in my PSA (up to just over 1 at the last check) but with no change in the undesirable side effects. Longer term side effects are now also showing, with obvious loss of body hair, loss of muscle tone and weight increase. I no longer have a libido, but my golf handicap is improving.

I have a new checkup scheduled for next week. This will show where my PSA level has ended up after nearly 3 months with just the daily tablet and no slow release injection. It seems pretty clear that the most effective treatment for reducing my PSA has been the combination of both injection and tablet. I am just hoping that the Doctors can come up with something that is as effective in keeping the PSA down but with less intrusive side effects.

Treatment is now down to a 3 monthly injection of hormone treatment. It is clear that as soon as I stop the treatment my PSA begin to climb rapidly, so I guess that I am stuck with this until it stops working. The only good thing is that the side effects are less severe than when I was taking the hormone orally.

The side effects are many. Physically, most of my body hair has vanished, I have generally got fatter and flabbier and muscle tone is deteriorating. I know that I should try and train more and eat better, but I am not very good at these things. I come home from work and a pint or two of my homebrew is much more attractive than running around the block.

The worst side effects are the hot flushes and the tachycardia. I am only really aware of the tachycardia if I check my pulse and find that it is at 100+ when I have just been relaxing for the previous 10 minutes. The hot flushes are an annoyance during the day and a real pain at night. Typically I am woken 3 or 4 times every night with a hot, sweaty flush and then I struggle to get back to sleep. End result is that I am very often tired the next day.

Still, now 6 years since my operation and I am still here, still enjoying a beer in the evening and a round of golf or a bit of fishing at the weekend, so things could be worse.

Despite the fact that my operation was not very successful, I would still recommend anyone offered a prostatectomy to go for it. The odds are in your favour of a complete cure. Even if you can survive a long time with this cancer, life would be much nicer without it.

I guess that I am close to the final straight now. At the end of last summer, while I was being treated with a 3 monthly injection of Zoladex and daily oral Casodex tablets, my PSA started to go up again. Not just a bit, it rocketed. I had been quite stable with a PSA of less then 1, but at the 3 monthly checkup it was up around 5 and I was sent first for an x-ray and then a CT scan. No sign of problems with my skeleton, but the CT scan showed metasteses in my lymph nodes, primarily in my upper body and neck. BY the time I got the scan results, my PSA had soared to 50, by far the highest level ever (for me) and way above the level when I was first diagnosed with PC (PSA was only around 12 at that time).

My daily tablets were changed to enzulutamide (goes by the name of Xtandi here) and although this aggravated the side effects of the hormone treatment, is has brought my PSA back to about 1. Unfortunately, I know it is only a matter of time before these tablets stop working as well. Every time I go for my 3 monthly checkup I expect to be told that my PSA is increasing again.

What will come next? I guess it will be chemo. There are so many promising treatments, particularly immunotherapy and CAR T therapy, but they all seem to be "coming soon", not actually available for treatment right now. "Soon" is not soon enough for me, unfortunately. Next checkup later this month and I am keeping fingers crossed for enzalutamide remaining effective for a good while yet.

I am not quite sure where I need to pick up my story, but last year my PSA, which had been stable at less than 1, began to sky rocket. The 3 monthly checkup showed a PSA of above 10 and a round of x-rays (for skeletal metasteses) and CAT scans showed spreading of the cancer to the lymph nodes in my upper body and throat. By this time my PSA had sky rocketed to a record high of around 50. Bicautamide (known as Casodex here in Norway) was stopped and replaced by enzalutamide (Xtandi) tablets; 3 monthly injections of Zoladex continued.

My PSA was soon back to below 1, but after 12 months of Xtandi my last checkup showed an increase of PSA to 2.1. Still pretty low and the Doctors have advised just continuing the same treatment, monitor the PSA and then a new round of scans if there is a significant PSA increase.

Loooking at the Pro's and Con's of my treatment, the Con's look to be winnning. The side effects are many:

I have tablets for my stomach (reflux)

I have tablets for high cholesterol

I have tablets for high blood pressure

I have beta blockers for tachycardia (racing pulse)

and I have vitamin D and magnesium tablets to make up for deficiencies. I still get hot flushes and profuse sweating - particulary at night - muscle continues to degenerate into fat and I seem to be permanently tired. And, of course, complete erectile disfunction.

There are Pro's though.

I am still working (I think this is good!)

I still enjoy paying golf, going fishing and a whole variety of other hobbies around the home

I am still here :-)

All in all, the Pro's win. I don't know what to expect when the enzalutamide stops working, other than expecting a new round of scans before the doctors advise the best treatment to continue with. My next update will be posted when that happens and I find out

A new scan taken just before Christmas. A PSMA scan this time. This was a new one on me, but after reading about it (Google) I am just amazed that it hasn’t been used before. Probably technology moving on. Not particularly good news from the scan, as there are signs of lesions on both my spine and pelvis as well as the metastases in my lymph nodes (although these do not seem to have any noticeable growth, which is good). Maybe the lesions on my skeleton were there earlier, but just not picked up by the standard CAT scans.

Anyway, although the tumor growth is slow (has to be something a little bit positive), my PSA is climbing steadily and I have now opted for chemotherapy. This seems to share in common with all the other treatments that it is a case of try it and see what happens. It will almost certainly have side effects, but they might be minimal or they might knock me off my feet. Probably somewhere in between. The treatment may be extremely effective or it may have almost no effect. Probably somewhere in between. The chemo treatment, by the way, is stuff called DOCETAXEL.

My last PSA check was back in early December and a value of around 4.5 meant that it had doubled since the previous check a few months earlier. I am not sure if a new check has been made immediately prior to starting the chemo, but it doesn’t seem to be very important. It certainly won’t have gone down and the treatment is now set. I am expecting a total of 6 rounds of treatment at 3 week intervals. After the second treatment I have a discussion with the Oncologist to see how things are going and if all is OK, I then take the next 2 treatments after which they will take new scans to see how the progress is coming along. I am told that the immediate side effects (mostly feeling nauseous, fatigue, itching, loss of feeling in fingers, toes) generally kick-in after 3 -10 days. After the third or fourth treatment, longer term effects such as hair loss and perhaps more severe general side effects kick in. This all sounds like so much fun, that I thought that I would keep a relatively detailed diary to have an accurate record of how things go. Day 1 is 09 January 2023 and here we go:

Day 1

Actually began on Jan 8th with a couple of anti-allergy tablets. These were repeated twice on the day and once again on day 2. Treatment started at 08.00 with a blood test to check that my immune system was up to scratch (the chemo apparently does it a lot of damage) and the first treatment started just after 09.00. The Docetaxel is administered with a metered pump and a drip over about 90 minutes. This was surprisingly painful! Nothing to do with the chemo, but my hands and feel were packed in freezing gel straight out of the freezer, slippers on my feet and mittens on my hands. My feet fairly quickly lost all feeling, but my hands hurt like hell for over an hour. Apparently, a lot of people refuse the freezing mitts, but I figured better to hurt for an hour and (hopefully) reduce the long term, long lasting effects. One of the side effects of the chemo, apparently, is not just loss of hair, but also drying, cracking, even loss of nails. Freezing the hands and feet down reduces the blood flow to them and thus reduces the effect of the chemo. Extremely uncomfortable at first, but once your hands and feet go numb it is not so bad. The rest of the day was uneventful. They told me to go home, relax and drink a lot. So I had a couple of beers, dinner with a bottle of Savignon Blanc and an early night. Probably not quite what the Doctor intended, but I wasn’t going to question him on that.

Day 2

Woke up feeling rubbish. This has been normal for me ever since I started on the Goserelin implants and the daily Enzalutamide tablets do nothing help. Breakfast as usual and I noticed that my tongue feels strange (almost as if it is vibrating) and I have a metallic taste in my mouth. Otherwise no noticeable effects from the Docetaxel. Late afternoon I started to get heartburn, to the point that it was quite uncomfortable (something that is not usual for me), but drinking yoghurt and finally a light dinner cleared it up. I slept for an hour or so in the late afternoon, probably just as well because I did not sleep much that night.

Day 3

Woke up feeling as usual. Heartburn is back, but the tablets that I was given to take if I felt nauseous have cleared it up. Very tired and slept for an hour or so at around 15.00 in the afternoon. Early to bed again, but only slept very fitfully. I was probably laying awake

Towards the end of last year my PSA, which had been quite stable, began to increase. Although scans (MR and CT) have not worked at all for me in the past a PSMA PET scan showed spreading of my metastases, both in lymph nodes and now spreading to my skeleton as well. It was decided to stop with Xtandi (Enzalutamide) which was obviously not working any more and to start chemotherapy, with 6 doses at 3 week intervals. Poison of choice is called Docetacel in Norway. Initially this went well, although bags of ice on my hands and feet (to minimise side effect damage to them) for the 45 minutes taken to drip the poison into me, was extremely uncomfortable.

As the tretment continued, the side effects became more severe. Mainly fatigue and I began to sleep a lot - on some days I probably slept 18 hours in 24. I finished the 6 treatments several weeks ago and now I am physically pretty much back to normal. I have lost a lot of feeling in both my fingers and my feet. Feeling seems to be slowly returning to my fingers, but my feet feel as if they are in ski boots all the time.

Unfortunately, the chemo has not been very effective. A new PSMA PET scan shows that although some tumours are reduced, others are increasing. My PSA has rocketed to 240 and the cancer is obviously very active now. I have started to take Zytiga tablets (Norwegian name for abiraterone) to see if this will have any effect (the Oncologist is not optimistic) and if it has any effect I will continue this as long as it is working. If it has no effect, or when it stops working, it is back to more Docetacel until that stops having an effect.

At the moment the cancer is confined to my lymph system and bones. It seems now that it is just a question of waiting for it to spread to one or more vital organs and when that happens it is a short step to game over.

I will try to finish this story off with the description of how the last weeks go.

Unfortunately, the Arbiterone treatment proved to have very short term effectiveness. A new checkup just 8 weeks after starting the tablets showed my PSA shooting up again. After discussion with the Oncologist, it seemed that my best options were to go for further chemotherapy or Lutetium 177 treatment. So, the latest round of chemo started 4 weeks ago and I had the second lot dripped in to me a week ago. It is a different type of chemo this time, Cabrizitaxel (the Norwegian name, but I expect the European name is very similar. I had both CT and MR scans before starting, to set a base-line for the extent of my metasteses and I will have a further set of scans shortly after the 4th treatment.

So far, side effects seem to be very similar to the first round of chemo. Far and away the biggest effect is tiredness.

The first treatment of chemo seems to have left me with permanent damage to the nerves in my feet and hands. My fingers have very little feeling in them (for example, I struggle to do up shirt buttons, because I can´t feel them) and my feet just feel like 2 large lumps on the end of my legs. It is more of a nuisance than anything more serious, but it makes me very clumsy and I can easily trip over my own feet. It also seems to have adversely affected my balance and geneal coordination. Maybe I'm just getting old.

The Lutetium 177 treatment appeals to me just for the way in which it works. As I understand it molecules are "activated" so that they will attach themselvess to cancer cells. These molecules have a radioactive isotope attached and so put a maximum dose of radiation straight into the cancer cells. I really know nothing about this, but it feels a bit more proactive that just flooding the body with a general poison (chemo, in Norwegian, is called "cellgift". Literal translation "cell poison". Much better name than chemo! )

The Lutetium treatment is not available in Norway at this time, but my Oncologist is very optimistic that the Norwegian health system would cover the cost of sending me to Finland for treatment if it turns out to be necessary.

So it is back to the waiting game. Get through this chemotherapy course and see if it does any good.

PS. Several people have contacted me during the last year and I think it is very positive to talk about the different treatments and the side effects. Please take contact if you would like a bit more detail of my experiences

Tim's e-mail address is: tim AT millisoft.co.uk (replace "AT" with "@")