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This member is a YANA Mentor This is his Country or State Flag

Tim Milligan lives in Norway. He was 60 when he was diagnosed in July, 2014. His initial PSA was 12.00 ng/ml, his Gleason Score was 7a, and he was staged T1a. His choice of treatment was Surgery (Retropubic Prostatectomy). Here is his story.

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...

UPDATED

June 2016

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.........

UPDATED

September 2016

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.

UPDATED

September 2016

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.

UPDATED

October 2017

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 :-)

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


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