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T G lives in England. He was 54 when he was diagnosed in March, 2012. His initial PSA was 25.10 ng/ml, his Gleason Score was 7b, and he was staged Unknown. His choice of treatment was Surgery (Robotic Laparoscopic Prostatectomy). Here is his story.

In March 2012 I visited the doctor for an unrelated symptom that I correctly thought wasn't significant. I mentioned in passing to the doctor that although my urinary flow rate and frequency were normal, after defecating I stood up and a passed a small amount of urine. The doctor did a DRE, felt something suspicious, and took blood for a PSA test. A couple of days later I had the result PSA: 25.4. Something Needed To Be Investigated, soonest. Quite a shock.

Had a biopsy in less than a week, and it was Gleason 4+3. Damn.

Two weeks later, I had a MRI and a bone scan. Scan completely negative, MRI indicates confined to prostate => T2c. Consultant urologist does a quick DRE and thinks it is T3. Tentative conclusion: best treatment may be external beam IMRT radiation (and maybe HDR brachytherapy) plus LHRH hormone suppressant.

Two weeks later I see the consultant oncologist. PSA has decreased to 19.1, for no apparent reason. Consultant concurs that EB-IMRT + HDR Brachytherapy + LHRH hormone supressant, but also thinks surgery might be possible.

The result is indecision! I'm still trying to decide which has the worse side effects: da Vinci surgery taking some of the surrounding tissue, or radiation plus hormone therapy. I can live with ED, but the thought of partial or severe incontinence is not amusing.

Two things are clear: I know I've got to have treatment in the near future, and the National Health Service protocols, procedures and practice have been peerless. I wonder what would have happened if I had to rely on non-existent insurance?

But what are the key questions that will send me one way or the other?

UPDATED

October 2012

I decided to talk to the local consultant surgeon, who is sufficiently well recognised that he one of the many authors of the NICE (National Institute of Clinical Excellence, the UK body defining best medical practice) report on prostate treatment. He, along with the consultants urologist and oncologist, all agreed that surgery was also a possibility, albeit one with a "high risk of failure", i.e. 1/3 require treatment soon, 1/3 within 5 years, 1/3 no further treatment required.

So, how to choose? In the end I decided that the key points of interest to me were the side effects. I'd rather have a short good life than a long life spoiled by side effects. (Aside: I've seen reports that doctors also have a tendency to make that decision, rather than extend their lives as far as possible).

So what are the worst side effects? For me they would be bladder or bowel incontinence. I suspect I could deal with bladder incontinence, but I'm not sure I could deal with bowel incontinence. Hence I chose daVinci surgery, because I feel the 1/3 chance of avoiding the radiation side effects is a chance worth taking. Am I optimistic? I'm never optimistic about anything, that way I only have pleasant surprises :)

4 days ago the prostate and some adjacent lymph nodes were removed. I'm now at home on my own, learning how to cope with a catheter, and trying to remember where I left everything before I went to hospital!

UPDATED

May 2013

After having the catheter out I had the expected urinary incontinence. Despite doing the Kegel exercises this did not improve, and so I started to research the surgical alternatives. In the UK, NICE don't recommend slings for this problem, so an Artificial Urinary Sphincter is the only surgical alternative. The good news it that it usually works, but the bad news is that it sometimes requires surgical revision and sometimes causes urethral erosion. If the latter happens, the only alternative is a stoma - doubleplus ungood. In any case an AUS wouldn't be fitted for at least a year, quite sensibly.

First PSA test was done via my GP's surgery and the result phoned through to the consultant was "0.2", indicating biochemical recurrence. Damn.

I am asked if I would want to take part in a randomised trial to determine the efficacy of early -intervention salvage radiation treatment. I decline, since I fear fecal incontinence.

A month later the next test was also done at the surgery and this time I got the results in writing: "<0.2". Half an hour later an orange flag starts waving around in my head, and I go back and get the first results in writing: "<0.2". Being an engineer has its advantages: I know "<0.2" can be very different from "0.2", particularly at the limit of machines' calibration. On checking, GP's test machine was only calibrated down to 0.2 (i.e. suitable for screening) whereas the hospital's was calibrated down to 0.1.

I ask for another test at the hospital, and it shows "<0.1", i.e. no biochemical recurrence. Phew.

Motto: trust, but verify :)

Now, 6 months after the prostatectomy, it is still <0.1, and I am deemed to be fully recovered from the operation. However, I still have significant urinary incontinence, but I'm learning to live with it. I doubt I'll want to go for an AUS since I suspect the chance of a urethral erosion is significant, given my age.

But why, oh why, are there so few incontinence aids/pads that are designed for men? We're a different shape and urine is not emitted in the same place, dammit!

UPDATED

September 2013

After about 6 months I had the suspicion that my urinary incontinence had been better for a couple of weeks, but it was too soon to be sure particularly since the improvement was within the the day-to-day variability. After seeing the consultant, I was more pro-active about the Kegel exercises.

Three months later it seems the improvement in urinary incontinence is real and significant. Now I'm only using one or two pads a day. Tolearable leakage mostly occurs when coughing/sneezing, changing gear while driving, and kneeling while working on the floor.

Conclusion:

  • there was minimal improvement for 6 months, despite doing Kegel exercises
  • thereafter there was a significant sudden rapid improvement, which I personally doubt was due to increased Kegel exercises
  • keep doing the exercises even if there's little apparent improvement

My presumption, without evidence, is that muscles were constantly increasing in size and strength, but only after they reached a certain "critical" size did they start to act to clamp down on the urethra.

One of the reasons I opted for surgery over radiotherapy was because I knew some friends used external catheters "recreationally". I'd better explain that... When flying gliders it is necessary to have a sufficient fluid intake to avoid dehydration at 10000-20000ft altitude. After a few hours strapped into a cockpit the size of a bathtub, that drinking leads to (ahem) inevitable consequences for which external catheters are one of the standard solutions. Hence I wasn't too worried about urinary incontinence (unlike bowel incontinence, which might have been a consequence of RT).

I've now started trying a Conveen external catheter (one of the traditional techniques used by glider pilots) on special occasions. I'm not yet convinced it is better than pads, but will continue to experiment.

And since the latest optimal PSA test, I've restarted flying gliders, I'm very pleased to say. Great fun; everybody should try it at least once.

UPDATED

March 2014

I notice that whereas the pre-operation diagnosis was "probable stage T3", post-operation examination downgrades that to T2 since it "only" apical margin positive. Good.

After 15 months my PSA remains undetectable, and so I'll continue to get PSA tests but they don't want me to visit the hospital regularly since a telephone conversation will be sufficient. Very reasonable.

Let's hope we can continue to keep the NHS, and avoid importing American health-care. Unfortunately the money-based health lobby is well-funded and very persistent.

Aside: a friend has had a stroke. If I had to choose one or the other, I'd choose prostate cancer.

UPDATED

April 2015

It is now 3 years since diagnosis, and 2.5 years since the radical prostatectomy. The PSA level remains below the calibration limit of the local doctors' machine (i.e. <2ng/ml). Urinary incontinence remains unchanged, and doesn't bother me - except when I go away and have to take pads with me!

I'm beginning to believe that I might die with PC, rather than dying of PC.

UPDATED

May 2016

Last November the PSA had risen to 2.0 from <2.0 (2.0 is the calibration limit of the machine).

The current protocol here is to see if the value rises over three successive measurements, but I have not determined a minimum interval between measurements. If it does rise then more treatment is offered, and since this part of the UK is doing a lot of research in the area, many different treatment options and regimens are possible.

Fortunately the three successive readings over perhaps 6 weeks were constant. That's fortunate since I'm not keen on the potential side effects of prostate bed radiotherapy. So it is back to having my PSA measured once every 6 months.

In the meantime, having heard that broccoli is A Good Thing, I'm having 50-80g of broccoli per day. Since that would become boring, I'm having it in the form of homemade broccoli and celeriac soup. A make a batch of 10 days worth, freeze some, and have one cup a day in place of one cup of coffee. Easy, simple, and quite pleasant.

UPDATED

June 2017

Since my PSA has risen from <0.2 to 0.2, it is regarded as a "biochemical recurrence". This is unsurprising since before my prostatectomy I was told there was a 66% chance I would need more treatment within 5 years.

Now it is to be expected that the PSA will rise exponentially, but the key question is what is the doubling time (analogous to a radioactive "half life")? When I first investigated the topic, more treatment was given when (IIRC) the doubling time was 3-6 months. However there is a local "RADICALS" programme under which I could have the usual range of treatments. Hence I'm being tested every 6 months to see how fast the PSA rises.

Since the PSA has been constant for 18 months and the minimum assay level is 0.2, I wonder whether there's been a change in the way readings are reported (i.e. omitting the "<"); I have no evidence of that. Anyway, I'm in no hurry to start new treatment, and have declined any treatment under the RADICALS programme.

I will reconsider that decision as and when appropriate.

T's e-mail address is: spamjunk AT blueyonder.co.uk (replace "AT" with "@")


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