John Y

Age at interview: 62

Age at diagnosis: 57

Brief Outline:

A series of PSA tests in 2004 while John was working overseas prompted a biopsy which did not indicate prostate cancer. However a later biopsy (May 2006) did indicate cancer and John returned to the UK for treatment. He had a radical prostatectomy in September 2006.

Background:

John is a retired accountant, married with four adult children. Ethnic background is White Irish.

More about me...

The company that John worked for overseas insisted on medical examinations for all its mangers over fifty years old and so in January 2004 he was made aware of a problematic PSA score. He then had three-monthly PSA tests and several months later after these showed, on the whole, increasing readings of up to 7 his GP recommended a biopsy. The biopsy, which John found extremely painful and upsetting, did not indicate prostate cancer. His doctor suggested having another biopsy in six months time but John was not willing to consider this because of the severe discomfort he experienced. He returned to the doctor a year later after being invited for another PSA test which resulted in a reading of 10 and his doctor’s repeated advice to have another biopsy. This time the biopsy resulted in a diagnosis of prostate cancer in May 2006. John then decided to return home and have his treatment -privately in the UK. On returning to the UK his GP remarked that he was very fortunate as in the UK his cancer wouldn’t have been found because there was no testing until symptoms presented. After various tests to establish the extent of the cancer he was advised that his cancer was of an aggressive type and that he should begin to consider his treatment options.

 

He found the decision-making around treatment exceptionally difficult not least because the experts suggested that the medical outcome was the same from the different treatment choices and so, effectively, deciding on treatment was a life-choice decision; whether to harm yourself one way or another. After a lot of deliberation, consulting statistics and talking with both a surgeon and radiologist he decided to have his prostate removed and had his operation in September 2006. Although he recovered quickly from his surgery with his incontinence clearing quickly, he contracted MRSA which caused a few complications. John considered his prostate cancer to be a ‘gypsy’s warning’ and decided to take early retirement. While his PSA was at zero for several readings it has recently slightly risen to 0.6. He feels, however that while this may indicate that there is some activity regarding prostate cancer, whatever it is is extremely slow growing and that he still has the option of radiotherapy for treatment if necessary.

 

After this interview John reflected that while he was fairly relaxed about his PSA rising to 0.6, this was on the assumption that doctors do not get excited until the PSA exceeds 5.0. He now feels that this assumption was an error on his part as he had not been advised that, clinically, a radical prostatectomy operation is declared a failure if the PSA reaches 0.4. While he has not yet reached that level his surgeon declared in December 2011 that he will and he should begin radiotherapy. The planning scans took place in February 2012 and he expects to start the treatment ASAP. He believes the speed of this next stage of treatment is driven by the fact that the cancer is, in all probability, still within the prostate area and his medical advisors want to minimize the risk of it escaping to other areas. He has been advised that while the success rate is 80% there will be short and long term side effects. The shock of this has in some ways been far worse for John than the initial diagnosis as he really thought that he had beaten prostate cancer or, at worst, it was coming back but at such a slow rate it was neither life nor life-style threatening.

 

Interview conducted in 2011 by Anne Montgomery.

After his radical prostatectomy John found that he could still get an erection but he could no longer ejaculate or have an orgasm.

Well there, there are problems, the nerve sparing, the nerve sparing worked, but quite obviously, I have to be, I have to be fairly open about this, you no longer ejaculate, which may or may not be an issue of itself, but I do not, while I can get an erection, I, it is non-orgasmic, that has bothered me, it has bothered me, mainly because, for about, well once I was able, for a short period after I was able, post-op, it was orgasmic, but only for a short period. Now they don’t talk to you too much about that, even when you ask in the hospital, so, my interpretation, and it’s my interpretation, it’s not a medical interpretation, is that something survived the operation, which died shortly afterwards, and I’ve only recently, I’ve only recently discovered, talking to one of the, not the doctor, but one of the support nurses, I couldn’t tell you her title, who gave me a bit of a surprise whenever she said that the nerves which control orgasm and the nerves which control erection, are a different set of nerves, now, I have not gone into that, because all of a sudden it says, well, are they separate, were they treated separately, I didn’t want to go there, because at the end of the day, there’s nothing going to be able to be done about it, the doctor did his best in the operation, and if a set of nerves died as a consequence, that was a risk you were running, that was the risk, and you knew that risk, it wasn’t as if you weren’t told, you knew and that was part of your decision.

 

After the operation John developed a MRSA (Methicillin-resistant Staphylococcus aureus) infection.

 

There’s not much else I can say about the operation itself, per se or the follow up except that I had a little bit of difficulty in the outcome, in that the doctor came round one day and as it happened I was lying on the bed, with the blanket over me, he was quite startled by the fact that within days of the operation I was wandering around the hospital, albeit quite painfully, but I couldn’t sit still, didn’t want to sit still, couldn’t lie on a bed, didn’t want to sit on a chair, I was happy enough just wandering, but this particular day, I was, I had a blanket over me, which he didn’t actually react to initially, until a nurse went past and I said, “Nurse can I have that extra blanket please, I’m freezing”, he reacted immediately, and it turned out I had MRSA, so I did, so, we had a few problems clearing that up as well. I hadn’t a particularly virulent form, it just made it a little bit more difficult for things to clear up per se. Recovery, no particular problems with the recovery and the usual problems that you have post-operative, incontinence and all the rest of it, all cleared up as quickly as can be expected.