Hi, I am new to this site; don't know how I missed finding it over the last year. I posted this in an existing thread but was advised to repost as a new conversation.
My story:
Back in 2010 my PSA levels were high: 4.6 or 4.8 if I remember. Note: my father had prostate cancer so I am fairly conscious of it. Consultant recommended a biopsy (TRUS - samples taken through the rectum under local anaesthetic). Result negative. Breath sigh of relief move on.
Late 2015: PSA level rose sharply (13) then subsided (4.5). Consultant recommended MRI scan which showed a small area of concern (non-conclusive). Advised more frequent monitoring.
Early 2016: PSA rose again (I think to around 12) so had a Transperineal Template Biopsy under general anaesthetic (through the perineum - area between scrotum and anus). Overnight stay - all seemed fine when I returned home. Bit sore but not too bad. two days later (saturday morning) woke up with full bladder but couldn't pee ("retention"). Wife drove me to hospital where I felt I was about to burst while waiting for my consultant but duty doctor took pity on me an inserted a catheter; I never thought I would be so grateful for someone sticking a tube up my penis! Sheer bliss to be able to pee. Had the catheter (tap controlled rather than bag) for about a 10 days after which I was OK. Meanwhile, I had almost forgotten about the biopsy result but then it came in: one sample showed very small amount of cancerous cells - therefore localised but with a high Gleason score 4+4 = 8). So localised and with early detection but potentially aggressive cancer.
My consultant passed me on to two specialist consultants - one specialising in radical prostatectomy (RP) and one permanent seed brachytherapy (PSB). Potential issue with PSB would be that since I had gone into retention after the biopsy then likelihood was that I would have major issues if PSB was attempted with my prostate as it was. Problem was my prostate was enlarged so PSB would require a 3-4 month wait during which I would need hormone therapy to reduce the size of the prostate (otherwise they cannot inject the seeds effectively) and also I would need a TURP (if you need a TURP then look it up online AFTER the operation - basically they use a heated wire loop passed up through the penis and through the urethra wall to scrape away part of the prostate) to avoid the retention problem after the PSB. So basically at this time I was way way inclined to go for RP - lets just get it over with straight away. A friend's husband had had RP and she was very positive about it. Saw both consultants and was about to decide for RP when I went to a third consultant - a Urologist who would do the TURP if I went down the PSB route. I only really went to see him as a courtesy as I had pretty well decided for RP. The consultation with him really changed my mind. Although the PSB route would be more drawn out the risks of longer term complications such as incontinence were less with PSB than with RP. Also checked with my friend and she admitted it had been hard for her husband after the RP with pretty well three months of incontinence and occasional problems even a year afterwards (a scenario similar to another friend of mine that I hadn't seen for many many years until recently and whom I discovered had had RP a couple of years ago). So, PSB seemed potentially back in play - especially as my lifestyle involves a lot of physical activity - especially running. So, having thought my way through this had a discussion with my original urologist (who had discovered the cancer) to see if my logic for now preferring PSB was reasonable. He confirmed this so I opted for PSB.
Because of the fact that I would have to wait a few months for the PSB I was put on Zoladex implants (stops body producing testosterone) to stop the cancer from developing. Also on Avodart to reduce the size of the prostate. This combination gives you all the symptoms of the menopause - especially hot flushes - and kills your libido. Still, my GP said it would give me more empathy with women; actually most of my female friends just said, in effect, "ha, now you know what we have to put up with". So, in June had the TURP operation - general anaesthetic / overnight stay and released as soon as I could empty my bladder - amazing how you get used to having a bladder scan after every pee. The immediate effect of the TURP was that frequency and urgency of peeing was a problem for 3-4 weeks and then it settled down (I read one blog where the writer described wearing a groove in the carpet from his frequent dashing to the loo). However, by the end of the 4 weeks or so I could pee better than for years!
Slight detour: precautionary bone scan (to check for spread of cancer) showed an anomaly in one arm which initiated a regular x-ray then an MRI and then a full PET/CT scan over the course of a month - one of my friends unkindly suggested I must have a thing for radiology nurses! Anyway it was all clear so put down to an unknown but most likely inconsequential anomaly.
Finally in late October went in for Brachytherapy. As mentioned in other posts: slightly bizarre having a nurse scan your urine with a Geiger counter. Immediate effects of operation were less severe than the biopsy or the TURP had been and about 3 weeks after operation was feeling very positive and was back running. Then at about week 4 or 5 started to feel the effects, presumably, of the radiation from the seeds. Felt I was going backwards in terms of frequency and urgency of peeing; had the experience many others reported of unexpected bowel movements when peeing (at moment I always pee sitting on the toilet as I don't trust that I can control my bowels). Have been on Tamsulosin since the operation - not sure when I will be allowed to stop these. I have some days when water works are fine and others where I have difficulty emptying the bladder and end up peeing several times in a short time. If I have a day of travelling / meetings then I tend to take a couple of Ibruprofen in the morning and at lunch time - this definitely helps presumably by reducing swelling of the prostate but I try to do this only one day or so a week as I know you shouldn't take Ibruprofen long term.
I cannot isolate the side effects to determine which are Brachytherapy related and which are related to the drugs (Zoladex should be wearing off about now so in next couple of months may have a better idea) but generally they are:
Unpredictable tiredness - some days can go to the gym and go out socialising with no problems while on other days a single activity leaves me tired.
Much better now but in the middle period of Zoladex and Avodart treatment I had real problems concentrating for any period of time - and for me this was probably the most distressing of the side effects.
Had no loss of my main hair, but my body hair has largely disappeared.
I have had very dry skin - especially on my hands - to the extent my iphone doesn't recognise my fingerprint!
Peeing is gradually getting better and now, 3 months after brachytherapy, varies between needing to get up only once during the night to sometimes needing to get up twice and occasionally sleeping right through. I have become very conscious of not drinking any fluids if I am about to undertake a train or car journey or attend the theatre or similar. So I have found I have breakfast early and take on fluids then so that by the main part of the day I can manage without too many problems. I do find as I enter any public building I am scanning for the toilets so I now the fastest route to them if needed and even if I don't feel the need to pee I will take advantage of convenient loos to go anyway.
The big effect of the drug treatments has been loss of libido - erections are helped by Viagra but the sex drive is very, very diminished. My consultant insists on the viagra to maintain the erection capability during this period - to keep the system working so to speak. I think I shocked my GP when I summed up my consultant's advice as along the lines of "I gather erections are compulsory but the sex is optional". Hopefully as my body gets back to normal this will all revert to normal. I do have friends who have not been able to go down the RP or PSB route and are on permanent hormone treatment with the consequent effects on libido - I think I would find that challenging.
Sorry this has been a long post but the biggest thing I have found through all this is that generally speaking men don't talk enough about prostate cancer and its treatment. I have been shocked by how many men I know that have had cancer and treatment but don't / won't talk about it.