10 years ago.....

User

Posted 16 Jul 2019 at 07:46

I was late coming home from work - do I get a paper or rush for the train. Decided to go for the train and picked up a paper from a train seat ( different paper from the one I would have bought, read an article about prostate cancer and decide to take the PSA test ( I had no symptons )

PSA came back about 4 so we left it for another year when it was now

Several visits to consultants ( by this time I could describe most makes of surgical gloves by the noise they made as the doctor/consultant put them on !!. )

The first internal examination I had was by my ( female ) local GP - we 'debated' whether or not she really needed to do said examination - I lost !!

One examination involved an injection with some sort of dye in a body hugging scanner of some sort which strict instructions to keep still - but of course I then get the worlds worst itchy nose !!

My tests also involved the taking of 24 biopsies of the prostate by the insertion of mechanism into my rectum. 'We' took a break after 12 samples - I then asked the surgeon if he could write a letter to my wife stating that despite what she may think my head wasn't up there !!.

As I said the conclusion was that yes, I had cancer, the big C word.

The treatment I chose was brachytherapy - the insertion of radioactive seeds around the prostate. This involved an overnight stay I in hospital. Out the next day, no catheter or whatever.

I then saw the surgeon, a Professor [Drs name removed by moderator] ( Guildford Hospital ) every 6 months for the first couple of years and the drop in my PSA each time was EXACTLY as he predicted. 10 years on my PSA is a steady 0.1 ( well its' less than that but it cannot be measured !! ).

I have some minor problems with incontinence ( manageable )

Potentially a difficult subject area for any male to discuss with I) his female GP and/or ii) an other 'stranger' albeit said stranger is part of the medical profession BUT GET OVER IT and GO GET THE TEST done.

Edited by moderator 17 Jul 2019 at 10:46 | Reason: Removed Doctors name

User

Posted 20 Jul 2019 at 12:04

Sharing with other people is so important. I'm a member of a walking football team, and when I felt I had to explain why I was missing games and training due to hospital appointments, the support I got from them was fantastic. And then it turned out that there were three others who had either completed their PCa treatment or were still going through it.

I know it sounds bizarre, but sometimes we have quite a laugh when sharing some really intimate information. Someone always comes back with something along the lines of "Oh that's nothing, after I had radiotherapy this happened..."

The other thing about being part of a group of older people is that those who haven't got PCa have usually got something else wrong with them. We had a charity walking football festival in April, and one team was made up of players with hip and/or knee replacements, another team was of players with heart attack or stroke history, and of course we also had a cancer diagnosis team.

User

Posted 16 Jul 2019 at 07:46

PSA came back about 4 so we left it for another year when it was now

Several visits to consultants ( by this time I could describe most makes of surgical gloves by the noise they made as the doctor/consultant put them on !!. )

The first internal examination I had was by my ( female ) local GP - we 'debated' whether or not she really needed to do said examination - I lost !!

One examination involved an injection with some sort of dye in a body hugging scanner of some sort which strict instructions to keep still - but of course I then get the worlds worst itchy nose !!

As I said the conclusion was that yes, I had cancer, the big C word.

The treatment I chose was brachytherapy - the insertion of radioactive seeds around the prostate. This involved an overnight stay I in hospital. Out the next day, no catheter or whatever.

I have some minor problems with incontinence ( manageable )

Edited by moderator 17 Jul 2019 at 10:46 | Reason: Removed Doctors name

User

Posted 18 Jul 2019 at 21:57

Peter,

Partners are invited and there are usually a couple there, but there were none yesterday. Maybe that enabled the blokes to talk more frankly - that hadn't dawned on me until you asked, and may well be a significant factor. The talk is quite frank even when partners are there too, but maybe fewer people talking. It would be up to you if you brought your wife, although you might find other peoples' wives at such an event. I make it clear it's fine to just sit and listen if you don't want to talk, but everyone was talking yesterday. I think if enough do so, it quickly feels like a safe place to do so for everyone. This was in spite of it being an open area where postgrads and cleaners were passing through occasionally, and I did note that once we'd got going, no one cared about them hearing anything either, although I did wonder what they thought! (We're normally in a private conference room.) There was no talk about prognosis yesterday and I don't ever recall any in the past either, even though some members are not on curative treatment paths, and there is sometimes talk about past members no longer with us.

This is significantly different from a waiting room situation, where you kind of have to be there, and probably many of the patients wished they were somewhere/anywhere else. These people all come to a support group because they want to, because they want support and/or want to offer it to others, just like in this forum. I've never seen anyone behave inappropriately in any of the local support groups I've been to.

I have to say, all 4 of the local support groups I go to are completely different. This format of session would only work with the relatively small numbers we get at the Mount Vernon support group, not the 60+ that turn up at the other local groups I go to. However, I originally suggested running this session for a different local group, but just for newer members on hormone therapy, thereby keeping the numbers smaller, and repeating it periodically as more new members come along. We haven't done this yet (and if we do, I'll rethink if we explicitly invite partners too based on what you've said, although it's not realistic to stop any that show up anyway).

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User

Posted 16 Jul 2019 at 20:16

Good to read Richard, 10yrs post op.

Yes, have no worries about talking about anything to anyone with a medical position. At my pre-op I was met by a young female doctor who asked me to tell her how I got to where I was and then stuck her finger up my bottom. I wasn't that sure it was necessary except as practise for her but was happy to oblige.

There was also a 20 year old female student who asked to attend my op. We all have to learn and she wasn't doing the op. Then a nurse told me she'd watched me urinating into a funnel at catheter out time. The one thing post op you're better at is urinating, I'd challenge anyone except another patient to a battle. May the force be with you as they say.

User

Posted 18 Jul 2019 at 07:34

Great to read Richard. Not many people in long term remission hang around here, and when reading this forum, it's all too easy to forget that it does happen.

Peter, I have found no problem in discussing the symptoms and side effects with people. Because of this, I was asked to lead yesterday's support group meeting Mount Vernon, and I decided to talk about hormone therapy side effects and the things you can, and should, be doing to avoid some of them. I hoped I could get everyone comfortable talking and fortunately that worked, but in case it hadn't, I came armed with enough material so I could talk throughout. One of the medics was there for the first half, answering peoples' questions on treatment (and stealing a bit of my thunder, but I'm not complaining - it's very important to have a consultant present at support groups), but I had the second half of the meeting, and we actually ended up overstaying by an hour, because people got well into the open discussion.

I think it's quite different for men who haven't had any medical interventions "down there". I had many frank discussions during an awareness event in Reading town centre recently, but you can see it's a much harder conversation for them to have. I suspect in many cases, it's the first visit to the GP or the urology department which is the ice-breaker, although by initiating the frank discussion myself, whilst being ultra sensitive to what may be too uncomfortable for each person, seemed to work well in my experience.

User

Posted 18 Jul 2019 at 11:30

Great story and the icing on the cake is you are well and still in remission after 10 years.

Thanks for sharing.

Ido4

User

Posted 18 Jul 2019 at 20:01

Andy, Are wives present at these groups. I don't like being frank in front of my wife and also not in front of other people's wives. There are two kind of frankness, one is about my continence etc and the other is about my prognosis. I'm not keen on my wife hearing unnecessary bad news. I usually say what I have to but am more careful.

I always bring my wife to appointments and just once there was a patient telling all to everyone in the waiting room. He had a lot of continence problems. One person was shifting uneasily but after a while he admitted to having a urine tap for 7 years. Another man, by himself, left the waiting room after looking annoyed and actually quite ill. This person also annoyed me by announcing anyone with Gleason 8 or more was as good as dead. Although he was otherwise a bit amusing. It takes all kinds and that waiting room encounter made me realise there is value in exchanging notes although I've never been to our local support group in case it makes me anxious although at the moment I've no news to make me anxious.

Edited by member 18 Jul 2019 at 20:05 | Reason: Not specified

User

Posted 18 Jul 2019 at 21:57

Peter,

User

Posted 20 Jul 2019 at 12:04

Notification

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