It's nearly 18 months since the op (16 Dec 16 and after the worrying, the lack of knowledge and busy early days things are pretty flat. That warning light keeps flashing though and seems it will never turn off.
I feel a bit guilty writing this as many are much worse but hopefully there are many who might find some bit of some use.
At the first post op appointment I learnt I was T2a, my Gleason was upgraded to 4+4 but better news was that margins are negative. I didn't ask for anymore information, my policy is to live in ignorance of my details, learn about the disease, be moderate, and hope for the best. For me it seems to work.
The surgeon who did the op always delegates clinics to doctors. A different one every time, they each have their own style, some are worrying, some laid back. The last one said I'm more likely to die of a heart attack, I could tell he thought that encouraging. So now I'm worried about my heart but really didn't take it too seriously. My next appointment is a telephone one with a sister, which seems good but she's changed the date 3 times now and it's reached 7 months, but I'm thinking it's unlikely to reach the level needing treatment. Being pragmatic, I think.
The last blood test was February 2018 and the psa was <0.05, undetectable, good. When I ask why it's only measuring down to 0.05 they either say it's enough or claim that for their machine 0.05 is zero. I just think they didn't want to pay for a more sensitive machine, which apparently has some medical backing, some want it to be undetectable up to <0.1.
I have a special interest in this subject as during diagnosis I got a massive hip pain while on a walk and couldn't walk very well for several weeks. Hip pain is a classic advanced Pca symptom I read in the Daily Mail article which comes up on any search on hip pain. Three PCa surgeons who died apparently. Although the DM is good at creative use of information. I kept being told it was a sports injury. My worry was it could stop me being offered an op so I wasn't saying much till after. Then months later the GP gave me an extra psa test to see if it could be related and declared it as arthritis. It got a lot better but the other hip started going and now they both don't like certain cushions but they don't stop me doing anything. As long as the psa is low then it's OK.
After wearing pads for 5 months despite being almost dry, having unwisely bought a big pack, the doctor said increase pelvic exercises to finish it off. It seems now I need to always be doing it, not that it leaks but it feels like it would when I miss exercising.
It took longer to fix the dribble that remains after I've got dressed. This must be common because the hospital sent out a survey which asked if you dripped after you'd dressed. I learnt how to clear it myself but it can still catch me out, like this morning rushing out. It's like 'Oh s***!'. Although no-one else knows, you feel a bit unclean and wonder if it's why dogs are sniffing.
There's also the sensitive bit on ED. After thinking it was coming back after about 6 months it hasn't really beyond a rather droopy affair, although the surgeon said before the op he'd take the nerves on one side and it would never be as strong. I didn't want to continue the 20mg Cialis as it caused strange aches across my shoulders and back. Just as continence came back suddenly I'm hoping ED will suddenly get a lot better and have refused the treatment that was offered.
Even stranger, between you and me, I've not told the doc either, is a small dribble that accompanies initial arousal. This can happen anywhere, sometime I'm not aware of arousal but then realise it. It happens only with women in mind and hasn't happened with blokes around so perhaps it's a measure of gayness. Whether this will get better time will tell.
My plan is to get a lot of distance after my op before I seek further treatment. Let's have a few years without treatment if poss.
What other long term changes?
A life of using alcohol to reduce stress made me think it was essential, how could anyone be teetotal. After diagnosis drink made me anxious in the night and in the morning, so for 6 months I had none at all and didn't miss it. Who wants to stress a newly stitched on sphincter. It amazes me that they can stitch it back on, what a job! When the operation was healed I became 'twototal' which is limiting alcohol to 2 nights, and no more than half a bottle of wine or 2 bottles of beer. Even that can give me anxiety, not just about health, so it must have always done it.
Assuming the worst which is it has come back but I don't know. Is it possible that dairy products can be detrimental due to hormones? Just in case I made a big cut back on cheese and milk. Coffee is now Flat White which is much smaller than a latte and stronger which to me is good. Also Vitamin D, I always thought it was good for you, but apparently it might be good for protecting the bones as it stimulates calcium. So in low sun months I have a couple of tablets a week. Then there's the testosterone, they reduce it as a treatment. Those articles in fitness magazines about increasing testosterone, well I do the opposite, although it's not easy and you need to keep fit and eat well. Keeping fit increases testosterone as does sex. Yet there's a study underway to see if exercise reduces bone spread. It's complicated, keep moderate, eat healthy.
Could I be fortunate enough to have a long term remission or will it pop back. They say if you go 2 years without recurrence it's likely to be a less aggressive return and the longer you go the better, especially coupled with a slower doubling time. So the next psa test in September, month 21, will be a good indicator plus the one after at 27 months. Although they're all important.
I keep reading this forum to see what is happening to people when it goes beyond the stage I'm at in case I get there, and to offer support if I can. I never want to be complacent. It's tough reading some people's accounts, yet they're living with it and you wish you could help. Let's hope for more advances in treatment.
I don't mind comment on this good or bad, if it's for the best.
Overall, as things are, as long as my psa is OK then I'm OK. That's how it is at the moment.