I have within the last few days been diagnosed with T2 N0M0 Gleason score 7, I had a biopsy 8 months ago and it came back negative, after my PSA retest had risen a template biopsy was done and the cancer was found.
I am new to the site and have done quiet a lot of reading in the last year as it was one of the things I had in mind after web searches, I have also read lots of the posts and realise it is not necessarily a death sentence as it usually associated with the word.
I will continue to update on my progress and I am waiting for the date for my surgery to have the prostate removed, I opted for this as at 47 I did not want to watch and worry when and if it would spread outside of the prostate, although I know the are no guarantees of anything.
I went through surgery 2 days ago, I am now home and to be honest not feeling too bad, they have me on painkillers and blood thinning medication.
The surgery lasted 5 hours when it was supposed to last between 3 and 3-1/2 hours but the surgeon told me afterwards he was worried about my rectum as the template biopsy repairs seemed to have stuck like concrete so the surgery took longer, he also had to take away my nerves for erection and will discuss this with me when we meet, the stuff has gone away to the lab and he will ring me as soon as the results are back but he did say he was happy with how the procedure had gone.
The catheter is a little annoying but will be out in another 7 days so I will have to grin and bear it, I have not had a bowel movement yet but I am also on medication for this as I have been told not to strain as the void where the prostate was will be filled with a hernia if I do, so be careful of this.
At this time for those of you worried about surgery the only thing I can say is don't worry as these people are professionals and do it every week, we are just in a long line of patients for them, not meaning to sound ungrateful or demeaning but their work will never end as long as we have this disease.
Results in two weeks and next steps when we know more.
I have just spoken to the consultant who performed the operation, mostly good news from his point of view, the Gleason was upgraded from a 3+4 to a 4+3 so still a 7, all negative margins and no seminal vesicles invasion, as with surgery and a 7 no lymph nodes removed so all the cancer appears to be out, my baseline PSA will be taken in around 4 weeks and then again in 3 months.
I have full control over urine and bowel movements and have done since the catheter was removed 10 days ago, so if there is a tip here do the pelvic floor exercises and you will get the benefit, but there was a downside to the surgery to consider depending on your age and outlook on life, as explained earlier the template biopsy stuck like concrete when it repaired around the area and the nerves were taken out either side, this now means I have no feeling stiffness erection etc whatsoever down there, I am not sure what the next steps are but if this is the price I have to pay to be rid of the cancer I have made the right choice, but it really is something to consider as you never know as we do change our minds when we are over the initial shock and we are getting better.
Keep strong and read stories of survivors, don't read all the doom and gloom as one little ache and I think I have months to live!
Just a quick update, my first PSA test since my operation came back at 0.03 which the urologist said for all purposes is undetectable, 6 weeks until the next blood test but just a little information for those waiting for their first test on PSA testing post op.
We also spoke about ED and there is a 25% chance of a spontaneous erection with no help but this does seem a long way off, he also said the drugs such as Viagra may not be of much help to me as no nerves left to respond so it looks like a pump for the time being, there does not seem to be much urgency with them in getting blood back into the penis and whether this is because I will need help in the future such as with a pump I am not sure but will update once I have been to the ED clinic.
It is now just past one year since my surgery and my how time flies.
I still have full continence with no leakage even after I have had a good alcohol drink, what I have learned is to stand there and wait until my bladder is completely empty, I know it seems odd sometimes but trust me there are more men who stand there with issues they probably don't even know they have, I did have trouble in the months following but learned and it works and it was only after alcohol, keep doing the Kegel exercises as they do pay off.
As for the ED, I was completely no good and nothing worked, then after around 9 months as I had been on sildenafil for around 6 months and was also using a pump, I could not get on with the bands and they didn't work for me so I used the pump as exercises, I started to get feeling and we can now actually have sex and penetration is possible, not rock hard but maybe a 6 out of 10 so possible, and I will keep working at it, I also had non nerve sparing surgery on the right hand side not due to the cancer but the targeted biopsy which didn't heal properly and stuck the nerves to the prostate, so happy with progress up to now.
I have also just been put onto 6 monthly blood tests as I am stable at 0.03 undetectable after a year so they think my progress is good.
At 47 when I had to decide it was easy for me, get it out before it spreads and I will deal with everything it throws at me afterwards, no question I made the right decision.
Keep the faith and keep fighting, don't get down as we are all here to offer help and support and take as much advice as you can, every decision and the reasons why will be different.
Since my last update I have been going for regular check ups for PSA, my one before last risen from less than 0.03 to 0.05, so a slight increase, I have recently been tested again and it is now at 0.03, not less than 0.03 so effectively a rise, although reading all the blogs and sites this is nothing to be worried about due to the minor amounts detected, I have now been discharged from the hospital back to my GP for them to continue with the testing.
I still have full continence and have never had an issue with this, although I still have what I would class as severe ED, I am still only 49 and struggle to get spontaneous erections, and take tablets every day and injections when possible.
Still it could be worse, so keep looking on the bright side as there is always someone worse off than you.
It has been a while since I updated my story but there is not much to say really.
I had my 6 monthly PSA blood check up recently and it came back as 0.06, when speaking to the nurse from my GP practice (We all get referred back to our GP after around 2 years) she asked me the usual questions, how is my continence, fine and it always has been so do your Kegel exercises if you are new to this, how is my ED, as before with not much change but getting fed up of the daily blue pills so don't take them daily anymore, keep using the pump if you have had the op and the injections do work and don't hurt so take the plunge, so to speak, and then an unnerving question;
Have you had any new bone pain ?
It is the first time I have been asked this and all sorts of things went through my mind, has it spread, yes I have new bone pain in my hips and leg, and then I did a frantic search and found out there is a possibility that you can have bone spread and <1.0 PSA, so of course I assumed it had spread.
Once I had calmed down I realised all 50 year old men have new bone pain, aches and pains and it is nothing new, what I realised was that these nurses for all their good work don't really understand the mindgames this disease can play on us.
So if I have bone pain so what, who doesn't and I am not relying on anything other than my PSA results and watching these rise and fall by 0.01 each time, which by all accounts is nothing to worry about.
Hope you are all well and keeping your spirits up, any questions please feel free to ask.
Wayne's e-mail address is: wayne.watson AT networkrail.co.uk (replace "AT" with "@")