Usual disbelief when I was diagnosed then total confusion with all the conflicting information. We don't seem to get any clear help in the UK from the specialists. Basically they run through the treatments then say go away and come back when you have decided what you want. I then found a relative who had been through it 3 years ago with great result from surgery. Went to the same guy (Christopher Eden) and also got a great result so far. Eden is the most experienced Laparoscopic Prostate Surgeon in the UK with over 2000 ops since 2000.
He spared nearly all my nerves so I was totally continent and showed signs of being potent after surgery which was 5 weeks ago. After analysis they upstaged me to 3Tb and a Gleason of 3+4+5. this was worrying but then I was told I have a 13% chance of recurrence in 10 years which sounds good to me. Still waiting on my new PSA; which is in another 6 weeks.
I feel so happy that I had the thing removed or I would never have known that it was as bad after the original diagnosis from the biopsy. The other thing that is being said in the UK is its must be better to have an MRI before the biopsy so they know where to go with the biopsy needles. I feel I was lucky thay the biopsy was positive first time!
28th February 2014.
Just received my first 11 weeks post operation PSA of 0.1. I'm very relieved and again to me shows the skill of my surgeon to spare nearly all my nerves and still get a 0.1 result.
I do have regular spontaneous erections but they do not last as pre-operation. My partner has been great and as Jack Nicholson said in the film bucket list" Never pass up an erection! Also the dry running with no ejaculation is taking a bit of getting used to but hey...what a small price to pay. My next PSA is in 3 months so here we go with the waiting again. I suppose this is something we all have to get used to.
In case anyone is worried as I was about swollen testicles my only finally reduced back to normal 2 weeks ago. The secret seemed to me to wear tight underwear at least one size smaller than normal. I have no idea where the fluid goes but it finally didn't return and I'm now back to normal size.
I have been told I can get back on my motorbike.
Just hang in there guys. There is always light at the end of the tunnel.
I made a mistake with my PSA; result. My consultant is 200 miles from my home so I had the blood test at my local surgery. I was given a printed copy of the results to take to my consultant and I read the result as 0.1 which I posted here. When I actually met my consultant he said my PSA was undetectable as the actually result was<0.1.which apparently is in the undetectable range. Being an engineer I felt really stupid having missed the < sign!
A small point I know but when you are looking for a good result (as we all are) these little things are important.
On the erection front I have been prescribed Cialis 20mg. but waiting to try it.
Hang in there and think positive Guys....it makes such a difference.
Just had my 6 month post op PSA; with the result <0.1 so another sigh of relief. I tend to try not to think about the test but so far it has been a shock of emotional relief when I get the ok.
I tried the Cialis but found it did not suit me. I took a tablet with great expectations but couldn't really notice any difference. The following day I experienced strange feelings in my legs. These got so bad I called the Hospital and they said they were muscle contractions. They prescribed Paracetamol which worked immediately but I had to keep taking them for 3 days when the pain returned. I won't try Cialis again! My consultant said there were other drugs but regular manual stimulus at least 3 times a week would help. It has and now my erections are getting stronger and lasting. He said the improvement could take up to 3 years.
I am still 100% continent and have been since after a week after my op.
Will report in 3 months with fingers crossed and for all you guys too.
Had my 9 month post operation PSA; with the usual build up but relief again to find it was less than 0.1. which my surgeon clases as undetectable.
My surgeon was very pleased but confirmed that although the result is still excellent there was still a possibility of the PSA; rising for another couple of years. My mind set is to respect the possibility but to keep positive. I now firmly believe that my lack of side effects is due to the skill of my surgeon so if any of you guys feel the need to travel then get in touch with Professor Chritopher Eden at The Hanpshire Cilinic UK because as far as I am concerned he is The Guy.
My 12 month PSA; is in January so fingers crossed for me and hang in there everybody.
It's 12 months since my operation and still undetectable PSA. Phew, another build up in my head waiting for the result but obviously a big relief. My consultant was very happy. He is proud of his skill and it means a lot to him too to get a result. With my T3b and seminal vesicle histology I know I am still at risk but again so pleased I went the laparoscopic removal route as I know for definite where I stand and still have radiotherapy in reserve if I need it.
I am now 10 weeks post op from a knee replacement which also went well so I am more convinced than ever it's vital to find the right surgeon and have a positive attitude.
My next blood test is not for 6 months now so I will push on with life whilst keeping the respect for the Cancer in mind.
Best wishes to everyone here.
18 months post-op and just had my 6 month blood test. Yet again I was relieved to find it is classed as undetectable. I think my area has changed the method as my result came back as <0.05ng/ml as opposed to <0.1 which in my book is better. When I spoke to my Consultant he said that all the results are significant and my next test in 6 months is still very important. So...not out of the woods yet (are we ever?) but still moving in the right direction.
I'm obviously happy with my choice (particularly the Surgeon) but its such a pity we still have to make this choice so suddenly and with such little knowledge. I still preach at almost any guy I meet to take the blood test but it is hard to get them to take it.
Best wishes to you all.
I can't believe it but here I am 2.5 years post op with an undetectable PSA and other than no actual ejaculation no side effects. I had my blood test last week with the usual mental build up and hugh sense of relief. I firmly believe the need to give this despicable disease some respect and always consider it could still be lurking in a forgotten corner of our bodies only to reappear when our guard is down. I think I believe that because the day I received my diagnosis I really did think there was no chance it would be positive. How wrong I was.
I know I am lucky but not in the outcome so far but in my choice of Surgeon. I watched a documentary on the TV last week on PC before my blood results came back. The guy in question seemed in total denial of what he had. He waited 8 weeks before his DaVinci operation and despite his original diagnosis being better than mine his result was incontinence, I guess impotence and a PSA at 8 weeks of 4.3. Something must have caused this and the biggest difference in his treatment from me was his surgeon. I am not saying he had a bad guy but I do believe mine was as good as it gets. Just to confirm the name of my guy is Prof. Christopher Eden. I think the difference is that he just goes that extra mile.
My best wishes to everyone and choose you surgeon carefully.
Sorry for the late update. There is no other reason than I forgot which I guess is a sign that I am getting complacent with my good PSA figures. I think that is really stupid on my part because I have learnt in the past that this horrendous disease need respect or it will come back and bite.
My result this time is less than 0.03 ng/ml which they seem to call undetectable. I believe I am very lucky to have this and particularly with zero side effects. (which I still put down to the skill of my surgeon)I am still on 6 monthly blood tests but I think these will become 12 months if my 4 year test is still ok.
For any of you guys reading this having just been diagnosed the bes advice I can give is try not to panic and if you decide on surgery (which I did on the basis it was the only way I would know for sure what stage I was) then look at the surgeon's history, reputation and statistics.
I wish you all well and keep positive as I am living proof there is life after PC.
Carl's e-mail address is: carl AT casala.co.uk (replace "AT" with "@")