Currently waiting for my 9 month post da Vinci op PSA result ..
Had annual privately paid for general blood tests since my mid 30s. Everything normal At age 41 my GP suggested adding PSA to the tests even though no family history and no symptoms. PSA was 2.3. Years of watchful waiting ensued. DREs normal. MRIs unalarming. Each year my PSA increased slightly and the MRI didnt change. I also had the genetic PCA3 test and scored the lowest possible for prostate cancer and my free total PSA ratio was high at over 30%. There was a lot of stuff saying random prostate biopsies were unnecessary and risky and my chance of cancer with PSA around 4 was less than 25%. Combining this with the PCA3 and free total ratio results I continued with the watchful waiting. My consultant was happy with my choice. In 2012 embarked on the 'keep prostate cancer at bay whether you have it or not' diet. No dairy. Minimal red meat. Lots of avocado, fish, pulses, pitta, hummus, tomatoes. Only sweet stuff was Manuka honey and for a real treat maple syrup. Minimal alcohol and by minimal I mean once a month. Nice unintended side effect of this diet was I lost almost two stone. 2013 stable. 2014 wasn't as religious on the diet and PSA doubled to 10 and MRI now showed significant risk of some tumors.
Booked in targeted biopsy immediately. 6 positive cores Gleason 4+3 20% 3+4 80% - 2 zones. One right on the edge possible EPE. One 'safely' in the middle. Perineural invasion seen. Pet choline negative. Bone scan negative. Had always intended to have HIFU but this now was not an option so after comparing radio with surgery because of my age and because radio still an option later if required I opted for surgery fully nerve sparing on one side, partial on the other - pT3aM0N0. It had breached the capsule by 1mm. Regained full continence (pad free) within 3-months but still have partial ED (40% of pre op).
Knowing what I know now I would have had a targeted biopsy a few years earlier. T2 is a lot more preferable to T3.
I am told that even with T3 and negative margins there is less than 15% chance the cancer will come back in my lifetime but waiting for the PSA results ain't easy. But worrying will not change a thing. It's either undetectable or it isn't.
Weird coincidence -- a very very good friend of mine 49 years old got PSA test because of my diagnosis and his PSA was 33, and we both ended up having daVinci 4 days apart. Amazingly (un)lucky for us each to have such a good friend going through the same experience at the same time!
Now taking POMI T everyday. Clinically proven with double blind trials to reduce the rate and incidence of PSA recurrence. As my good friend in medical stats says -- it's a no brainer.
Trying my best to stay on the diet. Cancer loves sugar.
Love hiking and do as often as possible.
'Nothing to worry about its undetectable' said my consultant. A relief to be sure as the latest 9mth post op PSA test was Friday lunchtime and the urology nurse said call us on Saturday and we will tell you the result. I called no answer left a message no response and did not find out till the consultant called me on Monday evening.
The reason this was stressful is at the time of my biopsy I was told I could call up for the result which I did and was told by the urology nurses the result wasn't back even though it turned out it had been for a week before the follow up appointment with the consultant who then told me 'you have cancer'.
In my mind I had assumed the urology nurses do not like to give bad news over the phone.
I must take responsibility and next time I will make sure I make it clear I would like to be informed within the promised 4 hr time period.
Next PSA test in 3 months. My consultant today said most PSA recurrences occur within the first twelve months and if PSA free after 12 months the chance of future recurrence will be 1-2%. Nice stat. I will learn about penile injections next week to exercise the faithful muscle. Old faithful has not had a decent workout (except the vacuum pump) for over 9 months. The consultant recommends injection therapy particularly for 'younger' men.
The possible future upside of being prostate cancer free combined with a fulfilling sex life with my wonderful wife without the risk of further children is a tempting one...I am joking but daVinci RALP could be described as the gold standard of vasectomies.
I was very scared when diagnosed and set about finding out all my options ... I really didn't want my prostate out if it could be avoided but after much research and a second and third opinion logic dictated it was the right decision and by the time I walked into that theatre I took full responsibility for my decision.
One more thing: pre-op I was concerned that 'the exquisite point of no return' a man experiences before orgasm would cease to exist. There was very little research on this. All the participants in the one trial I did find reported the point of no return ceases to exist as did my radiologist. But I am happy to report that the point of no return still exists and my good friend who was diagnosed just after me concurs.
Overall if I knew I would be where I am now at the time of my diagnosis I would have been much calmed.
Please do email if you would like.
Good Luck to everyone.
Just had my 2 year post op PSA test this time with my local doctor. Result came in as 0.02 which is a little unnerving as all my other post op tests were undetectable.
As this is a different lab perhaps their methodology is different for describing an undetectable result. My usual consultants lab gives the undetectable results as <0.03 so this 0.02 result is consistent with this. I will have a further PSA test this week at my consultants lab. Obviously I would prefer this to be undetectable ie <0.03.
If there is biochemical recurrence this doesn't really qualify until the PSA is 0.2. Then it will be all about PSA doubling time. I will update again after my further PSA test this week.
Nick's e-mail address is: firstname.lastname@example.org