Through normal annual physicals my GP recommended I visit a urologist when my PSA hit 5.07 ng/ml and my FreePSA was 15.5% in October of 2005.
I met with a urologist in Jan 2006. He recommended an 8 core biopsy which was done and the results came back on February 8,2006. The left mid had a 10% trace of adenocarcinoma in one of two cores with a Gleason score of 3+3=6. There was some high grade PIN in the left apex but nothing definitive.
After a 15 minute discussion I asked him what would he do and without hesitation he said he would have the prostate removed. Of course my head was still spinning from the news and especially his recommendation. He did say to take some time and to get back with me later. That is when I became my own doctor and did a lot of research.
I ended up contacting Johns Hopkins Medical Center in Baltimore,MD to schedule an appointment for a second opinion. They asked for the slides from my local urologist which were sent and they re-read them and came up with almost the same pathologist findings as the local urologist. There was a slight difference in the reading for one core which was in my favor.
I met with a well recommended doctor at Johns Hopkins on March, 2006. After his examination and consultation he said "that train is nowhere near pulling out of the station". In other words the cancer was very small and at the time was only creating some background noise. However, he also said those cancers can get aggressive but if I could live with an annual 12 core biopsy and a PSA every six months he would not recommend any radical treatment at the present time. I told him that worked for me.
The follow up biopsy in September 2006 came back with no change in the one done in January 2006. The PSA in March 2007 dropped to 4.94 ng/ml. I am currently scheduled for another biopsy in September 2007.
I exercise 5-6 days a week and have been very active for the past 27 years so circulation shouldn't be an issue. I am presently considering some additional supplements but haven't pulled the trigger just yet. I can't seem to get any one set of supplements recommended for prostate cancer patients. I have numerous to choose from and the common thread in them all is circulation- so since I do a ton of aerobic exercising I'm just wondering what if anything I should be taking. Advice is welcomed. Thank you!
After semi-annual PSA's and annual biopsies I decided to have my prostate removed. Reasons were as follows:
At age 61 and in excellent health (prostate not withstanding) I discussed with Dr. Arthur Burnett at Johns Hopkins the prospects of having to deal with my prostate over the next 3-5 years. His thinking, although I had no further detection of cancer cells from my biopsies but there were many suspicious cells-meaning they could develop into carcinoma down the road, since my PSA was still gradually rising and I was currently in great health to go ahead and have it removed. So, after thoroughly discussing removal of the prostate with my spouse she was more for it than I. So I decided to have it removed.
It was removed exactly 3 months ago today. I planned for a 3 day stay at Hopkins and I was cut at 3PM on a Wednesday and at 6PM the very next day I was being processed out of the hospital. I have not felt any pain whatsoever-even after the IV drip and and a few pain pills given me when leaving Hopkins. In fact I still have some of the original pills they gave me.
I wore a catheter 12 days but was already walking 3 plus miles daily. I was back in the ym day # 13. For the following 8 weeks I gradually worked my way back to 60-75 minutes of cardio and my 3 ups (push-pull & sit) 5-6 days per week. I firmly believe the past 27 years plus of gym work enhanced my quick recovery.
As far as incontinence I would say I am as about as close to 100% as I can be. Sexually speaking I have had numerous orgasms but firmness is still an issue. Dr. Burnett says to allow up to 1 year for full recovery and not to expect a perfect erection each time.
Of all the people I spoke to prior and post operation, none have said they regretted it. And most of my contacts had Dr. Arthur Burnett at Johns Hopkins in Baltimore, Maryland. He is a great person besides being a great surgeon as the nerves were spared and he did not cut any muscle.
My cancer staging prior to the surgery was T1c with a gleason score of 6. Post operation the staging was T3 as the cancer was developing a focal point on the dark side of my prostate. What Dr. Burnett explained was the cancer cells were at the point of breaking out over time-His only recommendation was a 3, 6, and 12 months PSA; annually thereafter. He explained even though the prostate is gone men still have prostatic tissue in the body-by having annual PSA's if a cell or two got past the goalie the PSA would detect it and treatment can then be recommended.
Also, my Gleason score after the operation was a 3+3=6. No change.
I am 100% pleased that we made the decision to remove. I will be going to Hopkins next week (April 23.08) for my first PSA as Dr. Burnett would like to have their lab perform the first one. Also he wants to talk with me about my progress.
Thanks to you all who kept me in your prayers and thoughts.
After my 3 months check up at Johns Hopkins I had a blood test and after returning home I received a card with my PSA at 7.9 ng/ml. Boy was I shocked - after all those good reports and to discover my PSA had gone to it's highest ever.
I e-mailed my surgeon at Hopkins the following Monday and his immediate reply was the reading may be a "fluke" and to get another PSA test with my local GP. I had already scheduled one and the reading came back 0.04 - Boy what a relief- I have also planned for a third just for piece of mind ( 2 out of three ).
Update to follow- Bottom line just because Hopkins is the prostate cancer capitol of the world doesn't mean they are mistake free- Just pray this next test comes back at or around the second level of 0.04.
About two weeks after my second PSA test I had a third one completed and the results were .07; well below the Hopkins standard of .2; therefore, Dr. Burnett (Johns Hopkins surgeon) said their lab made a mistake and he was going to research it and advise.
My next PSA test is scheduled in 3 months-I will post those results then.
Thanks for all your prayers and concerns. HP
Had another 3 month follow up PSA and the level was .06-still well below the .20 Hopkins considers as non detectable. Praise the Lord!! Next PSA in 3 months. If all is well then annually thereafter.
Since RP in 2008 my annual PSA has been 0.04. Latest lab was February, 2011.
Last 2 PSA's have been 0.05, February 2011 and 0.09, February 2012 respectively. Dr. Burnett from Johns Hopkins, says anything under 0.10 is considered non detectable, therefore I will be anxious about the 2013 (5 year mark since surgery) reading. Also, he stated in a letter to me after surgery my ED would correct itself within 2 years of the surgery; that has not happened. There is a drug I can take via needle injection that works, but my wife and I have decided not to use it because of the timing and inconvenience. It's not a deal breaker. Otherwise I am doing fine.
Spoke this week with my surgeon from Johns Hopkins wondering if there was any new product/suggestion for ED. Although I was told I was having nerve sparing surgery at the prostate Capitol hospital of the world, my nerve bundles remain dormant. No natural erections in over 5 years. Therefor, I contacted my surgeon and received a personal phone call last week. Bottom line, injections. I have tried them and they were 100% effective but were accompanied with too much pain. Plus they were about $50 per injection. Dr. Arthur Burnett, my surgeon, suggested I get involved with a local urologist (I live in Yorktown, Va. Johns Hopkins is in Baltimore, Md.) and discuss my situation. That is my plan for the time being. I am 66, very active, (gym rat, runner, tennis player) and believe there is a solution to be found.
However, I am mostly thankful for no urinary problems and what Johns Hopkins considers non detectable PSA at 0.07 and surgery was in January, 2008. Thanks, and God bless.
Just received my annual PSA since radical surgery January 2008 and it was 0.06. Thank you Jesus. Still zero natural erections since surgery. Guess those nerve bundles are not going to revive themselves. Otherwise things could not be any better.
Last PSA was best since surgery in 2008. It was <0.01. Still have major ED issues. Am going to retry the injections June 15, 2015. Previously the injections of 2012 were good but there were lingering effects such as length of time for erections to subside plus there was some pain involved. Spoke with new men's wellness clinic and they claim injection method of treatment has come a long ways over past 2-3 years. We'll see. Urinary functions are excellent. Maybe once or twice per week will I awaken to relieve myself during the night. I will advise how new injections worked on my next update.
Thanks and God bless!!
Had prostate removed surgically in Jan 2008. No follow up required. Still have zero erections but urination not an issue. Went for follow up with men's wellness but same shot treatment that I refused. Am pleased with current condition minus the ED issue. Thanks!
Annual check up in February and PSA 0.04. No urinary issues and no changes in natural erections (none since surgery 1.27.2008 ). Wished Proton was option in '08 as most of my friends chose Proton and swear by it. Still gym it and have been playing lots of PICKLEBALL! Anyone with questions/comments please advise. Thanks
HP's e-mail address is: hpllgl AT juno.com (replace "AT" with "@")