55 years old somewhat healthy. Kayak and Backpack for exercise. Coach youth football and wrestling.
Father and father's brother had prostate cancer and successful treatments. Eventually succumbed to heart disease in both cases.
PSA 1999 1.3
PSA 2005 3.4
PSA 2011 4.6
PSA 2011 "do-over" 4.5
Four of twelve cores in my biopsy were positive all with Gleason Score 3+3=6. One was 40% and others 15%; 5%; 5% (three were in Apex; one was in Middle); Gland size 35cc (told by urologist 1.5X normal); PSA Free 2.29 (my calculation) PSA Density 0.13 (my calculation) PSA Velocity 0.45/yr(my calculation) Staged T2A (again my calculation) Partin Table Fit 51% probability of containment No bone or CT scan (feel they are useless protocol at this juncture)
Have been looking at the boards for a few weeks now as I felt I was genetically pre-disposed and was right with that.
Weighing LS Robotic removal with experienced surgeon but not ruling out Proton Therapy in South Jersey area (Penn). I was on nuclear submarines 30 years ago and rule out X-ray/gamma as a treatment option because of some understanding of these particles but am interested in Proton. I'll be talking to the experts and "will not panic".
As an aside, I was an advocate for my sister in 2005 when she was diagnosed with appendicidal (PMP) cancer (rare but deadly because it is often mis-diagnosed). Learned a lot while preparing three appeals which put me on a good learning for what I am now entering. I want to advise you of a Health Care advocate in the US for those with appeals in regarding insurance. Laurie Todd is her name and she wrote a book "How to fight your insurance company and win". I had input on the cover of this book and Laurie and I are good friends. She is an appendicidal cancer survivor and spends her time fighting insurance companies in US now as an advocate for patients.
On July 28, 2011 I had DaVinci Robotic. I was glad that I had the board to refer to as I experienced what all of my brothers had endured and expressed on the board. I wanted to know that what I was feeling was normal in my recovery time.
I had surgery at 8:00AM and was able to walk for a short distance by 8:00PM that evening. My surgeon Dr. Butani (skilfull surgeon and excellent bedside manners) of Del Valley Urology in South Jersey told my wife that my procedure was textbook and I was out of the OR in 2 hours. My prostate was pooched up into the bladder (about 5% of men have this) and would have the catheter for 2 weeks.
I had no pain and to speak of and felt like I had done many sit-ups as some other brothers have also mentioned. The catheter was uncomfortable and pinched especially when having a BM but again was not painful. I had to stay an extra day in the hospital because I ran a slight fever but as soon as I broke wind the fever also broke.
I was met at the door by my dog who wanted to jump into my arms which was a little scary but she soon realized that I was not the same man who had left the house two days earlier and settled beside me next to my Lazy Boy which I ended up also sleeping in for the first 5 or 6 nites.
I walked short distances at first each morning with my leg bag and after a week picked up the distance and extended the time to 1/2 hour walks twice a day. When the catheter came out (which did not hurt a bit) I extended my walks to 1 hour twice a day and got the mileage up to 2 miles. Slow going but I did wanted everything down there to mend properly. At about 4 weeks I picked up the mileage to 4 miles in about 1 1/2 hours and the continence battle began.
I wanted to be normal and began doing my Kegels but as the next 2 months ensued felt that I must not be normal or that I was doing something wrong because 5 to 6 pads (Tena's) were a normal day for me. I tried doing less Kegels; I tried doing more Kegels and nothing seemed to help improve my situation. I got some helpful support from friends of friends who had the operation and realized that I may just be one of the slow ones on the road to continence.
My 6 week visit revealed that there were no margins and my PSA was undetectable. I was happy but not overcome with joy because football season was on the horizon and there was no way that I could coach football while changing pads every 5 minutes. Things did finally start to get better around week 8 which is when I also went back to work. Down to 3 pads a day. At present (16 weeks out) I wear 1 pad per day but only because I do not have the confidence to go without it yet. My continence is good except when I indulge in too much of my homemade wine or too many beers.
I have my pump but have not begun taking Viagra yet. I am not hard enough for intercourse but do see some life down there and am hopeful. 2nd PSA December 16. Will update.
I am almost at the 1-year mark (July 21, 2011) since removal of prostate and have had three un-detectable PSA's. Never thought I would have been so happy after obtaining a ZERO on a test.
My urinary control is back but when I have to go I really have to go and get some sprits when in an awkward position in an attic or crawl space doing my electrical jobs.
ED is ever so slowly improving but again is improving. I neglected to mention in my last update my wife. She has supported me and helped me get through this. I am a lucky guy. I still do and always will love her.
I noted that someone recently questioned rowing on the discussion board. I am an avid kayaker and am back to doing 20 mile paddles with my kayaking friends but it was only after about 5-6 months that I started to have some confidence in my core muscle group and slowly built them up. I also just returned from our annual week long trek on the Appalachian Trail. We do about 8-10 miles each day for a week and felt good but again had some sprits in my small one-man tent getting up in the morning.
All in all life is very good and hope that my story is encouragement to others. Last year I read someone else's updated comment that the prostate event was basically a non-event in their life. I yearned to be able to say the same and can now say it also in the scope of all the negative things that I was afraid would happen. Thanks Doctor Butani (Del Val Urology South Jersey and staff)
Please advise anyone with(genetic)history to get PSA's at 40. Medical industry in US will do what they may but if you have family history get baseline at 40. Pay out of pocket if insurance does not cover or GP balks at ordering. I have read the literature and still feel that screening saves lives. Get checked and PSA for all the uncertainty is still the best predictor.
Finally kudos to Terry and his one-man-band. Life is for living! [Thank for the kind words Ant, but I am no longer a one man band - Mark Freedkin and a band of men have given me a deal of help - see About Us]
It has been almost 1-1/2 years now since RPP and PSA remains undetectable. Continence good. ED still a problem but continues to ever so slowly improve. Continued prayers out to all of my brothers who have been touched by this cancer especially Terry and Don Oberlin who both reached out to me after my initial diagnosis. Thank You and God Bless........AntKne
It has been about 2-1/2 years now and still undetectable PSA but ED continues and Viagra helps but do not like side effects. I am still an active kayaker and do some Appalachian Trail section hiking. I limit my caffeine intake as I found that this creates some more drips than usual. For me all is well and consider myself fortunate to have the love and support of my wife and family. AntKne
3-1/2 years out now and things have not changed much from the December 2013 update. ED and a little spritz of urine when getting in and out of my Kayak or over doing it on my Appalachian trail hikes. Other than that life for me is good and do not regret my treatment choice. Would like to remind all to tell your friends and family to get a PSA starting age 40 unless history in family. Early detection is key!
Recent PSA 0.1. All is good in my life. Still slight ED but otherwise happy and feeling great!
Just completed my annual Appalachian Trail section Hike and continue to kayak. Retiring at end of this year and very much looking forward to this.
All is good! Still have some urinary drips when in tight positions getting in/out of my tent or bending in an attic/crawl space performing electrical work but nothing to speak of. Slight ED bothers me some but if I had it to all over again I would still have performed the same treatment.
Annual PSA is still un-detectable so I am one happy camper!
Thank You Mark for taking the reins on this web site. God Bless all of my brothers who have faced this and continue to enjoy their lives!
Ant's e-mail address is: aaknestaut AT verizon.net (replace "AT" with "@")