posted on this board at six months and prior, but can't find it.
MY ONE YEAR AFTER REPORT IS AS FOLLOWS:
Had RP with high-volume surgeon in Orlando on April 11, 2011 (one year ago next week)
At time of diagnosis, 53 years old, excellent health... PSA jumped from 3.2 to 5.0, normal DRE, Biopsy two of twelve, 5% in one 3+3=6, 7% in the other 4+3 =7, one on each side. 25 on SHIM...
Saw two other surgeons first, went with Orlando because he's done the most RARP's in the world (over 5,000). I have to believe the skill and experience of the surgeon is the most important factor in this decision. The other surgeons were giving me a 50-50 chance of trifecta with my Gleason score, where Orlando guaranteed 90% chance! Three hour drive each way three times in all, but had to go with the best odds.
Surgery approx. 1.5 hrs. Up later that day, walking the halls the next morning. All nerves spared, 5 lymphs removed, all negative and negative surgical margins. Largest tumor found was 1.5 cm diameter and was 1 mm away from right anterior and posterior apex margins. Post-surgical 3+4=7, 80% 3, 20% 4.
I'm considered cured now after three 0.0 PSA tests. Two weeks after surgery, I was almost continent (2 pads a day to be safe), 0 pads after four weeks, 3 sets of singles tennis after four weeks, no leakage after six months, but no wood either after six months, just a noodle.
That was the only prediction made that wasn't true was six month potency recovery. There were signs that it might come back, but progress was VERY slow and discouraging.
Happy to report, though, that finally at month 10, things started to get better, and at 11-1/2 months, I can have reliable, firm erections with a 50 mg Viagra, and have even had a couple without Viagra. I sense that I am on the way back to my previous state, though I was very discouraged until 10 months. Penis appeared almost an inch shorter when it rarely worked. Now I think I'm pretty close to where I was pre-surgery, looks and acts like its old self, other than dry orgasm, which surprisingly doesn't really bother me as much as I thought it would, because I'm so happy to have useful woodies and orgasms again.
I did use that g.d. VED EVERY day the whole time, may get to stop using it soon! Yay! Viagra and "stimulation" 3-4 times a week since catheter out. Didn't work for a long time, but eventually it did. During the noodle days, even the MUSE didn't work. In the end, I think the Viagra is what gets it back. When I asked the Docs office about the expense of the Viagra therapy, they said "that's where our Canadian friends come in." I use the one they recommended, get thirty 100 mg. generic Viagras from India via Germany in the mail for a total of $89.00. I was skeptical, but they seem to be the same efficacy as the brand name. Order early, though, takes about 18 days to receive them.
Another silver lining is what used to take 5 minutes takes 5 seconds. I pee like Secretariat now!
It's hard to believe where I am now and where I was a year ago, looking back. As I said in my six month post, there may life after RP after all. Good luck to all!
Last edited by Jim Mc; 04-05-2012 at 07:24 PM.
Reason: not everyone knows what Rarp stands for, especially lower case
It is wonderful to read about your improvement at the one year mark. PSA in the Zeros no paddies or ED. Surgery was the best choice and you are the one to be congratulated.
Thanks for reporting about the results. Many will surely like to know about your story.
Wishing you a continuous cancer-free journey.
Last edited by Administrator; 04-07-2012 at 08:16 PM.
The Following User Says Thank You to Baptista For This Useful Post: Jim Mc (04-05-2012)
Just saw your post and want to thank you.My husband had same procedure and I think by same doctor though he's no longer in Florida. At any rate it was so encouraging to see your progress. His surgery was Dec.2012 and continence great.He's doing penile injections and waiting for return of natural erections..Your post has meant the world to us.Continued good luck.
Thank you for your post. Second anniversary is coming up in 3 days, so it seemed a good time to post two year update.
Continued success to your husband. I really didn't think I would ever be near normal again, but I have to say it's pretty much a distant memory now. I have four 0.0 PSA's, so I'm cured, I've pretty much learned how to control any leakage and have none at all, and, most importantly, I have SOLID WOOD! 100% of the time! with NO VIAGRA! Even the surgical scars have almost faded away.
I didn't think unassisted erections would ever really happen again, and my surgeon was overly optimistic about the time frame (six month to a year, he said) but they have returned, surprisingly firm, I might add. It was more like 18 months before they started to happen reliably, about the time I was giving up hope!
At first I'm pretty sure it was shorter, but now I think I'm finding it just takes a little longer to get to it's previous full size. Wife says its the same.
Wow, looking back to the pre-surgery days, I was so frightened. But I guess the lessons learned are 1) choose a high-volume surgeon, regardless of location 2) do the pump daily, and viagra/shots and 3) patience is key.
Thanks again for your update. So happy for you and your wife. We are so grateful for the big picture..current PSA..0.00 all lymph nodes cancer free..but now very focused on ED issues.I remember before the surgery, the doctor saying that we needed patience.Now, we truly understand. Your posts have been so encouraging.All the best.
Yes, I now think the Docs try to softsell the "patience" required, because they know many patients wouldn't have the determination to see the "rehabilitation" through.
But it seems worthwhile to me, compared to my neighbor who had open surgery about a ten years ago. He had to bank his own blood for the surgery, was rendered immediately impotent, was in ICU for a week, was incontinent for a year and still leaks. Then he had to have radiation a year later because they didn't "get it all."
I'm very thankful for robotic surgery! And now at this point, all the nuisance of the pump, viagra, etc., seems to have been worthwhile. But it sure was a grind at the time!