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John R and Bobbie live in Washington, USA. He was 52 when he was diagnosed in February, 2018. His initial PSA was 4.30 ng/ml, his Gleason Score was 7a, and he was staged T2b. His initial treatment choice was Surgery (Robotic Laparoscopic Prostatectomy) and his current treatment choice is Surgery (Other). Here is his story.

Diagnosed with PC Feb 2018. 9/12 cores positive. Gleason 7a.

Still deciding on treatment.

UPDATED

March 2018

I (and my wife) decided on Robotic prostatectomy for treatment. We have seen 6 doctors over the past 6 weeks to help us decide. 2 urologists/surgeons, 3 radiation oncologists, and my general doctor. Contrary to what I was told by friends with similar experience, I found all the doctors to be fair and not pushy in there assessment and in providing options for treatment. I was leaning towards surgery due to the volume of cancer found in the biopsy (9/12 cores positive). The diagnosing doctor labeled me intermediate risk due to this volume, the other aspects of biopsy result were low risk (Gleason 7a and PSA 4.3) But the the volume by itself was high risk, which brought overall risk to intermediate. this risk group left only 2 viable options: EBRT and surgery. My wife asked 2 radiation oncologists what they would do if they were in my shoes, they both answered "surgery". One of the rad. oncologist also said I had another high risk factor: my age, 52. We understood the side effects and are not looking forward to that, but we felt surgery was best for us. Using a nomogram with my specific information resulted in a 40% chance of extracapsular extension. We felt surgery would give us advantage of finding and treating this sooner. We have 5 children, including a 7 y/o, so this treatment (with my diagnosis) seemed to give us best chance for long term survival. My diagnosing urologist is performing the surgery Apr 4th. He is younger and less experienced than the other surgeon, but he is very sharp and two other survivors both said he did a good job for them. God has given me peace through this process so far and an open heart to His will moving forward. I will update after surgery.

UPDATED

April 2018

Had surgery Apr 4, 2018. The doctor said it went well and that he was able to spare some nerves on both sides. Pathology report showed no indication of cancer outside the prostate. Pathology confirmed biopsy report, no significant changes. I had catheter issues. First catheter had crustation after 4 days, had blockage, then when it was removed I had blockage in my urethra. The doctor put another catheter in. That one worked fine. He left it in 8 days to allow any damaged tissue to heal. It was removed today. First day of regaining continence, bit of a struggle so far, but I will continue the fight. Keep the Faith!

UPDATED

May 2018

Continence has improved a Lot. I can go some days without a pad, but selectively use one or carry one depending on what I have going on that day. i followed Dr Catalona's Kegel routine, 4 times a day with empty bladder, 10 sets of five. I found that using the sphincter flex intermittently throughout the day when in the heat of the battle steadily "trained" the urine to stay where it's supposed to stay. Also, my Dr. said to let the urine build up in between bathroom visits to create a strong steady stream to help alleviate the "dribbles". I found over time that almost sub consciously I am controlling the sphincter only when necessary and go through periods of time when I am not even aware of it.

ED is another issue, six weeks since surgery and I am nowhere near an erection able to penetrate, maybe 40% at most. It is discouraging, but we will keep trying. Dr. has given me Viagra for the erections but the first time I took it it did not help much. He also said to take it twice a week regardless to help with blood flow through the penis which will help rehabilitation towards full erections.

My first post op PSA was <.04 which he termed "undetectable".

UPDATED

June 2018

Had 12 week PSA check today, came back <.04.

erectile function has improved much. Have been able to penetrate 4 times with Viagra, either 50 mg or 100 mg. The erections are still not as firm as pre treatment, but we are grateful nonetheless. I got a vacuum pump and used it a few times for therapy only, I had some issues with the surrounding skin getting sucked into the tube which was moderately painful. Had a recent hernia flare up as well as a sore hip flexor and a pulled muscle in my upper abdomen, so held off on the erectile therapy for about a week. Most recently was able to achieve about a 50% erection without Viagra and about 80-85% with 50mg Viagra. continence Doing well, have not worn a pad in about 2 weeks, sometimes I carry 1 depending on the situation. Little discouraged about the hernia, I really don't want to go through another surgery and long recovery. Please email with any comments or questions.

UPDATED

September 2018

I saw a general surgeon regarding my hernia. He said in order to do the surgery laproscopically I would have to wait at least 1 year, ( longer would be better ) from my prostatectomy. If I wanted to address it now it would have to be open surgery which he says has a higher reoccurrence rate. I decided to wait and baby it as long as I can. Erectile function has not changed since last update. Not many opportunities for connection with my wife since the kids are out of school over the summer. There is some pain when the hernia flares up which diminishes my motivation for achieving erections. So, not much improvement in that area. I believe I aggravated or pulled an abdominal muscle while I was doing kegel exercises. I did this 2 or 3 times over a 2 week period. I completely stopped the kegels for about 2 months and have just begun doing them again. My continence diminished over that time period. I dripped substantially more than when I was doing kegels. Feel free to email with any questions,

UPDATED

November 2018

My latest PSA check was drawn in September and was undetectable. My erections continue to improve. I seem to have the best erectile function about 6 to 12 hours after taking 50mg Viagra. Still nursing the hernia. Continence doing well.

UPDATED

February 2019

Latest PSA undetectable in December 2018. Still on 3 month intervals for PSA check. Next one March 2019. Erections about the same, able to penetrate if we time the pill properly. Best erections about 80% of pre surgery.

UPDATED

May 2019

April 2019 PSA was undetectable. Doctor has altered PSA test frequency from 3 months to 4 months. Erections continue to improve. About 50% of the time pre surgery quality with medication, Cialis works better than Viagra for me. Without medication, erections improving as well, got first full pre-surgery quality erection without medication. No issues with continence. Email with questions or comments.

UPDATED

June 2020

Have not updated in at least a year, as of June 2020, PSA still undetectable. About 6 months ago I started taking 5mg of tadalafil 2 to 3 times a week. Erections are about 85 to 90% of pre-surgery and pretty much on demand, and about 95% continent. Please email with any questions and I will respond.

UPDATED

December 2021

Hello, I wanted to update my story and and offer some insight from my experience. My surgery was April 2018. All aspects of the surgery were successful. My PSA's are still undetectable, I get checked once a year. Erections are satisfactory. I wanted to share that I was diagnosed with Mild Cognitive Impairment in June of 2021, Pre-curser to Alzheimers. I did some investigating and found evidence that some men in their 50's that are under anasthesia for an extended time were more likely to develop cognitive impairment. If I was aware of that I would have chosen Radiation. Hope the best for all of you

UPDATED

June 2024

My surgery could not have been better. after the surgery I noticed over time that I was extremley tired. I also noticed that I in a sort of fog. I was an airline pilot and when I returnedI noticed that I had declined in a cognitive way. I lost job eventually which put a big burden on the family. The anesthesia from the surgery triggered cognitive decline. I was recently diagnosed with early on Dementia. If I was aware of the information I would have chose Brachy.

thank You

John's e-mail address is: johnribera449 AT gmail.com (replace "AT" with "@")


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