THERE WAS NO RESPONSE TO AN UPDATE REMINDER IN 2019 SO THERE IS NO UPDATE.
I had my first PSA test as part of a routine physical in November of 2006 and the result was 7.5 ng/ml. DRE (Digital Rectal Examination) was negative so my Doctor scheduled a follow-up 3 months later and the value was 5.9 with a free PSA of 25%. I met with a urologist in September and my PSA had dropped to 5.8 but the free PSA was 10%. I had a biopsy done in December and it came back positive in 4/4 samples on the left side and 1/4 on the right (only 5% of that sample). My Gleason score was 3+3.
I'd been having some back pain so my doctor scheduled a bone scan. This scared me to death! I read all the research and concluded that the probability of finding something in the bone given my Gleason Scale and PSA was effectively zero but that still didn't help me sleep.
The good news is that I had the scan today and it was clear. I was so thankful that the Doctor reading the scan gave me the good news right there - even though the normal procedure was to send it to the referring doctor and to have him give me the news.
Anyway, I've been researching my options, changing my diet and rethinking my priorities. I'll meet with my Doctor this Friday and then plan to go to Sloan Kettering to discuss options.
I want to thank everyone on this site for sharing their stories. It's helped me a lot.
After my diagnosis I read everything I could find and was torn between the various treatment options. I ruled out watchful waiting because of my age and the fact that they found cancer in 4/4 samples on the left side with 40% involvement.
Knowing that surgery was a strong possibility and that the skill of the surgeon is a critical factor, I researched surgeons and then met with Dr. Wagner of the Connecticut Surgical Group. Dr. Wagner was one of the first doctors to do Robotic Surgery and has done over 1,000 operations. After meeting with him I spoke to a number of his former patients and scheduled surgery for April 15.
At this point I hadn't ruled out radiation treatment which I found very attractive because of the lower incidence of initial side affects and the data showing that the effectiveness is similar to surgery. I did a lot of research into Brachytherapy, External Beam and Proton Beam treatments. However after visiting an external beam specialist at Yale and Dr. Anthony Zietman at Mass General I decided that Surgery was the best option for me. I liked the fact that they would have additional information from the pathology report and that the PSA should go to zero almost immediately. I also concluded from my research that there are many good options and that after you've done the research it's a personal decision - there is no one size fits all.
One thing I found very helpful was going to the USTOO support group meetings at Hartford Hospital I was able to meet and talk to people who have been through the surgery and talk to them about the surgery the recovery process. There were men who were diagnosed 15 years ago as well as people were diagnosed weeks earlier.
So, I'm set for Robotic Surgery on April 15th. I'll send an update after surgery.
I had my surgery with Dr Wagner on April 15th and everything went very well. I arrived at the hospital at 9:30, dressed in my Johnny, had my vitals checked and the IV port connected and then waited. Time went by very slowly but at about 11:30 my wife and I were taken to the pre-surgery area where I answered a lot of questions from the Anesthesiologist's assistant and waited some more. I was then taken to the operating room and the next thing I remember I was in the recovery room and it was 3:00.
The pain wasn't too bad but I drifted in and out of sleep until I was taken to my room (a private room with a city view!) at about 5:00. My family came in to visit and I felt surprisingly good. By 8:30 I was walking the halls with help from an aid.
I didn't sleep much at night but had several popsicles and walked the halls a couple of more times. The next morning the resident came in a removed my drains (ouch!) and said I could go home after lunch.
I progressed steadily at home and was on a regular diet by Thursday evening. I was lucky because the weather was beautiful and I was able to spend a lot of time on our patio and walking around the yard. The hardest part was the catheter... I just couldn't get comfortable and only slept for a few hours at a time.
On Wednesday 4/23 I met with Dr Wagner and got good news about the pathology report... negative margins and no lymph node involvement. The Gleason scale was upgraded from 6 to 7 (3+4) but that's not unusual. The nurse took out the catheter (not as bad as I'd feared) and I went home feeling great!
I'm wearing a pad but so far there has been very little leakage. I'm hoping it's due to all of the Kegels I did before surgery but I've also heard that swelling from the catheter can reduce leakage for a few days.
During this time I was in touch with several YANA members by email and their encouragement was very helpful - Thanks!
For those of you who are trying to decide on a treatment or are preparing for surgery please feel free to contact me.
It's now eight weeks since my surgery and I'm doing great. After my Catheter came out I wore a Pad for two days but didn't have any real leakage so I stopped wearing it. My bladder capacity isn't what it used to be but other than that I'm doing fine.
I went back to work after two weeks and started back at Bikram Yoga after three weeks. By about four weeks I was feeling very close to 100%.
The Dr. prescribed 50 mg of Viagra daily but I stopped taking it after a few weeks since it made me feel like my head was a balloon. ED hadn't been bad even without Viagra.
The best news is that my one month PSA came back at 0!! I have another PSA test at three months and a follow-up with Dr. Wagner.
I'm happy to report that my 3 month PSA test just came back at 0.0. I'm feeling great - no incontinence, some ED but getting better.
It's now more than 1 year since my surgery and I'm happy to report that I'm doing great. My PSA is 0 and I have no incontinence or ED issues. I realize that I've been extremely lucky to have had such a smooth recovery... but I'll take it!
Regards, David.
It's now been over 18 months since my surgery and things are going great. I just got my latest PSA back and it was undetectable.
I have no incontinence and no ED problems. I feel very lucky to have had so few short or long term side effects and am very happy with my choice.
Please feel free to contact me with any questions.
Regards, David Whitehouse.
After 2 years post surgery with a PSA of 0.0 my most recent test just came back at 0.1 (this is not the ultra-sensitive test). Obviously I'm concerned and will be reviewing with Dr. Wagner on Monday.
On the positive side I've had no ED or incontinence problems. I'll update after my appointment.
As I noted in my last update I had my first non-zero post-surgery PSA reading in June of 2010. At first I was pretty nervous about it but then realized that it was probably nothing to be concerned about and if it was I would just deal with it.
I thought about switching to the ultra-sensitive test but after talking to Dr Wagner I decided that it wouldn't really help decide if I needed further treatment so I decided against it. I had follow-up tests in September and December and they were both 0.1 so all's good for now.
Everything is going well. I just got my latest PSA test back and it's stable at 0.1. I'll get another test in six months but for now all is well.
It's hard to believe that another 6 months has passed. I just got my latest PSA results back and it's stable at 0.1. All's good with no long-term side effects from my surgery.
Another year has gone by and all is well. My PSA is still at 0.1 and I don't have any side effects from the surgery.
I'm happy to report that my latest PSA test came back at 0.1 and I'm doing great. It's now been over 5 years since my surgery and 3 years since my PSA went from 0.0 to 0.1. My doctor wants me to keep getting PSA tests every 6 months but that's about it.
In January my doctor decided to switch me over to the ultra-sensitive PSA but despite double checking with the lab they sent my blood test off for the regular test. It came back at 0.2 which made me pretty nervous but the then sent the sample for the ultra-sensitive and it came back at 0.11.
For some reason Dr Wagner wanted me to get a bone scan and ultrasound and they both came back clean. So for now I'm feeling great and everything is good.
It's hard to believe that 7 years have passed since my surgery. I'm doing very well with no side effects from the surgery.
I've had 2 PSA tests since my last post.
12/2014 - 0.13
6/2015 -0.14
I have an appointment with Dr Wagner in August but I don't expect him to recommend any further treatment at this point.
Best Regards, David
I met with Dr Wagner today and he's not overly concerned about the slow rise in my PSA. I'll get another PSA in a year and if it hits 0.2 we'll discuss treatment options.
It's hard to believe it's been over 7 years since my surgery!
Sorry for the delay in updating my story. I have two PSA tests since my last update.
August 2016 - 0.15
September 2017 - 0.17
Looking back at my previous updates my PSA has been rising by about 0.02 per year which doesn't worry me too much. I'll be seeing Dr. Wagner in the coming weeks and will discuss the threshold where follow-on treatment would be recommended.
Overall I'm feeling great and am not concerned about my PSA levels.
David's e-mail address is: davew175 AT yahoo.com (replace "AT" with "@")
NOTE: David has not updated his story for more than 15 months, so you may not receive any response from him.
