I have been monitoring a high PSA since my first test at age 52. PSA started at 5.5 a moved back and forth between 4.4 - 10.8 for 11 years. Over the past 10 years I have had 3 biopsies, each coming back negative. In January of 2009 the PSA went to 11.6 which prompted another biopsy. This one came back positive, 10% of ONE-OF-TWELVE cores showed adenocarcinoma cells, Gleason 3+3, T1c N0 M0. My urologist called with the news right after my wife and I returned from vacation. He prefaced the news by saying, "this may sound bad, but you are in a very positive position. Your cancer is very early, completely contained, and all of the treatment options are available for you." Of course the doctors do not recommend a particular treatment for an individual but layout the options and ask the patient to decide. Like many others, I started reading; researching and talking to anybody I could find who had this experience.
Initially I was certain that brachytherapy (seed implant) would be the treatment best for me. My urologist seemed to be supporting that path as well, even though his specialty is Da Vinci Surgery. I went for consultations with an Oncologist in Grand Rapids MI at Spectrum Health where I learned that my prostate size was too large (52grm) to proceed with brachytherapy and would need to be reduced with hormones before going ahead.
Of course I was concerned about how the hormone treatments would affect me, so as I continued to research the subject through email and web sites like YANA, I started to find more and more that brachytherapy alone does not have as good a long-term outcome as I had first believed. Also I started to realize the problem I would have dealing with the uncertainty of the PSA testing after radiation therapy. One of the other elements in this decision is my occupation as a commercial pilot. Following treatment I will need to demonstrate to the FAA that cancer has been removed in order to get my flight medical renewed. As I understand it, this requires PSA testing that shows significant reduction and with radiation treatment this may take some time.
Because of all these; radiation results, hormone side effects, timing, uncertain test results, I have changed my direction for treatment and decided that Da Vinci Surgery would be my best option. Currently I am waiting for my first appointment at the Henry Ford Vattikuti Urology Institute with Dr. Mani Menon with the intention of scheduling the surgery soon.
May 2009: My wife and I traveled to Detroit for a consultation with Dr. Mani Menon at Vattikuti. We went fully expecting to schedule Da Vinci surgery within the month. After reviewing my slides, lab tests and PSA history, Dr. Menon and his staff strongly suggested that I consider 'Watchful Waiting'. They felt it was too early and the cancer detected was too small to go ahead with the surgery. While they were willing to go ahead if I insisted, they felt there was some chance that my PCa could be 'indolent' and thought I should monitor for awhile first. They had a criteria for when/if to move ahead with the surgery. They suggested PSA testing every 3 months along with DRE's. In one year I should have another biopsy (probably a 20 needle saturation) to determine the status. If the Gleason score increased – OR- if the percentage in one core went above 30% - OR – if 3 cores showed cancer – THEN I should move ahead with treatment. I decided to follow their recommendations.
June 2009: PSA dropped from 11.3 at diagnosis to 8.9, DRE normal. Continue WW.
July 2009: This month I was successful in getting the FAA to issue my Flight Medical again. The last two months have been very frustrating trying to get the FAA Medical Standards people the documentation, reports and tests they need to understand that my PCa has not advanced and is not a threat to safe flight. One of the last tests they required was a full-body-scan to demonstrate the cancer had escaped to my bones. Now I can go back to my work as a Corporate Pilot. Very frustrating to healthy with a few cancer cells in the prostate, yet GROUNDED!
October 2009: PSA up a little to 9.3, DRE normal. Continue WW.
January 2010: PSA up again to 10.8, DRE normal. Almost a year from the first diagnosis and time to start considering another biopsy. Dr. Menon at Vttikuti had mentioned a saturation biopsy but my Urologist thought we should have another 'standard' 12 core biopsy so we could correctly compare with the previous year. In continuing to read and research with the help of sites like YANA and with several email-support groups, I wasn't keen on just continuing with the blind, random biopsies. I had been learning about a process of Color Doppler Ultrasound to guide the biopsy and brought that up with my Uro as an option. At first he was against the idea, but after a long and useful discussion, he agreed that if it would make me feel more confident I should have the CDU.
March 2010: My wife and I traveled to Rochester Hills MI to see Dr. Fred Lee at Rochester Urology. Dr. Lee pioneered the use of CDU in prostate diagnosis and is renown for his work and contributions with transrectal prostate ultrasound. The CDU showed one area of concern that Dr. Lee believed to be cancerous and several areas that were suspicious. He biopsied the areas using the CDU to precisely guide the needles taking 4 core samples. The CDU showed one area Dr. Lee believed to be a tumor that was starting to acquire additional blood supply, he felt the pathology would indicate it was time to move ahead with treatment. However, when the pathology reports came back we were all surprised; the areas that showed up on the CDU were NOT cancer but areas of inflammation. There were some 'pre-cancer' cells in the primary suspect area, but the inflammation and prostate enlargement seem to be what are driving the increased PSA. Dr. Lee's opinion is the original diagnosis of last year was of 'indolent cells', his recommendation was to treat the inflammation and the BPH, then continue WW by monitoring with PSA every 3 months and another CDU in one year.
The Color Doppler Ultrasound process would seem to provide a reliable method of monitoring the PCa status, using the biopsy when change is detected. It certainly makes more sense than multiple random biopsies that continue to increase the infection and inflammation in my prostate. This is the process I plan to follow, I certainly hope it is a correct decision.
Since March 2010 I have been tracking my PSA every three months with readings of 8.8, 9.1, 10.7, & 9.1. In November 2010 there was a prostatitis flare-up that was treated with Cypro.
With the annual Color Dopler Ultrasound coming up I was feeling very positive since the last PSA had dropped. On March 3rd I went to see Dr Fred Lee in Rochester Hills MI. Since my last visit a year ago Dr. Lee had upgraded the CDU equipment, the new one being more sensitive.
The new equipment showed a suspect area with a trace of what could be an increase in blood flow, indicating a possible tumor. However, this was the same area that was biopsied one year ago and the red that was showing could be the inflammation from that biopsy so I elected to hold off on another biopsy at that time. The plan is to wait 90 days, take another PSA and go in for another CDU on June 1. If there is any increase or even the same suspect area, we'll do another biopsy at that time.
I will update YANA again in June.
JUNE 2011: I was suppose to send an update in June of 2011 but somehow that slipped by. PSA = 10.8. In June 2011 I visited Dr. Lee to monitor my pca with the Color Doppler Ultrasound process. Dr. Lee again detected an area the appeared to be a tumor with increasing blood flow. The area was biopsied and it turned out to be a pocket of invection and high grade PIN. I elected to continue the AS process, the next PSA to be taken in August 2011.
AUGUST 2011: PSA test came back at 9.3. Feeling pretty good about my choice of Active Surveillance as the right direction for me. Next PSA test is scheduled for November 2011.
NOVEMBER 2011: PSA test came back a 12.3, that was unexpected and my urologist wanted to biopsy. I asked for a round of antibiotics before going forward with another biopsy.
DECEMBER 2011: The uro prescribed 30 days on Sulfamethoxazole-tmp-d 800, two weeks after completing the antibiotics the PSA came back at 11.3. Not as much of a drop as I was expecting so I scheduled appointment with Dr. Lee for another CDU.
JANUARY 2012: Another visit to Dr. Lee for a Color Doppler Ultrasound and probable biopsy. Again the CDU detected an area of increasing blood flow. The area and the picture looked the same as was found last June and I elected not to have another biopsy at this time. I plan to wait 3 months, then check the PSA and return for another CDU. If the same picture shows up again I'll go ahead with the biopsy.
April 2012: The PSA remains above 10 so it is back to Dr. Lee's for another CDU and almost certainly another biopsy. The CDU still shows the same area of concern so here we go again with another round of needles and antibiotics. This time however the biopsy comes back with Gleason 6 in two cores, 10% in one and 20% in the other. From what he sees with the CDU and confirmed with the biopsy, Dr. Lee believes it is time to move out of WW and consider treatment. I'm ready to move on, I've had enough biopsies and PSA stress. I had decided 3 years ago that when WW was no longer an option I would go ahead with surgery at Henry Ford Hospital in Detroit. I called Dr. Menon for an appointment to get the process underway.
May 2012: Robotic surgery with Dr. Menon is scheduled for July 16th at Henry Ford's West Bloomfield facility. I was surprised at the amount of pre-surgery testing required. Because my PSA was over 10 Dr Menon wanted to ensure there were no surprises so along with the standard blood work, EKG and chest X-ray , I had a full body scan, bone scan, and CT scan of abdomen and pelvis. All of these came back negative so now its a matter of waiting for July. Since this will be the first time I've ever had a surgery or even in the hospital overnight, it will be a long 60 days of waiting and worrying. I'll update again tether the surgery.
July 2012: Robotic surgery by Dr. Mani Menon on July 16 at Henry Ford Hospital in West Bloomfield MI. This is totally new experience for me as at 68 I've never been in the hospital overnight or been under or had any type of surgery. The procedure went very well and the staff at Henry Ford was absolutely terrific! Dr. Menon used the "super vail nerve sparing" technique on me and inserted a "supra pubic drain" instead of the normal catheter. I am now 5 days post-op and recovery has been going very well. It's far to early to tell if the nerve sparing worked, but the pubic drain has been great. Very little discomfort and works well. From what I've heard about the catheter system this is a huge improvement. In 2 days I'll have the drain removed and get the pathology results. I'll update again in a few weeks with the results.
July 23, 2013: Today the 'pubic drain' is removed. To be sure things are working two days prior I started to "cycle the system". This is done by closing a 3-way valve on the drain tube and waiting for the urge to urinate. Then you pee in a marked container and measure the output. Then you open the 3-way valve and measure the amount that drains from the bladder in 5 minutes. This cycle is done for 2 days (not at night) and the amounts recorded. In my case, the pee measured from 180ml to 220ml each time with only a trace of drainage following. Along the way I learned that the 'normal' urge to urinate happens when there is about 200ml in the bladder. Seems as though I'm working but the "stream" isn't what I expected with that large prostate out of the way. There could be some swelling in there that is causing the weak stream. Time will tell.
Removing the tube turned out to be very easy. I thought it would be painful but the nurse told me to breath in - then out and before I knew anything had happened the drain tube was OUT. A small piece of gause over the wound and I'm cleared to go.
The pathology report was a little worse than I thought from the CDU's and biopsies before surgery. The pre-surgery indicators were involvement on the right side only at a Gleason 6. Post-surgery showed involvement on both sides, a total of 15% was cancerous, most still a Gleason 6 but 10% of the 15% (right side) was Gleason 7a (3+4). Still a good report as all of the cancer was deep in the prostate, nowhere near the margins. Lymph node sample was clean. No extensions or involvement anywhere else. The final results are very encouraging, now it's 4-6 weeks of light-duty to let things heal.
Bladder control returned before the drain was removed but the next day I started to have some leakage. I'm expecting this to improve as things heal in the next few weeks. In the mean time I start the prescribed "aggressive penial rehab program" that I hesitate to describe here but if you want to contact me by email I'll be happy to fill you in on the details. My next milestone is the first post-op PSA test at 4 weeks after surgery. Like everyone else who has had this experience, I'll be on pins-and-needles until getting that report. I'll update again after that first PSA.
August 2012: The first PSA 30 days after surgery was a major worry for me. Even though the surgery went very well, and the pathology reports indicated the cancer was totally contained, getting that first PSA report caused a lot of anxiety UNTIL I saw the results of <0.06 or "undetectable". What a relieve, I felt like the weight of the world had just come off my shoulders. The other elements of recovery are going reasonable well. At 30 days I'm using one pad a day (sometimes less) and erections are "trying" but not very successfully as yet. Everyone tells me to have patience, it's only been 30 days.
November 2012: The next milestone has been reached. The 4 month PSA check was not nearly as traumatic as the 30 day check. Again the results came back at <0.06 or "undetectable". Now I'm feeling this thing is really over, that I really am one of the fortunate one's and the PCa is really gone! Continence has almost completely returned. I still may have a little leakage when I play tennis, but otherwise I feel confident leaving the pads at home. Still working on the sexual function but am seeing indicators that say this will be back in time. In a short time I'll be returning to "annual PSA checks" and all the monitoring and worries will be forgotten. Of course, at this point I'm very happy to have made the decision to go with the DaVinci surgery, specifically with Dr. Menon at Henry Ford Hospital. I'm also very thankful that this website existed because it was through the contacts and experiences on YANA that I worked through the right decisions for my situation. Thank you all!!!
FEBRUARY 2013: Not much has changed since my last update. I continue to monitor PSA every 4 months. The PSA remains undetectable. Other than the sexual function, everything has returned to normal and I feel very fortunate indeed! The staff at Henry Ford Hospital have me on a comprehensive rehab program and I'm reasonable confident that the ED challenge will come back as well. If my experiences can help anyone going through this decision, please do not hesitate to contact me, I will be happy to discuss any and all issues with you.
It has been 18 months since my prostate was removed robotically. PSA's have been taken every 3 months since and each has come back less than .06 or "undetectable". After four or five times my "PSA anxiety" has diminished to almost nothing. I have very little trouble with incontinence, only a little leakage when playing tennis or pickleball but if I combine golfing and a beer, look-out! However, sexual function is another matter. Although I did have the nerve-sparing surgery and did go through the rehab program of Viagra - Pump - Shots, that function still has not returned. Sometimes there is a glimer of hope but I'm starting to think that area may be lost or at least severely limited.
All-in-all I feel incredibly blessed. Life has returned to almost normal and except for that sexual area I can almost forget that I ever had prostate cancer. I thank God everyday for the skill of the surgeons and the robotic technology that made this chapter in my life so successful. Today I was reminded of another small blessing from this surgery when I went for my annual physical. The doctor put on the rubber glove and was getting out the lube when I reminded him there wasn't anything there that needed to be checked! He seemed as happy as I was to skip that part of the physical.
I wish you all well and I pray that your journey with this monster will come out as well as mine did.
There is little to add to my previous posts. I have my PSA done annually now and it remains "undetectable". Concern over the next PSA test has gone completely, in fact after my last blood test I forgot all about getting the result until I went for my annual physical. Then again, maybe that's just old age.
I am noticing a slight increase of "leakage" occurrences. These continue to happen with exercise but now I am experiencing some with just normal, everyday moving around. The sexual function never returned on its own but it's still possible with some help from chemistry. The most effective of theses is the injection method. Not easy to do but it works!
Life is good and I'm incredibly blessed. I happy with choosing robotic surgery, knowing that everything is out of there gives me great piece of mind.
It has been seven years since I was diagnosed, four years since having robotic surgery to remove the prostate. I have reached the point where I rarely think about the prostate or the cancer. After the many PSA test following surgery all coming back undetectable, the PSA anxiety has disappeared. I am truly fortunate in that the cancer was fully contained and that I have few side effects from the surgery. Dr. Menon at the Henry Ford Hospital in Detroit did a very fine job and I am eternally grateful.
I do have some occasional urinary issues when, without warning, a small amount of urine may be released. This often happens when I get up from a chair or when I'm participating in a sport such as golf or tennis. I really have little to complain about as using a thin 'panty liner' in my underwear will catch any small dribble that may happen.
I am no longer under the care of a urologist and only have a PSA taken once a year, monitored by my GP.
It has now been eight years since I was diagnosed, five years since having robotic surgery to remove the prostate. This update is almost identical to last year's. My PSA remains "undetectable" and the side effects remain very manageable. The occasional urinary issues continue only as a small amount of urine release particularly when participating in a sport such as golf or tennis. I use a thin 'panty liner' in my underwear to save the embarrassment of a wet spot on my pants. My family doctor continues to monitor during a once-a-year standard physical. Sexual function is mostly gone, I'm sure that is a combination of the surgery and my age.
God is good and Life is good. I'm among the fortunate and I am still thankful every day!
Bill's e-mail address is: bklungle AT chartermi.net (replace "AT" with "@")