I am an American living in Macau. Absent any particular known health problems (other than a slight increase in instances of constipation), I decided to undergo a thorough physical exam + colonoscopy at Bumrungrad Hospital in Bangkok. While the outcome was generally satisfactory, my likely first-ever PSA result came back at 6.1 ng/ml. At this point I should say that my father (still living at 90), had a history of BPH and had undergone a TURP in 1990 to improve flow. For my part, I had heard for at least 20 years (and maybe 30) that I had an oversized prostate; but nothing further.
My first advice from the Bumrungrad urologist was to take PSA readings every 6 weeks in Macau and see what the trend was. Over the next 12 weeks, the PSA went to 6.8 ng/ml and then 7.09 ng/ml; at which point it was suggested I undergo a biopsy. The biopsy--taken in nearby Hong Kong at six sample points under intravenous sedation--came back negative on all six samples. The Hong Kong urologist however gave me the advice that "just because we didn't find it doesn't mean you don't have it". That is the first unnerving revelation in this process; although the end diagnosis was "BPH", the only alternative biopsy outcomes are "positive" and "inconclusive". The other discouraging consequence of this first biopsy was infection resulting in a high fever and basically a full week lost out of work; something which probably caused me to not want to undergo it again unless there was a really good reason.
In the aftermath of this experience, the Bumrungrad urologist recommended that I go on a six-month PSA test frequency from that point forward. This was however modified to 3 month frequency when the readings started to look erratic. The PSA results over the next 2 years went like this (although "Free" PSA numbers were also taken earlier, he said only Total PSA would be needed thereafter):
July 2005 - 5.2 (Macau)
December 2005 - 7.89 (Macau)
March 2006 - 8.0 (taken at Bumrungrad)
June 2006 - 5.5 (Macau)
September 2006 - 7.3 (Bumrungrad)
January 2007 - 8.22 (Macau)
April 2007 - 11.1 (Macau)
It was this last result that was particularly alarming and caused me to schedule another biopsy. This was performed at Bumrungrad in Bangkok on 30 May 2007. A total of 8 samples were taken, 5 of which coming back positive for adenocarcinoma; all but one of the positive samples showing 5% or less tumor presence and one about 10% and all with Gleason scores of 6(3+3). As results were positive on both sides of the prostate, but the Gleason scores are not too high, I'm unclear whether I am to be classified as T1c or T2c. (As on this occasion I was given antibiotics, namely Cipro, for 3 weeks following biopsy, I experienced no fever) Full body CT scan and bone scan were done on 3 and 4 June, respectively; coming back with no sign of metastases or other major issues.
Urologist placed all the options (radical surgery, laparoscopy, radiation, radium pellet implantation, "watch and wait") with survival rates as possible in my case; but suggested delaying 4 to 6 weeks after biopsy to do any of the surgical or radiation options.
After getting multiple opinions from others, I have decided to go with robotics assisted laparoscopy with Dr. John Munoz in my home state of New Hampshire. Surgery is scheduled for 17 July. I'll keep you posted.
While my return to normalcy is still in progress, I decided it was perhaps time to update my situation as it is now three weeks after LR surgery.
As there were only a few business days available between my return date to the U.S. from Macau in advance of the surgery date of 17 July, I blitzed through the first meeting/pre-surgical consultation with Dr. Munoz, pre-screening tests (basically only EKG, chest X-ray) and Kegel exercise instruction all on 16 July in Manchester, NH. The simplicity of these preparations was enabled by the good detail from the CT and bone scans and biopsy results taken at Bangkok's Bumrungrad Hospital in early June. The robotics-assisted surgery itself took place at Manchester's Catholic Medical Center at 3 PM on the 17th with me under general anesthesia, and reportedly took a little over three hours. Although I allegedly awoke in the recovery room, my first hazy memory of returning to consciousness was as I was being transferred into the bed in my assigned hospital room. My first impressions were some localized pain coming from the five 1 inch (or less) long incisions in my abdomen whenever my stomach muscles were called to action; and of a nurse trying to teach me how to use a device you breathe into to apparently assure lung capacity recovery (I have to admit to forgetting those initial instructions and not using this item very much). Otherwise, I was aware of some devices that were strapped onto my surgical stocking-clad legs that were squeezing and relaxing on a recurring cycle; apparently to avoid the formation of blood clots. At around midnight that same night, a nurse directed me to start walking around the corridors as she carried my catheter bag; an experience that was at once painful and embarrassing.
While the alleged "best case" scenario would be that I would leave the hospital the next day to convalesce at home, this was not going to happen for me. After doing a fairly good job of consuming the liquid-only breakfast of the following morning, I became aware of a growing inability to pass anything out of the south end of my digestive system, including gas; this despite ingesting a stool softener capsule on a 12-hour cycle. In the afternoon of the 18th, I also ran a slight fever (100.4 F) which abated quickly after taking a few Tylenol. I continued to take periodic walking laps around the corridors throughout the 18th, but didn't eat much of the liquid-only lunch or dinner due to absence of appetite. I didn't sleep much during the night of the 18th into the 19th, and by mid-morning on the 19th the pain in my lower abdomen was approaching an intolerable level and no gas was releasing in any direction. To confirm that I wasn't experiencing an "ileus", I was wheeled to radiology for an abdominal x-ray. Suffice it to say that there was no tract structural cause for the problem found, and the problem "resolved itself" on the way back to my bed.
With no other issues keeping me there, I was released from the hospital - with catheter remaining in place - on 20 July. Best case scenario would indicate that the catheter could be removed on 24 July, or one week after surgery; but it would on be on the third visit back to the urology clinic - on 31 July - that the bag's blood content would be considered low enough to assure avoidance of formation of new clots in the urethra. At the time of this writing - one week after removal - the blood content appears to have cleared totally and, while early yet and the stream is somewhat weak, there are no problems yet with incontinence.
The other good news is that diagnostics that could only be enabled by the surgery itself (e.g., lymph node condition, analysis of seminal vesicles tissue, confirmation of Gleason score from samples of the removed organ) all confirmed the biopsy indications and showed no spread of the cancer beyond the prostate itself. No further treatment was accordingly prescribed, pending further PSA results. More will follow later.
Now eight months out from surgery, I thought it time to update my situation. I returned to Macau five weeks after surgery in the U.S.; continuing to wear incontinence pads a few weeks beyond that point - and at night only - after one minor "oops" occurred the first night I tried going "cold turkey" without them. Other than that one exception, incontinence has virtually not been an issue; but I am "generally" continuing to do the Kegel exercises (although not always consistently) and will keep doing so per LR surgeon Dr. Munoz' advice for one year, post-surgery.
At this writing, I have now had three PSA tests at one month, four months and seven months intervals after surgery (the quarterly test frequency to continue for two more tests, and then change to semi-annual frequency for the following few years, absent any unusual indications); with posted results of 0.04, 0.014 and 0.013, respectively. Based on my reading of the results posted by other YANANOW Mentors, going to the third decimal place must be something unique to only a few testers (in my case, the last two readings were taken at Bumrungrad Hospital in Bangkok). With my Bumrungrad-based urologist (Dr. Choosin Jirachitsumpun) advising me that any reading that starts with "0.0" being considered "very good", I am not going to worry much about this.
Finally now understanding why many are loath to use their real names in posting their experiences, what I can say about the other "I" word is that it remains a work in progress. I was placed on a regimen of taking the "blue pill" once every other day by my LR surgeon to encourage blood flow; an approach that has since been ratified by Dr. Choosin. While other mentors are indicating different experiences, Dr. Munoz said that despite what appeared to be a successful nerve-sparing surgery, to expect it to take about a year before knowing what one's long-term capabilities will be in this area.
My update is fairly without drama thus far.
For the first year following the July 2007 surgery, I was put on a schedule of quarterly PSA tests, which went in order as follows:
August 2007 - 0.04 (Manchester, New Hampshire laboratory),
November 2007 - 0.014 (Bumrungrad Hospital, Bangkok laboratory),
February 2008 - 0.013 (Bangkok), and
May 2008 - 0.03 (Manchester).
For the subsequent period, the interval for testing was increased to semiannual, with all tests done in Manchester NH as follows:
December 2008 - 0.03 and
May 2009 0.04.
On the subject of variation between the two testing sources, neither Dr. Choosin in Bangkok nor Dr. Munoz in Manchester thought there was anything to be concerned about, nor was Dr. Munoz reading anything into the slight uptick in the indication of the May 2009 result.
We moved back to the U.S. (to New Hampshire, in a house we had kept while in Macau) in mid-August, coincident with my discontinuation of full-time service with my Asian employer (they may call me back in the future, but on an "ad hoc" basis). I have now been placed on an annual testing schedule only, with the next test scheduled for May 2010.
Otherwise at this stage, there has never been an issue with regard to incontinence but the other "i" word has not shown any improvement. With that rather notable exception, I practically never think about things related to the loss of the organ except around the time of the PSA sample-taking.
My story line has been, blessedly, fairly flat. After a year of quarterly tests and a second year of semi-annual tests I am now on a PSA test frequency annual basis. The result taken in the U.S. is consistently between 0.03 and 0.04, which is slightly higher than the first two results taken at Bumrungrad Hospital in Thailand back in 2007 which were 0.014 and 0.013, respectively. I believe that the difference at these low numbers for the two test sources (the other one being at a medical lab in Manchester, NH USA) has more to do with the quality/accuracy of the analytical equipment rather than any significant fluctuation in my body chemistry.
Otherwise, there are no issues with incontinence or urinary function; and while I could stand some improvement in terms of sexual performance, I'm admittedly not very motivated to followed my doctor's recommendations about improving same. Maybe it has to do with our age and retirement condition, but I would say that both my wife and I are summarily content with things as they are. The fact I have a few other medical conditions accumulating that are not worth mentioning at this point and not at all life-threatening that also relate to age.
I retired in July 2009 and moved from Macau back to the U.S.
With the 5-year anniversary of my original diagnosis now past, and with a same anniversary pending for my laparoscopic-robotic removal surgery next month, it is appropriate to update my progress.
The basic situation is that there is nothing new to report in terms of other procedures/anything unusual related to my condition. Going forward from May 2009, PSA tests have been taken annually; and I'll admit to a slight concern when my surgeon's lab of choice reported an increase from 0.04 to 0.05 from May 2010 to May 2011. Dr. Muñoz however dismissed this uptick as insignificant.
The May 2012 test result of 0.0 reflects the use of a new lab located near my new residence in Clinton, CTUSA where we moved in April 2012. The elimination of the second decimal place in the result—other than reflecting a lesser degree of detection precision—can be interpreted to mean it is less than 0.05. In any case, the doctor sees no cause for concern and we will continue to go with annual PSA tests only. On this low basis of frequency, I will continue to have my annual checkups with Dr. Muñoz despite the 300 km distance from my home to his office.
This month will mark the six-year anniversary of my laparoscopic prostate removal surgery. As I have now moved to Clinton, CT (USA)--our second relocation since my story began--I am now able to use Yale-New Haven Hospital facilities as a resource for my annual PSA tests. They are well known for overall competence, and issue results--as did Bumrungrad hospital--in a three-decimal-place format. My May2013 result was 0.008, the lowest yet recorded. Accordingly, I have no particular concerns going forward re prostate cancer recurrence. In the interest of completeness of report, I confess to accumulating a few minor health issues; none of which are either relevant to my case or life-threatening but are however representative of the advancing years (71). I work out fairly regularly (mainly cycling and other low-impact forms of aerobics) and my weight is holding at about the same level as it was at the time of surgery. Now retired for 4 full years, I consider myself an active participant in life through volunteer work--within and without of my church--and the demands of maintaining a 300-year-old antique cape homestead. Carol and I will celebrate 49 years of marriage in August.
It has now been seven years since my surgery of July 2007. My PSA monitoring continues to be on an annual basis only and--with the stipulation that testing sources/accuracies have varied as I have moved from Macau to New Hampshire and Connecticut (where I am now) in the intervening years--the reading has never been higher than .04 ng/ml. On my most recent annual visit to Dr. Munoz (the procedure surgeon), I was told that the formal annual checkups could stop at the ten-year anniversary. Other than prompts from YANANOW or on the day of PSA testing, I virtually never think about the prospect of the cancer returning; although statistically it would be possible. Finally, I would be remiss if I didn't thank Terry Herbert for his work and his supportive personal messages to me early in the process. Blessings to all who are facing the PC challenge and to those supporting YANANOW!
My last checkup with Dr. Munoz at Manchester (NH) Urology indicates virtually no change from conditions observed a year earlier. A different laboratory was used for the PSA reading, so the "0.0" feedback is less rigorous than the one given (4 places to the right of the decimal) on the previous occasion. At this writing I am now 8 years out from the original surgery and don't even remotely concern myself with any thoughts about my pc history or future. Dr. Munoz further advised that after my annual checkup in 2017, no further checkups will be required unless new symptoms develop.
I am now 9 years & 2 months past my "da Vinci" assisted laparoscopic surgery that was performed in 2007. The annual-only PSA test taken every year since 2009 has been analyzed by a different lab from time to time, with one particular lab even giving results to 4 places to the right of the decimal; but in no case has the number ever been higher than .014, and with no discernible trend in any direction relative to time. There continues to be virtually no sign of incontinence; and as for the other "i-word", I consider myself fairly typical of any 74-year-old without particular regard to medical history. I work out for about an hour 3 days a week, and after being in full retirement for 6 years began doing 20 hours-per-week of part-time work 6 months ago. The work involves a lot of walking, giving added physical exercise. Apart from a minor history of a couple of basal cell skin spots, I have no other significant medical challenges and feel very blessed. Finally, I should mention that my surgeon (Dr. John Munoz) advised that my 10-year anniversary checkup in 2017--absent any surprises--will be my last; and that no more PSA tests or checkups will be needed(!).
Alex's e-mail address is: ynotmacao AT gmail.com (replace "AT" with "@")