THERE WAS NO RESPONSE TO AN UPDATE REMINDER IN 2018 SO THERE IS NO UPDATE.
Following a routine annual PSA test in August of 2009, my GP advised me that my PSA had risen to 4.9. He referred me to a Urologist acceptable to my insurance company. On the chance that I might have prostatitis, I was placed on several courses of Bactrim antibiotic, lasting several months.
In January of 2010, I was then placed on a 30 day treatment of Cipro. Following the second dose, I was rushed to the hospital with a severe cardiac tachyarrhythmia - a reaction to the Cipro. My antibiotic was changed to Leviquin which I tolerated better but had to stop after two weeks because of increasing arrhythmias and anxiety. By now, my PSA had climbed to 5.9 and I was advised to have a biopsy.
In February of 2010 I had a biopsy performed. The biopsy showed a few irregular cells but not sufficient changes to diagnose as cancer. My Urologist wanted me to go back on Leviquin for another two months. He said I didn't have cancer but rather chronic prostatitis. Upon receiving a copy of the biopsy, my GP called and insisted that I change urologists and referred me to one that was considered one of the best in the area. Upon review of my history, he ordered an immediate 18 core biopsy which was performed May 3, 2010. Two cores found 5% involvement of cancer in the right lobe.
I had the nerve sparing Da Vinci robotic radical prostatectomy performed on June 15, 2010. I chose this method because of my young age. I understood that going the route of radiation would preclude a radical prostatectomy down the road if the cancer returned so I decided to risk the possible side effects of RP to keep my options open for rescue radiation later if the cancer becomes recurrent.
My PSA was at 6.1 just prior to the surgery. Post operative pathology was excellent with a Gleason score of 3x3=6, 5% involvement of the right lobe, negative margins, no seminal vesicle involvement, and fully contained in the capsule. Given the excellent pathology my surgeon elected to not remove any lymph nodes. My surgeon felt I had an excellent outcome and could expect a long life.
I had the usual fun with the catheter and drain but otherwise did well with recovery. I regained 100% continence within two weeks of the catheter removal and with the help of low dose Viagra was able to obtain a satisfactory erection sufficient for penetration. I was a happy camper. The nerve sparing worked great.
At 9 days following surgery, my PSA dropped to 0.7 - within a range my surgeon was comfortable with. At one month out, my PSA increased to 0.9. Thinking that the test was in error another test was taken a month later on August 9. It too came back at 0.9. Two tests taken a month apart with the same results can't be wrong. Alarmed by these results I had a long review of the pathology report with my surgeon. He feels my case is very unusual - the cancer was caught very early, the pathology was excellent - by all rights I should be at undetectable levels by now but I'm not. [The measurement of PSA so soon after surgery is a comparatively recent practice - previously the normal process was to wait at least three months to ensure that PSA circulating in the blood system from the surgery had all gone. It seems to that the issue of small amounts of prostate gland tissue remaining after surgery may be more common, especially after robotic assisted laparoscopic procedures, than is generally admitted. There was an interesting discussion on the subject on the YANA Forum in October of 2007]
My surgeon has offered the possibility that some small amount of prostate gland that can sometimes be left in with nerve sparing could be keeping my PSA levels high but cautiously warns that the cancer may have spread. I am somewhat comforted by the fact that the PSA level did not rise across the month between tests. I'm praying that with such an excellent pathology report that the PSA level is a matter of benign prostate cells left over from nerve sparing. So I'm hoping for the best but preparing mentally for a less favorable finding.
Yesterday, August 13, 2010, I was referred by my surgeon to an oncologist who specializes in prostate cancer to get this non-zero PSA issue sorted out. I expect to have an appointment in the next one or two weeks. I also had a contrast MRI of my pelvic area done yesterday. I'll know the results on Monday. I'll provide updates as this unfolds.
October 23, 2010 Hello fellow cancer warriors. Much has transpired since my initial story above. I've experienced the roller coaster ride that so many experience in the initial year's journey with prostate cancer.
In August, my surgeon referred me to an oncologist to look into the residual PSA following my RP. My oncologist directed me to change my diet to avoid all meats and dairy products, which I've followed faithfully for the past two months and continue to follow. I was also placed on Finasteride. The rationale, as explained to me, was benign prostate tissue will reduce PSA production by 40% to 50% over the course of 6 to twelve months whereas if the PSA is coming from cancerous cells, the PSA levels will remain unaffected. [This is an interesting view which seems to be at some odds with the general view that Finasteride reduces the size of a gland by reducing cells affected by Benign Prostate Hyperplasia.] So, as I understand it, this is a test to see if benign prostate tissue is a potential source of the PSA. I'm also taking several cancer antagonist herbs and supplements and immunity boosters for good measure and to keep in good health.
I had a follow up visit with my surgeon a few weeks ago. He again commented that he did indeed leave in some benign prostate tissue as part of the nerve sparing procedure. He said he was careful to biopsy the tissue to make sure it was cancer free before closing me up. I got my hands on the post-surgery pathology report which, as I was previously told, was excellent. Negative margins, no seminal vesicle invasion, Gleason score of 3+3 (6), 5% total volume involvement of the posterior right lobe with minor invasion into the left lobe, no extra-capsular extension. It was the kind of pathology report that any guy would want following RP. My surgeon did a blood draw for another PSA test at this last visit which will become a point of interest below.
I had my two month visit with my oncologist on Monday, who tested my DHT levels and did an in-office PSA test. He was alarmed that my PSA came back at .88 - a 3% drop from the 0.9 baseline established by my surgeon. His concern was that we should have seen at least a 20% to 25% reduction in the PSA from the Finasteride over the two months. He is now referring me to a radiologist for consultation about salvage radiation treatment (SRT) as he feels the failure to drop at least 20% was a positive indication of residual cancer.
Not happy with the direction I'm being pushed in, I called my surgeon and asked him for the results of my recent PSA test done in his lab on the last visit mentioned above. The result was a PSA drop from 0.9 to 0.7 - a 22%+ drop. This WAS the >20% drop in PSA my oncologist was expecting! So why the difference? My oncologist is comparing the baseline from one lab against a single sample from another lab expecting the calibration between both labs to be identical. Apparently they're not. [They are certainly not see PSA 101. It is truly shocking that anyone dealing with prostate cancer should not be aware of this. Ultra-sensitive tests too have an inbuilt inaccuracy and variance] Since my surgeon's lab established the baseline, the more reliable result would be the latest test from his lab (the 22% drop). I'll see my oncologist again in four weeks and I plan to raise this issue with him.
I sent my post-surgery specimen slides and paraffin blocks to John Hopkins, Baltimore, yesterday for a second opinion on the post-surgical pathology. I want to make sure nothing was missed in the original analysis. If the 2nd opinion comes back the same, then I feel I can safely conclude that there was no cancer left behind in the prostate tissue left in as part of the nerve sparing procedure. Anyone reading this who has had a Da Vinci nerve sparing procedure, please know that it is not uncommon for a small amount of prostate tissue to be left in order to spare the nerves. This is not well documented in literature. [It is also a fact that, since no two prostate glands are identical, it is sometimes not possible to remove all the gland with a laparoscopic procedure as the arms cannot reach it all.]
I can't help but feel I'm getting pocket manual medicine from my oncologist that so many with this disease experience. I'm expected to make a decision about SRT (Salvage Radiotherapy) in a vacuum of incomplete and conflicting information. As a medical researcher who understands that confounding information almost always leads to wrong conclusions, this isn't working for me. The information at hand is too nebulous for any rational decisions to be made. Under the conditions, SRT cannot be an informed consideration so it's off the table for now until I have supporting information to seriously consider it.
I hope all this doesn't come across as a rant. [It does not to me, but it does show very clearly the uncertainties that all men diagnosed with prostate cancer have to deal with, most of them without the backfrond in medical research that Hank has.] Rather it's a realization that so many of us must come to and address at a personal level. If you aren't getting enough information or the information presented to you is conflicting, be willing to challenge your doctors, insist on more conclusive tests, and coordinate a multidiscipline medical team that is willing to collaborate with you and each other. Make sure the team includes your GP, your surgeon, a nutritionist, possibly another pathologist as I'm doing, and your oncologist. Don't jump into high risk procedures because of fear you can't take a few weeks to coordinate or regroup your team. Don't hesitate to fire and replace a doctor who wants to work outside of a team approach. Use your surgeon as your most relied upon team member if possible. [There is a school of thought that the 'point man' in the team should be an oncologist, preferably one with prostate cancer experience, since his specialty is cancer, not surgery.] He is the one who literally knows you inside and out and feels the highest responsibility for seeing you reach a good outcome from his work.
I've set up new appointments with my GP, my surgeon, my oncologist, and I've pulled in a renowned pathologist from John Hopkins to confirm the pathology. I'm looking for a nutritionist with a focus in cancer diets. I've contacted all of my doctors and hospital and had them fax all of my case history and reports to me so I can proactively manage my care and make sure doctor "A" knows the results from doctor "B" and takes all information into consideration before pulling the trigger on risky procedures. [Among the recommendations in Surviving Prostate Cancer is to always obtain copies of every medical report and test which you undergo and to go through them thoroughly to make make sure you understand them.] I'm going to take the next few weeks to visit each doctor and ask them to resolve the informational conflicts and refer me to a more advanced center for more complete diagnostics. I figure it will take at least a month or two to get a more complete picture. I'll share where I'm at as soon as I have more to share.
To sum up details which have taken place in the past few months:
Current PSA is 0.7 down from 0.9
MRI dual contrasted scan for soft tumors: no tumors found.
Chest and abdominal CT scan: nothing unusual.
Free tumor cell test: nothing found.
DRE at surgeon's visit: Nothing unusual noted.
Zero velocity in PSA across 3 months prior to starting Finasteride. After starting finasteride, PSA dropped 22% as expected. I expect that when I stop taking Finasteride, the PSA will slowly climb back to the original baseline of 0.9.
No problems with incontinence
Sexual function A-OK but Finasteride has decreased my libido somewhat. I understand that is usually temporary.
Overall, I feel great and have plenty of energy.
Much has transpired since my last post. The pathology report (my second opinion) from John Hopkins came back pretty much identical to my original report - negative margins, no seminal vesicle invasion, Gleason score of 3+3 (6), 5% total volume involvement, no extra-capsular extension - all reassuring.
I came off of Finasteride four months ago and my PSA returned to its previous higher value, bouncing around 1.0 with a variance of as much as +/- 0.3, depending on the day. This was expected so I'm not overly concerned. I will remain off Finasteride going forward as its use was more diagnostic than therapeutic.
It has been nearly 11 months since my surgery and, ignoring the months I was on Finasteride with resulting lower PSA values, there has been no significant change from my immediate post surgery values and my current values. That too is reassuring.
As I mentioned in my previous update, I did regroup my surgeon, GP, Radiologist, and oncologist. With better communications and now quite a few PSA assays taken at monthly intervals, there is a consensus that my residual PSA is most likely due to benign prostate tissue. With that consensus, salvage radiation treatment (SRT), is no longer under consideration. I'm really glad I didn't leap into SRT with the incomplete information I had to evaluate at the time.
I've reached two milestones:
1) In my last visit with my surgeon and oncologist, who I always see a week apart, they collectively agreed that I can now fall back to a visit every four months. Yay!
2) The first year following PCa diagnosis and intervention can be a real emotional roller coaster ride but I feel I've reached a point where I can get off the coaster and resume doing what I was doing before PCa.
I'm continuing with an organic vegan diet. I also continue to take antioxidant supplements and immunity boosters under the advice of my oncologist. I rest more and have taken steps to reduce work related stress. I've also resumed an exercise regiment. I find I now have a lot of energy and have lost the weight I put on post RP. I feel healthy.
As a closing thought, I'm much better informed now and thus better equipped to understand the enemy (PCa). I've found that there is very little literature that deals with or even acknowledges my scenario so I've had to piecemeal relevant bits of literature and observations from my doctors to make sense of my somewhat unusual case - what my oncologist calls a case study of one. I know of two other cases like mine. Both had robotic surgery. Years after their RP, both are doing well despite residual PSA. Neither had SRT. From that knowledge, I am reassured that I've made the right choice.
It has been a while since my last update. Over the last year and a half, I've been following a course of a strict "anti-cancer" diet. My PSA remained fairly steady at around 1.2 for almost a year following my RP. Following the initiation of my diet, my PSA started to decline. Six months into the diet, the levels dropped from 1.2 to 0.62. My PSA dropped further in a test taken six months later (in January 2012). I just had my latest six month PSA test taken yesterday and have not received the results back. I'm hoping for a further drop in the levels.
To be fair, there are several theories held out by my surgeon and oncologist. The primary one being that I'm experiencing de-vasculation (the left in prostate tissue is starting to die off). Still, I believe the diet is helpful too.
So, I'm two years out from my RP and my PSA has been going in the right direction - down. Test time remains an anxious time for me but I'm not as anxious as I used to be. I'm getting accustomed to the routine and have re-focused on living again. I've started running again (four miles a day) and lost weight. I'm almost down to my "active" weight before the PCa diagnosis and surgery.
I finally got my PSA levels back from last week's test. As it was a stressful month prior to the most recent test, I was kind of expecting the results to be the same as last testing if not slightly elevated. Much to my surprise, my PSA levels have dropped from 0.5 to < 0.1. ng/ml.
My PSA history:
August 2009 - 4.9 ng/ml. (Biopsy - no PCa found)
May 2010 - 6.10 ng/ml. (PCa found in two cores / 18 core test)
June 15, 2010 - DaVinci Robotic Radical Prostatectomy (Gleason 3+3 / <5% / confined)
August 9, 2010 - 0.9 ng/ml.
October 10, 2010 - 0.7 ng/ml. (on Finasteride)
April 5, 2011 - 1.1 ng/ml. (off Finasteride)
--[Started Vegan diet with supplements in April of 2011, no meds or further treatment]--
August 1, 2011 - 0.63 ng/ml.
January 11, 2012 - 0.51 ng/ml.
July 10, 2012 - < 0.1 ng/ml. (It has taken 24 months since RP to get to this level).
I want to mention that the mentors on YANA have been a huge encouragement and resource for information, as has been Terry. I can honesty say that if it weren't for YANA, I would have been in a world of guessing. Thank you Terry and Greg! I'm pleased to be a mentor myself.
It has been some time since I updated my story. Here goes...
It has been 6-1/2 years since my surgery and I remain cancer free but still have a residual PSA.
Since the last update, my oncologist felt it would be fine to switch to an annual PSA test. For two years following my radical prostatectomy, my PSA remained relatively high. Curiously, at about two years out, it started dropping and has leveled off again. For the past four years it has been bouncing around between 0.1 and 0.4. My latest PSA test in August of 2016 came in at 0.1. There was one test that came back at 0.0 (undetectable) but the mathematician in me tells me that it was an outlier and probably due to using a different lab at the time.
As I alluded to above, my PSA bounces around a little but there is no pattern of it rising. One test might give a result of 0.3 and the next might give a result of 0.1. So long as there is no discernible pattern of continual rise, I've learned to be comfortable with the knowledge that it will bounce around a little.
In my visit with my oncologist last month, he commented that I no longer need to see him annually. Thus, going forward, I will simply monitor my PSA with my general practitioner. Should there be any significant rise, I'll pay a visit to my oncologist.
Hank's e-mail address is: lyleh AT sonoransys.com (replace "AT" with "@")
NOTE: Hank has not updated his story for more than 15 months, so you may not receive any response from him.
