My diagnosis in September 2007 was not a total shock, albeit unwelcome. I had undergone two biopsies in 1999 because my PSA rose to 4.5 ng/ml from 1.1 ng/ml at my prior physical exam. My GP referred me to a urologist for follow up. The first six-core biopsy in March 99 came back as low-grade neoplasia, and a second biopsy of another six cores in May 99 was benign. A follow up PSA was back down to 1.1 ng/ml in June 99, but I began to visit the urologist for routine exams in December of each year.
My PSA began to gradually increase, and was at 1.7 ng/ml (29% free) at my December 06 exam. Despite a normal DRE the urologist was sufficiently concerned to suggest a mid-year PSA, which in July 07 came in at 2.8 ng/ml (18% free). Another PSA in August 07 came back at 3.4 ng/ml, and biopsy in September 07 was positive in 6 of 12 cores, all on the left side. Gleason was 8 and 9 and stage is considered T1c or T2.
I consulted with Dr. Herbert Lepor, a pre-eminent prostate surgeon and department head at NYU Medical Center, who feels a cure is achievable with either surgery alone or surgery and radiation. He also suggested that I decide sooner rather than later because of the aggressiveness of a Gleason 9 tumor. I have scheduled a tentative RP for October 22, and I am now undergoing imaging exams, including bone and abdominal CT, although both Dr. Lepor and my urologist believe they will not show anything. I am scheduled to meet with a radiation oncologist on Thursday October 4 to get his take, but in my heart I believe that if radiation as initial therapy fails then surgery is no longer a viable option, whereas radiation remains an option if surgery fails. Both the urologist and Dr. Lepor agree.
I know the conventional wisdom is to take some time with a treatment decision, but psychologically I need to move ahead. Unless I can be convinced otherwise by either my urologist or radiation oncologist I will most likely move forward with Dr. Lepor. He is supposedly the innovator of nerve-sparing surgery and trained with Dr. Walsh at Hopkins, does over 300 of these procedures annually and has written scads of articles, so I do have confidence in him. He has pioneered removal of the catheter within one week and has a photo album of his patients at three weeks post-op, back to pretty much normal activities.
I hope to have a better handle on how I will proceed by the end of next week, once I get back the imaging results, meet with the radiation oncologist, and speak with my urologist.
More to come!
My RP is scheduled for Monday, October 29. Given the high Gleason of 9 even the radiation oncologist felt that surgery is my best option, so I have put myself in the hands of Dr. Herb Lepor, head of the NYU Medical Center urology department.
I'm doing all of the prep, including Kegels, autologous blood donations, iron and colace pills, and my usual exercise routines to keep strong. The nurse practioner also recommended eating well and avoiding any type of restricted diet. I'm hoping for an uneventful recovery from surgery and a cure to the disease.
Wish me well!!
I had my surgery on Monday, 10/29 at NYU Medical Center with Dr. Herb Lepor and his staff. All I can say is that they are remarkable, and anyone considering this surgery with access to Dr. Lepor ought to at least consult with him. He believes the surgery went as well as he could have hoped, and depending upon the pathology report I may not need follow up treatment.
The pain has been minimal and entirely tolerable, and the catheter is completely bearable. I see him on Tuesday, 11/6 for catheter removal (he believes in one week being adequate) and pathology review. More then.
I visited with the doctor on Tuesday, November 6, and it was mostly good news.
Pathology revealed negative nodes, margins and seminal vesicles, and Gleason 4+3=7 rather than 9 on the biopsy. The less than good news was extra prostatic extension, which results in staging T3a, but the negative margins could mean that the surgery removed all of the cancer.
No follow up treatment for now, but my first hypersensitive PSA is scheduled for February 2008, so that will determine the next step.
I did have a relatively minor setback. The catheter was removed at the 11/6 visit but later on that night I went into urinary retention (an unbelievable urge to pee but nothing comes out), so we had to return to the emergency room at NYU Medical Center at 3AM (about an hour's drive) to have it reinserted. I expected the reinsertion to be tough, but the chief urological resident took care of it quickly and painlessly. I'm going back on Monday 11/12 to have it removed once again, hopefully without incident.
The cystourethrogram shows complete healing of the anastomosis, so the doctor believes that the urinary retention was because of urethral swelling rather than blockage of some sort. I feel strong and healthy, I'm walking at least a couple of miles each day, and once the catheter is finally gone I'm cleared to resume my full lifestyle. I feel well and I'm hopeful for the future.
Today was my three month post-surgical follow up, and it was all good news. My PSA is undetectable, I'm 95%+ continent, and I've begun to experience an occasional soft erection without Viagra, albeit not enough for intercourse, but nonetheless a start. My surgeon is thrilled with my progress.
For all of you debating a treatment choice please be sure to search out the most experienced provider you can find. It makes all the difference. Dr. Herb Lepor at NYU Medical Center is the man!
My next visit is May, at which time I will post again.
I had my six-month post surgical follow-up on Tuesday, May 6, and the news was all good. PSA continues undetectable, urinary control is 95% and ED is abating without medication. While the surgeon would not use the word "cured" he did say that he would be surprised if anything further developed. Considering how I presented to him following my biopsy, with Gleason 8 and 9 scores, I am of course thrilled at this outcome.
My diet includes daily green tea and soy milk (vanilla flavored, tasty and low carbs)and tofu at least once or twice a week, primarily in Thai food which I enjoy.
My next appointment is in November for my one-year assessment, so for now I'm going to relax and enjoy the summer.
Keep optimistic, friends, because this disease can be managed and overcome. Good health to all of you.
It's been two years since my diagnosis and I fortunately remain cancer free as of my latest PSA in April 2009. I'm scheduled for follow up in November, which I of course am hopeful will continue uneventful. I don't know if I'm cured or what the future holds but I am certainly grateful to be where I am. That's the good news.
The not so good is really not terrible, all things considered. My surgery involved removal of one nerve bundle and, as a consequence, impotence and incontinence are my ongoing partners. Despite treatment with medications and the pump I am unable to maintain an erection suitable for intercourse. The only thing that works is trimix injections which are a mixed blessing. I'm able to achieve a sufficient erection but it does require advance preparation and there were some adventures before I arrived at the correct dosage. Nonetheless I would recommend it to those of you who haven't tried it and like me cannot achieve an erection otherwise. It is totally painless and works pretty fast, usually within 15 minutes.
My other companion is moderate incontinence. I did the Kegels post surgery and got myself about 80% back to normal but unfortunately the leaking and dripping never fully stopped, so I do need pads to prevent embarrassment. It's particularly troublesome when I have a couple of drinks, so for those occasions I protect myself with an absorbent undergarment - i.e., an adult diaper. I'd rather that than wet pants in public. I've also discovered a neat contraption called an ActiCuf which you can think of as a condom with an absorbent interior. It holds with a light plastic clamp and is very useful under a swimsuit or shorts. It really is only for light incontinence and cannot be worn while sleeping because it does need to be repositioned every couple of hours.
I know all of this sounds grissly but metastatic PC is a lot worse, and if this is my price for avoiding that outcome I'm happy to pay it. I've returned to a satisfying consulting practice that keeps me sufficiently occupied, I relish seeing my 20-year old son mature and develop into a budding physician (and honors student at Fordham University), and I'm blessed to have more time with my gift from heaven who is my wife. All in all, I'm totally satisfied with my outcome so far and would be thrilled if it simply continues as is.
On November 9 I visited my surgeon for a three year followup; PSA continues undetectable. While he regards me as a high risk patient because my Gleason Score on biopsy was mostly 8 he had some positive news. According to his research if a high risk patient maintains an undetectable PSA for three years post-surgery then the longer term prognosis is essentially no different from a low risk patient. This doesn't mean that my PSA will never rise or I'll never have a future issue, but it does mean that I can discontinue my six month PSA (always stressful). Probably I couldn't have had much better news.
The other update is that since December 2009 I have been consulting with a naturopath who is a part of the practice at NYU Urology Associates, where I am treated. He specializes in prostate disease and I was encouraged to visit with him by Dr. Lepor, my urologist. This has made a huge difference in my life. I am largely (about 75%) following his dietary recommendations; I am taking various supplements, including modified citrus pectin and a specially formulated anti-prostate cancer packet, plus Vitamin D3; and I recently started doing Pilates training at his urging, which has improved my strength, flexibility, balance and stamina.
In all, if three years ago following my diagnosis I knew how well I would feel today, I would not have believed it. Yes, issues continue with mild incontinence, but I have pretty much gotten my erection back to where it was, and I am optimistic.
I'll be happy to give more details on anything discussed above for anyone who wants.
As of my most recent examination in November 2011 (four years post surgery) my PSA remains undetectable. The most significant long term effect is some stress incontinence but I am fully in control and only use a pad to deal with occasional dripping. I am able to get an erection sufficient for intercourse, albeit it is difficult to maintain (probably more age related as I had this issue prior to surgery). I do not use any medication such as Viagra or Cialis because of side effects, plus it really doesn't work well for me. I had used penile injections for a while but no longer. In all, I am exceptionally pleased with where I am, considering the initial biopsy showed Gleason 8 and 9 (reduced to Gleason 7 post surgery).
I just had my five-year post surgical PSA, and it remains undetectable. I am cancer free after a battle which started with Gleasons of 8-9 on biopsy, but reduced to 7 after surgery. I required no follow up treatment, although I have been consulting with a naturopath in my urologist's practice for advice on diet, exercise and supplementation. I have minimal residual stress related incontinence and relatively full sexual function for a man approaching 70, but the important issue for me is that my prognosis according to Dr. Herbert Lepor, my surgeon, is no different from a low risk patient. For those of you newly diagnosed as higher risk patients take heart; choose your medical provider wisely and have faith. You can deal with this!
Just got the results of my six year PSA, and it remains <0.02, or undetectable. For someone who went into surgery with Gleason 8/9 (corrected to 7 at surgery), this is ongoing great news. You can beat this; never lose hope. Thank you Dr. Herb Lepor!
As of October 2014 my PSA remains undetectable. Achieving a cure to cancer was my primary objective going into surgery in October 2007 at age 64, and I am thrilled to be cancer free seven years later, especially since my Gleason score was 8-9 at biopsy. I was told by a radiation oncologist that surgery was my only real hope, and he seems to have been correct.
The downside is that the cancer had gone into the nerves on the left side so the surgery was pretty extensive. I have tried almost all methods to restore some level of potency, including pills, injections and a pump, but I really can't get an erection sufficient for intercourse. Incontinence is not a major problem and is limited to only occasional leakage but I sleep through the night and have little problem controlling my need to urinate.
In all, given where I was at diagnosis, I'm totally pleased with my condition.
At my routine physical in June 2015 my internist noted a slight increase in PSA to 0.03 from 0.01 a year earlier and suggested I confer with my surgeon, Dr. Lepor. Upon checking my post surgery pathology report, which showed clean margins, Dr. Lepor was not overly concerned and believes this to not be clinically significant. His protocol is to do nothing until PSA reaches 0.2, at which time he would likely recommend a course of radiation. I'll be checking PSA at six month intervals (next is February) so we'll see where all this goes, but I'm in Florida for the winter, away from the Northeast cold, feeling great, and enjoying life. Ongoing PSA testing and urology visits are, of course, anxiety provoking, albeit necessary to catch and treat anything early on. Next Lepor visit is August, at which time I'll update further.
It's ten years since my diagnosis and I remain cancer free, with my latest PSA <.1. I'm considering testosterone supplementation to bring my T level to low normal, as per the advice of Dr. Lepor, my surgeon. This had previously been suggested but I refused fearing that it could raise PSA, but I am also dealing with an autoimmune disease that affects my leg muscles, and the hope is that raising T level may increase muscle mass and strength. I'm consulting with a specialist in this area in the next couple of weeks and I'll post a follow up as appropriate. For those new to this board please keep your spirits up despite the devastating nature of this diagnosis. With a Gleason of 8-9 at biopsy I never thought I'd get this far, but here I am, retired and living my winters by the beach in Florida. Just get the best advice available and listen to what the experienced providers tell you. Best to all.
Herb's e-mail address is: firstname.lastname@example.org