Prostate cancer runs in my family. My dad died from it. My brother had his prostate removed via Robotic procedure in 2007. Currently his PSA is undetectable. So I was very active in monitoring my PSA from age 38 on. There is one wrinkle in my story that I haven't read anywhere else. I started taking propecia and then Avodart for hair loss reasons at about age 38. My dermatologist told me that these medications have an effect on one's PSA, artificially lowering it by half. So, my PSA was monitored yearly as a result of my being on these medications. Good thing. PSA remained undetectable until about age 47. It started going up slowly. Still, all good, no problem. During a visit to my dermatologist in 2011, he told me that my PSA was 2.0, but actually 4.0 because of the Avodart and advised me to see a urologist, which I did.
The urologist felt nothing abnormal after rectal exam but still recommended a biopsy given my family history. So, in June 2011, biopsy it was. some points about the biopsy. Few things instill fear in a man's heart more than the thought of a probe being stuck up your rectum with that same probe deploying needles through the wall of your rectum into your private area. Don't be alarmed! It isn't that bad. The doctor administers lidocaine into the prostate and it doesn't hurt. However, with every sample taken (12 core samples in this case) the unit makes a audible click and with that click you do feel a thumping inside a part of your body where no instrument has ever gone before.
Another thing that should be mentioned about the prostate biopsy--there will be some noticeable blood in your urine for a few days and you will be shocked to see blood in your semen for a couple of weeks with the blood getting darker as time progresses. Again, don't be alarmed.
Biopsy came back negative. But the urologist wanted my PSA taken again in 6 months.
Had blood drawn in Dec 2011. And a day after my birthday in January, I got the call. "your PSA has jumped up to 4.5. (actually 9.0 when one considers the Avodart) I would like you to have an MRI and another biopsy." So after an MRI, a spot was located on the front right portion of the prostate. It was actually bulging out. This gave the urologist a targeted area to insert the needles for the forthcoming biopsy. Then, on January 30th I heard the words, "cancer".
We spole about possible treatments and my family history and so on. I immersed myself in everything I could regarding PCa. I like to research things and boy did I go to town on this one.
Since my urologist was part of the NYU Langone Medical Center/Smilow Prostate Cancer Center, he recommended that I consult with Dr. Herbert Lepor, a pre-eminent surgeon who specializes in open radical prostatectomy. With over 4,000 operations under his belt, Dr. Lepor is the dude.
My wife and I met with Dr. Lepor who went over quite thoroughly all the side effects and everything that one could expect with such an operation. A side note: Herb Dicker, another YANA mentor had his radical prostatectomy done by Dr. Lepor and Mr. Dicker recommended that no matter which treatment you choose, you should consult with Dr. Lepor. I am in violent agreement. Dr. Lepor is indeed "the man".
So after careful consideration, (family history) and some soul searching, I decided that I wanted the cancer out of me and opted for open radical prostatectomy with Dr. Lepor. Why open isntaed of robotic. I decided that although robotic is the vogue in removing prostates these days, I bought into the fact that with the open procedure, the doctor and get in there and see, and more more importantly feel the prostate and surrounding tissue. A personal choice, but hey this is my life. Also, the words of my urologist kept ringing through my head "don't choose a technique, choose a surgeon". I have to impress upon you those words. No matter which procedure you choose, go with experience and skill first. You won't regret it. So my surgery was scheduled for March 11th with Dr. Lepor at NYU.
Pre surgical involved a variety of tests, non invasive thank God! I also started taking an iron supplement to prepare for the surgery,
Day of surgery: I wake up in recovery. My wife said that Dr. Lepor spoke to her after the surgery and he was ecstatic. "Couldn't have gone better, etc." Also he noted, my prostate had shrunken because of the Avodart.
Not much pain, just by the incision, which is 4 inches in length running vertically from the pubic bone up. 9 months later, hardly noticeable and will fade even more with time. As my wife says, "who's going to see it?"
I was up and walking the same day. Went home the next day with catheter in. Scheduled to have it removed 1 week later. Dr. Lepor believes it doesn't have to stay in any longer. BTW, the catheter, for me, wasn't that bad, just have to be very careful and put some neosporin on the opening of the penis to keep from getting irritated due to friction.
I was walking up and down stairs the following day, walking the neighborhood 3 days later and walked a mile 6 days later. Walking was strongly recommended by Dr. Lepor's office.
Today's the day the catheter comes out! And....it's out! No leakage, no incontinence, although I brought several pads with me and wore one home. Got home, and miracle of miracles, no leakage. And that's pretty much the way it has been for 9 months. Some stress incontinence, but if you brace yourself before you sneeze or before you lift something heavy, no problem. And as of late, I haven't even had to brace. Not a drop. Which brings me to an exercise that you need to do in preparation for your post-prostatectomy life--kegel exercises. Is started them before the op and after. They have helped immensely.
My pathology revealed a Gleason of 4/3 with no seminal vesicle invasion. But...there WAS extra-capsular extension, meaning the cancer was outside the prostate. Surgical margins were negative though, so Dr. Lepor said that the cancer was outside by not really outside as he removed enough tissue for the margins to be negative. Again, I was very happy that I decided to have the surgery as only a pathology could reveal that the cancer was actually forming outside the prosthetic capsule.
A three month checkup and PSA was undetectable!
A sixth month checkup and PSA was undetectable!
My next PSA is scheduled for April 2013 which will mark a year and a month since my op.
A word about sex and erections and all that. First, let me say that in my pre op life I never failed to achieve on command no matter what. Post op, quite different so far. I was warned. I have been on a regimen of Cialis/Viagra and Bimex penile injections (which aren't as grisly as they sound. You will get a stiffie in minutes). But my ability so far to achieve a natural erection has been touch and go. And certainly nothing to achieve penetration without help from meds. But, it's still early and Dr. Lepor says that I'm ahead of schedule. I've even had nocturnal erections and have woken up with a full boner!
I can't say enough about Dr. Lepor and his group. They are incredibly good at what they do and they are also kind and compassionate. I couldn't have made a better choice. I am also seeing an ED specialist and a naturopathic doctor in the group who is advising me on nutrition and supplements of which I take many.
This disease is something that can be handled and should be addressed head on. Thank goodness for Dr. Lepor. The fact that my wife is a saint has helped immensely also. Onward and upward!
Another thing that I feel has helped me is spinning class. I have been spinning for 5 months now and somehow, it has helped me exercise the muscles that control my urinating. Besides the obvious cardio benefits, this is something that I think all post-pros ops should look into. I haven't done a Kegel in months.
Okay, had my one year since surgery in April (technically 13 mo.s) PSA and it was less than 0.01! Yes! I am very grateful to Dr. Lepor and his team. Since the RP operation last year I have re-assessed how I eat, getting most of my food from plant sources and have even gone on and off of gluten, which is not that good for you. It is very hard to keep Gluten free, as I, like many others have grown up eating good bread and pizza, etc. I am also on a daily regimen of supplements including Zyflamend, Vitamin E gamma, Omega 3 capsules, vitamin D, Green Tea capsules, turmeric and a supplement called Broccoprotect. I usually take the supplements with a home-made shake consisting of crushed ice, water, almond mild, protein powder, either kiwis, strawberries, banana, oranges or any other type of fruit that can be run through a blender. I also add a tablespoon of Modified Citrus Pectin (a detoxifier) and a teaspoon of POM Pomegranate extract. The shakes are quite tasty and filling and keep me full till lunch. I make extra so my wife can enjoy them as well. One side-effect that has stayed with me is ED.I am on Cialis, (anywhere from 5 mg to 20mg a day) and have been able to obtain erections that are barely suitable for penetration. However, size and rigidity are nowhere near close to the way it was before surgery. My Surgeon and ED doctor have told me that I am right on schedule. It's hard to be patient with this process as I, like so many men, identify their manhood with the ability to achieve a nice woody on command. But I am progressing and am getting by barely without having to take the Bimex injections in order to have intercourse. I don't think sex will ever truly be the same, but I'd rather have that cancer out of me and peeing well and sort of having sex again. It's important to keep blood flowing to the penis. So if you feel like masturbating and are able to, do it as often as you can. Within reason of course. Speaking of erections and all, I was beginning to drip urine during erections, a condition called climacturia. My ED doctor has me begin the Kegel exercises again and it has helped tremendously. (So much for my spinning classes theory). Anyway, a lot to be grateful for!
Had my 6 mo. PSA and consultation. And hurray! PSA is <0.02 which is undetectable! I have to keep these 6 mos. PSA's up until 5 years post treatment. If, god willing, my PSA is still undetectable at that point, then it is once yearly. Every Dr. is different in terms of their post-PSA checkups.
Still taking my daily supplements. ED is getting better with daily Cialis and recently I was able to obtain penetration without the use of the needle (BiMix injection). I thought climacturia (urine leakage during sex) was behind me due to the Kegel exercises I had resumed, but it occurred this last time after not happening for a while. Have to figure that one out with Dr. Lepor and his team.
Otherwise, I am very grateful and am improving every day. Life is good. :)
Had PSA/Doctor's visit on April 8th, PSA is 0.02 undetectable! Yay! Still some mild ED no incontinence. Keeping up with supplements and pomegranate and back to the gym!
Well, it's been 2-1/2 years and my latest PSA is less than 0.02! Undetectable. I'm always nervous before the PSA test/results. But thank God, all is well. My little friend ED still follows me and my erections take a while to become serviceable. To expedite things, I am trying Trimix gel: it allows you to inject the medicine into the tip of the penis/end of the urethra via a syringe with a soft, blunt tip that fits against the tip of the penis. It eliminates the "stick" of the needle because I hate that needle going into my penis. I'll keep you all posted on the results. Still taking my supplements, my exercise regime has taken a setback due to a torn meniscus, but I got that fixed. Only upward from here!
6-month PSA is undetectable! Yay! Dr. Lepor told me that even though I had extracapsular extension, an undetectable PSA after 3 years puts me in the same group as those who had tumors contained within the capsule. Great! Some mild ED, but daily dose of Cialis helps greatly!
So, it's been a while since I last updated. PSA had been <.002 for three years and then it started creeping up. First, to 0.034 for two consecutive tests. Then 0.083 last November 2016. Back down to .081 in February 2017 and up to 0.088. I have been making lifestyle changes since (weight loss, additional supplements, etc.) and am now getting PSA every three months. Dr. Lepor said that it was still too early to recommend salvage therapy as the rise in PSA could be from things other than recurrence like benign prostate tissue growth. So, we wait, and my fingernails continue to suffer for it.
Hey gang. So I received my 3 month PSA test score yesterday and it is <0.1. Interestingly, Dr. Lepor used the standard PSA test instead of ultra-sensitive, maybe because he knows that I've been very nervous about the fluctuations and increases the past two years. However, it's under 0.1. It was 0.089 as of May 2017, 0.077 as of Feb 2017, 0.081 November 2016, 0.034 August 2015, and 0.034 May 2015. As I said, it's under 0.1 (maybe it went up or down from 0.089, who knows!) The thing is, there are differing studies and opinions as to when biochemical recurrence occurs. A recent study claims that a rising PSA score from 0.01 to 0.03 is predictive of recurrence. Others hold true to 0.2. Who do I believe? I am scheduling an appointment with Dr. Anna Ferrari of Rutgers University. She is a hematologist and oncologist and is a prominent figure in the field. I would like a different perspective on the progression of the disease and am anxious to hear what she has to say. Otherwise, continent, erections are back in business, and I'm 5-1/2 years removed from my surgery. Thank you, Dr. Lepor!
P's e-mail address is: patrickcarella AT gmail.com (replace "AT" with "@")