In early December, 2005, my PSA had climbed from 1.9 ng/ml to 3.7 ng/ml in 14 months - my GP suggested I see a Urologist - the PSA Velocity was alarming. I made an appointment with the Urologist my GP recommended and underwent a biopsy on December 8, 2005. One week later, the Urologist called to tell me that I had PCa - he asked me to bring my Wife with me the following morning to discuss 'options'.
The following morning he explained the Gleason Grading System and that my PCa scored 3+3 for a Gleason 6. He also explained 'staging' and told me that my PCa staged at T2a.He then explained that my tumor was 'too close to the apex' to be operable without 'positive margins' and bladder incontinence - e.g. he didn't feel that he would be able to remove all the Cancer without leaving me incontinent. He injected me with my first 4-month shot of Lupron Depot to begin killing my testerone (to shrink my prostate and my tumor), he recommended Brachytherapy (Radioactive Seed Implants) and referred me to a Radiation Onocologist.
The Radiation Onocologist was very good - he very was personable, extremely informative and very relaxed - we never felt rushed with him. He also felt 'the margins were too positive' for surgery and that Brachytherapy was my best option.
I spent the next two months researching everything I could find on the subject and decided that since two Doctors (one Urologist and one Onocologist) felt Brachytherapy was my best option, I already had a 'second opinion'.
I scheduled the Brachytherapy for April 5, 2006 and went in on March 8, 2006 for an Ultrasound 'volume study' and a CT Scan - both as preparation for the Brachytherapy procedure. These procedures confirmed me as a viable candidate for Brachytherapy, so I went home to await the April 5th procedure.
The next day, March 9th, 2006, I went to a local Prostate Cancer Support Group - my first appearance at this group. The Support Group had a guest lecturer that day, Dr Randy Fagin (a young (35 yrs old) Urologist), who is one of the premier experts in the USA in a procedure called DaVinci Robotic Laparoscopic Prostatectomy.
Dr Fagin presented this procedure in a very clear and concise fashion and made it very plain that he had never seen in (he's performed over 500 DaVinci procedures) a case of 'localized Prostate Cancer' that presented 'margins too positive' to be considered candidates for the DaVinci procedure. I also met a couple of guys who Dr Fagin had operated on and they were ecstatic about him!
I went home and discussed this with my Wife and we both felt it would be best to make an appointment with Dr Fagin and discuss this further.
I called Dr Fagin (he accepts patients from all over the world) the next day (March 10th) and he met with us on March 15th - he reviewed all the medical records I had faxed from 3 doctors, performed a TransRectal UltraSound and assured us that he could remove my Prostate and was almost certain that he would see 'negative margins'. He also presented the statistics that he accumulates (they're available on his web page)from his DaVinci procedures and explained that his patients average 2 pads per day, 6 weeks after surgery and it improves from there - he has extremely low occurence of Bladder Incontinence and very good statistics in all other areas.
We elected to forego the Brachytherapy and opted to have the DaVinci procedure instead. Dr Fagin explained that he only 'spared nerves' when he was sure he could do so and still remove all the Cancer - we concurred with that - life is much more important than erectile function!
The procedure was scheduled for March 22nd, so I immediately drove to St David's hospital (Austin, TX) for 3 hours of pre-op paperwork and tests). On March 22nd, we drove to the Surgery Wing of St David's and I was immediately taken to a room where I changed into a gown, layed on a bed and had an IV administered. A few minutes later a Dr (Anesthesiologist) visited and explained her part in the procedure and what I could expect. A couple of minutes later one of her nurses came in and started the IV drip - with antibiotics and a sedative - they then wheeled me to the Operating Room. I vaguely remember them asking me to help them move me from the bed to the surgical table - but, that's all I recall until I woke up in recovery - I remember I was very happy in recovery and telling all sorts of bad jokes. I was moved to a room, where I rejoined my Wife and Daughter - they told me the DaVinci procedure took 2 hours and the recovery took an additional hour.
I remained in the hospital over night and went home the following day - less than 24 hours in the hospital! I wore a Foley Catheter for 6 days and, while it was not the most comfortable experience of my life, it was tolerable. On the day the catheter came out, Dr Fagin gave me the wonderful news that 'all margins were negative'!!! He also presented me with a copy of the pathologist's report - it turned out that my pre-op Gleason 6 (3+3) was really a Gleason 7 (4+3). Had I continued as planned with the Brachytherapy, my PCa would have been significanly undertreated!!!
The biggest problem I had was post-surgery bladder spasms - they felt as though someone was trying to electrocute me thru the tip of my penis - this, even though I was taking bladder spasm medication as part of my post-surgery drug regimen. I had to call the Dr at 10pm on a Sunday night and he called in Xanax (a sedative) to my Pharmacy. With the catheter, I had no need to get up at night and, with the Xanax, I slept for 7.5 hours that night!
Dr Fagin's 'full package' includes a Physical Therapist that specializes in relearning bladder control - it's been 3 weeks since my surgery and I'm wearing 4 pads per day now - I could probably do with 2, but the Lupron Depot hasn't yet worn off - I still have hot flashes and sweat a lot, so for comfort, I'm changing pads more than would normally be necessary.
I'm doing extremely well - back to walking 3 miles each morning - life is good!!!
I return to Dr Fagin on May 23, 2006 for my first post-surgery PSA - given the fact that my PCa was originally staged too low, I'm somewhat nervous about the PSA, but Dr Fagin assures me that my PSA will be nil...
In closing, I would like to make a few points:
- The ONLY way you can ever be sure that your PCa is staged correctly is to have your prostate removed - once it's removed it can be analyzed completely by a Pathologist - then you know whether the biopsy was correct and the treatment appropriate.
- ALWAYS get a second opinion from another surgeon - preferably from a surgeon who does a different procedure (e.g. one 'open prostatectomy' and one 'laparoscopic' (preferable Da Vinci)).
- If you have Brachytherapy and it doesn't eradicate the PCa, you CAN'T have additional Radiation - e.g. you've eliminated radiation as a backup plan.
- If you have radiation (including Brachytherapy) and it doesn't erradicate the PCa, it's highly unlikely that you will be able to have 'salvage surgery' - it's (I've been told) 'just too messy' because of the scarring caused by the radiation.
- Lupron Depot made our life miserable - extreme mood swings, extreme hot flashes and chills, extreme fatigue (probably from laying awake most of the night crying), shortness of breath, and on and on... I wouldn't wish this on anyone - BUT, I would take it again if it were my only option.
I hope my story helps someone else in their quest for the best way in dealing with their PCa.
I returned to my Urologist on May 26th for my 8-week PSA results and learned that my PSA was "undetectable" (< 0.1). Needless to say, we were ecstatic!
My current status is: I feel great!!! Much better than I have for over two years!!!
With the help of an excellent Physical Therapist (Kimberlee Sullivan, DPT), I have conquered my incontinence - I quit wearing pads 6-7 weeks after the catheter came out.
I finally feel like the single 4-month Lupron Depot shot is almost out of my system - the Lupron side-effects are almost completely gone - no hot flashes, no chills, no energy loss and especially no more cobwebs in my head - I can actually remember things again!!!
And with the help of the Erectaid Vacuum Pump System, things are starting to get back to normal again.
Life is great - I even have a fly fishing trip coming up next month - something that I wasn't sure I would ever have the energy for again. I hope everyone has a chance to experience this level of normalcy again!
Well, it's been 8 months since my surgery and 6 months since my last PSA check - I'm excited to say that my PSA came in at 0.000!
My recovery is complete: No incontinence and erections have returned! All this in spite of the side effects of the GERD and Blood Pressure drugs that I take.
I still have some residual emotional issues (mood swings, periodic depression, etc.) from the Lupron Depot therapy I had, prior to surgery. But, some of this could also be side-effects of the above drugs. I'm working on resolving these issues.
I can't say enough good things about Dr Fagin and Kimberlee Sullivan, DPT - the best surgeon/Urologist and Physical Therapist that anyone could possibly ask for!
I've mentored a number of people in the past 6 months and like to think that my experiences/insight have proven helpful!!
I FINALLY feel normal again! Even though I had my last PSA a couple of months ago and it came back 0.00 and the cancer was gone, I couldn't figure out why I felt such gloom and doom. No matter that I felt physically whole again, I could never seem to put the cancer behind me - I always felt as though my life had fallen completely apart.
I was seriously considering mental health counseling when my wife suggested my testosterone might be low - my Urologist confirmed it - the low threshold is 200 and mine was 240. If you've read my story, you know that I was originally given a 4-month shot of Lupron Depot to kill my testosterone in preparation for the Brachytherapy that I never had. Apparently I have never recovered from the Lupron Depot shot!
My urologist started me on AndroGel (testosterone replacement gel) and told me that it may take a while to see an improvement - within one week I felt very much like my old self - I'm no longer depressed and no longer feel like I can't cope. I hope sharing this helps someone else down the line.
I also wanted to mention that Mike Stucky of msnbc.com has a very good on-going series of articles about his own trip thru the PCa maze. You can read and/or listen to/download PodCasts of him reading from this link- he writes a new article every other Wednesday.
All the best to everyone!
My 6-month PSA check was excellent - it was < .001.
My PSA was checked in Feb and Aug of 2008 and was < 0.01 both times. I have since been changed to an annual PSA check. My next check is scheduled for Aug 2009.
I am doing just fine physically, having recovered completely from surgery! I do, however, still feel that I suffer residually from the effects to the Lupron Depot injection that I was given in December 2005. I have certain times (generally around the first of each month) when I am much more prone to mood swings and a form of depression. I have never completely returned to the positive outlook I had prior to diagnosis (e.g. my whole future ahead of me) and seem to be much more of a realist than a pessimist (e.g. I am a realist in that, since I was diagnosed in 2005, I know that my life is growing shorter everyday. I will be 60 in Feb 2009, I'm sure that realization is contributing as well). I would be very interested to hear from anyone else who has shared experiences (e.g. diagnosed, surgery, complete physical recovery, mood swings 3+ years post surgery), if there is anyone out there - I doubt I am unique... Perhaps we can help each other...
I have spoken with a social worker in the past and plan to contact another mental health professional in the near future - I will be fine.
I am still actively mentoring whenever contacted by someone through YANA. Most recently, I was contacted by Lalit R (from India), through my YANA story I was able to answer his questions. But, since it's been almost 4 years since I was diagnosed, I also contacted Fred C (a more recent diagnosee from Houston, TX) and Joyce M(She and Husband Frank - from Hawthorne, NV) and arranged for them to answer his questions relating to travel to Austin, TX for surgery by Dr Randy Fagin and about Randy Fagin in general. Last I heard Lalit was scheduled for surgery in early Nov (about now) but I haven't heard from him since.
Mentoring through YANA is among my most precious experiences. I love being asked to provide the best insights I can, be it from me personally or from others I have mentored in the past. Please continue to contact me, while my personal experiences are fading (time-wise), I am still willing and able to help! Helping you, helps me as well!
Annual PSA check came back less than .01 - so, all is good with me!
I'm doing great!!!
My PSA in August, 2010 was unchanged – still nil. My five year anniversary (since diagnosis) passed on December 18, 2010 and the doubts I've had since my diagnosis are gone as well. I no longer look at each minor pain as a potential life threatening event!
My outlook is bright and I expect to live a long and healthy life! It took me five years of emotional pain to get to this point, but I no longer dread my annual PSA and my PCa experiences are no longer vivid memories that lurk in the recesses of my mind! Life is good!!!
I'm sorry that I am no longer contacted as a mentor; helping others through the pain and confusion of their initial diagnosis was always extremely fulfilling to me – and I thank YANA for affording me that honor. But, five years post diagnosis , my experiences with the initial decision making process are simply too stale to be of significant use to anyone at this point.
Regardless, if I can be of assistance to anyone, please ask. All the best to everyone out there!!!
Alle de beste!!
My update is simple: PSA 8/11 < 0.01; Depression completely gone - I'm sure retiring in July 2011 helped level me out :-)
Doing great and loving life!!! Glad to see you are still active as well!!!
Alle de beste!!!
Annual (August) PSA undetectable - life is great!
Relocated to Las Vegas last fall. New Urologist - PSA still undetectable! Fly fishing Nevada, Utah, New Mexico and Colorado and loving life after prostate cancer!
PSA 0.01 - all is well!
Very sorry to lose Terry...
PSA still undetectable... Still loving life!!
I saw my urologist on Dec 18, 2015 and learned that my PSA is still < 0.01 (effectively NIL)!!
I reminded him I was 10 years post-PCa-diagnosis and asked what sort of impact PCa would now have on my life expectancy. His reply, "None. As far as I'm concerned, you are cured."
I will continue with annual PSA checks, via my family doctor.
Interestingly, I was diagnosed on Dec 18, 2005 and "cured" on Dec 18, 2015.
All is good!!
Still going strong... No problems.
Happy New Year!
11 years and still undetectable!! Doing great!!
Danny's e-mail address is: pngunme AT gmail.com (replace "AT" with "@")