Hello. I hope my story may help others, much as this site helped me during my initial stages.
I was diagnosed through a rising PSA at age 51 during a regular physical exam. I had no symptoms except a slightly diminished stream of urine compared to how it was in my youth. My annual physical showed a PSA of 3.6, which I was told was the high end of normal, and my Dr. wanted another test in 6 months. I thought, "Why bother, it's normal?", but went back anyway.
After 6 months, my PSA had risen to 4.2, enough to get me a referral to a Urologist. I hoped that the fact that I am an avid bicyclist my have just given me a touch of benign hypertrophy, due to my hours in the saddle. During my initial digital exam with the Urologist, he verbalized a "one in three" chance of having prostate cancer due to his palpation, and that got me a biopsy.
At that point, I joined the fellowship that no one wants to join, hearing the words "you have a significant amount of cancer in your prostate". 7 of 12 biopsies were positive, staged at T2B, with a Gleason score of 7 (3+4).
My initial Urologist wanted to start me on a course of hormone therapy on the way to a prostatectomy, since the cancer was still confined to the capsule, although he was also suggesting I consider the radiation route. At this point I went to another Urologist for a second opinion. At this point my PSA was up to 4.8. This second Dr. was much more to my liking, and really encouraged surgery, soon, as at this point it was still confined to the capsule, and my CT scan had not shown any spread at all. This was just when Robotic surgery was getting going, but he said, "You've gotta have a few dozen surgeries under your belt to do it well. Let the surgeons practice on the 80 year old guys. I'm learning it myself, but for you, since you're young, and the cancer is confined, I'd recommend an open radical prostatectomy". He said "I like to get in there, look around, feel around, and get it all".
I had my wife of 5 years at my side through all of this, and together, we decided to proceed. I think that the fact that we are both working in the medical field in a local ICU made us more comfortable and familiar with a surgical approach.
My surgery was June 29th, 2007. It was a complete success (so far) with my surgeon saying that the cancer had come within one millimeter of my nerve sheath on one side. He did have to remove one of my two nerves. As he said pre-surgery, however, "I'll give it a few months, and if you're incontinent, we can fix that, and if you're impotent, we can fix that, too". I was in the hospital for two nights, and was off work for eight weeks. By about four weeks, my minor incontinent dribbling ended, and after about six weeks, I was able to bring myself to orgasm, much to my surprise. Totally to my surprise, it felt much the same, and just as good.
My surgeon was a strong advocate of penile rehab, and sent me home with a prescription for Cialis, and a prescription for a penile pump (ErecAid) for both therapy and use with intercourse. The pump worked wonders, allowing penetration with orgasm at will. My 3, 6, 12, and 18 month PSA checks have all shown a level of < 0.03, or basically unmeasurable. Over the nearly two years since my surgery, I have remained continent, and my spontaneous erections have slowly gotten larger and harder, so that I am nearly back to my pre-surgery size. It will never be the same, but I am able to have a full and active sex life, owing in large part both to an amazing surgeon, and to a very loving and supportive spouse.
I consider myself a very fortunate man, and after nearly two years, feel able to share my story with everyone. Of note, I immediately shared my story with about everyone I know well, badgered many of my friends into getting their PSA checked, and two of them were positive, and both have since had prostatectomies. Interestingly, the one who had it done robotically had more difficulty then either myself, or my other friend who also had an open procedure.
I must also say that I took great strength from Lance Armstrong's book, "It's not about the bike". One great line that gave my strength leading up to and recovering from surgery was his response about his illness, "I wasn't sick. I was fighting death". I am an advocate for rapid and aggressive treatment, and would suggest surgery for any confined cancer. I was told that if radiation or hormones do not kill it off, those treatments basically turn your prostate to jello, which makes a clean surgical approach much more difficult.
If you have prostate cancer, get information, get a second opinion, and ACT! And have all your friends get tested!
It's been over two years since my surgery.
My PSA is still undetectable (< 0.02). My overall health remains excellent.
I have had no problem with incontinence since about 2 months after my surgery, and I am still having continuing improvement in my erections, being nearly back to my pre-surgery state.
I am very grateful for this web-site, and have mentored two people who have contacted me because of my story on YANA. I still advocate an early and aggressive treatment for anyone whose cancer is confined to the prostate. I feel that I am and shall remain cancer free.
I send my best wishes and full support to all others facing this diagnosis.
I'm three and three quarter years out from a radical prostatectomy. My PSA is below measurable (< 0.03 is the local (Oregon, USA) benchmark). I go back for my 4 year exam in May.
At my three year exam, my surgeon presented me with my PSA number saying "Do you know what this means"? I said "no", and he said, "that means you're going to die of something else!" I am cured, it seems.
In my mind, the surgical option was the one to choose because my cancer (Type IIB) [This refers to the clinical stage T2b at diagnosis] was confined to my prostate gland. A successful removal meant that the cancer would be GONE! That is the route I chose, even though my initial physician was leaning toward radiation.
The radiation option, in my mind, leads to a life of wondering if it was all killed, or if the cancer will ever come back. So, I had an open prostatectomy by a talented surgeon (Dr Alan Hay, if you're near Salem, Oregon), I was mildly incontinent for a short time, but not at all after about six weeks. The surgeon could save only one nerve, but in the long run, that hasn't made much difference.
My erections have been improving ever since the surgery. I could have sex unaided by pills or device after about three months, and it has done nothing but improve over the years. My spontaneous erections I'd rate as 80-90% as firm as the "old days", and the occasional use of Viagra, Cialis, etc improves them more. Sex with my beloved wife is fun, relaxed, and just as pleasurable as it ever was.
I have been a strong and vocal advocate for annual testing with all my friends, and remain a strong and vocal advocate for an aggressive treatment plan. If you are one diagnosed with a prostate cancer that is confined to the gland, and are at an age where you hope to live for another 30-40 years, I strongly recommend surgery as a cure! Chop the M*therf*cker OUT!
To any and all men reading this and wondering about a treatment choice, let me just add that my treatment outcome has been excellent!
Thank you. I have refered many people to this site, that was also so helpful to me in my early post-diagnosis days. You do a great service.
Hello. I am nearing the 5 year anniversary of my surgery. My PSA remains undetectable, and I have had minimal and decreasing side effects. To recap, my rising PSA and an unusual feel to my prostate during routine annual physical exams got me referral to a Urologist for a biopsy, that showed an aggressive T2B cancer (Gleason score 7 (3+4)). I researched my choices, got a second opinion, and since my cancer was still confined to the prostate capsule, chose the surgical option. I had an open Radical Prostatectomy on June 29th, 2007.
Five years later, I have never regretted my choice. I have had no problem at all with incontinence after the first 4 - 6 weeks after surgery. And while the surgeon was only able to save one nerve, my erections have improved steadily over the past 5 years. I am able to have penetrative sex with no pills or the penile pump that I used originally, and I have regained the ability to have long, sensual bouts of love making with very satisfying orgasms. In the beginning, for a year or two after surgery, it was more of a race to the finish because my erections would fade with time. This has passed. I still occasionally use the pump or pills to get the old "iron-hard" erections that I had as a younger man, and this allows a greater variety of positions. My wife and I both climax with sex, just as in my pre-surgical days. Sex is great, leaking urine is non-existent, and I know that I am and will remain prostate cancer free. The finality of my surgical choice gives me great peace of mind, as I know that the cancer is completely gone.
In that, I know I am lucky to have been in the hands of a very talented surgeon. I was opposed to the other methods, mostly because of the lack of finality. I have a good friend who went through the "seed" method, and who must still, and forever, continue to get PSA checks. I do not have to live with that wondering. I continue to badger my friends and acquaintances to get PSA tests, and do continue to advocate for aggressive options, especially for those whose cancer is found while it is still confined to the prostate. Educate yourself, and act!!
I also would like to once again thank this web site for giving me much needed information and hope during my initial phase of information gathering, and remain willing to answer any and all questions men in my former situation may have.
Five year check up finds me cancer free! Life is great, and my erections and ability are still gradually improving, to maybe 90% of pre-surgery hardness. No complaints, and no regrets about the path I chose. Once again, if your cancer is confined to the prostate itself, find an experienced surgeon and chop the motherfucker out!!!
A year has passed. I am now six years out from my surgery. I have had the honor of mentoring two strangers who contacted me after reading my story on this site, and would like to re-state that I am happy to answer anyone's questions about my experiences. I remain virtually unchanged; PSA undetectable, no incontinence, enjoying a fine and pleasurable sex life. My advice remains the same: Get a few medical opinions and ACT! And, again, I have never regretted my surgical choice. My best wishes to all who have had to, or are now dealing with this diagnosis. There is life after prostate cancer, and it can be just fine.
I hit my 7 year cancer free anniversary. My health remains excellent. I have no incontinence, and a wonderful sex life, with easy erections and great orgasms. (Mind you, as above, my erections never quite returned to the pre-surgery state, but they are 80%-90% of what I remember as normal, and that is well within the "I don't care about that" criteria, as I am alive and cancer free). I remain an staunch advocate of testing, and of early and vigorous treatment. I have never regretted my choice of a prostatectomy. My best wishes to all who have become my brothers in that club that no one wants to join. I am happy to discuss this with anyone seeking more details as to what to expect.
Hello, all. I have no real update, except to say that I am fine. 8 years since my surgery, I am clean (PSA<0.08), with no side effect of incontinence or impotence. My spontaneous erections remain about 80% of my pre-surgical status. Making love is both easy and fulfilling. I continue to be well supported by my loving wife. I still do encourage all men in my situation (rapidly rising PSA with cancer confined to the prostate capsule) to seriously consider a prostatectomy. I have never regretted my decision, and would do the same again if faced with the same diagnosis. I do fully understand that I have had a very fortunate outcome. I have mentored a dozen or so people who have contacted me through this site. I remain available to one and all for any questions. Best wishes to all of us.
Wow! 9 years out, still clean and healthy. My last PSA in March of 2016 still showed an "undetectable" level. I really have nothing new to add, except to say that I have never regretted my decision to have a radical prostatectomy. I remain alive, cancer free, active, and in love. I have no side effects, except a slightly less-than-rock-hard erections due to having only one nerve, but still have a wonderful and active sex life. I remain open to any and all conversations about my story, choices, and outcome. My best wishes and support to all of those men facing the same diagnosis that I was faced with, and good luck!!!
Hello to all those facing this f*cking disease. No news is good news. 10 years out, I'm clean and healthy. No real changes to my story, except I'll say once again that I have never regretted my decision for aggressive action against my cancer. I am still able to bike a few thousand miles a year, still an a skilled skiier, and still have a very pleasant sex life. Any diminishment in sexual performance ability these days compared to my youth is just as likely to be from being 61 years old. I have counseled and advised quite a few men who found me on this site, and offer my story or advice to anyone who is facing this diagnosis. It is NOT the end of you, or your world. Gather information. Get a second opinion, and ACT!! And, again, if the cancer is confined to the prostate, get a good surgeon (lots of experience) and chop the MF out!!!
Kenneth's e-mail address is: kwilson210 AT aol.com (replace "AT" with "@")