THERE WAS NO RESPONSE TO AN UPDATE REMINDER IN 2016 SO THERE IS NO UPDATE.

I am an otherwise healthy 57 year old. I had a routine physical about a month ago and my PSA level had increased from 2.6 to 4.1 in about 16 months. This was enough of an increase to warrant a referral to a urologist, who performed a most unpleasant biopsy, and confirmed that I have cancer. This caught me completely off guard. My off always says that I am too negative in my outlook about things, while I prefer to think of myself as a "hope for the best but plan for the worst" type of person.

At any rate, I was convinced that the biopsy results would be negative was completely surprised at the diagnosis. It has only been a few days, so I am still mulling over my first decision of treatment or Active Surveillance. Getting my head around the notion of having cancer growing inside me and not trying to get rid of it will be a difficult decision for me to make, but it is where I am leaning right now. As we get more input and make a final decision on immediate plans, I will update my journey.

After consulting with four doctors locally and several others through e-mail, I decided to begin Active Surveillance.

The recommendations were less than unanimous with "have surgery now" being the second place vote getter (and the only other recommendation I received). I am not sure that I am an ideal candidate for this because I still have concerns about the ability to track my cancer well enough to make a curative treatment decision at the right time. My primary care doctor, who knows me well and was emphatically in the surgery camp, doesn't think I will last a year on AS, and my doctor refers to it as Active Worrying. [There are few studies on the 'worry' aspect of AS, but one of the better ones demonstarted that there was no difference in 'worry' between men on AS and men who chose surgery and had to watch their PSA for the rest of their lives. If men were worriers, they worried.]

I will receive the results of my first post-diagnosis PSA test on Jan. 31 and will re-evaluate my decision then.

After a November, 2010 diagnosis and a PSA of 4.1, I was, to be completely honest, expecting a similar number at this four month follow up on February 1, 2011. The jump to 5.7 was a shocker. I realize that it is not a huge number, but it represents a 39% increase in four months, which by most any measure is not the best of trends. [Whilst concern at an 'increase' of this magnitude is understandable it may be worth reviewing the data in the 28 Day Experiment which saw an increase from 4.5 to 6.0 in three days.]

My doctor and I discussed it and he feels as confident as anyone can feel about any of this that the cancer is still small and contained. He agreed that a similar increase in four months, and AS should be out the window.

So now I sit and wait again. And drink green tea and pomegranate juice and eat better.

I received my latest PSA results today, which showed another increase (to 6.4 ng/ml). After much discussion with my wife, much helpful reading on this site and some good discussion with both my urologist and internist, I have decided to proceed with RALP in about six weeks.

I understand there are no absolutes with any PCa treatment decision, but I feel comfortable and a bit relieved that I am doing something about this.

I will update with post-surgery results.

I had a RALP procedure performed at FAHC in Burlington, Vermont in July of 2011. The day of surgery, the nurses preparing me were concerned that my pulse rate was too low (40). My pulse rate is low anyway, normally in the mid-50s, but I tried to explain to them that this was the most relaxed I had been since my diagnosis and there was no need for concern. The surgeon got it and we proceded.

The surgery was a success, I was home in 48 hours, had my catheter removed in 5 weeks and was back to work a week later. Continence issues were non-existent, thanks in part to my surgeon referring me to a PT office that specializes in building up the specific pelvic muscles required for compensating prior to surgery.

At almost 12 months post surgery, my PSA levels are undetectible and the only complication I have is erectile function returning slower than I would like. This is improving slowly, but I am happy with the overall result and with having made the decision to have the surgery in the first place. This is obviously not the right choice for everyone, but at age 58 and my PSA doubling time getting shorter, it was the right decision for me.

Another note that I should have included in the previous update. The pathology on my prostate upgraded the Gleason score to 7 (3+4) from the original estimate of 6.

I am now 2 years post surgery and fortunately have no long term side effects. I was aware at the time of the decision and continue to be aware that the outcome could have been different in terms of side effects. But the process by which I arrived at my decision continues to be one which I would use again while at the same time realizing that many other people with the exact same circumstances might have reached a different conclusion on the way to proceed for themselves.

The one thought that I had that led me to the decision that I made was that given the increase in doubling rate of my PSA scores, even though they were relatively low my many standards on this board, at some exact point in time the tumor could penetrate the prostate wall and the likelihood of cancer spreading to other parts would increase. As I have mentioned earlier I tend to be a worrier, although I like to think of it as hope for the best and plan for the worst, and given my exact set of circumstances I still believe that this was the best decision for me.

As an update to my progress, the good news is that my PSA is still undetectable. The less than good news is that impotence did not improve as hoped for. I first tried a vacuum tube and later injections. The vacuum tube did not work for me at all and the tri-mix injections worked initially but gradually stopped. I had an inflatable device implanted in April, 2014 and am fairly happy with the results so far. Knowing what I know now I would still do it again. I am happy to answer any questions anyone might have about this procedure.

John's e-mail address is: jhayesvt AT gmail.com (replace "AT" with "@")

NOTE: John has not updated his story for more than 15 months, so you may not receive any response from him.