I was diagnosed in April 2010. My gastroenterologist noticed a bump on my prostate while performing a colonoscopy and advised me to have it looked at. After visiting the urologist and getting a 12 core biopsy I was shocked to be told that I had a single focus of carcinoma measuring 3mm / approx 20% of total core volume in the left lateral base and 4mm / 25% of total core volume in the left lateral mid. All the rest of the 10 cores were fine.

My urologist recommended surgery but insisted that I consult with a radiation oncologist first for another opinion. Of course the radiation oncologist recommended radiation so I went to a regular oncologist for his opinion. At this point I was arguing for "Watchful Waiting" but his advice was to get surgery.

My PSA level is currently 0.79 ng/ml and has constantly been between 0.59 and 1.09 for the past five years. My Free PSA is 0.09 ng/ml. The Free/Total PSA Ratio is 11.39%

I thought that with such a low PSA I could continue to watch this for a while and if it started to rise I still would have time to take more aggressive action but my doctors all feel that my PSA is not a good indicator and given my age it is very fool hardy not to take the most aggressive action possible. [It has never been clear to me why there is such an emphasis on age in the decision making procedure with a diagnosis like Ned's. The statistical data available shows clearly that he is likely to be no more at risk of dying from the disease than a man in his fifties or sixties.] I should add that I am married with a young daughter so there is that aspect to this as well. My wife is supportive of my decisions but she is not big on taking to much risk with this.

In my experiences so far, it seems that most of the doctors seem downplay the side effects of the procedures and are not giving a lot of weight to the quality of life afterward. At 46 years of age my sex life is still very important to me.

In addition it seems that more and more reports are coming out stating that we are over treating this disease and that there is no good way to know whether you have a cancer that may spread or one that will never cause any problems. [Whilst it is true that there are no tests that guarantee a differentiation between low risk (or even a very low risk) disease and a very high risk disease, there are clear pointers that can be monitored for significant changes. Most disease diagnosed as indolent remain indolent.] At this point I am truly confused as to what the best approach is and would appreciate any input that anyone out there may have.

I would be especially interested to hear of any information related to the experiences of younger men with watchful waiting.

Thanks
Ned G.

I recently met again with a urologist at "City of Hope" here in Los Angeles who is somewhat reluctantly working with me on 'Active Surveillance". This was my second appointment with him and he did another PSA test which is still below 1.00 and we plan to do another biopsy in April which would be approximately one year since my initial diagnosis. Hopefully the biopsy will not show any further advancement of the PC and in that event we will proceed with PSA tests every three months and annual biopsies. I will keep you and the website apprised of my progress.

One thing I have noticed is the feedback from friends, family, acquaintances etc when we discuss my plans to watch and wait. The reaction can be quite strong at times. It seems that once you mention the word cancer, all rational thought goes out the window. My gut feeling is that twenty years from now "Active Surveillance" will be a very common approach to handling this disease but right now it feels like a radical approach.

First of all many thanks to Terry for deciding to continue his heroic work on this website. It has truly been a blessing to me.

I had my second biopsy in April of 2011 and there was no changes to report. One of the core readings showed 5% less PCA and the other one showed 5% more but I put this down to sampling error. Quarterly PSA readings continue to be consistent around 0.70.

I am feeling more confident in my choice to monitor the PCA as time goes by. It was particularily interesting to see the United States Preventative Task Force rescind the recommendation for annual PSA testing in October. Also read a great article related to prostate cancer in the New York Times on October 5, 2011 wherein they discuss the ramifications of routine PSA testing and the potential for treatment that may not be required.

I found the last biopsy to be a lot more difficult than the initial, one a year earlier, to the point where I passed out in the car on the way home. Thank god my wife insisted on driving me there. In addition I had blood in my semen for at leat four months afterward.

I am curious to hear if anyone else on active surveillance has had any issues with the annual biopsies. Also at what point after diagnosis might it be safe to increase the time between biopsies to every two years but keep the quarterly PSA monitoring. Regards

NedG.

I have been on active surveillance for three years now and just got the results of my third annual biopsy. Unfortunately it appears that the tumor is growing larger and the Gleason score is getting higher. The good news is that the tumor is still contained to the same two areas as all the previous biopsys however the volume in the mid lateral sample has grown from 30% last year to 50% this year, and the Gleason score has changed to 3 + 4 (7) from 3+3 (6). Naturally I am very disappointed with this news and it seems to me that my Active Surveillance days are over but at least I feel like I did my research and did not blindly go into treatment without first ensuring that it is needed.

At the moment I am leaning towards surgery a little later this year. Any thoughts or observances are much appreciated.

NedG

Apologies for the 10 year absence. In hindsight, I believe that, after finally making a decision on a treatment method (surgery in my case) and underging the rehabilitation process, I was so burned out with all things related to prosate cancer that I just took a break from thinking, reading or discussing it.

To update, I opted for a radical prostatectomy in November of 2012, which I had done at City of Hope in Los Angeles. Surgery went well with one overnight stay and I was up and moving around pretty quickly afterward. Looking back, what I remember most of the next week or so, was how uncomfortable the catheter was and just that general crappy post-surgery feeling. The catheter came out after about a week and that is when, for me, the side effects really came into focus. Never having dealt with incontinence before, it took a while to get used to wearings pads, monitoring every inclination to pee, etc. Thankfully, the post surgery physical therapy program at City of Hope was excellent and I regained a decent amount of control within a few months. The incontinence continued to improve over the next several years to where I would consider myself to be 95% dry, but can still have minor leakage depending on activity, what I have been drinking, tiredness, etc.

The impotence was a real eye opener in the beginning; it does not feel like you will ever get an erection again. However, with work (a lot of work) it does come back, certainly not the same as before, but enough that I can have a sex life without the use of viagra or similiar meds. Looking back on this time I remember trying any and all aids, including penile injections, vacuum pumps, oral meds, etc. It was very tempting to just give up, particulary when incontinence gets mixed in with the impotence, but thankfully my wife was a great partner and never gave me anything less than total support. I was 49 when I had surgery, so "youth" was certainly on my side in the rehabilitation process. From my experience, regaining impotence takes a lot of effort and is very much a "use it or lose it" situation.

A couple of side notes:

1) Approximately 2 weeks post surgery, I ended up with a pulmonary embolism (PE) that was likely surgery related, for which I spent a week in the hospital. A PE is a rare occurrence, but it was something that the doctors were concerned about as, post-surgery, there was a lot of encouragement to get up and move as quickly as possible. Also, I recall having these compression stockings on my legs that constantly squeezed and contracted to discourage the formation of clots. I believe a PE is a rare situation and probably shouldn't be a major factor in anyone's decision process, but I guess just a reminder that all surgery carries risks.

2) After my prosate was removed and sent to the lab for a definitive analysis, both the Gleason Score and size of the tumor were downgraded, which of course started the whole "did I really need this?" conversation in my head. However, with the perspective of time, ten years of monitoring and annual biopsies would certainly have created its own level of stress, both for me and my family.

3) I underwent treatment very reluctantly. After three years of active surveillance, meetings with radiation specialists, surgeons and a cryotherapy specialist, when biopsies showed both the volume and Gleason score of the tumor increasing, did I finally throw in the towel (with some encouragement from family & friends) and proceed with surgery. Generally speaking, ten years later, I rarely think about prostate cancer, and I am comfortable with the decision I made.

I received a lot of great advice and support from the members on this site, including the founder, Terry Herbert, for which I will be forever grateful. If I can be of any help or support to anyone else on their journey, please do let me know.

Regards,

Ned G.

Long Beach, California

Ned's e-mail address is: ned.geog63 AT gmail.com (replace "AT" with "@")