I've been out to the Yana site and read a bunch of stories... I've even e-mailed and received advice from about 15 Yana members - Thanks a lot guys!
I will say that one thing I have found interesting is that there didn't appear to be all that many guys that really struggled with the decision of which treatment option to take. It almost seems like most men got the information that was available and then made a decision (almost like their decision was a "no brainer"). As for me, I'm still undecided. I have narrowed treatment options down to either the Da Vinci surgery or Proton Beam therapy. I've seen a couple surgeons already and will be going down to Jacksonville (University of Florida Proton Therapy Institute) next week for a consultation.
Once I have the information, then the tough decision comes - and from what I see, it is a choice between two bad decisions! As I see it, the positive aspects of surgery are the "cure rate" and the options open to me if I happen to be in the 10% where the cancer comes back. On the negative side of surgery are the possible risks of surgery, pain after surgery, a 40% ED rate, and a 15% incontinence rate. As far as the proton goes, the positives are a high "cure rate", an incontinence rate of around 1%, a slightly better ED rate at around 28%, and it is a no pain/non-invasive option . On the negative side, are that I would have to be away from my work and family for two months and fewer options (and more complicated options) if I'm part of the 10% where the cancer comes back.
So, next week I'll have to make a decision based on all the bad options available to me (and I understand that these options are much better than they were even 5 years ago - but that doesn't make them "good options" just better :-))
I had my consultation visit at the University of Florida Proton Institute last week. Beyond the tour and speaking with the doctor, I've now had two doctors stage me at T1c and two at T2a. I've also had another PSA test which was down to 2.2 (from an initial PSA of 4.91) and a free PSA test which came back as 10%.
As I wrote in my initial update, I had narrowed the choices down to robotic surgery or proton. I still think each has the positive and negative aspects indicated in my initial posting and even filled out a spreadsheet with all the positives and negatives and then weighted each according to how important each item was to me. With the lower PSA and a potential lower staging than my initial urologist's opinion, it seemed (to me at least) like surgery had even greater negatives (side effects) based on how early it appears my cancer was detected - as the odds of getting cancer again appears to go down for all options based on staging, PSA, Gleason score. So, I have selected to go with proton therapy to eradicate the cancer. I feel good about this option - but will admit that some of that feeling is just due to having the last 2+ months of indecision and research behind me. I will also admit that there is a small part of me that will always wonder if this is the right course - although I would have this feeling regardless of which option I picked (how do you "know" until it is over?). I guess I will be able to say it was definitely the right choice if I can update this site in 10 years cancer free because then I would have minimized any chance of serious side effects and eliminated the one major drawback to proton beam.
We will see :-) I also got information on a phase II trial going on which takes the treatment for low risk patients from 8 to 6 weeks! Now I have to bring a work proposal to my boss for the time I anticipate missing work!
Later: I've received approval from work to continue to work in a virtual manner while I'm down in Jacksonville, so that is a real blessing.
I had my 3 month post treatment PSA test taken a couple weeks ago. I feel like I'm playing the Limbo... "how low can you go..."
Anyway, my first post treatment (taken the last day of treatment in Jacksonville) PSA was 3.2 - and they anticipated that that was the new benchmark, or high point, as my prostate would be the most agitated based on the treatment... so I was looking for lower than that. Also, it generally takes 12-18 months for your PSA to reach nadir after treatment - and that number is then predictive of a "cure rate." The ultimate goal is to have a PSA nadir below 0.2 as that would indicate a 99% cure rate.
After three months, my PSA was 1.4, so I'm well on my way - or at least going in the right direction. Additionally, when I started my free PSA was 10% and now it is 19%. FreePSA is the percent of the total PSA that circulates in the blood without a carrier protein and the lower the percentage is, the higher the odds are that the total PSA is due to cancer. According to the statistics I've seen, a free PSA below 7% indicates a 91% chance of cancer, below 15% a 43% chance and only a 5% chance of cancer if the free PSA is above 25%.
So, things are good - what should be going down is going down and what should be going up is going up - and I've had absolutely no side effects from treatment.
Current PSA: 0.9
I had my most recent PSA test in June (18 months post treatment) and it was 0.9 (my first time below 1.0). I had a slight bump (up 0.2 to 1.4) in March but it came right back down to its current level in June. My PSA is going down much slower than I would like, but the doctors don't seem at all concerned and now say that it may take up to 3 years to reach nadir. I guess as long as it continues to go down, all is good J.
Over the past few months I have had some minor ED issues which I'm assuming is due to the treatment; although this issue has been taken care of with Viagra type medicines.
I've attempted to update the site through this form, but for some reason it has not made it to the site. Anyway, I just had my three-year post treatment PSA and my current PSA reading is 0.6. My PSA has come down much slower than most others that I've read about both on this site or in various studies.
While gauging yourself against others can be frustrating, the good news is that even after three years post treatment, my PSA is still going down at a rate of about 0.2 per year. So all is good!
The year has gone by quickly and it doesn't seem like it has been that long since I last updated the site. I've had two PSA tests in the last year... both were either 0.6 or 0.7. I'd, of course, like it to be lower, but the doctors at UoF Proton Center seem to think this is fine, so I'm happy. I really don't think about the cancer on a daily, weekly, or even monthly basis... but it is a little nerve racking when you do take a PSA test waiting 4 or 5 days on the results, praying for a low number. But all is good :-) Feel free to contact me if you have any questions on Proton treatment or UoF
Another year has gone by and the good news is that there is no news. While I would still like my PSA to be lower (but who wouldn't, right), it has been at 0.6 at both tests I've had over the last year. Doctors at UoF are happy with that so I am as well :-)
Another year has gone by with no changes... my PSA is holding steady with no additional side effects. I am currently just getting the normal once a year PSA tests, so I won't have another one until December. I hope I have a similar update next year.
Just got my annual PSA results back with some great news... 0.4 - lowest ever result. So I'm good for another year :-). Everything else is going well.
Another year down... no change in PSA or any other health issues. Actually, I'm in better shape as last December I got a road bike and started cycling... completed 2,500 miles in 2016. Trying to increase that to 3,000 in 2017 (although I'm already behind on that goal after two months :-)).
Michael's e-mail address is: mscharff AT limestone.edu (replace "AT" with "@")