Heya fellas, long time lurker here and I decided it's time to tell "my story".
I've just turned 50 and am on AS. Diagnosed May 2012. Gleason 6 (3+3), 3/12 cores positive at 10% 15% and 25%. Progression T1c ( T2c?) nodule felt during DRE). PSA's were 1.0, 1.6, 2.8 (
Had been losing weight since 2009, but upon diagnosis, went all out, and lost 50 lbs more since (for a total of 80-90 since Feb 2009). Dramatic healthy eating changes fruits vegetables, anything high in anti-oxidents), and vitamin supplements (Selenium, D3, Vitamin E, Lycopene, etc). (all the info re that is available on-line, ask me if you have questions). Also increased exercise (walking 3 miles a day, taking the stairs, simple things).
The great irony is, since diagnosis, as a result of those changes, I have never felt better in my life! Sex with my wife has never been better (and the resulting benefit to our overall marriage!). And most importantly, I've knocked off a bunch of looming co-morbidities (obesity, diabetes, high blood pressure, coronary disease, ETC.!!).
My URO is cool with my decision for AS (he's also monitoring my testosterone levels). he's great, and he's supportive, as is my GP who said to me "you are the poster boy for AS". :-) All have discussed other options, both the pros and cons. I *did* go see a radiation oncologist for their opinion. I also looked into Cyber Knife.
Regarding the PSAs mentioned above, I personally feel that 2.8 high was an outlier. My original URO gave me a DRE the afternoon before that test, and had never advised me to abstain from sexual activity for 72 hours prior to the test. I'm quite sure the missus used my body before that high PSA (all subsequent tests I made sure that was followed).
So, for me, it was quite empowering to see that PSA drop, and that 1.25 was priceless!!! :-) Just had to share.
Glad I read about AS here (and elsewhere), and I am glad I did not rush to judgement / treatment. Regardless, with these numbers, I have a lot of time to think and decide. My wife IS nervous about it and wants me to "do something". but, with these low numbers, I am afraid it would be stupid to risk the side effects. I don't think she understands the hollow man I could become. (yikes!)
Thanks for reading.
Well, it's been a little over a year since diagnosis, and I go for another TRUS biopsy on June 18th. After all the post-diagnosis and research, as well as many talk with doctors, I decided on Active Surveillance late Summer last year. This TRUS biopsy is thus part of the AS protocol.
My PSA's have been very steady since the one "surge" that lead to the initial biopsy and diagnosis (see my original post for the numbers). I attribute my success thus far to healthy diet and exercise, as well as a mental will power and and control of stress and anxiety associated with diagnosis.
So far, so good. At 50, with a wonderful wife, I am not ready to deal with the side effects for what so far has been a low-risk disease. I'm too young to "not be in the game" :)
I will update quickly next week when I get the biopsy results. Wish me luck!
I just realized that I made an editing error in my initial story, and the the PSA timeline was abbreviated and incomplete. It's important to the story obviously, so, here it is:
Starting Summer 2011 (one year previous to diagnosis, on 6 month intervals), it was 1.0, 1.6, then 2.8 which was cause (based upon velocity or "doubling") for the TRUS Biopsy and diagnosis, then (at 3 month intervals) 1.7, 1.25, 1.5 and just recently 1.6.
Sorry for the omission.
So, after the year on AS it was time for my follow-up TRUS Biopsy. The result was mixed, some good, some bad. Positive cores were down (the good part) to 2/12 (from 3/12), but the Gleason was upgraded to a 3+4 (from a 3+3). Obviously, I was very disappointed, because my URO was talking treatment again now.
He did recommend getting a second opinion, which we did. A local expert reviewed them, and the slides were even sent to John's Hopkins for a 3rd opinion. Both reviews said the hospital pathologist was wrong!! the Gleason was confirmed in both to still only be a 3+3!!!!
I cried tears of joy last night. :-)
(This "my story" option should realy include an "Active Surveillance" choice. The "none" choice is kind of dumb. Just my 2 cents).
Forgot to add that my 2nd (1st annual) biopsy results were confirmed at 2 cores of only 10% and less than 5%~~!!!!! I am ecstatic!!!
Latest PSA was 1.7. So, I continue to rock on. :)
Tweaking the diet re foods that will further eliminate excess estrogen toxicity. Feeling great, and very glad I chose AS.
Latest PSA 1/31/14 was 1.6
Last PSA was 1.6.
I continue to ride the Active Surveillance Train. :-)
Last PSA was 1.8, a slight increase. Might worry except I had a 3T MRI recently and it showed no actionable tumors!!
Continuing on AS. :-)
I'm still on AS and doing quite well. 4+ years into AS, and I know I made the right decision. The time of normal life with my extremely loving wife is priceless.
Last biopsy (June 2016) came back with nothing! 0/16 cores. PSA never above 1.8 (usually 1.6, 1.6 etc). Walking 6 miles a day now and eating right (most of the time). Hot (as in spicy) meal at least once a day. I enjoy it, but am also convinced that capsacin has alot to do with my current situation.
3T MRI last Summer showed nothing (except a small area scored a 2 on the PIRADS scale). I am still on my TrT, and see that Urologist every three months for PSA testing and blood work re monitoring the TrT.
I'm a lucky man.
Still on AS. 5 1/2 years now. All is well.
Walt's e-mail address is: coolwally AT msn.com (replace "AT" with "@")