Oh Crap!

Hi TooYoung,

I feel bad about your results, both because it happened to you, and because it happened like this.

I know you used the ultra-sensitive test, but somebody forgot to tell you that results over 0.01 (or whatever the minimum is for your version of the test) are not "undetectable" for Gleason 9 folks. I don't care what people say about non-aggressive PC. If they want to believe that a result of <.1 is undetectable, sure, go ahead. For us, it's different.

I looked up earlier posts and found your last test result on May 7 of .04. That's not <.04, so it wasn't undetectable for that type of test. Perhaps your doctor told you that's what it meant. Some of the more experienced medical oncologists would have had you retest immediately and if they didn't begin aggressive treatment then, they would only wait another month or so before taking action if you still showed signs of recurrence.

It is good to see that your doctor is taking this result seriously, but then it meets the traditional guidelines for recurrence of a PSA over .2. Still, radiation may only be one approach to consider. Because you didn't have positive margins or other signs of local spread, chances for radiation to remove the cancer go down. Even in my case with organ-confined disease and positive margins, my chances for cure from adjuvant radiation are in the 35% range. I would strongly recommend that you consult an experienced medical oncologist who has dealt with aggressive PC. Our G9 cases require radical action to hit hard and fast.

I wish you the best.
Nellie

Really sorry to hear of the rise. Hopefully the restest will give a more reasonable result. What rotten luck. Well, you know the drill, research, worry, decide and continue on, we're here with you during your next stage.

Too Young,
I just finished with my adjuvant radiation on August 16. As Rad Dad says it's a grind. I worked through it and only took two Fridays off for the last two weeks. I wouldn't want to jump right back on that now, but if I have to do it again, I could.

tooyoung4this,

I know you are playing with your kids. Here is one more thought on "not being done." That is one of the big mental hurdles I had to get over. At first, I thought I would have surgery, radiation, and short term HT and then get on with my life. I kept getting feedback from the oncologists stating that, no I am not done. I did not want to hear that. Well, I finally got my head around it and have learned I can manage through any of the SEs and live a happy life. I am still hoping I can put a ribbon around this in 2014 and move on. But, my wife and I have talked about this. If I need to intermittent treatments, etc the rest of my life, we can do it and be happy. Good luck and have a great evening with your family.

SC 

My Rt clinic wasn't far, but there was massive road construction, so a 20 minute trip became 45 some days. I finally just got into a routine of leaving home at a fixed time, stopping on the way to chug my water, and then sitting with a book or magazine for the extra time the days the traffic was light.

My RT team was small, and I got to know all of them, so it became almost a social event with this nasty machine that intruded. Because I work at home now (after surgery, my job changed dramatically, long story) the daily excursion was a diversion from a very boring routine. It was a daily chore, but I got up the day after I finished and was half way out the door before it sank it that it was over. I went back a couple of times just to take cookies & doughnuts.

My daily RT path is linked in my sig.

Fairwind -- are you still on HT or did you bail after a year?

ed