I'm the wife. I've never posted anything on the Internet before, although I've been avidly reading this site for a while, and it is a really good one.
My problem is I can't stop scouring the Internet, looking for Gleason 9 cancer survivors like us, but those who can speak personally about long term positive outcomes -- like 10-15 years without PSA recurrence after RP. It scares me that I can't find them. Yet, we were told there was a 40% chance that he would not have a biochemical recurrence in 10 years -- so where are the lucky 40%? Perhaps they weren't finding the Gleason 9's early enough 10-15 years ago because PSA testing wasn't as prevalent? I just don't know.
My darling husband (58) was diagnosed with PC this summer, coincidentally, just as we were celebrating our 30th wedding anniversary. PSA went from .5 (2005), to .6(2006), to .7 (2007) to 1.4 at his annual checkup in 2008. His internist found an "unusual ridge" and sent him immediately to a urologist - this was before we even knew the PSA doubled. The urologist, also a conservative type, felt absolutely nothing -- he said the prostate was normal. Put him on Cipro for a few weeks, which had no effect on the PSA. At the post-Cipro DRE, the urologist said the prostate felt even more normal. After learning the PSA had doubled in a year, however, he immediately scheduled a biopsy. Results came out Gleason 8, 5 out of 12 cores positive for cancer -- all on one side. We were told with the aggressive Gleason 8, we did not have the luxury of waiting. We were also told surgery was the only option, although one of the surgeons mentioned the possibility of 2 years of radiation combined with hormonal therapy as a possible alternative to surgery. We didn't like the sound of that and, after meeting with 2 surgeons -- open and robotic -- we went with an open RP at Johns Hopkins this September.
Pathology report: Upgraded to Gleason 9, negative margins, no seminal vesicle or lymph node involvement. Perineural invasion as well as lymphatic and vascular invasion were noted. No further treatment necessary.
First PSA last week was .1 undetectable (big sigh of relief).
So here we are 9 weeks out from surgery and I can't stop worrying and can't stay off the Internet. I'm worried about the lymphatic and vascular invasion in particular, which I saw noted in the written pathology report. Now I'm sorry I asked for it. We know the odds regarding aggressive Gleason 9 cancer, even with negative margins and clear nodes, vesicles etc. We know about micrometastis and I feel like this is a ticking time bomb and we're just waiting for the other shoe to drop. We're trying to be positive, living our lives from day to day and just enjoying and looking on the bright side. For example, his recovery was quick -- only 24 hours in the hospital and dry from day the catheter was removed. ED is a problem, but we're patient, committed and creative. Plus, we know it is still early. We were told to regard this particular problem as if he had had a stroke. It takes a long, long time to recover. We are dealing with it and, for the most part, enjoying life. He has his energy back, feels good and is back to exercising. He laughs like he used to and is busy at work. We're planning a vacation, and yet, I still worry so much. He is much smarter than I - he stays off the internet and only reads things sent to us by Hopkins, or Dr. Walsh's book. I need to follow his example.
I don't ever expect to return to what, for us, was a lovely, normal life -- blissfully unaware and naive about cancer and never having heard of such things as neurovascular bundles and PSA anxiety. I'd just like to know from those with more experience if it gets any easier, and, as long as PSA remains normal, whether it eventually becomes possible to get through a day without having questions such as "will it come back?" "when?" "what if it does come back - what will happen to us?" at the forefront of my mind. When, if ever, do you breathe easy with a Gleason 9? I suspect the answer is never, but it would definitely ease my mind to know that there are long term Gleason 9 survivors who have not experienced biochemical recurrence.
I know that for now, we are very very lucky. And that should be enough. Perhaps it was caught early enough- indeed, I don't know how it could have been caught any earlier. I just squirm because of all the uncertainty - it is making me crazy and I want it to subside. (I'm a controlling type, and I like things the way I like them. Obviously, I don't have a lot of experience with cancer.)
My short term solution: I'm moving the laptop out of the family room and have resolved to stay off the Internet -- or at least, cut back. My resolution is when I feel the urge to surf, to get out of the house and take a walk around the block. Sometimes, too much information is bad thing - frankly, I think I'm at that point.
Thank you for listening.