can't stop worrying

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.

I must disagree with your generalization, in that I believe everyone's makeup and situation is different. I'm sure that had I left the "doctoring to the doctors", I'd be dead by now.

Like you, I am an "aggressive" cancer patient. I have met with/been treated by doctors whom I consider to be among the best (Partin at Johns Hopkins, Araujo at MD Anderson, Chen at Morristown) and at the other end of the scale, a urologist who feels surgery patients would be better off if the surgeon "communed with the spirits" rather than used anesthesia. I feel I have to be able to determine the level of a doctor's expertise and competence based on my own grasp of the situation.

I have been at this for almost four years and I still read about my disease and its treatments voraciously. Perhaps, had I been this obsessed years ago, I wouldn't be in the pickle in which I currently find myself.

-Les

gordy, you are right. what my main point was to stay informed and be able to know what to expect. My PSA went up in one year and the doctor put me on antibiotics. they lowered the PSA lower than the PSA the year before. I kept asking how could this happen. the doctor said to be happy and get re-tested in 6 months. I went back to another doctor 4 months later and it was up again and later determined it was cancer. What I know now I probably would have had another PSA in a month or gone straight to a urologist (given that I have pc in my family). Agree with tony on the books to read.

Hi KC,

What you are experiencing is perfectly normal. I was diagnosed in April of this year and have been doing exactly as you. I have spent entire days on the net researching and reading incomprehensible medical jargon. In the last several weeks I have begun to ween myself off of the research habit. It takes some time. I now visit only this site and try to only visit once a day. Although I find myself here more often than that as I like keeping up with the other's stories.

I admire your husbands ability to put it aside. I have done so and feel that what will be will be and that I have done my best to effect a cure or at least slow the disease. I find that the more I occupy my mind and hands the less I think about the PCa. So, your resolve to take a walk will help. Probably improve your fitness as well and exercise is great for settling the mind.

Being positive is good too and you have reason to be so with the most recent PSA. I have a friend who just passed 5 years without a detectable PSA. His Uro told him he was cured and should have no further issues. He is 64 and an RP patient.

My plan is to get on with life and to integrate the monitoring and tracking of the PCa into it. Every day it seems a bit further away. I sincerely hope that you can let go somewhat and find some peace. Time will help. 

Take care,

Don

Keep Calm-
Welcome to the site and from one research obsessed individual to another, it will get better. In addition to the great posts already made, one thing to keep in mind is that research is being done as I sit here and type this. When my father's post op pathology came back and showed that a lymph node was involved, I was devastated! Like you, I read way too much on the internet and everything was negative. When it came to additional treatment, there were no studies that showed long term survival benefit for IMRT with lymph node involvement. We were absolutely devastated. Although controversial, we urged my father to have the IMRT done and he did. He is also on Lupron for 2 years. A couple of months after my father completed IMRT, a study came out that showed a significant benefit for IMRT in patients such as my father. Had he taken the advice of many of the medical experts we had met with, we might not have done the radiation. So, the moral of the story is, try to stay positive and maintain hope that your husband's cancer will be gone forever and IF, it happens to require additional treatment, that new treatments will continue to be an option and cure IS possible.
Last by not least, my family was very worried with my research obsession when my father was diagnosed. My husband banned me from the computer at a few different times. However, I have absolutely no regrets and have shared with my family that I have done everything in my power for my dad, and I sleep good knowing that I helped him find the best doctors and the best treatments. I'm only human and unfortunately don't have the cure to cancer. Neither do you. So, do what you have to do, but know that you too are only human and hold onto hope. You both will get through this, and as cliche as it sounds; everything does get easier with time. Stick around and keep us posted.

All the best,
Doting

Thank you all for your thoughtful (and prompt) comments.  Glad to know I'm not alone with the obsessive researching.  Good luck to each of you.   KC

Hey Keep Calm,

I'm in the same boat.  Found out Oct.27th that I had "some cancer down there."

PSa of 14.5, and biopsy showed 4 of 12 samples with cancer.  Since then, I have been on this machine every night looking for advice and answers. Perhaps I've read too much but the research has been eye-opening.  57 Years old and never had a thing wrong with me.  Perhaps my luck has changed but I told my wife that these are the cards I've been dealt, so I'll play this hand.

We meet with the urologist Thursday with a page full of questions, and so far I'm leaning towards radiation.  Your husband sounds like his attitude is great and that's a tremendous help.  Hang in there.