Prostate Cancer Diary

Hi Folks

I recently went through what so many have or will go through. The agonizing decisions and life-impacting changes that occur when your life gets turned upside down. When I found out I had advanced prostate cancer I was in shock and my first search was for a forum and diary on google. Forum presented several excellent forums but diary provided none of value. I hope by naming this such the google gods will route folks using that dynamic search to this fine forum that I am likely many have found helpful.

In 2011 PSA 2.3
In 2012 PSA 2.5
In 2013 PSA 2.8 nd FPSA 7

The above trend is within spec and raised no red flags to my providers. My DRE up until day of surgery provided no indication of problem. I have no family history anyplace. I am 48 with no known risk factors and actually had no cancer in my family tree until all this.

This past Spring my PSA came in as above. I felt fine and my doctor saw no reason for concern. My trend was normal at my age. No history. PSA totally inaccurate having sex 48 hours prior and / or ridding a bike or other hard between leg aggravation can elevate test etc..

Late Summer I started to feel that something was no right in my mid pelvis. I didn't have pain. DIdn't need to pee often overnight nor during the day. Had none of the symptoms. My change if you will was that having sex resulted in far better and larger releases and that was my leading indicator.

So off to the urologist I went. Your numbers look fine... your ultrasound shows a smaller than expected gland. DRE no indication of anything. No family history.

I said I feel something is going on there and I am concerned about the "7". OK Lets retake the PSA. Result 2.8 / 7 fpsa. He asked if I wanted to do a biopsy. There are real risks with a biopsy and they are not completely accurate but it's certainly worth checking. I said absolutely lets do it.

Biopsy done. 12 cores. Biopsy is not that fun and does screw you up for a couple days.

Biopsy comes back with 3 7(4+3) and 1 7(3+4) up against my bladder.

Panic time!

I went on a mad scramble to figure out best plan and find a doctor to help.

I landed with Dr David Lee at UPenn in Philly we (wife and I) had other options but if ever you get a chance to be in this doctors care I would do anything to make it happen. He is currently 3rd in the world in robotic removal and this ended up being a route I could take. He is not easy to see you may need a connection as when we called they were like forget about it you need a fellow doctor to call to make your case... but during the call my age and lack of history was casually dropped :) this got us past that. I am sure you can get past it other ways. But I met someone else that couldn't get to him and had to use one of his protoge of which there are many many.

Dr Lee had me in the MRI room in 2 hours of my appointment. I did a coil MRI which frankly is one of the most painful things I have ever had done because you get nothing for that procedure. It's 45 minute colonoscopy type thing without the drugs.

Result no spread viable robotic set up surgery with Dr David Lee at UPenn.

I went into the hospital a month later for the operation.

During all the weeks and months while doctors, research, tests, etc... are all being done is complete panic I am not sure how you avoid such panic other than to say many have gone before and will go after you should you ever need to go this road. Read this and other places to understand and know that the other side even wearing diapers and the ED etc... are nothing compared to not doing anything. I don't mean to minimize all those thoughts but they go with this territory and many others cover the thought process of being suddenly completely screwed.

In my case I had panic fear scrambling for wills and directives etc... plus I also was so worried I failed my EKG thus causing myself more hassle because many more test to make sure my heart was OK (which it is I had been checked 4 months prior) but the complete panic screws you up.

Anyway, if I haven't said before have absolutely as much sex as you can from the moment you start the testings to the day of surgery because it's going to stop for a while!

So I go in for my surgery... I am going to post this and reply momentarily so I don't lose all this stuff

Hello Archie the Goth, welcome to the forum.

That's one of the more complete stories we've seen in a first post. Your memory for detail is quite good, perhaps because you are so much younger than some of us who tend to get a bit vague... where was I? Um, never mind.

I particularly envy you your memory of seeing the machine. Many of us (most maybe) don't remember that part. The drugs they give you are amnesiacs -- they prevent memories from being recorded -- and, while we all saw the machine before they knocked us out, we don't remember beans. In my case I remember them taking the lock off the gurney in the pre-op area and saying "Ok, here we go" and then I woke up in the elevator heading from recovery to my room. My wife was waiting for me at the third-floor nurses station and she says she could hear me swearing in the elevator all the way up from the first floor.

So, how are you doing now? Any questions we can answer?

Like I said, welcome to the forum.

I found your detailed story very interesting. I experienced the whole thing from the wife's perspective....so it's interesting to get a chance to see it from the patient's viewpoint. My husband never could have provided me with so much detail (or maybe he just doesn't want to think about it). Your post will help others with surgery in their future overcome the fear of the unknown.

Thanks for taking so much time to tell your story.

I was thinking about my posts and a bit of information that might help someone going down this path.

When I started down this road I told my family and the result was that I started having to tell my tale many times per week and update many people all the time or they would call for an update.

My solution was offered by my brother. I went over what was going on specifically with him in detail and he in turn communicated every detail needed out to my circle of family. The result of this was that it took all the repeating off me and allowed me to work on the problem at hand without dwelling on the negatives.

I highly recommend this if you have a loved one that can handle it and not procrastinate etc.

When the event came near I added loads of folks to the circle of knowledge. I included lawyers, key employees, partner business owners and other folks that really needed to know given that I would be out at least a week and perhaps 3-4 and that during that period some give would be needed by all to make me less stressed. All these folks stepped up and I was able to miss weeks without a hitch in the businesses.

about this time I also told my friends.

I also spent time during the buildup to surgery going over Wills, Bank Accounts, Passwords, etc.

If you have not done a proper listing of all this information I recommend it. I have been at it now for 4 months and I am still not done. Prior if I had died for some reason near nothing would be easily found and handled by my wife and/or family.

I began and continue to tune a system of filings where bank accounts, life insurance documents, wills, website passwords and other vital information is summarized on sheets and placed for safe keeping.

Yes I should already have had it done. But at 48 I still was being stupid. If you have not started the job of creating a worksheet form which a loved one can work I highly recommend starting now as I am very organized and I am still not done after months. It's wicked tedious work and the going slow. But if I pop off sometime everyone I love will be better able to move forward and not have a huge task figuring out what the heck I was doing nd where everything is.