Noy sure if I'm angry with Doctor or myself or both

I can understand your feeling. With paper records it is difficult to track the progress of every blood test. Electronic records sometimes offer graphs or indicators. The PSA testing also varies by locality. For whatever reasons the testing wasn't that good.
You are 3.5 years out and doing fairly well. Good luck.

Tony,
Don't beat yourself up! It is what it is and your frustration will diminish as mine has. I had implicit trust in my old Dr to take care of my health needs. 13 months later I had my labs and met my "new" Dr. His notes read "PSA high and rising, monitor". He didn't mention my PSA or the fact that it had "doubled". I guess that I'm at fault for transferring my trust in my "old" Dr to my new Dr. My complaints about urinary frequency were dismissed by his PA as due to "old age". Well, I was "monitored" for over 11/2 years-until a trip to the ER resulted.

My trust was obviously misplaced and I can blame myself for not knowing about prostate cancer or the PSA test. Life is too short and your frustration will diminish like mine has. Initially when I was on lupron I seriously considered flying to Alaska to meet with him at his new posting; the lupron is wearing off and I have no desire to meet with him. Live life like there is no tomorrow..It will pass Tony!
Bill

Post Edited (gunfighter) : 2/21/2014 6:02:08 PM (GMT-7)

Looking back has about the least value of anything we do in this PCa journey.

It is done, we can only move on.

Having had my first and last PSA (read only) before surgery, I can understand your thoughts, but my doc has gotten so many other things right (and before they became issues) that I have to give more credit than blame. We were talking about it at the range (dangerous place to have profound discussions, with all those .45s and ammo around). He reminded me that if I had died of cardiac failure (which I was headed to when I first went to him in 2000) I wouldn't be worried about PCa today.

Ed, good point.

But I've met a lot of good people and tasted a lot of good scotch since then, so I'm still in bonus mode, despite having adopted a cane as an occasional appendage. I was going to have gout eventually. My dad had it at 47, so I was doomed.

Once a model girlfriend (yeah, a professional model) who had some really weird, UGLY, and freaky friends (did I say ugly and drug addled?) insisted "love me, love my friends". These days, when pads and shots come to light, the friends leave me alone. But then so do the girlfriends. Wait, I think I was the looser in that deal.

Oh well, I lived long enough to remember that as "remote past". Davidg will understand. There is a special verb tense in Italian for that

As 142 alludes to, there's a reason the rear view mirror is so small and the windshield looking forward so big.

The initial post serves as a reminder that going forward we should all keep paper copies of all doctor reports and electronic CD's of all scans.

Some of these can even be requested going backward as you reverse engineer your medical files chronologically.

I guess we nowe have to think of 142 as a model mod. Hope PeterDA and Jim/Tudpock18 do not get too jealous.

LupronJim

Post Edited (LupronJim) : 2/22/2014 7:57:11 AM (GMT-7)

ALWAYS ask your doctor for a copy of any/all tests.  If scans are taken, get a CD copy for your files.  Saves time if other doctors need to look at a scan.  You are responsible for your own health care, so start building a personal file that you can take to the doctor so you can compare the new test results with your own past paper work.  Now you have information available to be able to ask questions.  A doctor should never suddenly surprise you with a high PSA level if you have been testing regularly. 

My high PSA was a surprise    because I had not had a physical for over 10 years.  No one to blame but myself.

Mel,
I guess that I'll have to add you along with "Clock" and "Yoop" as being the "voices of reason".
As an ardent and stubborn advocate of screening, I "cringe" when I read of patients who are diagnosed with "advanced cancer" due to the failure of their doctors and medical institutions to offer a screening test or have an "informed discussion". Our President and his challenger (Sept 2012) had their screening tests that are effectively denied to a large population of men many of whom are at "high risk".
In 2011 I submitted a letter to the Chief, Medical Officer at my medical facility recommending change to assist those who would follow in their journeys; it was ignored. Subsequently, in 2012 I submitted a FTCA claim (Federal Tort Claim Act) to Detroit which was forwarded to the Pacific Northwest for review and resolution. Within 6 months, I received a phone call with an offer for settlement versus going to Federal Court; I accepted the meager amount offered since I felt that I had made my point.
I realize that I am stubborn and uninformed, but for a Doctor to ignore a high psa with a doubling time of 13 months and urinary symptoms and not offer a dre was not the "standard of care" anywhere at the time. I assume that with the task force's "Not Recommended" and no psa or dre test that a patient diagnosed at an "advanced stage" has no recourse?!
Please, if you know a VN vet recommend that he has a screening test since he is "at risk".
That's my story and I'm sticking to it.
Bill

I think this thread points out the necessity of the patient being his own advocate and learning about his health.

But I find it very hard to blame a patient for not realizing his rising PSA is a sign of trouble. Then, of course, the patient beats himself up over it.

Frankly, we hire doctors to look out for our health. Do we really expect guys to be up on all the nuances of PSA testing? I know in my case, the PSA was important and PC was a danger to us aging males. I knew more than most. But I did not know enough to spot a rising PSA as a problem. Remember, you get a bunch of blood tests and look at the results. They all list your score and a normal range. If your score is within the normal range (in this case 0-4) you don't worry about it. That's true pretty much for every one of the hundreds of blood tests you get.

So, don't blame yourself. I put the blame squarely on the doctor's shoulders.

(Incidentally, I don't even blame my doctor for not noticing the 0.1 yearly increases as a problem. How many GP's would notice that even today?).

There is a standard of care and doing regular PSA's was part of the standard, and ignoring PSA tests (especially after an already high PSA test is LOUSY). I guess we have to remember that 10% of all doctors finished in the bottom half of their class! <G>

Mel

I see two issues with tony's case. The first is that we have to take more individual responsibility for our health care, reviewing all lab tests and asking questions when we see a high marker.
The second is the system itself. Graph representations of our data over time should be a standard in health care. One marker in most cases is useless, but a graph showing trends over time is a pretty good indicator of problems.
Anyone running a business knows that graphing your major business indicators is a good practice. why we don't do this in health care is beyond me. It's just a simple program.

John T:

I agree with you, but this is all in hindsight. I've gained this knowledge as a result of being dx. with PC. I guess my point is:

Consider Joe Shmoe, before any PC dx. Do you really think, with all the blood tests done at a routine exam (assuming he even does routine annual physicals and that his doctor has half a brain and will do PSA tests), that Joe is going to worry about a trend in his PSA?

HIS DOCTOR SHOULD, but I suspect 4.0 is still the magic number (no trends)  used by most family practice doctors.

Mel

The first is that we have to take more individual responsibility for our health care, reviewing all lab tests and asking questions when we see a high marker.

while I agree with you about the personal responsibility and I'm not saying you can sue the doctor what is he being paid for? to collect information that we must decipher and act on? sorry I don't agree with that. he's the professional in the relationship and gets paid very well for it. the OP's doctor dropped the ball.

ed

Lupron Jim,
I'm adding this to my mantras "there's a reason the rear view mirror is so small and the windshield looking forward so big".
Many of the guys here have had docs who were practicing being docs. Mark's was his urologist who was so busy planning her wedding that she downplayed his increasing symptoms of mets in his bladder, including a scan that was suspicious. It was only 4 months before he consulted a new urol, but earlier treatment may have given him a longer lease on life. Who can say when it is our time or what would have happened IF. Tomorrow is a new day and we move ahead.

Pat