What were your stats before DX?

As with so many attempts at modern day learning we turn to the internet and PSA education is no different.

Following my own recent experience, my 46 year old son is now taking notice and showing an interest.

He asks questions I can’t answer and as we have difficulty sifting through random, conflicting online info, I thought I would start with some basics here because you, like he and I, started the process somewhere. You have hands on experience, pun or not.

Almost all signatures here begin with DX. No lead up, which I would find fascinating and I’m sure men approaching that magic age, like my son, would as well.

So, for those who had a spell of “normal” PSA tests before it became an issue, let’s begin with;

At what age did you start PSA testing?
Do you recall what your first reading was?
How often did you test?
How many years elapsed before it rose to a concerning level?
Did it rise quickly over a short period?
If it rose slowly, did you shorten the time between tests?
At what level (reading) did they biopsy?
During the period from your first PSA to biopsy what level of care did you have; GP, VA medicine man?

That should do it for now; feel free to add stuff and thank you.

Tim.

My first PSA was the one that sent me to the uro and a treatment plan. Or better, there was no lead up, there were no stats before DX.

My first PSA (at age 57) was 7 point something, DRE was bad, biopsy worse. I turned out to be the poster boy for waiting too late.

In 2010 my PSA was 1.87 and in 2011 it was 3.30. Doctor didn't seem concerned and I missed 2012 due to a variety of reasons. in late 2013 I was admitted to emergency for a complete urinary blockage and 4 days later I saw a urologist who exclaimed "YOU HAVE PROSTATE CANCER"! I had been tested regularly since I was around 40. Had I known then what I know now, I would have insisted on further testing in 2011. But now that's all water the bridge and after many different treatments I am currently undetectable.

At what age did you start PSA testing? 57
Do you recall what your first reading was? 1.8
How often did you test? yearly
How many years elapsed before it rose to a concerning level? 6
Did it rise quickly over a short period? not really, but had prostatitis spikes
If it rose slowly, did you shorten the time between tests? to 6 months
At what level (reading) did they biopsy? 3.8
During the period from your first PSA to biopsy what level of care did you have; GP, VA medicine man? GP, then self-referred to urologists at Johns Hopkins

Pratoman said...

:Nono:

Lol. These little guys tell a lot.

My story went like this: Mother died from pancreatic cancer, older brother DX for PC, during a routine physical doctor asks about cancer risk factors as part of a general health screening. Recommends a number of blood tests including PSA.

PSA test done, 3.8.
Restested three months, 4.2.
Sent to URO.
DRE negative, prostate size normal, no other problems. Biopsy recommended,
and the rest is history and soon to be the subject of my poetry collection.

Andrew

Here is my information:
Started digital exams when 40
Started PSA when 50
At around 53 digital exam showed enlarged prostate. Told it was normal.
At 57 (last year before diagnoses) PSA 3.3, digital exam showed "normal" enlarged prostate.
At 58 (when diagnosed) PSA 4.7, digital exam showed lumps on prostate. Two weeks later (and after a second digital exam), PSA was over 11. Biopsy 4+4, 4+4, 4+3. The rest is listed below.

Like Mattamx, my husband is a victim of the belief that PSA screening does more harm than good.

In his 40's he had a few PSAs that were all very low (<1). In 2012 and 2015 he had physicals- no PSA, DRE declared normal.

Symptoms in 2016 and even then, GP said DRE normal but prostate enlarged. She accused me of over reacting to the delay in transfer to uro when PSA (finally done, but we had to pay $50 for it) was 28.

My guess is that the first GP (ready to retire) felt confident in his DRE ability but the young doctor who replaced him, lacked the experience or knowledge. She didn't seem to know that prostate density (not just nodules) are a bad sign.

At age 45 (2002), my GP ordered a PSA without my knowledge as part of the standard blood workup for an annual physical. It came back at a 5.0, and I had no idea what that meant. He said go see this uro, so I did, and had a six core biopsy. Negative.

Over the next two years, I had two more biopsies, the last being done by Dr. Fred Lee, of color doppler ultrasound biopsy fame. Nothing ever found but some inflammation on the left side. The PSA fluctuated as I had tests about every six months, with a very low free PSA.

I started on low dose aspirin, and over the next couple of years the PSA came down to just over 3, so no more biopsies. It kept declining, until it was less than 2 for three years in a row. Yay!, says me. No one would do anything further at that low level so that's sorted, as our British friends say.

Docs say don't do PSA, it's just misleading, blah, blah. So I had no checks anymore after 2008 through 2011, figuring when I hit 55 I'll check again. At 55 in 2012, it was 4.1; suspicious, but it had been up and down in the past. Check again in six months.

Six months later, it was 5.2. Well, beans; it's up, and at an aggressive annual PSA velocity of 2.2. So, apologetically I contacted a uro at Vanderbilt. Then a biopsy which unfortunately turned out to be very positive indeed. (Interestingly, the major visible tumor and bulging capsule EPE indication are about where Dr Lee's biopsy found inflammation 10 years earlier).

(Most of us don't have that info in our signatures due to the limited characters available for them.)

At what age did you start PSA testing?
--My first PSA test was at age 56 by my PCP after suspicious DRE. I'd skipped my previous year annual physical, but hadn't had PSA as part of any previous physicals

Do you recall what your first reading was?
--PSA was 9.4

How often did you test?
--That first test earned me a trip to the urologist - do not pass go, do not collect $200

How many years elapsed before it rose to a concerning level?
--My first test was well above a concerning level

Did it rise quickly over a short period?
--Don't know because I had no prior tests

If it rose slowly, did you shorten the time between tests?
--NA

At what level (reading) did they biopsy?
--After my first reading.

During the period from your first PSA to biopsy what level of care did you have; GP, VA medicine man?
--Uro sent me for biopsy as soon as possible -- a week or two after my first appointment.

After the biopsy results came back my Uro outlined possible treatments -- open surgery, EBRT-- daVinci didn't yet exist, though a few surgeons were doing manual "keyhole" surgery. He also referred me to a medical oncologist who was at the same teaching hospital so I would have a second opinion overview of treatment options before deciding what to do. Radiation was less well established in 2002 and the equipment wasn't as precise as it is now, but she explained newer studies showing results similar to surgery. I chose surgery, but was confident that I was treated openly and fairly and in no way pushed into one treatment over the other.

I started testing in 2002 after my father had PC cause i was experiencing symptoms of enlarged prostrate problem which i found out from a dre. I went every 2 yrs after that to have my psa checked just by my regular doc. Had a scope done of the bladder in 2004 to make sure every thing was all right. As you can see from my signature that i wished i had went to a urologist in 2014. Quess that i never thot it would happen to me. I'm pretty active guy. Running, cross country skiing, biking, snowshoeing, dont drink or smoke no ed problems and try to eat fairly healthy take a daily multivitamin and daily aspirin. I watched my father lose his life to liver cancer about 10 yrs after PC and then watched my Mother die a terrible terrible very painful death after 6 yrs of ALS. I PLAN ON BREAKING THAT TRADITION N LIVE TILL THEY CAN REBUILD ME WITH ROBOTS!!

Some good commentary here, thank you.
It all just reinforces the need to get on it early and keep regular checks.

My one and only was at Dx - 4.45 dropped to 3.2 after taking Cipro for 2 weeks ( although different lab )