Prostate Cancer Survivors






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Blood Test - Percent Free PSA -

TEST 1/31/2013
Prostate Specific Antigen (PSA), Total 3.4 ng/mL < OR = 4.0 ng/mL
Free PSA 0.2 ng/mL ng/mL
% Free PSA 6 % (calc) >25 % (calc)

I have been going over my prior blood tests and found this one from 1/31/2013 - approximately 3 years before my biopsy that showed high grade cancer. Never had a subsequent test for free PSA- Wish I knew then, what I know now!

I just plugged these numbers, with an adjusted PSA, into a calculator that showed a 70% and 47% chance of any cancer and high grade cancer, respectively.

Full disclosure is I adjusted the 3.4 PSA to 7.8 (3.4 X 2.3) because I was using Avodart.

Using the original 3.4 PSA the percentages became 65% and 42%.

To me, this result cried out to have a biopsy back in early 2013 when my cancer would have had far less volume.

My fault too, for not watching things closely but had two previous biopsies, last one prior was in 2008, were negative.

Re: Blood Test - Percent Free PSA -

My first concerning PSA was 18. A follow-up showed 16 and around 11% free. My urologist said not to worry. After a few months, my PSA was 24 and 10% free. Biopsy was performed, negative on 12 cores. Urologist said not to worry.

A year later, PSA was 34 with 8% free. New urologist had my cardiologist chat with me to recommend a new 20 needle saturation biopsy. This doc never took the time to actually speak with me about his concerns (PA's and then mention from my cardio doc). I didn't understand and wasn't made fully aware of what a saturation biopsy meant - and checked. I was also thinking about that first uro that said not to worry.

Move forward a few years.

PSA is now 76 and 7% free. MRI shows large benign looking nodules on the anterior. MRI was not transrectal, thus transition zone not imaged as well as could have been. But, a saturation biopsy will be performed next week (took a while to schedule an OR). My new uro doc will be sampling the anterior nodules and transition zone.

Upon doing my research and now understanding what the second uro doc was wanting to do two years ago, I would have agreed to the biopsy. Iwish he would have spoken more clearly about his reasoning and his concerns. Based on how my present fatigue level - walking to the car wears me out, mowing the lawn overworks me to the point of puking, plus increasing night sweats - my fear of metastasis is overwhelming me.

The upside is that transition zone cancers tend to be more curable with RP ... but that's when caught early. Due to the optimistic first uro doc, mine has had 6 extra years to grow on me.

Free PSA for some reason isn't realized an indicator as much as it should be. But then, even high PSA is dismissed by some urologists who should know better.

I really think the fact this data is so well buried in subscription only journals most people can't find is one reason it is overlooked, or worse, dismissed; but I'd hope doctors have better access and understand the numbers... though clearly my first urologist doesn't.

Re: Blood Test - Percent Free PSA - for GW

GW; Sorry to hear about the situation you are in and the apparent failure of the first Urologist. These stories are much too numerous. Competent testing almost always includes the free PSA test if the main PSA number is suspect. A low percentage of free PSA is another indication of cancer, sort of a back-up of the suspicion from the high PSA main number. Clearly he failed to submit to you the importance of pursuing suspicions further or just lacked the knowledge/experience to do so. Perhaps he also botched the biopsy he did on you, clearly missing the suspect area.
It is a situation we can easily blame ourselves for also for feeling we were not diligent enough to "know better". Best not to fall into that trap - it happened and now you are dealing with it and gaining the wisdom to proceed. Very few are knowledgeable about this when it is dropped on us. I, for instance, was in denial for a year before I finally decided I better check it out in more detail and learn the facts. I was more concerned about what damage a biopsy would do to a healthy organ than I was that I might actually have cancer. (That was a year more the cancer had to mature.)
So many seem so complacent about this disease. Hearing statements that say this disease is over diagnosed and over treated and statements that say, more men die with it than from it, lead some to think it is not that serious, when in actuality, it is serious and doing nothing is nothing short of gambling with your life. (If one is an avid gambler, this is the disease to have alright as nothing about it or its treatment is for sure - other than treatment will likely cause you some quality of life issues.)
On the subject of treatment decisions; is sexual ability more important than life itself? (If your hand developed gangrene, would you remove it or elect to live out what is left of your life with your hand until it finally killed you?) These choices SUCK but the answer should be obvious. It is devastating to lose your prostate and all it does but, is keeping it a little longer really worth the risk of that final consequence?
For various reasons doctors often do not accurately give patients needed details. Knowing the details maybe won't change anything and that is probably what they are thinking when they expect us to just follow along like obedient puppies with blind faith in something that is so serious and we are so ignorant of. Doctors need to be straight forward even when it hurts. Knowing details up front can save a lot of disappointment later on even when it doesn't change the outcome. I like facts and find surprises to be very disappointing when unprepared for them. (Read my survivor story.)
Anyway - GW, best of luck on your experience from here on. Keep a positive attitude - what other choice is there? Keep us posted. Jon.

Re: Blood Test - Percent Free PSA - for GW

My initial worry was the stories of folk having 3 to 4 biopsies before cancer was found. The risk of long term complications was a factor in my resistance to do additional biopsies.

Plus, I had no symptoms that bothered me so I adopted the "If it isn't broken, don't fix it." approach.

I really wish the MRI guided biopsy procedure was available four years ago. I would have done it back then rather than next week. Also, my syptoms are now bad enough they are driving me to find out what's going on; and any long term side effects of a saturation biopsy probably won't make my life much more miserable. So I may have to wear a diaper... might be better than the fear of dribbling onto my pants. And the prostate is soft enough I can't really enjoy sex. So even complete ED isn't that serious a worry.

Oddly - the symptom of poor ejaculation hints at a transition zone problem (if I understand the anatomy). And that was one of the places my first biopsy didn't sample.

As for attitude, I still take one step at a time; but I can't say I am optimistic at this point. I hope the biopsy finds something, even something bad, because that will end the doubt that is driving me crazy.