Greetings from sunny Florida! This is Chapter 1 of what I hope will be a very long and very boring story.
Fortunately about 5 years ago, (because I was finding myself urinating more often), I purchased "The Prostate Book" by Dr. Peter Scardino. From what I learned in that book, I knew to have my PSA checked annually, and I figured (being the pessimist I am), that it was only a matter of time until my PSA would raise enough to demand attention.
So when my doc told me my new PSA had doubled to 4.2 during the last year, and asked if I wanted him to recommend a Urologist, I didn't immediately panic. Instead I mumbled something like, "let me get back to you on that" and left to find my old Prostate Book. [Sun Dog was wise not to panic. No decision on treatment or biopsy should ever be made on the strength of a single aberrant PSA test. In about two thirds of men with an unusual PSA no cancer is detected - see PSA 101 for more information.]
I re-read it almost non-stop, in-between searching the Internet to learn everything I could about my new problem. (And luckily found YANA and some immediate words of comfort.)
For this 71 year old man, that Prostate Book (written in 2005) provided some slight immediate relief with a chart on page 137 "NORMAL RANGE OF PSA LEVELS FOR MEN IN EACH AGE GROUP" , with 4.6 - 6.5 being "normal" for men 70-79. (So - perhaps I was normal and was worried for nothing)? Now after 3 weeks of study I understand that it may not be all that simple!
I then read and recommend:
Dr. Patrick Walsh's Guide to Surviving Prostate Cancer (Excellent - the "Prostate Bible")
Bob Marckini's You Can BEAT Prostate Cancer (From the patient's point of view).
R. Blum & Dr. M Scholz's Invasion of the Prostate Snatchers (Most entertaining)! [Other suggested reading is on the Resources Page - page down there]
I learned much from all three books, but also clearly sensed how everyone pushes their own agenda in this puzzling Prostate Treatment world. [This site tries to maintain strict neutrality, being mindful at all times that it is the individual's ultimate choice that the path he decides to follow is his own and that of his family, based on his particular circumstances.]
About me. I'm 71 years young, in reasonability good health; about 30 lbs overweight, and have some mild heart problems. Here's my PSA history.
Two weeks later I returned to my family Doctor for a DRE (Digital Rectal Examination) (he stated that it is enlarged (which I already knew) but smooth without any obvious problems). (A couple previous DREs had been the same).
My immediate problem was to find a UROLOGIST - The experts say, find a neutral Urologist - this seems to present a problem as my doctor simply smiled and explained that by definition all Urologists are surgeons. On YANA advice, I've made an initial search for an Oncologist who specializes in Prostate Cancer, but this may not prove to be practical (as my doc said, most Oncologists are experts in other cancers). I live in Florida, so there is no shortage of Urologist's.
My first hang-up is all I have read about prostate biopsies. - I've already read way too much about this primitive idea. (It seems incredible that when I get my Colonoscopy test, they put me to sleep and the insurance pays for it, but with this invasive biopsy procedure, they expect me to "man-up" and take it?). My research seems to indicate a growing awareness of the downsides of prostate biopsies. Not just the infections, not just the recovery time, but the (slight) suspicion (even within some in the medical community) that the inflammation caused by the biopsy may even help promote progression of metastasis. [There is no good evidence to support this concern. Looking at the wider picture, given the hundreds of thousands of prostate biopsy procedures undertaken each year, as they have been for the past twenty years or more, surely there would be more metastasized disease diagnosed? But that is not the case. There are times when in the absence of scientific evidence, it may be possible to look at issues like this logically.] It seems to me the prudent way to go forward is to avoid a biopsy for as long as possible. (And yet maybe that isn't prudent, all of which makes this such a puzzle).
Seems like the Prostate Cancer Game is all set up for your scores - if you don't have a biopsy, you lack a full set of scores to participate! Still I realize that a biopsy may be the only method to determine if cancer actually exists and get a Gleason score and stage, but, I'm not immediately ready to face up to a biopsy (let alone a cancer treatment), without some better indication that it is justified.
So at least initially, I will be an Active Surveillance guy, at least until I've got a much better feel for this new territory. (But at the same time I realize that if conditions warrant, someday I may have to spin the Prostate Cancer Treatment Wheel of fortune.) I had my own agenda for my initial meeting with my new Urologist (no biopsy - my prostate wants to remain a virgin as long as possible). My main goal was to try to get a feel for if he might support an Active Surveillance approach (without a biopsy - possibility with MRI-S or other newer, non-evasive dialogistic approaches).
NOV 15, 2011 - MY FIRST UROLOGIST APPOINTMENT
I ended up going to the Urologist recommended by my family doctor (also recommended by a good friend), and associated with a large local Urology Center here in Sarasota.
This first meeting was quick and business like. (I was so naοve I asked where the men's room was while waiting in the waiting room - the nurses just smiled and told me not to worry. (I learned it is apparently standard procedure to begin each meeting with a Urologist with a urine sample, so they want you ready).
The appointment went quickly, after a brief medical history review and BPH (Benign Prostate Hyperplasia) discussion; I had an Ultrasound to check my urinary retention (OK), and a DRE. The doctor then set up my game plan - tests for PSA and Free PSA in 2 months with an in-office PCA3 test. [The results of a PCA-3 test are, it is suggested in some studies, no more cancer specific than a normal PSA test - see this exchange.] While we never got any time for any "Active Surveillance" talk, he is proceeding relatively slowly (which I wanted), and the word "biopsy" never came up! (Yet!).
I realized on the way home I failed to actually hear the results of his DRE, will probably find out at next appointment in 2 months.
My appointment proved Terry's advice (In his PSA 101 article) that the PSA test can vary 30-33%.
(The whole reason I went to a Urologist in the first place is because my PSA went up to 4.2. At that time I did the math and figured if it can vary 33% perhaps it is really only 2.9 or so).
And yes you guessed it, now my PSA came back to exactly 2.9! (Which then suggests that since it can vary by 33% - perhaps it is really is 4.2? (Is this PSA confusing or what?)).
All of which, combined by the excellent advice I get on YANA from Terry and you guys continues to make me focused upon avoiding a Biopsy as long as possible (Hopefully Forever?).
Actually the Urologist (again) never mentioned a Biopsy, simply canceled the PCA3 test he was scheduled to do, and reported that my DRE was normal, and my Free PSA test results didn't matter since they are only useful when the PSA is between 4-10. (FreePSA = 28%) and told me to come back in a year!
I have been working very hard since this whole experience started last fall, to use it to motivate me. I have been exercising 40 minutes daily on the treadmill, almost stopped red meat completely, cut down on my eating, and stopped drinking Milk and now only drink Soy Milk. I have lost a good 10 lbs and will be trying for 10 more by next year. Perhaps some of this helped lower my PSA? Who knows?
Still I clearly have BPH. I hoped to find a YANA-LIKE website for BPH guys like myself, but have not been able to locate one. I have all the classic symptoms, weak flow, up 4 times a night, etc. My Urologist advised me to live with it as long as possible, then he will put me on a new combo drug that combines both dutasteride and tamsulosin.
I am also currently trying a supplement "Urinozinc Prostate Formula" (which I have little faith in but it can't hurt).
One thing about all this, I keep having to learn new terms like "AUR" (Acute Urinary Retention), something I hope I can also avoid!
Here we go again!
I had my annual checkup from my regular doctor - he did a PSA - and the results went sky-high in no time.
(Forever until 2010 PSA = about 2.3)
Sep 2011 PSA = 4.2
Jan 2012 PSA = 2.9
Apr 2012 PSA = 10.96 <<< (in 3 months?)
All tests from the same lab. Makes one wonder?
So here we go again - seeing my Urologist soon.
June 25 2012
Latest PSA = 6.9 (Down from 10.96) but still "high"!
Free PSA = 12% (Not so good).
(When I got the 10.96 PSA in Jan I was shocked and not totally sure that I had "prepared" myself completely.)
So I wanted to be sure (as one can be) that this latest PSA was taken under ideal conditions no sex, exercise, or alcohol, for 3 full days prior to it. The result being (in my mind) that 6.9 may be pretty accurate.
My urologist gave me a choice of scheduling a biopsy or watchful waiting a couple months I took the "Active Surveillance" choice to wait and have another PSA in late August.
Currently I notice I am still one of the very few (if any?) YANA members that have a "virgin prostate" - never had a biopsy (yet) hence I do not have a "Gleason Score". My understanding of this "Prostate Journey" is that it is totally geared to a locked-in sequence (for logical reasons), still I find myself wondering if anyone does long term "Active Surveillance" without an initial biopsy
[I know of two men who did this. Barry Litchfield posted his story; the second man has not yet done so, but his outcome is similar to Barry's. My personal view is that it may not be the best idea to avoid biopsy if there is serious concerns about the presence of prostate cancer.]
I guess that could be a major mistake, I guess it is inevitable that I will probably need to have a biopsy soon!
I continue to gain knowledge on possible treatments
.I was pretty sold on Protons, but lately in view of the recent study, I'm learning all about the Cyberknife. I have a few questions I will post on the discussions.
PSA Lesson 101: A big increase in your PSA in a relatively short time is probably NOT caused by cancer.
(Quick recap) I was shocked in April 2012 when my PSA went to almost 11 but
2012 April Total PSA = 10.96 Free PSA = N.A.
2012 June Total PSA = 6.9 Free PSA = 12%
2012 August Total PSA = 4.3 Free PSA = 14%
It seems to me that the Unary Track Infection I had in Feb 2012 caused this big PSA spike ! (I had chills and fever needed Cipro to get over it but only had 5 days of Cipro so now I'm guessing that wasn't enough and the infection has hung around awhile gradually getting better and better resulting in the PSA dropping. [Bladder and urinary infections are notoriously difficult to deal with]
Again my urologist told me I should have a biopsy, again I told him no thanks (for now). (Another urologist has informally advised me that as long as my PSA is dropping, I can delay a biopsy.), My doc and I agreed that we'll wait another 3 months to see if it can work its way down to the 2.9 it was a year ago.
A little thinking out loud why do I not want to have a prostate biopsy?
(Here I will give our esteemed host Terry an opportunity to express his often repeated, "there is no clinical evidence to support this etc., etc., etc.")
Reason #1 Can cause serious infections possibility requiring hospital stay.
Reason #2 Always causes inflammation in the prostate (some believe inflammation is somehow connected with cancer growth.)
Reason #3 May cause temporary E.D., Blood here and there, etc.
Reason #4 I (Like author Ralph Blum - Invasion of the Prostate Snatchers) have an instinctual fear that a biopsy possibility can spread the cancer).
[All good reasons. There's nothing wrong with a bit of instinctual fear, even if there is no scientific evidence!]
So currently I am still a prostate virgin and kind of doing "Active Surveillance" but skipping the biopsies.
Am I totally confident in this approach? NO! (But by now we have all learned that it is not possible to ever be totally confident even if you've had your prostate removed)!
Do I have some reasons for continuing without a biopsy for as long as reasonability possible? YES. They are
Reason #1 Absolutely no history of prostate cancer in my family not my father, or uncles, or my 2 brothers have had prostate cancer.
Reason #2 As recently as 1 year ago (at age 71) my PSA was only 2.9
Dr Peter Scardino's (and many other age related charts) state that for a man over 70, "normal" PSA is in the range of 0 to up to 4.6 6.5 (my current is now 4.3 ) so according to those figures I'm "normal" why risk a biopsy?
Reason #3 Finally my firm belief (supported by many others) that by 70 almost all men have some traces of (Indolent) prostate cancer in them that likely will not kill them so why go looking for it?
I'll close with the thought that I'm keeping all my options open I'm possibility interested in doing some kind of "Pre-biopsy" Imaging, and will get a biopsy immediately if it seems warranted.
I joined the "club" last week (I guess I always knew I would eventually have to do it), that is, my prostate is no longer a virgin), I had my first prostate biopsy.
Since my initial "abnormal" PSA test that went over the magic 4.0 number, (a year and a half ago), my Urologist has been urging me to have a biopsy.
(Latest 3 PSA tests: 4.3, 5.7, 6.0)
Even though my studies and research make me believe that biopsies sample such a small percentage of the total prostate volume, it seems inevitable that they are more likely to miss small cancerous growths rather than find them, after reading many YANA men's experiences I did conclude that biopsies do provide some important "overall information".
I found myself worrying that with my PSA hovering between about 5 and 7, there is the possibility that parts of my prostate could be " fairly filled with cancer" while I walk around completely ignoring it. (And if this turned out to be the case in the future, I'd have a hard time accepting the fact that I ignored the test that could have helped me know more about my condition than I currently do).
So with the help of a few email forum pals urging me to get it (Including our host Terry who told me "it may not be the best idea to avoid biopsy", I finally did it.
After reading so much about this procedure, I had a serious discussion with my Urologist explaining how I would be a nervous wreck; he assured me that he does everything necessary to make it relatively quick and easy.
Per his prescriptions and instructions, (and a couple fleets enemas), I started the morning with one 10mg Valium, a Cipro the night before and in the morning, and 6 (3 grams) Amoxicillins before and 3 more Amoxicillins 4 hours after, and even yet some other antibiotic shot in my butt
, and another Cipro that evening! (This seems extreme overkill but who am I to say I hope it all works and I don't get an infection)?
The biopsy started with a probe that injected pain-killer in each side of my prostate, I would say I hardly even felt it (way less painful than the dentists shot into your gum). Then he took a number of ultrasound pictures and measurements, while the pain-killer kicked in, and started the procedure, and it went like others have described, only heard the clicks, didn't feel any pain. Maybe because of the Valium, I didn't even try to count the clicks. He had an assistant helping him and the whole thing didn't seem to take more than 2-3 minutes.
So all that anxiety and stress over the thought of having a biopsy was over, and in retrospect I thought they did a great professional job, and if I need one again in the future I will be way more relaxed about it.
They had thoroughly prepared me for what to expect afterward, so I wasn't surprised when I first peed in pink. (But I must say that I was slightly shocked with the ejaculation experience after the required 72 hour abstaining) clearly you want to try this in private.
Anyway, so far so good, (knock on wood), no signs of an infection, just been taking it easy and waiting for the results.
12 out of 12 cores negative for cancer. But the big surprise was my BIG prostate, same as my age, 72cc!
My urologist said that may explain my 6.0 (latest) PSA, (fudge words of course since no one can be totally sure about anything much concerning prostate cancer). He explained how mis-leading the DRE is, in the past he had felt reasonability sure my prostate was more normal in size and this surprised him.
He explained that if my prostate continues enlarging even if I (don't have / or never get) cancer, it will cause many problems, so he put me on finasteride to shrink it down and also explained that watching PSA thereafter can help determine the possibility of aggressive cancer (or not). Anyway, we'll see how this works out.
After 6 months on Finasteride my PSA has dropped from 6.0 to 2.7 (almost textbook).
I may have slightly less libido (or it could be simply cause I'm getting older). Urination seems stable at once or twice a night (not a problem), and no other problems.
Nothing else to report other than I'm pleased that I found YANA when my PSA went over 4.0 (and over the last few years has been as high as 10) and so continue to follow Terry's "Don't PANIC" advice!
Had my 6 month checkup in Feb, 2014. (I am now on Finasteride for about 1 year). PSA now just 2.0 My doc said I'm doing fine and do not have to return for a year. I asked him if I could slow down on the Finasteride, he said we'll try a half pill daily. (I suggested how about a whole pill every other day as I've read it stays in your system for a long time) he said no, break them in half. Minor issue is they don't break in half very well, so I'll do one every other day.
Had my 1 year checkup in Feb 2015 (I decided to cut my Finasteride intake in half, so I take a pill about every other day). My PSA was 2.7. I only see my urologist once a year now. (I do realize that my actual PSA count is 5 or 6 - SO WHAT? Pretty normal for a 75 year old).
(As an aside, my urologist got cancer and retired, so I have a new one).
I learn as I get older, that "old age" consists of many trips to many different doctors! I had been troubled with severe gout in my ankle, I could hardly walk, got put on Allopurinol and it has solved that problem.
Then I was informed that I have a "blood condition" called "E. T." and had to learn all about blood diseases (just as I learned about prostate cancer). My blood condition relates to my body producing too many platelets had a bone marrow biopsy to confirm the condition. It is somewhat like watching your PSA, only now I track my platelet count every 90 days.
Like PSA tracking, my platelet count appears far from definitive, has changed wildly during the past year. My only treatment (so far) is one whole aspirin per day.
I'll close by offering this: I remain so thankful to Terry for YANA I am so thankful that when my PSA went over 10 I did not panic and have some medical procedure that might have done more harm than good. I have used this experience to help in facing my blood condition.
I missed my yearly Urology appointment because I had another "old-man" problem, (bleeding hemorrhoids isn't getting old fun?), and was not about to let anyone poke around back there.
Just completed my re-scheduled appointment this morning, and was surprised at my PSA is only 1.18 (NOTE: I am on Finasteride every other day), so as most of you guys know, my actual PSA is maybe double that, or 2-3, which my Doctor says is just fine for a 76 year old.
Once again I can only thank Terry (and now Mark), for maintaining YANA, and keeping me from PANICKING when my PSA went over 10 a few years ago.
Sun's e-mail address is: email@example.com