Monday, January 17, 2011

Prostate terror


My first post here in a long, long time will be a simple one about the cheery topic of prostate cancer. When I started this blog I saw prostate cancer as an old man's disease. In the intervening years (a) I have learned it can strike (and strike hard) at younger men, too, and (b) I have gotten older. So here I am. Mainly this post will be a way to get everyone who has asked up to speed in advance of Thursday's biopsy and -- more importantly -- the results.

So here's the scoop in Q & A style. Unlike most of my posts, in this case the As are based on actual Qs.

What is a prosrate?
A prostate (note the lack of an 'r' in the word -- common mistake) is a part found only in the male model of the species. It is wrapped around the urethra. It actually serves a reproductive function but I'll let you have that discussion with your mother or father. What's pertinent here is that sometimes it gets bigger. That can generally be due to benign (i.e. not cancerous) prostate hyperplasia (BPH), prostatitis, or prostate cancer. When it gets bigger it can cause problems with the flow of liquid through the urethra (i.e. difficulties peeing). A bigger prostate also tends to produce more PSA.

What is PSA?
PSA stands for Prostate-Specific Antigen. It's a protein that only prostate cells produce. PSA actually has a reproductive function but that is of absolutely no value whatsoever to me now. Some BPH naturally gets into the bloodstream. However, if the prostate is under stress it may "leak" PSA at a higher rate. And if cancerous prostate cells have escaped the prostate and lodged themselves in bone or elsewhere in the body, the PSA level in the blood can go quite high.

All men 50 or older should have their PSA level checked annually. A high number or even a low one that is rising can indicate BPH, prostatitis, or cancer.

What is a high number?
PSA is usually reported as nanograms per milliliter of blood (or ng/mL). Generally numbers above 4 ng/mL are considered high enough for concern and possible biopsy. Sources differ, but "they" say a man in the age range 50-60 with a PSA between 4 and 10 has about a 25-30% chance of having a positive prostate biopsy for cancer. Above 10 ng/mL the odds start to go higher than 50/50 that it's cancer. From my layperson reading of people describing their cases anecdotally, it sounds like above 20 you really need to get on it right away, because there is a more significant chance that PSA is being produced by prostate cells that have moved to other parts of the body.

Fifty? But aren't you . . .
Forty-three. Right. So at my age the "high" category lower limit is adjusted downward to 2.5 due to the fact that prostates (and therefore PSA levels) tend to increase gradually as men age. I can't find any references to the the 10 or 20 limits being lower for a younger guy but that would make sense. I just don't think there's much if any research on it.

Unfortunately my PSA has been above the 2.5 level 40 year-old limit since we started testing it when I turned forty.

But didn't you say men should be tested at age fifty? And aren't you . . .
Forty-three. Right. But testing is also recommended in men starting at age forty if they have a family history of prostate cancer.

Oh, so you must have a family history of prostate cancer.
Actually no. But when I turned forty and my doctor asked that question I thought I did. My maternal grandfather had a long history of BPH starting in his early fifties. I didn't know the difference at the time, so I erroneously said I had a family history, and I got tested. As the urologist said, "the horse is out of the barn." If it turns out to be cancer I'm going to be very glad I made that mistake. In fact, contrary to the much more qualified experts on the subject, my less qualified layperson opinion is that all men should start getting tested at age 40.

And your first tests said no cancer?
A PSA test doesn't actually tell you if you have cancer but it does help make the decision of when you should have a biopsy. My initial numbers were a little high for my age but my doctors determined they were not high enough for a biopsy yet. Here's how it went:

2008-03 - 2.6 - First test was just over the limit for someone my age
2008-06 - 3.4 - Uh oh. Repeat is significantly higher. Off to the urologist.
2008-07 - 2.5 - Different lab. Urologist calms me down and talks me out of a biopsy.
2009-11 - 2.9 - A little higher but still in that high-two range.
2010-12 - 6.4 - WTF!? Total freak-out. I force a repeat just one week later.
2010-12 - 4.7 - Okay . . . that's better than 6.4. We hope it's "trending down" and wait 30 days
2011-01 - 5.2 - Sh*#. That's not trending down. Urologist orders a biopsy.

So that's where we are now.

Can't lots of things cause a high PSA though?
Yes, there are other causes. BPH can cause a higher number, but generally not as high a number as mine, particularly in someone my age. BPH doesn't cause prostate cells to leak PSA at nearly as high a rate as cancer. Prostatitis can cause it, but prostatitis is usually painful. I don't have any pain. Some believe that some forms of exercise (especially cycling) can cause a temporary increase in PSA, but it wouldn't cause a 5.2 in a normal 40 year-old prostate. Activities in which the prostate is put to work (ask a parent) can also temporarily cause a higher number but we . . . made sure that wouldn't be a problem before the last two tests.

So while a PSA as high as mine can be caused by things other than cancer, and in fact statistically it appears that the odds are against it being cancer, the lack of other explanations is very troubling. And the fact that it seems to be following a rather steep trend line up also seems more suggestive of cancer than of other causes.

If it is cancer, though, don't worry. Prostate cancer is very slow growing and men almost never die from it.
Prostate cancer is most often slow growing. My numbers are pretty high for my age, though, and worst of all they seem to be following a rather steep trend line. That would suggest a more agressive kind of cancer. One recent study suggests that the rate of change, known as "velocity", is the best predictor of agressive cancers and poor outcomes. That study weighs heavily on my mind.

I know a guy who has prostate cancer and they're just leaving it alone and keeping an eye on it.
That "watchful waiting" is sometimes done with men who are significantly older than I am. In my case, if they find cancer, and if it's anything less than the worst kind that has already spread all over, I'm going to be eager to get that prostate out of there.

Can't that surgery make you incontinent? Or was it impotent??
Both, actually. In some cases. In my case, because of my age, odds are pretty good of overcoming both. But those are high stakes so I would rather not have to make that gamble. That's just part of the reason I want so badly for the biopsy to be negative.

If the biopsy says cancer, though, I want the thing out. I'll deal with the consequences if and when they become a problem.

There are alternatives to surgery.
Yes, there is radiation treatment and even the placement of little radioactive rods in the prostate to kill the cancer. In general, though, once radiation is done surgery is no longer an option. And "watchful waiting" is generally done with older men.

No, if there's cancer in there, and if it hasn't spread to the point that it's too late, I want the prostate out.

Hopefully the biopsy will be negative for cancer and then you'll know you're free and clear.
I SO hope it's negative, and I'll feel MUCH better if it is. A negative biopsy would certainly rule out advanced prostate cancer and mean the odds were even lower that it had spread. But just to put a negative spin on that hopeful perspective, a biopsy that is negative for cancer doesn't necessarily mean no cancer is in the prostate at all. It just means that cancer wasn't found in any of the little samples they pulled out of the prostate. If my PSA numbers stay high, or even worse continue to rise, I can expect more biopsies and more anxiety in the future.

When will you get the results?
The biopsy is Thursday morning. The urologist said to expect a week to get the results. I hope it isn't that long. I'm hoping that the urologist doing the biopsy can also tell us something based on what he sees on the ultrasound used to guide the biopsy.

We'll see!






4 comments:

Anonymous said...

Love you, LOVE YOU!!! That's what I want to say...to tell you to try not to worry is useless....hugs coming your way!!! Will be thinking about you!!!! (Jerry will be too!) xooxxooxoxooxoxxo Kathy
p.s. Our prayer for you Scott, is that you're fine...good even..that this is just some type of "life" thing you have to deal with right now....

Anonymous said...

Thank you for being so informative. My husband starting at age 40 has it checked every 2 years at his physical where they do bloodwork. My grandfather had what you explained about the radiation used for older men. He is now 92 and 10 years cancer free!
It is great that you are so knowledgable about this subject, after all you must be your best advocate.
On a personal note, I am sorry that you have to go through all of this health anxiety. It is really awful that you have to dedicate so much of your thoughts and energy to this. You are in my prayers. I am happy for you that you have a wonderful family to be by your side.
Jennifer Stegbauer

Clara and John said...

I was similarly "scared" some 10 years ago and watched the PSA closely, and ultimately DID get a biopsy w/negative results. BUT I can appreciate your feelings.Currently I have a 2.2 reading but that was April 2010Comments from the sheet....."PSA levels may fluctuate up to 30%. Changes of PSA levels over time ("PSA EVAL: velocity")are often more useful than a single PSA for levels 0-4 ng/mL.Good luck Scott, our thoughts/prayers will be with you...Clara and John

Unknown said...

I am thinking about you and Sarah and hoping for strength and patience for you both as you endure the next week of waiting. We have had a few health scares in our own family and the waiting for results is always completely miserable -- periods of imagining worst case scenario and at the same time convincing yourself everything will be fine.

Love to you both,
Elizabeth Veeser-Sharer