October 24, 2011

Uproar Over PSA Testing: Would I Have Been Better Served If I'd NOT Had the Test OR the Operation?

I've been following with interest the fallout from a federal task force conclusion that most men should not routinely get the PSA blood test for evidence of prostate cancer. I got the test back in 1994 and had my prostate surgically removed in 1995. A post-operative PSA test showed that cancer cells remained, and I've had the test every six months since then.

Now, the U.S. Preventive Services Task Force has concluded that the exam does not save lives and may even lead to harm for 20-30% of men. (These PSA recommendations are proposed and still have to go through a comment and review procedure.)

The task force stirred up similar controversy in 2009 when it recommended against routine mammograms for women under 50, and suggested screening at two-year intervals after that age. When a firestorm of protest erupted, the recommendation was withdrawn.

The 16-member task force -- which reports to the Department of Health and Human Services -- was established to perform an evidence-based assessment of preventive medical care. Its recommendations could affect what services Medicare and private insurers will cover. And under last year's health care reform law, their findings carry additional weight.

The PSA issue is part of a bigger, growing debate about our overuse of tests, drugs and procedures. Does this trend toward excess (which seems part of our culture) needlessly drive up health care costs and expose patients to risks? Does it help explain why U.S. healthcare is the world's most expensive, but hardly the best?

Prostate Cancer and PSA
Prostate cancer strikes more than 218,000 men in America each year. About 28,000 die from it -- the most common cancer among men, and the second leading cancer killer. But it often grows slowly, so most men with prostate cancer die from something else.

Although this cancer can be detected by a physical examination, the PSA blood test has become the most common diagnostic tool. Still, it’s not clear what exact PSA level truly indicates the presence of cancer. As a result, biopsies are frequent, and the cancer is often detected very early.

And when cancer is detected, it's not clear what should be done about it. The options include "watchful waiting,” surgery, radiation, and hormone treatments. Those last three options are likely to result in varying degrees of impotence and/or incontinence.

PSA, Prostate Cancer and Me
I began getting PSA tests every six months when I turned 60. Five years later – in 1994 -- my PSA number escalated. A biopsy showed the presence of cancer at state B-1 (A is so miniscule it often goes undetected; C and D cancers have probably spread beyond the prostate).

After consulting with my urologist and researching the issue myself, I narrowed my choices to surgery or watchful waiting. When confronted with a problem with choices "do nothing" or "do something," I’ve invariably opted for the latter, but I now wonder about that preference in this case. My prostate was removed in January 1995, the month after I retired. (I kidded my pal Bill Beltz, then president of BNA, that I scheduled the procedure so bills would go to Medicare, not BNA.)

My urologist said the biopsy on the removed prostate clearly reconfirmed the rightness of our decision to operate. He also said there wasn’t always such definite clarity in these cases.

Because my regular PSA tests through the years had shown such slow increases -- and as I dealt with Parkinson’s and other health issues -- I'd practically forgotten about the prostate cancer. But at my regular checkup last month, the PSA number jumped to 9.4, more than double the 4.04 reading six months earlier! My urologist urged me not to panic; we'll see where the number is at the March checkup. Hormone treatment may be down the road.

Bottom Line: Would I have been better off without the PSA test (or with "watchful waiting" instead of surgery)?
I've always told my doctors it’s the quality – not length -- of life that matters to me. I'm not interested in sticking around to get my 100th birthday greetings from Willard Scott if I'm unhappy and miserable.

For me, good sex has always been up there on my quality-of-life scorecard (though – sigh -- much less so in the last few years). For my family’s sake, I'll rein in my usual TMI tendency by just saying that the prostate operation did have its negative consequences in this area.

When I look at the 16 years of slow growth in my PSA number since the operation, I have to wonder: would I have enjoyed life more if I’d never been tested (and operated on)? I suspect I might have had a higher quality of life in the earlier years, and a lower quality of life later. And – oh, yeah – maybe an earlier death.

Weighing alternatives like these is a very personal matter. And the basic issue isn't whether or not to get the PSA test; it's choosing an option when the results are in. I'm turned off by all the "Obama death panel" blather. The government should be exploring how to control our ever-escalating health care costs by giving us the best information about drugs, tests, and procedures… keeping in mind that “more” may not be better, and that “more” might also be harmful.

But here’s where it gets tricky, and I get uncertain. Should we:
  • Let the government collect and provide the best information, but leave it to the doctor and patient to make the decision? This option probably wouldn't cut costs. Doctors are usually reluctant to recommend against a test or procedure. Many patients don't try to inform themselves or take an active role in managing their own health care. And families typically recommend the "do something" option.
  • Let the government and/or insurance companies play a more aggressive role by declining reimbursement for tests or procedures if evidence shows they don't do much good or even cause harm? The current PSA flap reflects the concern many people have that the task force's recommendations are moving us in this direction.
It’s a dilemma. I want to play an active role in these decisions, with my doctors. But I also think my doctor and I – like most other patients and professionals -- will tend to choose options that create needless cost and even unexpected harm.

What do you think? Are there other options? I’d love to hear from you.


AF Doc said...

PSA testing isn't that
expensive.  As an Air Force MD, I sure have a better track record of getting pilots to roll up
their sleeves than drop their drawers !  Besides, PSA starts rising before
any lump can be felt on a "finger wave".

John said...

Point well taken. I think most of the cost considerations that the federal panel cites result from what comes after the PSA test, not the test itself -- side effects from the biopsy for example, but mostly the costs and quality of life issue resulting from treatment decisions made after the test.  -- John

gimpy2 said...

I don't know much about PSA test but as for Mammograms ,for me the potential risks are worth it. As I understand any test using radiation has it's dangers and mistakes can be made in reading the test. Radiologist make mistake sometimes . But for me the risk is small in comparison to not know if I had cancer. I missed my last 5 mammo's and this year had a huge scare. Fortunately all was all right . But for woman like my grandmother cancer was found too late because the test were not done.It's better to be safe now than sorry later

John said...

This post was from gimpy2. I don't know why it came out with AF Doc as the sender. Another cyberspace mystery. 

Kalvin said...

Yes, those PSA tests and the reports I read make one wonder. Especially for a 75 year old man when it's usually slow growing and the test accuracy is questionable.
Many tests fall into that catagory. 25 years ago the doctors wanted to do a test on my pregnant wife to determine whether the fetus could have spina bifida. We asked about the accuracy and they said 90 percent. We skipped the test since we wouldn't abort a fetus with a 90 percent accuracy. Son was fine. 
You usually don't hear about the accuracy until AFTER the test. I went through the full set of cardio tests for my angina including a slice imaging and stress test. They showed nothing but THEN the doc says they are 87 percent accurate. He didn't think anything was wrong but the gold standard was an angio. I went against his view since I knew I had an issue and the angio found a 90 percent block.
So, tests make me feel I might as well be visiting a witch doctor at times. If a test leans towards one area...do you trust it based on accuracy? Then the harm from various amounts of radiation is another matter.  

Clair said...

A PSA test saved my husband's life, as well as my brother's. My father did not get his until it was too late. I know a man who is 49 who have advanced prostate cancer.
The biggest load of BS that I have heard over this issue is that, well gosh, Prostate cancer is slow-growing and all men will get it if they live long enough and (THE BIGGEST LIE) why something else will get you LONG before the prostate cancer does.
My dad was 88. It still got him. Look up celebrities that have died from this, and check out their ages. It is scary.
As for mammograms--not getting one because of radiation fears is not the best move. I am overdue atm, so I have to get in fast. I'm a believer in screening tests, as you've most likely guessed. I know women who were very good at their monthly self breast exams, found nothing, and then a tiny bit of cancer was spotted on a mammogram. There women are still alive.
I lost my sister-in-law a year ago this November to breast cancer. I realize that sometimes, no matter what you do, this stuff will get you. But it's like riding with or without a seatbelt--why take the risk?

John said...

Yet another snafu. This post was from Clair not AF Doc. Don't know what's going on here. 

gleeson1929 said...

I also get the PSA tests routinely, and it makes me wonder about the government's position.  I personally feel it's a benefit to keep tabs of the changes and how fast the numbers change.  The velocity rate along with "free" PSA, in my opinion, is a useful tool. 

Hob said...

A friend of mine has a PSA test annually.  The results of his last PSA test were high.  He has prostate cancer and is receiving treatment.  Presently, I chose to continue with annual PSA test.

GrandmaElvis said...

Sorry, I know this is an issue for men.....at age 59 my husband's PSA level had raised significantly......yet he did not have an enlarged prostate........and although his numbers were considered "low" they were still higher than the number they had been holding at for over 10 years.....he began getting annual PSA tests after age 45, so his urologist decided to do a small biopsy.........all was benign.  Only 6 mos. later, the PSA numbers only rose by 3, but again his urologist decided to do what they call a "diamond" biopsy.......4 small tissue samples from different areas forming a baseball diamond........cancerous cells were found in 3 or the 4 samples taken.....he had his prostate removed and is cancer free.  He goes yearly still for a routine PSA, even though the prostate is now removed and was not enlarged what so ever when it was removed........however the lab reports came back that the entire tumor was encapsulated in the prostate........his number now remains, so far at 0.01......which according to his urologist there is no absolute zero......and he is considered cancer free.  Whether age has a lot to do with this is possible, as it is "supposed" to be a slow cancer.  I still believe all men should have routine yearly PSA's just as women should have mammograms and PAP's.........sorry if you feel a woman should not have intruded, but GPE asked me to post this, as it is his opinion that since his prostate never did enlarge, cells could have broken loose further down the road and perhaps gone into the bone........radioactive beads were presented to him as a "possible" treatment too, but he opted to have the cancer gone if possible at his age at the time.......I am glad he made that decision.  GE

John said...

And this one was posted by Grandma Elvis, not John.

silverfoxx said...

My father, age 89, has been in treatment for Prostate Cancer for five years.  At age fifty, I'm now 67, I had my first PSA. The results indicated a problem. I dreadfully had a DRE along with a followup PSA, which again came back positive.  The DRE"showed" an enlarged prostate, NPH, nothing more.  Because of my fathers cancer and my NPH it is recommended by my doctor that I have a PSA and DRE annually.  It's called "watch and wait" for some reason.
Personally for me,  it's a pain in the a$$ (pun intended Magda)  but one I have to endure, to be sure!  Regardless of the hotshots in DC who complain about the costs, yet they themselves undergo the very same tests ... to be sure!

John said...

The first 10 comments that follow were first published on either the general or Parkinson's forums on  http://www.patientslikeme.com. I'm a member at this site, which is a gathering place for the exchange of experience, strength, and hope. It has sub-forums dealing with most major diseases.  Unfortunately, either due to my ineptitude or  flukes in the blogger software, the names of the comment authors didn't appear their comments but often showed up elsewhere. I've tried correcting this but it's still a mess. Sorry.