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‘The dogs are never wrong’ or how to avoid an avoidable cause of death

Posted by John Reed on

After age 50 or so, most medical plans in America have men get a PSA blood test. If your score is below 4.0 in your 60s, you probably do not have prostate cancer. If it’s above 4.0, maybe you do. It’s a maddeningly inaccurate test for the purpose of determining whether you have prostate cancer. Other conditions and some activities like sex and bicycle riding can raise PSA scores. Canada and some other medical plans stopped giving the test routinely. My score started to go above 4.0 some years, then back down, then back up.

Here is a quote from the Harvard Medical School web page:

“Noncancerous conditions, including benign prostatic hyperplasia (BPH), or an enlarged prostate, and prostatitis, can raise PSA levels. In fact, studies have shown that about 70% to 80% of men with an elevated PSA who have a biopsy do not have cancer. However, many men undergo an ultrasound and prostate biopsy, to be certain.

“Conversely, the PSA test doesn’t detect all cancers. About 20% of men who have cancer also have a normal PSA (less than 4 ng/ml), so the test may give some men a false sense of security.”

If it goes even higher than 5 or 6, that’s even more indication you should get a biopsy. I did NOT because of all the media coverage about what a lousy test it was. But I did read a couple of books about prostate diseases. One, the Harvard Medical School annual report on such diseases (http://www.health.harvard.edu/special-health-reports/2016-annual-report-on-prostate-diseases), has a first chapter about new developments in the prior year.

Dog are the best diagnosers of prostate cancer

In 2014, two Italian doctors taught two German Shepherds to detect prostate cancer by smelling a urine sample. “So get this test,” I wrote in the margin. And I did.

I went to Milan Italy, which was where those doctors were, gave them a urine sample, then toured Europe with my wife. I did that to get the dogs to say, “You do not have prostate cancer. The PSA was a false positive.”

Two weeks turned into five months

They said I would hear in two weeks. Because of an injury to the doctor, it ended up taking five months. The dogs are not at the hospital. They work for the Italian Defense Force and live at an Army base.

When I handed the cup to the doctor in Milan, he said, “The dogs are never wrong.” (99% accurate when they indicate positive; 97% accurate when they indicate negative)

The dogs’ diagnoses

On November 19, the dogs said, “You have prostate cancer.”

I immediately told my doctor. He immediately referred me to a urologist. He scheduled a biopsy, but not until December 21st. The biopsy confirmed that the dogs are never wrong. I had 4+3=7 Gleason score prostate cancer. My PSA at that point was 11.3. Also stage T1c. 11.3 is low intermediate (10.0 to 20.0). So is T1c. 4+3, however, is high intermediate. The first digit indicates the predominant type of cancer in the samples. Higher is worse.

Surgery or radiation

Damn! The indicated action is either remove the prostate by surgery or radiate it. Surgery struck me as a rifle shot; radiation, a hand grenade. Too much other collateral-damage stuff down there for hand grenades. I chose surgery.

Had I detected it sooner, there were some other, less radical treatments that would have been sufficient. I screwed up not detecting it sooner so I could choose one of those. Although a friend did catch it earlier and had brachytherapy, which finishes it 90% of the time. He recently learned he was in the 10% and it had spread.

The first surgeon I was referred to used the robotic technique. That is much easier on the patient, but the surgeon really has to know his stuff to get it right. Also, robotic surgeons are the most popular because the procedure is so easy on the patient. He could not do it until May.

An abortion clinic with a ten-month waiting list

In my research, I read that you can wait up to nine months without risking a worse result. But if you wait MORE than nine months, you are likely to get a worse result, namely the cancer spreads beyond the prostate, a.k.a. metastasizes.

The doctors said the clock started on the nine months when I got the transrectal ultrasound 12-needle biopsy. As far as I was concerned, I got the biopsy on June 15, 2015 when I handed the doctor the urine sample—five months before the needle biopsy. On November 19th the dogs said, in effect, “You had prostate cancer back when you generated this urine sample on June 15th.” May would have been ELEVEN months after I generated the urine sample!

The medical profession does not yet recognize the dogs, but I do. The dogs are never wrong.

ASAP, not May!

“May, my ass,” I said. “I want it out ASAP.” So I got referred to the top-rated urological surgeon in Northern California in my HMO. But he is NOT robotic. He does it the old-fashioned way—the scary technical name is open radical retropubic prostatectomy. My surgeon also routinely removes nearby lymph nodes without waiting for any indication they were cancerous. Plus, he was highly trained and experienced which I wanted because this is a difficult surgery in a crowded area of the body. Because he does the “open” procedure rather than robotic, he had a much shorter waiting list. He could do it ASAP. 

The soonest you can do it after the biopsy is about five or six weeks because the biopsy (pretty terrible) injures that area of the body and it needs to heal. He said the soonest I could get it was 2/8 and he was available that day. “Do it!” That was eight months after I generated the urine sample.

‘Positive surgical margin’

He did the surgery. The next important event is the pathology report. That’s where they examine the removed prostate. It was good news and bad news. The good news was the prostate as a whole was not as bad as the biopsy sample: 3+4 rather than 4+3. The bad news was “positive surgical margin.” That means the cancer had “punctured the capsule.” That means it went through the skin on the gland to the outside of it.

Damn!

Post-surgery PSA test

The next event is the first post-surgery PSA test. If they got it all in the surgery, the score should be 0.0 or 0.1. If it’s higher, it had spread microscopically before the surgery—metastasized—and you have to start getting radiation treatments. I think they give you a “years until you die of the cancer” figure then.

Yay!!!

I gave the blood sample yesterday. Today my surgeon gave me the “great news!” Subject line: “Perfect PSA” <0.1

Cancer is diagnosed as either an operable or curable stage or an inoperable or incurable stage. Today’s news sort of says mine was curable and cured. I have to continue to get PSA tests every three months for a while to make sure.

Old people talking about their health problems

I normally do not like to talk about my senior adventures in health care. That is one of the knocks on old people—sitting around talking about their arthritis and all that. However, my family said my telling readers about this articular adventure would probably save some lives.

PSA tests give a lot of false positives—with regard to prostate cancer. It’s actually fairly accurate if you understand it means not that you have prostate cancer but that you have something going on in your prostate which could be an infection, recently had sex, recently rode a bike, has prostate cancer, etc.

Turns out, MY positive was NOT false. I screwed up not getting a biopsy after the first several high PSA scores. Going to Italy was smart and moving decisively and ASAP once the dogs gave their “never wrong” second and third opinions may have saved my life. But I cut it too close, unnecessarily close.

Dog urine test should be available everywhere

It is an outrage that the dog urine test is not available everywhere and being administered annually for all men over about 40 or 50. Why not? Apparently because no one has funded a 60,000-man study. But no one is going to do that when there is no expensive prescription medicine or device patent at the end of the study rainbow. Like I said, an outrage.

The cost of training the dogs would be minimal. The cost of doing the study needed to get the FDA or urologists society to say it’s “safe and effective,” astronomical. I don’t know the cost of the dog study, but the average cost of getting a new drug approved is now around $1.3 billion because of FDA bureaucracy and regulations—which were waived for HIV leading to a fast solution: the cocktail of drugs taken by Magic Johnson and others. Waive them for the dogs, too. 71 Americans die a day from prostate cancer.

But the bottom line is 26,000 Americans are going to die this year, arguably because the docs won’t approve the dogs. The implications is that the patients not getting PSA tests any longer whose lives would be saved by the not-yet-officially-approved dog test are expendable.

A relatively poor philanthropist

We need a philanthropist. Actually, it could be a relatively poor philanthropist. Dogs that can sniff illegal drugs, the enemy, IEDs, trip wires, explosives, cadavers, track people, help the handicapped, and so on are ubiquitous. It’s not rocket science. A bunch of high school dropouts could probably do the training.

The protocol should be that you get PSA tests and that urine-sniffed-by-dogs test. If the PSA is a little high, but the dogs say no, you probably should not get the biopsy. You need to talk to your doctor about that, not me.

But if the dogs say you have it, get the biopsy immediately like I did. The current guidelines ignore the existence of the dogs and often refuse to do even the PSA—because it costs the overall group more to do the PSA tests and biopsies on false positives than it is worth to save the relatively few lives that would be saved by the PSA test.

Are you expendable?

About 26,000 men die a year in the US from prostate cancer, and we do the PSA screening for most men who get annual physicals. In Canada, where they refuse to do the PSA tests routinely as not cost effective, I guess about 2,600 men die of their undiagnosed, untreated prostate cancer.

They are expendable in Canada and I would imagine in the UK and other places with single-payer, rationed medical care. I predict Obamacare, if it continues, will have its death panels adopt the Canadian policy before long: no routine PSA tests. That would raise our 26,000 deaths figure.

We abandoned the Marines and civilians on Wake Island in World War II. Hundreds died as a result—once. “They were expendable.” That is the attitude about you with regard to prostate cancer in Canada and in some US health care plans that do not do routine PSA testing. Only it’s not hundreds who die; it’s tens of thousands and its annual, not once.

Get the tests and the biopsy when indicated

If you can get the urine test, do it—annually. If you can’t, at least get the PSA test and get the damned biopsy when your urologist recommends it.

Avoidable ways to die

There are a number of ways to die that should kill no one. Colon cancer is one, I saw a doctor say. The tests are available to detect it early and when detected early, it is curable.

The same is true, to a lesser extent, of prostate cancer. Dying of prostate cancer is one of the worst ways to go. There is a scary chapter in one of the prostate books that describes dying from it, apparently to motivate patients to not forego the PSA test, biopsy, and treatment. It attacks the skeleton and brain.

Dying of prostate cancer is avoidable. Avoid it. 

Here are some additional pertinent comments from my Facebook post about this:

An untrained dog detected melanoma by sniffing it on its owner at unusual length.https://en.wikipedia.org/wiki/Canine_cancer_detection Apparently dogs have thus far detected skin cancer, prostate cancer, bladder cancer, and lung cancer.

That last one is of great i
nterest to me. I never smoked, but 10% of those who get lung cancer never smoked either—including two people I know—one a college classmate who died from it.

The normal test, low dose CT, sucks because there are lots of false alarms among the clouds and shadows on the x-ray. And what does a false alarm mean with your lungs? Sticking needle into it to do needle biopsies and also surgery to cut out chunks to analyze.

False alarms about lung cancer can literally kill you because of the dangers of the biopsies.

The dogs who detect lung cancer have a 99% accuracy rate. I need to track them down. For the prostate surgery, I had a CT scan. It showed no lung cancer, but only covered the lower part of the lungs. I do not come within a mile of meeting the screening guidelines for lung cancer. Only those who smoked in the last 15 years can get the LDCT test routinely.

US News rates the top hospitals in America for various specialities, including urology. http://health.usnews.com/best-hospitals/rankings/urology

#1 is the Mayo Clinic. #5 is UCSF to which I considered going, although I would have had to pay out of pocket. The final bill, which was covered by our insurance, was $68,000!

My surgeon at my local HMO did his residency and internship at UCSF, then worked there for years before spending 12 years as director of Urologic Oncology at Stanford. So I got UCSF care—which probably cost more than $68,000—for $250, which was actually was reimbursed. “I’m a cheap date,” my surgeon commented when I mentioned that co-pay.

MD Anderson (Texas) was also recommended to me by a friend. They are nationally ranked—top 50—in three specialities, but apparently urology is not one of them, I was surprised to read.

Clark Christensen You are absolutely right that the PSA test is lousy & inaccurate. Also, prostate cancer is usually very slow to grow unless it happens in your 40s or 50s. Most men who live beyond 70 will have prostate cancer when they pass away from other causes. You made good choices all the way through, with having the UCSF trained urologist perform your surgery being a key to a good outcome. You're a strong person and your future looks bright to me.http://www.cancer.org/.../prostate-cancer-survival-rates

Survival rates of prostate cancer are based on outcomes of people who've had the disease. Find the survival rates for…
CANCER.ORG
John T. Reed Are you a doctor?
Clark Christensen I am not but I have worked extensively in healthcare from drug development & clinical trials at Merck, to disease management programs at Cedars-Sinai, to oncology clinical pathway design at McKesson, to liver cancer patient education & support at Genentech, to healthcare quality improvement programs at large integrated healthcare systems. Also, my wife is a board certified UC trained MD & my brother is a physician as well. Most of our friends are doctors or work in healthcare in various roles.


I found a video about about a British charity that does that. It actually shows the dogs doing their thing. They simply sit down when they sniff a cancerous urine sample.
http://www.executiveinterviews.com/deli…/…/mini/default.asp…

Here is a shorter version: http://www.executiveinterviews.com/deli…/…/mini/default.asp…

Watch this PROMO interview with Claire Guest, - of Medical Detection Dogs, broadcast at 20:00 BST on 11/10/13
EXECUTIVEINTERVIEWS.COM|BY EXECUTIVEINTERVIEWS
Here is the crowd-funding website for that charity:http://www.crowdfunder.co.uk/fund-a-cancer-detection-dog/...
Cancer Detection Dogs working towards the early diagnosis of Prostate Cancer and other diseases at Medical…
CROWDFUNDER.CO.UK
I said recently that the PSA test was lousy. I need to be more specific about that.

The PSA test does a poor job of answering the question “Do I have prostate cancer?” because it is reflecting a number of things in addition to just prostate cancer, namely, whether you ejaculated in the last five days, whether you recently rode a bike, whether you had a urinary-tract infection, whether you had prostatitis.

In contrast, the dogs who were trained to sniff prostate cancer in urine are 99% correct on whether you have prostate cancer. The dogs give no data on how advanced your cancer is or precisely where in the prostate it is. You get that from the prostate biopsy. The dogs are also not affected by issues like bike riding, infections, and so on. They just recognize the smell of the cancer per se.

Interestingly, in the meeting with my surgeon after my PSA test dropped to 0.0, I asked if the PSA tests of me are henceforth accurate. Absolutely, he said. The test measures how much Prostate Specific Antigen is in your blood. After your prostate is removed, as mine was, the multiple sources of various scores are no longer present.

For example, riding a bike squishes your prostate, which elevates your PSA score. But AFTER your prostate is removed, you can’t squish it. After the prostatectomy, all a PSA test means is there are cells in your body producing PSA and if you have no prostate, they must be prostate cancer cells. (When prostate cancer spreads it is still prostate cancer even when it moves to other organs.)

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