PCa Screening.: Yet another anti... - Advanced Prostate...

Advanced Prostate Cancer

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PCa Screening.

pjoshea13 profile image
34 Replies

Yet another anti-screening recommendation has just been published:

bmj.com/content/362/bmj.k3581

-Patrick

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pjoshea13 profile image
pjoshea13
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34 Replies
cesanon profile image
cesanon

How about the "Advanced Prostate Cancer Forum" issuing its own recommendation?

I'm Serious.

A better question is what percentage of men in this group were metastatic either upon or less than a year at diagnosis?

pjoshea13 profile image
pjoshea13 in reply to

It would be interesting to know:

- how many of us are advanced because we were never PSA-screened

- how many of us were advanced in spite of screening

-Patrick

in reply to pjoshea13

Can you start a topic with this question? I'm surely not the only one interested.

Lombardi24 profile image
Lombardi24

I was screened by pcp due to father having died from prostate cancer. My PSA rose from .27 to 1.36 to 2.07 in a years time and she stated that I was fine because it was below 3.00 basically signing my death warrant. No recommendation to a urologist for an appointment or biopsy.

pjoshea13 profile image
pjoshea13 in reply to Lombardi24

In terms of PCa screening, we hear a lot about the cut-off for biopsy & virtually nothing about tracking the PSA doubling time.

My PSA when a nodule was detected via DRE, was only 0.8. My urologist recommended a biopsy after it jumped from 1.7 to 3.0. Nothing magical about 3.0 in this case - he probably would have reacted the same to a 2.5 reading.

There is an old study that discussed the rationale for the cut-off for biopsy, based on a single PSA. In the paper, it was stated that the percentage of serious cases does not decrease with a lower PSA cut-off.

~30 years into the PSA era, it is now recognized that screening protocols are flawed. Instead of producing a better protocol, the "experts" want to scrap screening.

Initially, PSA was to be used to monitor biochemical recurrence. It was not thought to be a good standalone tool for screening.

-Patrick

Lombardi24 profile image
Lombardi24 in reply to pjoshea13

Ridiculous. The urologist that finally examined me knew as soon as he began the DRE that something was wrong. He said it has more to do with the doubling time than the number itself, buth that most physicians believe that 3.00 is the cutoff.

in reply to Lombardi24

My PSA was 2.7. A DRE is what got me sent for a biopsy. In this article they make no mention of DRE testing at all, as if the only screening test was PSA. Were you in the awkward spot of having a female doctor, perhaps increasing the reluctance on both sides, to have a DRE performed? Not against female PCP's at all, but knowing that my annual screening included the DRE, I always opted for a male PCP. I did once have a lady doctor do the turn your head and cough test. I passed that test, in more ways than one.

Lombardi24 profile image
Lombardi24 in reply to

Yes. Family doc. Female. Fingers too small I think. And maybe not aggressive enough to really check well.

Lombardi24 profile image
Lombardi24 in reply to Lombardi24

My mistake

in reply to Lombardi24

What can you do? You had no idea you were at risk for prostate cancer. Don't beat yourself up.

Lombardi24 profile image
Lombardi24 in reply to

My father died when I was 15 from this disease. I should have been more proactive. I was so healthy that I guess I grew complacent. Figuring that I would be spared.

Lombardi24 profile image
Lombardi24

To many physicians believe that as long as its low even though its rising rapidly that the patient isn't in any danger. Reeducation is needed.

Lombardi24 profile image
Lombardi24

I might have been saved.

me: PSA was with in normal limits, normal DRE, no symptoms ... Urologist: “no problem.” Yearly PSA checks “no problem.” Am a bodybuilder (for 20 years), wanted to bulk up with testosterone ... Urologist: At 66 years old, no test until we find no cancer. Biopsy. Reading the pathology report, the urologist: “Oh, shit!” As soon as possible radical prostatectomy, and Lupron. Micro Mets in lymph nodes, and bones (lit up on scans). Seven years later still on Lupron: My life is hell!

————-

• Statistically I would have been the (sacrificial lamb) who slipped-through-the-cracks (oh, well?).

• My diagnosis was just “Luck.”

• PSA didn’t work for me ... but don’t delegate the opposit making some men the statistics missed.

————-

Neither do I want my prostate cancer statistically generated (for diagnosis, treatment or prognosis), nor being the luck of the draw: “Some are going to be missed (fall through the cracks), and be really bad or die.”

—————-

Read between the lines:

With Active Surveillance...

• A few will fall through the cracks with undetected high risk, aggressive cells.

• Some aggressive cells will grow faster that the scheduled testing.

• Some survelliance programs are not aggressive enough.

• Who really knows? (Luck of the draw.)

—————

Cynthgob profile image
Cynthgob in reply to William123Cooper123

My husband thought he was getting psa tests! On yearly physical exams. Turns out dr doesn’t believe in psa testing. The nurse would call to say all tests r normal. Big fuck up! When it was finally found cancer had spread to all bones. 4300 psa.

William123Cooper123 profile image
William123Cooper123 in reply to Cynthgob

I wonder how many other dudes are in the same situation? Statistics indicate that more aggressive prostate cancer are being reported due to lack of early detection (and fucked-up opinions such as your doctor has?). And many institutions and practices are now reversing their PSA policies and general policies of “no testing” ... as greater numbers of dudes are coming in with more advanced cancer than before ... as a few (or many) men are or have been sacrificed with the fuck-up policy of “no testing.”

(Not me, why would it have to be be?)

If men can’t handle PSA numbers, and treatment decisions (because they are “stupid,”), don’t make the assumption that I am so oblivious that I’m also unable to manage my own health and make informed decisions regarding treatment (in the case of cancer). Don’t paint us all with the same brush!

————

Am so sorry that the faith you had in your doctors failed you! It’s inexcusable, and the consequences an aberration of faith one puts in the doctors.

I am praying that comfort and goodness will follow you and your husband along the road you never wanted to travel. Take care and be positive with the good parts of your life.

henukit profile image
henukit in reply to William123Cooper123

Many but probably not enough to stir the pot? I was told by few oncologists they're seeing more younger men with advanced PCa lately. I was diagnosed at 47 with Stage 4 GL9 at PSA 500. In my original country they start screening men at 40-45, but I live in the US for the last 17 years and was following local protocol. Since mid-aged Caucasian male with no PCa history in the family is not a good candidate for early screening is my case a pure bad luck or result of the flawed early screening system? I suppose both with the emphasis on the latter. Instead of fear mongering better to increase awareness and education around the issue and work on improving early detection and reducing false positives with subsequent over-treatment. Give men a chance to make decisions based on their individual situation rather than a one-size-fits-all cookie-cutter solution with less hysteria and more common sense.

in reply to Cynthgob

Let me guess, he wasn't getting the DRE screening test in his annual physicals either?

Cynthgob profile image
Cynthgob in reply to

You are a mind reader . It’s really criminal what they called a physical. Medicare physicals are a joke. He did go for colonoscopy every 3 years. I mistakenly thought they covered prostate as well. He was seen by a lot of doctors. He was not uncared for.

pakb profile image
pakb in reply to Cynthgob

My husband too. He was 48 when his prostate issues started. Urination issues, had to go to 4 ERs in a year to be cathaterized due to retention, then was self catheterizing for 3 months, then my husband requested a TURP. Urologist did not suggest it. We requested. My husband's father diagnosed with Pca 10 yrs ago (our urologist knew this) . We, naively, thought all testing was being done. But no PSA had been done in the entire year and a half. At TURP routine tissue testing by hospital found GL 9 cancer. Still no PSA done by our urologist. He put my husband on bicalutimide for two weeks and told us to get scans. Found Mets in spine, lymph, etc. Still no PSA until we went to oncologist. My husband was 49 at diagnosis. 1.5 years of prostate issues. Father with Pca. No PSA ever done. After 2 weeks of bicalutimide PSA was almost 800.

Cynthgob profile image
Cynthgob in reply to pakb

If you have a son my mo told me to watch carefully!! Not ok just to be normal but has to be 0. My son is 40 so I have told him yearly checks and nothing above 0. Although from where I am sitting we have had a fabulous 20 fun packed years that might have been taken away by the drs. We wouldn’t trade the life we had I guess . Just cutting it short. What we go thru every three months is just a hard way to live. Mixed emotions.

pakb profile image
pakb in reply to Cynthgob

We have 2 sons- but they are only 19 and 15. We are working with genetic counselors at our cancer center who also said our daughter should watch. My husband tested negative for most of the genetic mutations.

Lombardi24 profile image
Lombardi24 in reply to pakb

Seriously...WHO...is educating these physicians? Women are all over breast cancer, but for men it's like the pcp medical community treats it like it's a benign disease that men get when they turn 80. Wtf? It's a very real and dangerous issue.

RalphieJr64 profile image
RalphieJr64 in reply to Lombardi24

Unfortunately, men don't regard their prostate as women do their breasts. God bless all of the brothers who truly believe there is a remission in the cards for them from this terrible disease.

Stegosaurus37 profile image
Stegosaurus37

First, they are basing their case on a single observation. You can't tell a damn thing from a single observation; you need a trendline. My case PSA 0.5, 0.6, 0.52, 0.67, 1.04, 1.44 - that's when I hit 70 and they stopped screening. After diagnosis, the second opinion oncologist looked at the 1.44 and said "you probably had prostate cancer at that point.

One of my grad school classmates had a PSA trend almost exactly equal to mine. His doc, instead of stopping screening got a biopsy which was positive. Surgery and he's been cancer free for 10 years.

My diagnosis came age 75 (five years after they stopped screening) because I was having real difficulty urinating. Biopsy Gleason 9 and bone mets to beat the band. But it could have been picked up at a point where they could treat it and it should have been picked up then.

I've always been in excellent health and, except for the cancer, I still am. But the therapies have ripped a year out of my life and I'm going to die several years sooner than I should. PSA may be less than totally reliable, but what else is available? Am I supposed to be the "new normal"? It may be unChristian but the thought that because those twerps skipped a couple of $95 tests, I've cost them over $100,000 so far (therapy treatment cost plus VA disability) with no end in sight gives me a bit of comfort.

Cynthgob profile image
Cynthgob in reply to Stegosaurus37

It seems like breast cancer is treated much better. Prostate is misunderstood??? Frustrating!

in reply to Cynthgob

DRE is an icky test, breast exam not? Periodic mammograms are routine. Prostate screening -- not routine (I had to demand it), and now seemingly being actively discouraged particularly beyond a certain age.

Stegosaurus37 profile image
Stegosaurus37

Prostate cancer is like the "crazy uncle Louie' that every family has and no one will talk about. "You're going to die with it or of it" - so we can ignore it, any way men don't cause problems. Women, on the other hand, raise holy hell. Pink T-shirts all over the place; there's even a "fight breast cancer" postage stamp. More power to the ladies; we could emulate them.

in reply to Stegosaurus37

Football players wear pink, never blue, yet they (most are African-American) are at higher risk for prostate cancer. Maybe they need some real coaching.

j-o-h-n profile image
j-o-h-n

September happens to be "Prostate Cancer Awareness Month"... Has anyone heard any public (or private) announcements regarding this observance?

Good Luck and Good Health.

j-o-h-n Friday 09/28/2018 4:59 PM EDT

steelerfan52 profile image
steelerfan52 in reply to j-o-h-n

was that movember? i got my beard going

j-o-h-n profile image
j-o-h-n in reply to steelerfan52

Maybe Neverary?

Good Luck and Good Health.

j-o-h-n Friday 09/28/2018 6:07 PM EDT

Stegosaurus37 profile image
Stegosaurus37 in reply to steelerfan52

You've got a beard? Since I got on lupron anything resembling a beard is probably 5 years away. I shave daily not because I need it but because it makes me feel better.

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