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just saw on TV - new guide lines for prostate cancer screening

Chuckect's picture
Chuckect
Posts: 45
Joined: Jan 2018

seemed to me that PSA should not be chec ked before 55 or after 70 ;; that is what i heard on NBC news..   Seems to me that is what doomed me to stage 4 metastatiic prostate cancer.. i would get medicare and insurance in Kentucky then when i went to Florida for the winter my insurance and medicare didn't work well.. Sp, i got insurance and medicare in Florida, and then that didn't work well in Kentucky,, OK - finally got that straight medicare with a united health care supplament,, which i have now and it seems to be working well.. So that was a period of 5 years or so and i think that all the time the cancer was working it's way through my body and nobody knew.. and i saw different doctors , i think a total of 5.. seems like somebody might have picked up that i had cancer and it was aggresive.. oh well so it goes !! 

ASAdvocate
Posts: 113
Joined: Apr 2017

This the news he referred to:

https://www.medscape.com/viewarticle/896331

This does nothing to quiet down the PSA screening debate.

 

Old Salt
Posts: 720
Joined: Aug 2014

that cannot be easily summarized in an NBC report.

I just read the article that ASAdvocate provided the link for. This revised guideline has many ifs and buts. 

Most of us on this forum are in favor of routine PSA testing followed by a discussion(s) with an appropriate specialist(s). I will also postulate, that many (but not all) of us do favor the 'active surveillance' approach for dealing with low-risk prostate cancer. Significantly, the American Urological Association does present that option in its guidelines for low-risk prostate cancer.

https://www.auanet.org/guidelines/clinically-localized-prostate-cancer-new-(aua/astro/suo-guideline-2017)

 

PS: another link for the same (revised) guideline: 

https://jamanetwork.com/journals/jama/fullarticle/2680553

RobLee's picture
RobLee
Posts: 259
Joined: Feb 2017

"So that was a period of 5 years or so and i think that all the time the cancer was working it's way through my body and nobody knew.. and i saw different doctors , i think a total of 5.. seems like somebody might have picked up that i had cancer and it was aggresive... 

In a few words, pretty much what happened to me, but without the insurance runaround. My Ohio insurance covered everything in Florida.  But my Urologist was never honest with me. He never mentioned the word cancer.  It is hard for me to not feel resentful about the way I was mistreated.  I know I sometimes come off as bitter and cynical, and that has been eating me up inside.  It is unhealthy, and I know what's done is done and I can't go back and change anything.

I would LOVE to present my case to that gov't panel and see what they think about the outcome of their earlier recommendation. And your case too Chuck. You got hit much harder than I did.  Oh those "lucky" guys who had low risk cancer and can gripe about "overtreatment". They don't know how fortunate they truly are. There is no death sentence involved in treating cancer before it spreads.

jeffman
Posts: 21
Joined: Oct 2017

Had I not had a PSA test and the subsequent biopsy,MRI, and bone scan I probably wouldn't be making this post. It's pretty simple.

foamhand
Posts: 76
Joined: May 2016

I had a misleading PSA of 7.1 when I was diagnosed which had almost doubled from 4.0 6 mos earlier. I had already advanced gleason 9 and couldn't have surgery. I had a 3.8 PSA 5 years prior and 2 years later I had a different doctor give me a physical but no DRE and he said he felt PSA was misleading so he didn't order one.

I think PSA tests followed by an automatic prostate biopsy should be done for any 1st PSA check after 50 yrs old or under ANY suspicion of Pca. If it turns out to be bph or something else, at least you have accurate knowlege of whats going on.

I'm doing OK with Lupron / TAK-700 clinical trial but would have much preferred not to do this. A rad seed would have been much better had I been caught in time.

foamhand.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3257
Joined: May 2012

These "statistical recommendations" agains PSA testing kill individuals.  Most are derived from insurance-backed research.  The same trend began among women, with a retreat on the frequency of recommended mamograms from annual to less often. Most agencies have since disavowed that recommendation, and the best gynocologists again suggest annual mamos for women with even the slightest indications of risk.

I have recommended annual PSA checks to numerous friends from age 50 and older. None of them had ever had a PSA before, and their average ages were around 57. Interestingly, they all said that their GPs had told them in effect that "PSA tests are a racket and waste of time."  Two have since been diagnosed with PCa, two others have suspicious vectors, but they do not have long vector histories, because they do not have a history of PSA results. Now, they all wish they did have those baselines established. Several say that their doctors automatically attributed their issues to BPH.

After getting a PSA result myself in 2014 that indicated an annual doubling rate, my GP told me to "ignore it." He had long expressed to me that he regarded PSA as overused and abused.  I instead ignored him, and went to a urologist. She recommended an immediate biopsy, which eventually proved Stage II disease.

PSA draws are cheap and medically harmless. Some say that they are "psychologically harmful." If  a man is that much of a snowflake, I don't know what to say about him. Life itself is frightening, dangerous, ultimately fatal. Wishing to remain ignorant rather than aware is bizarre to me.

If I had no insurance coverage to pay for an annual PSA draw, I would pay out of pocket, and that is what I recommend to ever man over 50 years of age. My son, who is just in his 20s now, I will recommend be PSA tested annually at age 45, although by then, very likely more sophisticated tests will have been developed.

max

Clevelandguy
Posts: 428
Joined: Jun 2015

Hi All,

PSA test is a lot cheaper than an MRI and is a good indicator(not perfect) to let you know what's going on with your Prostate.  That's how my GP found out something was going on with mine due to the rise over time in the readings. Off to the Urologist who took it a few steps further and found my cancer.   Good cheap test along with the DRE.

Dave 3+4

Grinder
Posts: 438
Joined: Mar 2017

I'm with Max and CG on this one.... My PSA would rise to 9 with every Prostatitis attack, then settle back down to 4 with antibiotics, since I also dealt with BPH. 

But it shot up to 18, and then a biopsy was scheduled. Gleason 6 3+3. HOWEVER, during all the DREs not once did any GP or urologist detect anything but a smooth prostatic surface. Why? because the infection and the BPH expanded the prostate like an inflated balloon, making any malformation imperceptible to a DRE.

So yes, there should be a baseline of PSA established to detect pathosis in the prostate.

During 2015-16, I had a conga line of five different GPs and urologists giving me DREs, all were negative for irregular prostatic surface, not counting the massive size.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3257
Joined: May 2012

It is worth mentioning for the guys who might not know this that a DRE is only relevant to the bottom-rear half of the gland that the finger can access via the rectum.  Fully 50% of the prostate gland cannot be felt via DRE, and therefore tumors in that half are not detectable via DRE.

All of my DREs prior to RP were "completely normal."

RobLee's picture
RobLee
Posts: 259
Joined: Feb 2017

All of my many DRE's were always 'normal'.  Following post-RP pathology it was found that I had a single large tumor consuming one fourth of my prostate, directly below the bladder.  It had spread into the surrounding areas and the seminal vesicles.  It wasn't until my second urologist did an MRI that a fusion biopsy identified the tumor.  Before that, "your PSA is sky high, but all your tests are negative" was all I heard from my first urologist.

The fact that my PSA kept rising, and I had constantly irritating burning in my urethra that kept me up at night, plus my maternal grandfather died of prostate cancer didn't seem to mean anything to him for nearly four years.  More Cipro and even more Cipro. Perhaps you can understand why I'm bitter and cynical, especially when guys who had a little G6 cancer whine about overtreatment, and government bureaucrats tell doctors to not test for PSA.

Grinder
Posts: 438
Joined: Mar 2017

You are perfectly justified in your bitterness. I am surprised at the relaxed demeanor you have for all the crap you have dealt with. 

I do get a little bummed reading about your experiences, but I also have to express some admiration as well. I figure if RobLee can work wonders with such a crappy hand he was dealt then what I am dealing with is a piece of cake.

Anytime you get pissed and want to vent... go for it. 

And Cipro? Really? That is the most ineffective but most prescribed antibio... I got both side effects common to Cipro... Black Tongue and mild neuropathy. During one of my prostatitis bouts, I woke up one morning and freaked out when I looked in the mirror and my tongue had turned black!

Turns out it is just a harmless temporary side effect of Cipro. The neuropathy is permanent though, but not real serious. Cipro is on my allergy list now, because every time I used it the neuropathy got a little worse. I think maybe they prescribe it so much because pathogens dont develop resistance to it. I think that it doesnt actually kill the pathogens, but affects the way they protect themselves and reproduce, allowing your antibodies to kill them. Or something like that.

But it would be worthless against DNA mutated prostate cells on the run. Almost as worthless as your first urologist's advice.

Hang in there.

Maybe we should start a prostate cancer survivor prayer ring... would that be crazy? I dont expect Benny Hinn type healings... but who knows what it may accomplish.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3257
Joined: May 2012

A further irony is that most cases of prostatitis are non-bacterial and even non-viral.  It is usually an inflammation caused by neither.  Surely urologists know this, but act as if they do not. Cipro in such cases throws good money after bad.  I had prostatitis off and on for nearly 30 years.  When the pathologist studied my gland following the RP, he mentioned the "inflammatory tissue."

There is an analog of this in Lymphoma diagnosis. Many patients first present with lumps in the neck, and are first sent to ENTs.  What inevitably then follows is a long administration of antibiotics, to "cure the infection."  With many patients this drags on for many months at times, despite no reduction in tumor (node) size.  I tell these folks when they write to the Lymphoma Board: "Don't let an ENT antibiotic you to death."

Cipro is a urological equivalent.

I am not saying that these apparant UTIs are never bacterial, but the doctor ought to have positive lab results to indicate this, not just perscribe pills with no results to back up a  diagnosis.

max

RobLee's picture
RobLee
Posts: 259
Joined: Feb 2017

I am humbled by the hero worship (if I can call it that). Honestly, I just roll with the hand that was dealt to me. My wife and I had met nearly forty years ago shortly after we had each prayed, hundreds of miles apart and unknown to each other.  I'd just had two major surgeries. She had completed rehab following a lengthy hospitalization. We were both so lonely and felt lost. We bumped into each other (literally!) in a restaurant, and I proposed about a month later. 38 years ago, neither of us ever married before or even engaged. That proved to me that prayer works, but I try to not pester the big guy with day to day minutia. God helps those who help themselves. But if you feel you need a regular spiritual recharge, go for it!

Grinder
Posts: 438
Joined: Mar 2017

My own wife says she prayed for "her future husband".

Believe it or not, looking back, I got into a lot of trouble when I was single, but always had narrow escapes. I have always wondered if those prayers had something to do with it.

I wish you all could meet her... she's incredible... but tough, I want to stay anonymous so it's your loss.

;)

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