How many of you are living because of PSA screening?

I was diagnosed @ age 44. Even with my family history, the discovery of my PCa was pure happenstance. I was going in for knee surgery, and my NP asked if I would mind donating a bit of extra blood as she wanted to extend the basic pre-op blood work to create a baseline for me across the board (as she put it.....you are approaching 50, so I'd like to have a good baseline for everything.) She added a PSA test to this extended panel of blood work, and, as the saying goes, the rest is history.

With my eventual 4+4, and 40% organ involvement, I am quite sure that my NP's actions saved me from a much more dire diagnosis. Had I waited until 50 for my first PSA test, I shudder to think how far the cancer may have spread by then.

Good luck!

Rich

I am sure I would be in far more trouble by now. I had no symptoms and presented a high PSA (59.7) then learned I was loaded with G7. It wouldn't be long until it would be metastatic and potentially out of control. Since we started treatment when we did I now continue to be undetectable. Won't know for some time if it is cured, but no doubt the treatment has bought a lot of time.

the irony is there are guys who were saved by PSA tests and now advocate they weren't, and claim that early detection is not in men's best interest. this is a sore point with me. tar. feathers. rail.

ed

As my DRE was normal, the only thing that caught my PCa is the PSA test.

I am alive because I have a doctor and medical system that believes in partnership with patients, screening, education, and appropriate treatments.

and because I am to stubborn to just quietly fall over and die.

That and sawdust. I am convinced that regularly covering yourself with sawdust from large noisy power tools is generally curative for must medical conditions.

Andrew

Moonlitnight said...
My husband was told by his GP that the reason for his constant need to urinate was "simple BPH, which is very common in men your age." This went on for almost a year, with me not even questioning his PSA as my areas of medical research had never touched prostate cancer. I had, however, written extensively on BPH and so believed what my husband said the doctor had told him as being accurate. However, the "BPH" got worse and his PSA rose from 1.7 (I believe) to 4.0 in six months. The doc did not do a DRE and said that the PSA was "fine" as it was not over 4.0. Never mind the trajectory! Urination became painful and then his collar bone began to tingle. He went to another doctor, who immediately did a PSA test, which came out at 32. She also did a DRE and said she could feel hard lumps. It had spread to his axial skeleton with a large mass in the collarbone.

Had the idiotic doctor done a DRE or considered the trajectory, perhaps we could have caught it at an earlier stage. 2.7 years on from diagnosis, I fear he is not going to be with me in this world much longer. I have just written a two page article on the truth about prostate cancer that will be published next week in a Canadian pharmacy magazine. Prostate Cancer Canada will also be using it in their social media once it is blogged. We must never allow this diabolical lack of screening to continue, holding on to the incorrect belief that men die with it and not from it. It's cost-cutting absurdity.

Very powerful post, Moonlitnight! I'm sorry to hear you guys have been through such a failure to receive good care. No DRE along with increasing PSA seems pretty outrageous.

Try suing for malpractice in Canada (and I will) and the lawyers usually tell you that you don't stand a chance. I am having all records pulled nonetheless.

The thing with malpractice in Ontario Canada is you have just 2 years from original diagnosis. I contacted a medical malpractice lawyer , they only want to represent a easy win. In order to win a malpractice on Daves behalf you would need a tape recorded appointment of each years appointment. The College of nurses took 8 months to even send a written report back on what I first filed with them. The first few months were totally spent on imediate damage and survival of the cancer itself. Drs defend other drs and they don't want to help you at all. It is in essence Kangaroo court .This is why I am pursuing this and if we can just get the freakin medical community to admit how stupid it was allowing my husband to die because of a office that says it follows the Canadian Task Force guidlines. When a patient has an appointment booked in which screening was requested that is not their job to say they don't reccomend it?.my question is what constitutes a male physical ? It is us who are losing our men so darn needlessly. I would just love to have them put a urologist in charge of a mens physical .I doubt there is a actual urologist who does not see the value of saving someones life with early detection. Hugs to you all I know none of it is easy💙 Thank to every single one who has responded to my question I am going to let the numbers speak in my summery because so far there hasnt been insingle person sorry they are alive even if it meant incontinence or impudence. I would give anything in the world to be sitting here with Dave for 20 years longer and I couldn't have cared if those were what we lived with.

Once again, Sue, I am sorry for your loss. You may recall I previously shared with you some of my own personal experiences going through a spouse’s final days after a cancer battle, hoping to give you reassurance that many of the palliative care procedures in the final days, weeks or months are indeed in the best interest of the patient, and the family.

Your original question here asks this question: “how many of the people posting here feel that they are alive because of active PC screening.”

You also added, “From posts I read I don't seem to hear that PSA screening didn't help them.”

Your original question is an interesting psychological self-examination for the participants here at HW/PC. The reality is that psychological studies have indeed already shown that that many men may feel that they were saved by PC screening, but medical studies have confirmed that in the contrary, in the big picture and across a large population of men—let’s say all men—the number for whom this is actually true is quite small compared to the number diagnosed.

Perhaps you have not seen one of my posts stating this, but I feel that my favorable intermediate-risk case was NOT helped by PSA screening, and in fact PSA screening caused me to immediately become “labeled” and put me on a very common slippery slope leading to PC overtreatment. The popular belief that it's better to catch cancer—any cancer—early and treat it until it's gone might just be plain wrong. On the surface, PSA mass screening sounds like a simple blood test that could save your life. But thought leaders in the prostate cancer care profession today acknowledge that mass PSA screening has been oversold.

Many survivors are staunch, but not unbiased, advocates for screening and convinced, despite evidence to the contrary, that in nearly all situations, screening and aggressive treatment saved their lives. For men who have fast-growing forms of the disease, treatment may be life-saving, but for many other men the harms associated with treatment cause more challenges than their prostate cancer ever would.

How many might have actually been “saved?” The definitive study in this area found that for every man who was helped by PSA screening, at least 48 received unnecessary treatment. One doctor intimately familiar with the study data put it this way: “The test is about 50 times more likely to ruin your life than it is to save your life.”

So, again, again, I am very sorry for your loss. But I am also cognizant of the far more than one million men alive in the US today, myself included, who have likely been overtreated, mostly through the overselling of PSA mass screening. The pages of HW/PC are filled with posts from men, certainly alive and dealing with a litany of problems…many perhaps not realizing that PSA screening did nothing to change their longevity.

My belief…if we could stop the gross overtreatment of men with PC, we would have billions and billions of dollars to focus further research where it is really needed—fighting the rare strains of PC causing death which today cannot be stopped with any treatment.

Post Edited (JackH) : 10/14/2015 1:02:27 PM (GMT-6)

The test is inert....it will neither save a life nor make a life either better or worse. The doc that said it ruins lives is an idiot in my book.

All the test does is give us information that we otherwise didn't know. We have to use that information as a catalyst to either gain more information or to stop digging. If, at age 60 my PSA was 1.9 I am sure my doctor and I would agree to test it again in a year and then put it out of our minds. If it was say 4.7, I am sure we would decide to gain more information before any real action would be taken. Since it was 59.7, we quickly started digging for as much information as possible.

PSA to dx to treatment should be a multi-step deliberate process that includes a lot of education, second guessing, and multiple opinions from all the different specialties that deal with prostate cancer before treating. Shame on any doctor that does not provide full information of all the various options we have available. Double shame on the surgeon that sharpens his scalpel while telling the 65 year old man with 4.2 PSA, 1 of 12 cores positive, and G6 "if we act now I can cut it out and guarantee you will be cured. We will try to spare a nerve or two and you should be continent and potent because I and DaVinci are so good". Pure malpractice in my book and I lay the entire overtreatment issue on the surgeons. Just think, if my dermatologist treated my skin cancer like some urologist/surgeons treat PCa, I wouldn't have any skin by now!

I am very glad to have found the cancer when we did...however I sure wished it had been sooner. Better diligence in my own screening could have made things better. Maybe avoided HT. But my biggest advantage was my very gifted urologist who lectured me for hours about all the ways I could be treated before telling me he would not treat me until I sought multiple opinions from surgeons, rad-oncs, and a med-onc. Only then would he accept me as a patient. My history has thankfully been very positive and I have achieved cancer control with far less significant side effects than so many others I have met.

I continue to cringe nearly daily as new people join the forum after their initial treatment and then learn of the many other ways they could have been treated. Another big advantage I had is that I found this forum and a couple others within hours of my PSA reading and long before my dx. I saw the treatment controversy discussions, the men describing treatments and side effects, and the great help members unknown to me at the time provided to one another. It certainly was very beneficial in my research and decision process seeking the treatment that I would judge most appropriate for me.

Mine was caught with the PSA at age 48.

I agree with the thesis that many many men are overtreated. The crux of the problem however, is, that there are a significant number of men, who get a positive, but non aggressive biopsy result, and turn out to have a more aggressive pathology. And that guy, if he is proactive about not being treated, or has a passive doctor, can end up, being Dave. That would be a shame. I realize that Dave's biopsy was aggressive to begin with, but we've all seen guys here who were upgraded from G6, to G8 or 9 after surgery. Even i, who was upgraded to the "good" G7, consider myself lucky as the G7 was at the Apex and left to its own devices could have escaped in the form of Grade 4 cells.

I know many here feel very strongly about overtreatment, and its certainly understandable.I not only respect that point of view, but understand the rationale and the evidence.

But until we have systems to differentiate aggressive vs non aggressive PC, that are both reliable, easily obtainable in any city, and affordable (i.e. universally accepted by all insurance companies, even mandated so by law, like a mammogram), then i am with those like Sue, who would err on the side of caution.