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An interesting fact learned today...Thoughts?

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Posted 9/10/2014 8:15 AM (GMT -5)
Lots of great replies and I will reply to some once we land in California to see Mr. WW's other oncologist.

John T... I can tell you that you pretty much stated exactly what the oncologist did. Almost verbatim. Actually, as I recall, even with his father having Pca, he thought it raised his risk to the 20% mark.

I have lots of replies, but yours was sort of like sitting in there listening to him describe "Why."
Posted 9/10/2014 8:43 AM (GMT -5)
Absolute nonsense. This discussion does not now, nor has it ever had two sides. Shame on any of us who give this physician the benefit of the doubt. Early diagnosis is a critical component of cure in any setting of any disease. The influence of the insurance industry in medicine has created a frightening, money snatching juggernaut, and doctors with twisted agendas or subpar mental horsepower are the low hanging fruit. Thirty thousand men will die of prostate cancer this year. We should post all of their faces on a website and email the link to any practice that cannot see the wisdom in PSA testing.
Posted 9/10/2014 10:06 AM (GMT -5)
MsWorryWart, So glad your husband’s MDAnderson (formerly) oncologist is providing compassionate support.   His comment is not “new news,” as already seen from so many other responses here so far.   More than a generation ago, Dr Willet Whitmore, Chief of Urology at Memorial Sloan Kettering, and known as the “father of urologic oncology,” famously asked this about prostate cancer:   " When cure is possible, is it necessary? When cure is necessary, is it possible? "  At that time, he was basically asking whether a million-dollar industry “has no clothes.” Today, the medical-industrial complex which feeds off of the detection and treatment for “prostate cancer” is a multi-trillion dollar business. Amongst the current generation of urologists, Dr Paul Shellhammer, recent-past president of the American Urologic Association (AUA) and past president of the Society of Urologic Oncology has similarly commented that “ we know there are two kinds of prostate cancer:   the kind that can be cured, but need not be cured; and the kind that needs to be cured and cannot be cured .”   Is there also a kind that needs to be cure and can be cured?   We can “ hope ” so, in Dr Shellhammer’s words. There simply are vastly different types of PC, and the very infrequently occurring type we simply do not know how to stop at any stage of its development.   Slow its development, yes (measured in months); stop, no.  Over the long-term, it generally seems to progress at its own pace—not an identical pace for all patients—but generally irrespective of what we do to disrupt it. The underlying psychological influences on patients here are perhaps more powerful than the scientific one.   Psychologists have documented that the persuasive power of anecdotal (as opposed to scientific) evidence as a powerful contributor to the “furor” in the patient community “furor” following the USPSTF screening recommendations.   As Carol Tavris and Elliot Aronson write in Mistakes Were Made (but not by me) , " our efforts at self-justification are all designed to serve our need to feel good about what we have done, what we believe, and who we are ."   In order to maintain a self-image as a smart, competent person, many will continue to justify the correctness of past decisions despite the evidence to the contrary. Stockholm syndrome?   Cognitive dissonance?   Easy to self-deny .   The data says quite simply that for low-risk men aggressive treatment does essentially nothing to alter their longevity...yet it is not infrequent when we hear them pull out the " saved my life " phrase.   Even most high-risk men don’t die from PC, but there is a small percentage for whom today’s “golden age” of chemical treatments has brought about an extension of life…although being tied to an aggressive, expensive treatment plan they probably had to forego the opportunity to marry their nurse and travel the world. Me?   I have now resigned to the understanding that my own “patient education” simply didn’t progress fast enough, early enough to allow me to say, “Leave my prostate alone.”   Did my surgeon “save my life?”   Heck no.   In fact I’d like to know why none of the so-called “expert” doctors I saw weren’t as compassionate, supportive and straight-forward in helping my education as MrWorryWart’s seems to be… Post Edited (JackH) : 9/10/2014 9:45:38 AM (GMT-6)
Posted 9/10/2014 11:03 AM (GMT -5)

quincy17 said...
Hi Ms Worry Wart,
Whenever I hear someone say that about the PSA test all I can do is think about my own first test. I was 52 at the time and the PSA was a 511. Of course that brought in the big guns or at least a needle biopsy which presented with a 12 out of 12 cores positive and a Gleason 9. In short a very aggressive cancer. Now I may not be cured but I sure as heck have enjoyed the extra years of life that the test has afforded me. I agree with those who say this is an example of a Dr. That doesn't manage his health very well. . . . Q

Q, that was certainly a severe case that was caught earlier than it otherwise would have been! And here you are still kicking, what, 7 years later, and apparently VERY likely to keep kicking for some more years, if something else doesn't claim you 1st? My rising PSA also led to my Bx and G9 diagnosis. And to my surgery and whatever else is in the future.

May I ask: Considering your severe case-what were your PC symptoms- if any- before your Dx via PSA? I had no symptoms that I had not had(on and off) for 20-30 years. (BPH, Prostatitis)

Here is a question for which I have not been able to find an answer: For patients with your severe starting stats, what would be the average lifespan before dying of PC with NO treatment? Or, at least, before being diagnosed and treatment started(or not) due to symptoms as it would have been in the pre-PSA era? And if diagnosed due to symptoms and then found to have a bunch of G9-10s, what was the average lifespan before death for any reason or FROM PC?

OK, I know that's a bunch of questions, but here are some more: the same above questions for G8s and G7s? I am assuming very few G6s would ever have any symptoms of PC before the PSA era.

I'm not sure how any one would ever find the answers. I suppose a researcher would have look at whatever stats were available in the pre-PSA era, find the folks diagnosed after PC symptoms, look at the G scores and then at length of time until passing from PC or from some other cause. Then I would like to see how lifespans compare for these higher risk PCs today, vs when there was no early diagnosis via PSA.

But you know what would mess those studies up, especially pre-PSA? All those guys who died of heart attacks, strokes, pancreatic cancer or accidents, who also had real high PSAs and a bunch of high Gleason PC and had no clue. You know there had to be a bunch of those guys in 1965, and in some other counties even today. I often think of my friend who died of stroke at age 51, who over the previous 4 or 5 years had RP and penile implant. In his, hopefully rare, case, he was, IMO, harmed by PC treatment and it's SEs messing with his last 5 years of life. He would have been better off not knowing as it turned out. Then again, if the stroke had not took him at a young age? Different story, possibly. Again: if he had not had the stroke, on average when would his PC have killed him if he never even knew he had it?( do not know G score, PSA etc)

Lastly, PC specific death and how long that might take ON AVERAGE is not the entire story, is it? I'm sure none of us wants to deal with a metastasizing cancer, treated or untreated, for a bunch of years. Even if you die from a stroke after waiting 10 years for untreated PC to kill you, that PC can have it's own very unpleasant "SEs". Can a lot of that be avoided by early Dx and treatment? Probably. Maybe? But was I in the group where I will die of who knows what well before even my G9 ever would have caused me any symptoms? With my PSA 10.9, G9(5+4 downgraded to 4+5), 1 focal margin and SV+, how long did I have(on average) before I got unpleasant symptoms and/or died from it, untreated? Does anyone even have a clue?

I am 65. My father died mid 40s from stroke, when I was 3. My mother survived a cerebral aneurism/brain surgery at age 60, full recovery only to die of colon/liver cancer at age 74. My 15 years older than me apparently all healthy sister dropped dead from either stroke or MI at age 59, as she stood in line to pay for antiques. My 17 years older than me criminal, bank robbing, cop shooting, 3 packs a day unfiltered smoking brother, was still alive and working last I heard some years ago, a few years after being released from prison. So who the heck knows! turn
Posted 9/10/2014 11:47 AM (GMT -5)
I have had several doctors tell me that they do not get PSA tests and they do not intend to do so.  My sense is they are focused on the overtreatment problem and the side effects of treatment, and that they also think there is a relatively narrow band of prostate cancers that both need to be cured, and can be cured.

I don't have an opinion on what they do -- that's up to them.  So long as they give me a PSA test when I ask for it, they can do whatever they want for themselves.

I have had at least 2 docs tell me that my personal practice of getting tested twice a year is nuts.  But I continue to do it because I have a family history of lethal prostate cancer and an elevated PSA.  And for me if it is going to happen, I would like to catch it early.  But to each his own.

Posted 9/10/2014 11:51 AM (GMT -5)
The death rate from prostate cancer has fallen by 1/3 since PSA testing has been done in the United States.

I, like many here, had no symptoms. After biopsy, 10 of 12 core positive, Gleason 6 that became a Gleason 3+4=7, staging was T3a.
My surgeon said the tumor was just getting ready to come out of the prostate and he probably couldn't help me 1 year later. He said judging from the size of the tumor, the cancer was probably there for 10 years, 2 previous biopsies missed it.

PSA's save lives!!!

Over treatments are a problem. But can you blame people that are told they have cancer that want to get rid of it.

Bill from Florida cool
Posted 9/10/2014 12:00 PM (GMT -5)
Derek Rhagavan, director of the Cancer Center here in Charlotte, and a trained urologist, has the same attitude. He has had only one psa and that was without his knowledge as part of a life insurance blood draw. He discovered the psa after the results were available. My medical oncologist said he had one psa after he turned 60 and never intends to have another.
Posted 9/10/2014 12:03 PM (GMT -5)
MS WW,
I've been through both sides and understand how the doctor feels. I spent 10 years with the anxiety of a rising psa and 13 negative biopsies. The eventual discovery of my PC was a relief compared to the anxiety of the unknown.
about 12 years ago I had an MRI due to something picked up on a chest X ray. It showed asbestos scarring on my lungs; have no idea of how I was ever exposed to asbestos. Had a very anxious couple of months; saw a pulmonologist and had another MRI a few months later that showed no changes.I have never had another MRI, because I just don't want to know, and am just fine with it. I just don't want to go through the anxiety again and have had 12 years of a non-anxiety filled life. If symptoms develop I'll deal with it then, but until then I'll enjoy life and as Sonny says "choke the life out of every day".
JT
Posted 9/10/2014 12:23 PM (GMT -5)
BillyBob,

I asked these questions to my docs when I was dx'd. They concurred that they had seen in reports and understood from experience that for the intermediate and high risk patients identifiable mets will generally begin to show up 5-7 years after the PSA is elevated and the patient starts to be symptomatic. After mets are identifiable, deaths will generally start occurring 3-5 years later. They also say it is very different from one individual to another, unlike most other cancers.

We have seen men here that had extensive mets at dx and only lived 2-5 years after dx despite aggressive treatment. Vince Flynn, the author, lived less than 2 years after dx and was only 47. Thankfully we also have brothers like Todd and Quincy that have done quite well despite the very advanced stage at dx and at very young ages. It is truly a very individualistic disease.

At dx I did not have any symptoms but had high PSA, G7, significant tumor volume and an easily felt tumor. If I had done nothing I would probably be finding evidence of mets by now and probably would have had a remaining life span of maybe 7-10 years. At the time as a 60 year old whose parents were in their 90's I wanted to do something to improve my odds, thus the treatment course was a no-brainer for me.

I have a hard time respecting docs that do not practice what they preach. I think they should just keep quite about their shortcomings. I think there are just some basic stats we should know like blood pressure, cholesterol, blood sugar, height/weight/bmi, and for men PSA. Those factors are going to alert us to about 75% of our causes premature mortality and morbidity and should be monitored regularly and managed as well as possible.
Posted 9/10/2014 12:42 PM (GMT -5)
I think Gedman nailed it ... "A positive diagnosis does not require treatment".

I feel folks are flogging the wrong end of the horse ... I wonder why?
Posted 9/10/2014 12:42 PM (GMT -5)
This may be off-topic but there is a risk that when you engage in medical care you can get hurt (in general). My husband's first PSA, done at age 58 at his request, was 4.2. He was told to see a urologist. He picked the wrong urologist. Dr. X told him that he did not have PCa (without performing a biopsy), but that he needed a TUNA operation (to urinate more easily). The only problem was that my husband did not have any urination problems. He did some diagnostic tests to prove that my husband needed a TUNA operation. One of these tests involved filling my husband's bladder with water. The test was done with a catheter infected with triple-antibiotic-resistant klebsiella, and my husband got very, very sick. He was in the hospital for a week with sepsis, was on a catheter because he was unable to urinate for a month, and on IV antibiotics for a few months.

It turned out that Dr. X was not board certified, was running a TUNA factory, and had a less than poor reputation among other doctors. This was all reported to us by my husband's new and excellent urologist, Dr. Y. Dr. Y tested my husband and said that he had never needed a TUNA operation (he did not get one) because his bladder emptied completely when he urinated.

As a result of this prostate and bladder infection my husband ended up with a scarred prostate and urinary symptoms. I believe that the terrible inflammation and infection in his prostate either caused his prostate cancer or upgraded PCa that he already had. His surgeon agrees with me. He thinks that inflammation and infection are two of the causes of PCa.

While this is somewhat off-topic because my husband went to a dishonest and incompetent urologist, it is still an example of how getting a medical test can start a chain of events that can hurt a person. I guess the moral of the story is to choose your doctor carefully. The doctors who treated my husband once he got the infection, and throughout his PCa journey have all been excellent.
Posted 9/10/2014 1:29 PM (GMT -5)
Billy Bob . . . Q here,
Yeah, right now I feel like the sky's the limit but if I hadn't been caught out by that PSA of 511 at age 52 who knows. I can say that a friend of mines husband decided that he preferred his chances without treatment ( He was Dxed at 60 with PSA 287 and G-7) after they had him on chemo first off which I thought was too aggressive a treatment and then Lupron+Casodex. He took himself off of these after the first injection, made the grand tour to see all extended family and then died, 7 months after Dx. So that shows just hoe rapidly an aggressive cancer can kill you. I have no idea how long I had left but the only symptoms that presented were those of BPH, urination at night type of things that had been going on for at least 10 years before Dx. It's a hard thing to choose but knowing what I know now, about QOL under therapy I would watch and wait for as long as possible. My life now is a good one, thanks to a very loving wife and my tight family but I do miss sex and I hate that the fatigue and aggressive osteo- arth. Forced me to close my picture framing business and go for SSDI, mostly for the Medicare as the benefits are beans. Fortunately, my business was a successful one so I'm not in a financial bind, boy do I feel sorry for our bros that are. . . . Q
Posted 9/10/2014 1:56 PM (GMT -5)
Earlier today, I commented on the three kinds of PC which Dr Shellhammer commented on: JackH said... Amongst the current generation of urologists, Dr Paul Shellhammer, recent-past president of the American Urologic Association (AUA) and past president of the Society of Urologic Oncology has similarly commented that “ we know there are two kinds of prostate cancer:   the kind that can be cured, but need not be cured; and the kind that needs to be cured and cannot be cured .”   Is there also a kind that needs to be cure and can be cured?   We can “ hope ” so, in Dr Shellhammer’s words. That third kind referred to by Dr Shellhammer, those for whom early diagnosis and treatment improves survival, has been quantified in this way: "There is adequate evidence that the benefit of PSA screening and early treatment ranges from 0 to 1 prostate cance r deaths avoided per 1000 men screened." I don't have medical training, but it seems like there are a lot of other men without medical training who seem to self-identify as being that 1 out of 1000...I guess it's simply a "gut feeling," or a "desire."  What would you call it...?  
Posted 9/10/2014 2:02 PM (GMT -5)
My urologist asked me a few months ago if my oncologist was taking new patients.  It was for a patient of his that had high gleason, wide spread mets, psa in the hundreds.  The patient was a doctor (a colleague of his) that never got his PSA checked.
Posted 9/10/2014 2:06 PM (GMT -5)
I am sure that my life has been extended by at least 6 years so cure or not these years have been great ones and I still have more to go. That's strange that Dr. Shellhammer didn't comment on life extension which is where a lot of us in the G-9 club get our perspective on life. A cure would be fantastic but I'll take each and every extra day they can give me . . . Q
Posted 9/10/2014 2:34 PM (GMT -5)

quincy17 said...
Billy Bob . . . Q here,
Yeah, right now I feel like the sky's the limit but if I hadn't been caught out by that PSA of 511 at age 52 who knows. I can say that a friend of mines husband decided that he preferred his chances without treatment ( He was Dxed at 60 with PSA 287 and G-7) after they had him on chemo first off which I thought was too aggressive a treatment and then Lupron+Casodex. He took himself off of these after the first injection, made the grand tour to see all extended family and then died, 7 months after Dx. So that shows just hoe rapidly an aggressive cancer can kill you. I have no idea how long I had left but the only symptoms that presented were those of BPH, urination at night type of things that had been going on for at least 10 years before Dx. It's a hard thing to choose but knowing what I know now, about QOL under therapy I would watch and wait for as long as possible. My life now is a good one, thanks to a very loving wife and my tight family but I do miss sex and I hate that the fatigue and aggressive osteo- arth. Forced me to close my picture framing business and go for SSDI, mostly for the Medicare as the benefits are beans. Fortunately, my business was a successful one so I'm not in a financial bind, boy do I feel sorry for our bros that are. . . . Q

Thx, Q! 7 months starting with a G7? Wow! Although, with that 287 PSA, it does make you think he might have got upgraded with a post surgical path report, but no way to know. But if that was a G7, it sounds like that G7 was plenty aggressive enough to metastasize quickly. Seems fairly likely to me that a PSA done several years earlier and paid attention to could have saved his life or greatly extended it. This one anecdotal example seems to me to conflict with the idea I keep seeing repeated along the lines of " If it's not the kind to kill you, (or if it is the kind that can be cured) it does not need treatment/curing....and if it is the type to kill you it can not be cured(implication I guess= so why try?)"

Am I wrong to think that his G7(or whatever it actually was) was probably at one point years ago well confined in his capsule? IOW, it was not born outside his prostate was it? Maybe back when his PSA was 5 or 6 instead of 287? If it was inside the capsule and the capsule removed, wouldn't that actually likely be a cure, assuming no cells escaped during Bx or surgery? Or can't capsule contained G7s(or 9s for that matter) sometimes(often?) be killed by radiation? If these G7s like your friend had are actually sometimes or often cured, how can it be said that if it is the kind to kill you it can not be cured?

This study of 30,379 men with G8-10s who had RP (mean age 62.5 years) www.renalandurologynews.com/study-supports-surgery-for-high-risk-prostate-cancer/article/338483/
showed a 68.8% 25 year PC specific survival rate for G8-10s , and only 13% had adjuvant radiation therapy! Even if we assume the study is biased towards surgery and the stats are exaggerated, still, obviously there were some G8-10 men who had not died of PC 25 years later! The all cause survival was only 20% at 25 years, but good grief, that is a mean age of 87! Very few of us are going to be alive, PC or not, at 87.

Now, I realize just because the Cancer-specific survival rates at 25 years were 69% does not mean these men were free of PC. And we know at least 13% of them had adjuvant radiation therapy. Still, based on your friends sad case with G7, it seems an untreated G8-G10 is VERY likely to kill most folks before 25 years. Does that sound like an accurate statement? So if a good number of them had not died of the G8-10 PCs 25 years later, then it seems to me some of them must have been cured by RP alone, and a few more by RP and RT. (based on you friends demise in 7 months from a G7, it makes me suspect that most men would die from untreated G8-10 in < 10 years. The Cancer-specific survival rates were 89.5% at 10 years! Sounds to me like someone was being helped and lives extended, even if not actually cured.)

So then, is "if it can kill you it can not be cured" an accurate statement? I hope not! wink
Posted 9/10/2014 3:01 PM (GMT -5)
INDEED, JackH...Perspective changes when you feel that you are that "1".  I am a female who probably doesn't belong HERE, but I'm not sure I belong ANYWHERE.

Early diagnosis is KEY to treating disease, whether it's prostate cancer or in my case, endometriosis stage 4. 

Please humor me for intruding in your conversation.  I am now 53.  At the age of 11, my periods came on with a vengeance.  I missed so many school days curled in a ball of agony.  My mom would take me to the doctor who said I simply had horrible cramps.  He prescribed muscle relaxers and hot baths to ease the painful passage of clots.  I would vomit in the bath tub from wretched pain that no young girl should have to experience.  My little 80+ year old neighbor would bring over her bottle of bourbon and add peppermint for a tonic toddy. I missed my own graduation party/dance, my baccalaureate ceremony and almost my graduation because of the intense blood flow and scream curdling pain. 

Fast forward past university and into marriage...Pain continued to escalate.  Sexual intercourse was torture.  I told my longtime OB/GYN.  His only answer was "have a glass of wine at night to relax" and "use visualization".  My only visual at that point is too graphic to post, but I'll just say it would have caused him to need more than Merlot.  I set out to find answers, but there were none.  You see, my disease was not obvious.  I wasn't bleeding from a slashed femoral artery, so there was no sense of urgency.  I saw no less than 20 OB/GYNs over several years who told me a plethora of things...none of which justified my level of pain.  Finally in 1993 I was diagnosed (by a URO) with what he called textbook endometriosis.  He sent me back across the street to the GYN who says "no such thing".  I'd NEVER heard that word.  It was the Stone Age, pre-tech explosion...I had no access to data.  I went through 2 botched laps (to remove uterus and 1 ovary) then to (remove second ovary and more disease).  My surgeon told me that most women don't experience pain post-surgery and most women don't have residual disease. (insert homicidal thoughts, crying and cursing God---You know, the one in the white coat!)  To this day, my hair bristles when I hear "most women" or "1 in 4" or any statistic.  The only one that matters is if YOU are that ONE. 

I left the first surgeon to see a world-renowned cancer surgeon for women.  He found that the first surgeon had mutilated my insides through his youth and ignorance with robotic surgery.  He had left a portion of my fallopian tube sewn into my vaginal cuff. (yes, you can cross your legs and wince)  My liver enzymes were so high upon admission, the oncologist could not perform surgery.  He told me there was a strong possibility of liver cancer.  He sent me by ambulance to Oschners (sic) Research Center in NOLA.  They found that endometriosis lesions had blocked my common bile duct, causing my liver to die.  But, hey most women don't have this happen, do they? As soon as I was strong enough, I underwent  full open abdomen (incision breast to pubic bone) surgery for 6 hours to remove aggressive stage 4 endometriosis.  My surgeon said that the lesions were choking vital organs and webbing my insides.  The lesions of this disease attach themselves to organs and "bleed".  The body responds by forming scar tissue to "heal" itself.  It's a vicious cycle that is fed by estrogen and most women wouldn't have sufficient estrogen post ovary removal to feed disease.  It was a year since first 2 surgeries and 2 series of Lupron, yet I was once again not most women.  My cancer surgeon told me later that he did what he could.  He said it looked like a shotgun blast of black lesions throughout my belly...everywhere.  He said he excised lesions from intestines and organs as best he could.  He said mine "was not a simple case that could be wrapped and neatly tied with a bow".  He said I'd have to take Megace indefinitely to suppress formation of more tumors.  He was not able to get "it all" and I was high risk for further complications. Good news, I'll live.  Bad news, I'll have to live with it.

I am 20 years post-surgery, still agonizing in pain (pelvic/vaginal/intestinal/rectal).  My cancer surgeon retired almost 5 years ago and I've not found another doctor with his knowledge and diligence to fight for me.  As I read Ms.WW's post about their trip to their specialist, I thought "WOW...what I'd give for a doctor who gives a rat's arse about me.  My PM doctor doesn't even speak good English.  He's admitted he doesn't know me "from Adam" from one visit to the next.  I'm in a death spiral but can't die.  I've seen 8+ specialists in 3 states in the past year.  They scoff at my theory of residual endometriosis and concur that most women don't experience residual disease with no estrogen supply.  They say it's more like "adhesions" that surgery won't solve, so I should seek PM.

This is the "short version", as any of you know, dealing with your disease.  Sometimes the treatment is worse than the ailment.  I only shared this on your forum because I read some of the posts and thought "that's me...opposite sex...different disease...but my treatment has castrated me as a woman and ended any hopes of a "normal" sex life".  ALL BECAUSE of delayed diagnosis...about 22 years delayed, in fact.

Props to GoodLife's post...The tune we're "whistling through the cemetery" changes when it's our grave being dug, whether literally or figuratively.  Be informed.  Do not view doctors as they so often view themselves...gods in white coats.  They can be WRONG.  If you have a good doctor (or team of doctors) consider yourself blessed.  If not, please advocate for better.

HUGS~~Dixie (not whistling)

Posted 9/10/2014 3:05 PM (GMT -5)
JackH said... Earlier today, I commented on the three kinds of PC which Dr Shellhammer commented on: JackH said... <span style="FONT-FAMILY: 'Verdana', 'sans-serif'; COLOR: black; FONT-SIZE: 9pt; mso-bidi-font-size: 11.0pt; mso-fareast-font-family: 'Times New Roman'; mso-bidi-font-family: 'Times New Roman'">Amongst the current generation of urologists, Dr Paul Shellhammer, recent-past president of the American Urologic Association (AUA) and past president of the Society of Urologic Oncology has similarly commented that “<i style="mso-bidi-font-style: normal">we know there are two kinds of prostate cancer:<span style="mso-spacerun: yes"> the kind that can be cured, but need not be cured; and the kind that needs to be cured and cannot be cured</i>.”<span style="mso-spacerun: yes"> Is there also a kind that needs to be cure and can be cured?<span style="mso-spacerun: yes"> We can “ hope ” so, in Dr Shellhammer’s words.<span style="FONT-FAMILY: 'Verdana', 'sans-serif'; COLOR: black; FONT-SIZE: 10pt; mso-fareast-font-family: 'Times New Roman'; mso-bidi-font-family: 'Times New Roman'"><?xml:namespace prefix = o ns = "urn:schemas-microsoft-com:office:office" /> That third kind referred to by Dr Shellhammer, those for whom early diagnosis and treatment improves survival, has been quantified in this way: "There is adequate evidence that the benefit of PSA screening and early treatment ranges from 0 to 1 prostate cance r deaths avoided per 1000 men screened." I don't have medical training, but it seems like there are a lot of other men without medical training who seem to self-identify as being that 1 out of 1000...I guess it's simply a "gut feeling," or a "desire." What would you call it...? I know Jack! I remember reading those exact stats to my wife as I made an argument first against getting another PSA(1st one in 3 years) and then against getting the Bx. And wondering what I was going to do if the Bx did show a little low Gleason PC, and knowing about that 1 in 1000 figure. I did not want to fall into the medical machine with unneeded or over treatment. I got the PSA because I wanted to start T therapy and they required the PSA for that. It came in at 9.1, up from 4.0 about 2.5-3 years earlier. My doc, who felt nothing on DRE, referred me to a URO and gave me some Cipro in case it was up from Prostatitis. about 3 weeks later at the URO, he felt a very small firmness on the left, and the PSA came back at 10.9. Believe it or not, my URO did not even try to talk me into the BX, I just decided I needed to find out. At the finish of the Bx, he told me my prostate was huge and could easily acount for all of my PSA, to not worry and try to enjoy thanksgiving as we waited on the results. Well, I got a G5+4=9, plus PNI. There I was, not only with PC, but a G9 and PSA over 10. Would have never known all of that without PSA and then Bx. ( surgical path downgraded me from 5+4 to 4+5, whoohoo, party! But sadly also SV+/focal margin) But now for the million dollar question: how long would I have lived a reasonable life if I had never had the PSA? How long until bad suffering, and then until death, if left untreated? Can anyone tell me the odds of X amount of years? Then there is 2 million $ question: has the surgery cured me? Probably not, but maybe. It seems it is possible. FWIW, my surgeon gave me no better than 50% chance of needing no other treatments. So far still <.01 six months out, but we know how that goes, don't we? It's a long battle. The followup question is: has it extended my life, even if no cure? And if no cure and a recurrence, is there a chance of a final cure or at least life extension with follow up RT/HT? With a quality of life that is superior to dying of PC sooner rather than later? Maybe years later? It seems to me that there is a reasonable chance to a yes answer to all of the above questions. How long would I have had, with reasonable QOL, if I had not had the PSA? Would I have been better off with no PSA? I don't know the def correct answer, but I know what I wish. I wish when I had that 1st jump from 2.5 to 4.0 back in 2011, I had followed up with another PSA and DRE a few months later, and when it was up some more had the Bx then. That is what I wish I had done in retrospect.
Posted 9/10/2014 3:14 PM (GMT -5)

Big Mac said...
The death rate from prostate cancer has fallen by 1/3 since PSA testing has been done in the United States.

I, like many here, had no symptoms. After biopsy, 10 of 12 core positive, Gleason 6 that became a Gleason 3+4=7, staging was T3a.
My surgeon said the tumor was just getting ready to come out of the prostate and he probably couldn't help me 1 year later. He said judging from the size of the tumor, the cancer was probably there for 10 years, 2 previous biopsies missed it.

PSA's save lives!!!

Over treatments are a problem. But can you blame people that are told they have cancer that want to get rid of it.

Bill from Florida cool

Is it just me, or does "The death rate from prostate cancer has fallen by 1/3 since PSA testing" indicate PSA testing is a good thing, at least for the men in the 1/3 category?
Posted 9/10/2014 3:23 PM (GMT -5)
Hi Billy Bob,
I was way surprised that Augie died so quickly so maybe you are right about the tumor being outside the capsule for a longer time. He always was a sort of gloomy Gus whereas I am very upbeat, I truly think that our attitudes have a lot to do with survival as well as our treatment. You can see in my signature that I wasn't a candidate for surgery which was and is fine by me. Reading of the possible SEs and slip ups I am quite happy being treated solely by meds.
You asked if that statement " if it can kill you it can't be cured " is an accurate one, I have to stick with the idea of life extension being as good as a cure. We all die, some of us just have shortened lifespans is the way I see my life. I used to think that I had a terminal disease it that perspective doesn't fit with my world view at all. In Russia male lifespan is something like 58 due to alcoholism. Obviously they don't have much to live for over there or something genetic drives that drinking as I have read that they keep on boozing no matter where they go.
It's really a different perspective when you know that at any time your cancer can beat all of the weapons you have thrown at it and kill you. I just spend as little time as possible worrying about it. I would be lying to say that it never bothers me, you should have seen me sweating while waiting for my MO to give me the results of my latest, last week, scans and blood work. Everything turned out fine but I was shaking there for a bit . . . Q
Posted 9/10/2014 3:26 PM (GMT -5)

Dixie6 said...
INDEED, JackH...Perspective changes when you feel that you are that "1". I am a female who probably doesn't belong HERE, but I'm not sure I belong ANYWHERE.
Early diagnosis is KEY to treating disease, whether it's prostate cancer or in my case, endometriosis stage 4.

Please humor me for intruding in your conversation. .............. My surgeon told me that most women don't experience pain post-surgery and most women don't have residual disease. (insert homicidal thoughts, crying and cursing God---You know, the one in the white coat!) To this day, my hair bristles when I hear "most women" or "1 in 4" or any statistic. The only one that matters is if YOU are that ONE.
..................................................

This is the "short version", as any of you know, dealing with your disease. Sometimes the treatment is worse than the ailment. I only shared this on your forum because I read some of the posts and thought "that's me...opposite sex...different disease...but my treatment has castrated me as a woman and ended any hopes of a "normal" sex life". ALL BECAUSE of delayed diagnosis...about 22 years delayed, in fact.

Props to GoodLife's post...The tune we're "whistling through the cemetery" changes when it's our grave being dug, whether literally or figuratively. Be informed. Do not view doctors as they so often view themselves...gods in white coats. They can be WRONG. If you have a good doctor (or team of doctors) consider yourself blessed. If not, please advocate for better.

HUGS~~Dixie (not whistling)

Dixie, as far as I'm concerned, your intrusion is welcome! And it has made me tickled to have PC by comparison! wink Actually, I already was since my 39 years old daughter-in-law came down with stage 4 Mesothelioma a few months after my RP.

But your post does make me have to ask: if "most women" do not have all of those issues, then why do you insist on having them? rolleyes ( most men are not supposed to die of PC either, even if they have it! nono )

But, good post Dixie!
Posted 9/10/2014 3:29 PM (GMT -5)
One thing to remember about the "one life saved per thousand" is that it is a thousand men tested of whom the majority will be told their PSA is within the normal range.

Of that minority whose PSA is elevated some number will go on to have biopsies or diagnostic scanning. A strong majority of those biopsied or scanned will be given negative results.

That leaves much fewer than our original thousand who are diagnosed (still too many, but fewer.) Of those diagnosed only about one in ten will choose active surveillance, the rest will generally choose treatment.

Of those treated, a narrow majority will do just fine -- they will retain/regain continence and a tolerable degree of sexual function, with the odds being a bit better if they are young. Their treatment may or may not have been altogether necessary but they are OK and happy with it.

That leaves a fairly small number of our original thousand who have side effects from their treatment that take a big bite out of their lives. Some of them never really needed treatment but they couldn't know. Some of them will recur and of those who recur some will subsequently die of the disease.

That one guy in our thousand whose death from cancer is prevented could be anybody in the treated group. He could be one of the happy men whose side effects are minor. He could be one of the grouchy guys whose treatment left them impotent and/or incontinent. No one will ever know which one he is and the benefit of saving his life must be balanced against the damage done to those other guys whose treatment left them maimed.

Factor in the possibility that even those doomed to recur and die may have had their fate delayed, if not averted, and you have, really, quite a mess to try to sort out.

So, my position on this issue is that this 5hit is complicated and anybody who thinks he has it completely figured out is almost certainly wrong.

Thus the brilliance of our rule about respecting other's medical decisions. Even if those others are doctors.

in his Meditationes Sacræ (1597) Francis Bacon said...
ipsa scientia potestas est (knowledge is power)

... but ...

in An Essay on Criticism (1709) Alexander Pope said...

A little learning is a dangerous thing;
drink deep, or taste not the Pierian spring:
there shallow draughts intoxicate the brain,
and drinking largely sobers us again.

Posted 9/10/2014 3:40 PM (GMT -5)

PeterDisAbelard. said...
.......................................
Factor in the possibility that even those doomed to recur and die may have had their fate delayed, if not averted, and you have, really, quite a mess to try to sort out.

So, my position on this issue is that this 5hit is complicated and anybody who thinks he has it completely figured out is almost certainly wrong.

Thus the brilliance of our rule about respecting other's medical decisions. Even if those others are doctors.

.....

That's what I have been saying, and I could not have said it better, or as good, my own self! This stuff is hard to figure out! 6 months post op and I am not even sure I made the right choice on treatment, I'm not sure I ever will be sure. But, until someone tells me most G9s live for many long comfortable, happy years even with no treatment, then I do suspect having the PSA and Bx and some kind of treatment was the correct way to go.
Posted 9/10/2014 3:42 PM (GMT -5)
Dixie,
Thanks for the other side's view of their similar disease. That's just the point I was trying to make, why not get a look "into your future" by having this test. Your point of it being so long ago that you were first misdiagnosed rings a bell with PC pre 1965. I just think that men let themselves get too frightened by cut happy uros. If they would come by here and check out our G-9 club which is where we keep the worst cases statistically, they would see that active surveillance isn't such a bad idea after all. . . Q
Posted 9/10/2014 4:21 PM (GMT -5)
Survival rates always go up with early diagnosis: people who get a diagnosis earlier in life will live longer with their diagnosis, even if it doesn’t change their time of death by one iota. And diagnosing cancer in people whose “cancer” was never destined to kill them will inflate survival rates — even if the number of deaths stays exactly the same. In short, tell everyone they have cancer, and survival will skyrocket.

Post Edited (JackH) : 9/10/2014 3:36:37 PM (GMT-6)

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