Apr '02 (PSA=1.0). Apr '03 (PSA=1.5/ Platelet=168). Sep '05 (PSA=1.7). Sept '06 (PSA=1.8/Testoterone=475; VIAGRA Rx began - "aging men with Testoterone between 200-300 may benefit fromED treatment"). May-18-07 (PSA=2.09). May-30-07(PSA= 2.2/Platelet=136) . Dec '08 (PSA=2.0/Testoterone=452; VIAGRA Rx cont.) Aug '09 (PSA=3.5/Platelet= 115). July '10 (PSA=20.4).
At what point should there have been... - Advanced Prostate...
At what point should there have been "a red flag" to a Primary Care Physician that indicated a problem, based on this data?
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sdnb
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July 2010, certainly. How old is he? What race? Any family history? DRE?
It is quite normal for PSA to increase slowly with age. For older men (over 60), a PSA threshold of 4.0 is often used for further diagnostic tests.
Viagra use is unimportant. His testosterone is normal and is unimportant. His platelets don't matter for this.
Tall_Allen, I appreciate your fast response to my question. My husband actually passed away in 2015. I had kept up with many of you on Health Unlocked, and someone posted a message that caught my eye today. I was drawn into the discussion immediately due to my obsessive nature to want to accept my late husband's diagnosis and subsequent treatments for five+ years. It does me no good to dwell on our journey, this long after the fact, but I don't imagine I'm the first wife to have a difficult time understanding everything that took place.
My husband's family had no known history of prostate cancer. He was a healthy, active 63 year old Caucasian male when he was diagnosed in 2010. DRE indicated nothing. Looking back, I would have thought that as early as Sept. '06 when his PSA was 1.8, then jumped to 2.09 in May '07, that that would have raised concerns. Definitely, if not then, then absolutely the jump from Dec. '08 to Aug '09, (from 2.0 to 3.5 in 8 months!) would have been serious concerns. But … it is what it is, unfortunately. My best wishes to you and all of the other gentlemen with whom I've watched here on this website, Tall_Allen!
PSA is a really bad diagnostic test. What makes it so bad is that there is no PSA cutoff that indicates prostate cancer and doesn't indicate some benign reason. The jumps (until 2010) are very normal in a man his age. PSA velocity is a lousy indicator too. For a man his age, PSAs between 3 and 4 are equivocal, especially without a positive DRE, and following up with another PSA within a year is reasonable. Three-quarters of men with PSA between 3-4 have no prostate cancer on biopsy, and most of the rest, when diagnosed, are diagnosed with low risk PC that doesn't need immediate treatment anyway. Since your husband was diagnosed, there are some new tests, like 4Kscore or PHI, that are more sensitive for men in that gray zone. It doesn't sound like his PCP did anything wrong, your husband was just unlucky.
Thank you, your additional comments are deeply appreciated. My frustration still wants to blame the doctor. What you have said here makes it a bit more tolerable. I suppose I'm just a "sore loser"..... tongue-in-cheek. Yes, he was very unlucky, and it tears my heart to pieces. I truly hope that you will be victorious over this dreadful monster. 'Bless you.
My PSA tests starting in my late 40s were something like 2.0, 2.5, 2.0, 216.0! I have the same rare type as Hidden , and the same "took off with a jet pack" experience. I had some symptoms in the months before diagnosis, but the most likely explanation was an infection.
It's natural to ask what we or a doctor could have done differently, and the answer I've come up with is "don't get cancer" 
My mom agonized for years over decisions she had to make in the final days of my dad's life, and whether medical mistakes were made. The way I look at it, bladder cancer was what started a series of events leading to his death. Take away the cancer, and there's no opportunity for bad decisions and mistakes.
Neither humans nor our medical technology are perfect. Cancer and other diseases put us at risk of dying due to mistakes or poor decisions. I find it more helpful to think of the disease as the root cause of death, and not the imperfections of our medical system. (Excepting gross incompetence and such)
Thank you, tom67inMA, for your reply. I'm sorry that your mother had to decide about issues regarding your dad's health. You are compassionate in saying it's "not the imperfections of our medical system", but rather the disease itself that leads to the death. I know in my heart that what I want someone to say to me is that it's the PCP's fault. What would change the situation, not a thing, so I don't know why finding fault with his PCP seems to be so important. Men, like yourself, who have made similar comments have been helpful in opening my eyes to the stark realization that Stage 4 Pca took my husband's life, regardless of when the PCP discovered it. A hard pill to swallow, but it is what it is, or it was what it was.
From what little I know of psychology, it's easier to blame the PCP. When you do, part of your mind is content to know why this all happened, and you get a sense of control. It won't happen next time because you'll use a different PCP or something.
It's much harder to admit that we don't know why this happened, but it avoids toxic emotions like anger and IMHO is better in the long run.
Thanks, Nalakrats…… it's after the fact. My husband passed away in 2015. I had been a frequent reader on Health Unlocked, and someone's post caught my attention today, and that's all it took for me to start obsessing once more about the past. I simply can not accept the way in which my husband's cancer wasn't detected before 2010, but it's of no use to dwell on all of the "what if's". I appreciate your taking time to offer your feedback. Hope you are "keeping on keeping on!" Continue the big fight for those who can't fight!
First flag I see is the 3.5. Knowing what I know now, I would have gotten more frequent PSA tests when mine went from 1.2 to 2.4 over one year. The doubling time is more important than absolute value.
Absolutely.... my point exactly, ron_bucher. If you have read my previous messages to the two gentlemen above, then you will already be aware that my husband passed away a few years ago. I tried to argue with his primary care physician that he should have realized that something was terribly wrong when my husband's psa increased from 2.0 to 3.5 within 8 months, but he denied any wrong-doing, stating that "3.5 still remains under 4.0". He should have referred my husband to a urologist, I feel, but instead he remarked, "I can't send every man who has a 3.5 psa to a urologist, or I'd be sending everybody to one." He was not interested in hearing my rebuttal about the velocity or doubling time. I'm hopeful that your psa is remaining at 2.4 and not rising. As one of the men in my late husband's support group says, "Never give up!"
Id agree with the above replies, but I have a question. If the DRE indicated nothing, what was the cancer diagnosis based on? Merely having a PSA of 20 could also indicate inflammation of the prostate.
Did he die from cancer?
What was the treatment given after the Pca diagnosis?
Arete1105, right. If DRE was not an issue, then why couldn't the high increase from 2.0 to 3.5 have been caused from some infection, and why didn't the PCP offer to prescribe something to my husband at that point. He had been known to have had prostitis (sp?) quite a number of times over his adulthood. Yet the PCP did nothing during my husband's annual exam. When his PSA rose to 20, then he had the biopsy which revealed a Gleason score of 9, and almost every core came back showing cancer. He began hormone treatments from 2010 to 2013, during which time his PSA had bounced up and down in the single digits to the high teens. "Our" oncologist started chemo in 2013, and he remained on chemo with an addition of various oral meds until my husband told the oncologist that he had had enough, and was ready to just ride it out. Subsequently, he had three unbelievably horrific weeks, then died. Thank you for your detailed questions.
Back in 2009 the U.S. Preventative Services Task Force (USPSTF) recommendations for PSA screening for prostate cancer for most younger men was a "D" (sometimes jokingly referred to as "don't"). It's no wonder that many doctors then often advised their patients that the subsequent risks for future biopsies or other procedures triggered by a slightly higher PSA probably were not worth the benefits of finding only a statistically few prostate cancers.
aafp.org/afp/2009/0815/p381...
I remember having a normal Digital Rectal Exam and a normal PSA in the 2.0 range when I was in my early 50s and at an HMO that was following such guidelines. I was treated there by an oncologist for a melanoma, and also got annual colon cancer occult fecal blood screening, but was never given any subsequent PSA tests.
Since then I retired, changed doctors a couple of times and at age 65 presented with lots of pain, and a skeleton and many lymph nodes full of metastatic prostate cancer ... with a PSA of 5,006 (not a typo), and facing whatever time I had left with Stage IV prostate cancer.
Anyway, today the USPSTF has somewhat better guidelines, from the perspective of men who were where I was in my 50s-60s, and those with special risks. Upgrade to "C" for younger men, and still at "D" for those 70 and older with no specific mitigating factors.
uspreventiveservicestaskfor...
In real life practice, or 20-20 hindsight .... "the squeeky wheel gets the grease", sometimes.
I can empathize with the "shoulda/woulda/coulda" thoughts that can run through one's head. I can understand how long it may take for such thoughts to settle down.
Peace to you.
Charles
I truly appreciate your understanding my irrational thoughts, Charles. Most people would have said "just let it go", but that's not my nature unfortunately. Funny that you mentioned "the squeaky wheel gets the grease" because when my husband was told his PSA had risen from 2.0 to 3.5, he told me later that he thought to himself, "Maybe I should go somewhere and have another PSA test and just pay out of pocket." If he had been a bit more squeaky, i.e. assertive, then perhaps his cancer could have been treated differently.... maybe yes or maybe no. I plan to check out the links above that you provided, as I'm still interested in the realm of prostate cancer and newer treatments, etc. I will be thinking of you and praying that your PSA of 5,006 ('wish it was a typo) will drop. Enjoy your retirement!
Hi again, sdnb. Not to worry. My initial PSA in the thousands came down to 1.0 with initial Lupron treatment in late 2013. A few years later it rose again to around 95.0 with "resistance", but went back down to 1.2 again after added Xtandi. After 3+ years on Xtandi my PSA has starting rising slowly again. Most recently, it's up to 9.2. I'm grateful to have had a fairly decent 6 years 4 months since initial diagnosis, so far. Perhaps this summer I will start a new prostate cancer treatment. In the meantime, I just started with adjuvant Keytruda for some recently resected Stage IIIC rare melanoma. Doing OK, so far.
If you want to independently explore some general guides for approved prostate cancer treatments, you could look at the NCCN Prostate Cancer Guidelines for Patients or the Prostate Cancer Foundation's Patient Guide. Here are the links.
nccn.org/patients/guideline...
"Cutting edge" stuff is typically in Clinical Trials. In the USA, this is a handy place to start to "dice and slice" for details.
clinicaltrials.gov/ct2/resu...
Charles
That list of dates tells us that Psa in April 2002 was 1.0, and 2.0 in Dec 2008, and then 10.0 in July 2009, so the red flag is Psa rise. If dad had no trouble with his PG, maybe Psa rise might have been from 1.0 to say 1.2, but it went up to 10. But all this was over ten years ago.
Treatment may have begun when Psa was less than 5.0, in maybe Feb 2009. The treatment at first only looks at Psa, and Viagra and Testosterone levels are unimportant unless dad had abnormally high testosterone, which may have speeded up the rate of Psa increase, and hence speeded increase of Pca progress. When a man gets Pca, and an RP is not performed early enough, his Pca continues and testosterone is a man's enemy because most Pca depends on Testosterone to grow as fast as it does. Hence ADT is often first treatment used to slow down speed of Pca growth and give a man a longer life.
Patrick Turner.
Wow, Patrick-Turner, you know I hadn't thought about the fact that our journey began 10 years ago! It seems like only yesterday that I heard my late husband say to me, "It doesn't look good." A number of gentlemen on this site have been so blessed to have had prostate cancer for maybe 10 or so years. How I wish my husband had lived 10 years after being diagnosed. At first ADT was the treatment of choice for 3 years, then chemo the last 2 years. But his oncologist told us that considering how fast his cancer was spreading, he was still a miracle to be lasting that long, having been diagnosed at Stage 4. That was in probably about 2013-2014, mid-way between diagnosis and passing away. To cheer us up, he added that my husband was the "best" patient he had ever treated. We weren't exactly sure what that was based on, but we took the comment in a positive manner. I appreciate your taking the time to reply to my question.
After my chemo failed in about September 2018, I wanted to get Lu177 and I began that in Nov 18 and had 3 shots by May 2019, and it gave me an extra year+ with high quality of life. My Psa is creeping up again, but is only 3.5 now, and docs are still not sure what's causing that but another PsMa scan will show more, and maybe I can get more Lu177 and it could give me another year, or more, and research doctors in Melbourne say that's possible and likely. But I don't know how C19 virus is affecting the availability of Lu177 yet, so I hope I really can get it when I want it. It was available in Sydney, 300km away from where I live, so I can get there easily and drive to the clinic and drive home, and stay well separated from other ppl.
Try to stay safe, and well, and sane,
Patrick Turner.
Seems as though there is great controversy about psa in use at all or what level to be concerned with.
On the one hand there is the thought that a psa above 4.0 or rapid doubling shows cause for further investigation, testing.
Now here begins the controversy: if a biopsy finds Cancer the treatments can be more harmful than living with it. Or so the discussion goes. One medical society says given that the Cancer is slow and the average age for discovery is 66, with expected life left of 8-12 years, the Cancer will not kill you.
In other words Prostate Cancer found because of the psa test is of little concern compared to the biopsy and treatment side effects.
Since the push for routine psa testing has lessened the incidence of PCa has declined significntly. Deaths caused by PCa remain steady.
My personal opinion is make psa testing start in a man's mit to late 20's. This creates a Base Line.
Now compare Breast Cancer testing. It is pushed hard on women, and for good reason. But even given the testing being so frequent and common the death rate, statistically, has not changed. Nor really has the in incidence level. Vastly more testing than psa testing.
But not similar results. More Breast Cancer vs less Prostate Cancer.
Hmmm, men deserve the same level of concern and testing as women and both need better treatments.
So, when shoud men be concerned? Sooner for me would have been much better. Waiting just let the Cancer become aggressive.
Draw your own conclusions.
Thank you for your interesting remarks, teacherdude70. I heard a while back that it was being considered to lower the baseline from 4.0 to 2.0 for further testing for prostate cancer. I don't know if anyone else read that. If that had been so, then my late husband's diagnosis could have been determined around 2007, rather than 2010. It seems to me that those 3 earlier years would have made a huge difference. There were a few facts that puzzled me. There was nothing discovered during my husband's DRE, nothing at all that would have given the PCP any suggestion that something was wrong, but the extremely fast increase in PSA scores should not have been ignored by the PCP! As to your comment that "men deserve the same level of concern and testing as women.....", I completely agree! I am blessed so far not to have a diagnosis of breast cancer, although my mother and my paternal grandmother had it. My 92 year old mother is still living and very active. My grandmother passed away at 89, but from a heart attack, it was determined, and definitely not from breast cancer. I wish you and each of the gentlemen on this website, especially the ones here who took the time to reply to my question, the very best treatments and positive futures! God bless you. (I'm a retired teacher, also.)
Glad you are doing well and sorry for your loss.
The prostate might not feel different with liwer Gleson scores. But that score cannot be determined until a biopsy is completed.
I encourage men to seek a biopsy after a dre if the psa has doubled in a short time.
Stay Safe. Stay Healthy.
Viagra is unimportant and has bearing what so ever. And, neither did your T score. The screw up was with your 3.5 PSA score. Your PCP should have said, “We need to watch PSA. Retest in six months. If it gets to 4.0, then you need to see Urologist and have a biopsy.” HOWEVER, the real screwup happened in 2008 when the USPSTF made a recommendation to not “worry” men with PSA testing in your case. Your PCP gets a walk.
When a group of non Urologists and with no experience in treating prostate cancer and especially advanced prostate cancer tell you and physicians no worries, (“too many men are having needless PSA tests and biopsies for a slow cancer”) Your PSA result happens. So sorry that you are caught up in the National medicine to save healthcare costs scam.
You are not the only one; and there will be more like you and a lot of guys in this forum. ........ Man, I just pissed off a lot of people.......... too bad. Facts matter, saving healthcare dollars doesn't; not when one has advanced prostate cancer. I recognize that there are strong advocates in this group for this USPSTF, sorry, but it is how I feel and it alleviates PCP blamed.
GD
timotur• in reply to
"HOWEVER, the real screwup happened in 2008 when the USPSTF made a recommendation to not “worry” men with PSA testing in your case. Your PCP gets a walk"
In 2010 I had to beg my GP for a PSA test, as he claimed it causes anxiety and overtreatment. Mine came back at 3.3, and he said nothing to worry about, no family history, -DRE. So I didn't check again until 2018. Should've gotten a Urologist in 2010 and started tracking it. The one test I wish I had known about is free-PSA, it was very telling in my case, which I confirmed with a 4K, then biopsy.
It just seemed so ridiculous for a doctor to think a PSA test would cause anxiety and overtreatment. What could be wrong with merely checking a man's PSA? I just don't get it.... perhaps women don't understand. If a PSA of 3.3 was your very first time to have the test, doesn't that make sense for the doctor to look closer into your situation? Forgive me for questioning your doctor, but I thought most men's PSAs are supposed to remain "undetectable", in which 3.3 is not. My hope is that you will be doing better in whichever treatment works best for you, timotur! Thank you for responding to my question.
SD: it's unfortunate the GP didn't raise concern when your husband's PSA jumped from from 2.0 to 3.5 in 8 months (Dec. '08 to Aug '09). Any PSA doubling-time less than 12 months should be tested further. From what I learned, DT is more important than PSA level. My PSA was 1.1 in 2001 and 3.3 in 2010, but I wasn't testing often because my GP downplayed it, and assured me I had nothing to worry about since I had a negative DRE and no family history. By the time I tested again in 2018, PSA was 23 in 2018. I think it took off probably about 2016 because my doubling time was about 10 months at diagnosis. I was very lucky I had a low Gleason (3+4) and had good treatment (see profile). It's really unfortunate we lived through these bastardized test guidelines when we were vulnerable in our 50's and 60's.
sdnb• in reply to
Gourd_dancer, yes, it's exactly what, in my opinion, happened.... my late husband's PCP "got a walk". My husband was forever a softball coach, so it's fitting to use that expression which I had heard often during his games. If he were here, I'm quite sure he would laugh at your comment! He was much more in touch with reality than I was, so during times of my anger and frustration with his PCP after the diagnosis, he would accept it stoically. His PCP was, as you said right on the mark, an inexperienced doctor in the field of urology, which makes me even more upset to think that he didn't even refer my husband to a specialist. The PCP said he couldn't refer every man who came into his office with a 3.5 PSA, or else he'd be referring everyone. That parallels the concept of "no worries" and "too many men are having needless PSA tests". You have really helped me. While I still to this day, approaching five years since my husband's death, do not understand the approach my husband's PCP took, what you have shared has helped me see what the PCP might have been assuming from the USPSTF. My sincerest wishes to you for a victory over this dreadful illness.
Anxiety after a psa test? Sure because of the word Cancer. But don't women have anxiety after a pap test or a breast exam?
Of course they do.
So following the psa test "logic" stop doing those tests.
Isn't whats good for the goose good for the gander?
I think the doctor's thoughts on the psa test are the heights of sexist.
Sorry if this ticks some off but it is truly Logical.
There is no one answer to your question. It depends of age of the man being tested as PSA is expected to rise over the decades.
There are too many stories like this where a GP or even a urologist dismisses signs that should have prompted action to diagnose and treat this disease. You aren't alone. There's nothing you could have done. We trust our doctors, maybe too much. BTW my PSA had hardly changed much at the time of my biopsy / diagnosis. A DRE turned up non-uniform firmness of my prostate and got me sent to a urologist for a biopsy. My PSA (which my medical school GP had refused to measure, following the silly guidelines) was only 2.7. The year before it was 2.6. My father died at age 49 because his VA doctor missed a celiac disease diagnosis, condemning him to eventual cancer of the duodenum.
sdnb• in reply to
Earlier I mentioned that I had read where the baseline of PSA 4.0 might change to 2.0. With your PSA of 2.6 one year, then 2.7 the next year, plus your DRE status, that seems wise to have the biopsy. Am I understanding correctly that you were diagnosed with prostate cancer with a PSA of only 2.7? Did your GP do a DRE the year before when your PSA was 2.6? I'm trying to understand if it was the "non-uniform firmness" of the prostate that was basically the reason for the diagnosis, since the PSA scores were low. I'm sorry that your own dad's doctor at the VA missed the celiac disease. It saddens me so much to hear of stories similar to what I feel was my husband's situation, where PCPs ignore signs that could save a person's life.... whether or not it is to save money, as one man wrote above, or if it's to not create anxiety and overtesting. Lives matter!
• in reply tosdnb
Yes, PSA only 2.7 at time of diagnosis. Failed DRE, sent for biopsy, Gleason 8 diagnosis, all 2016. DRE was OK the prior year (or was it -- performed by different GP).
Hello sdnb.
What's weird is that your husband's prior post was on Saturday, August 12, 2017 but you mentioned that he passed away in 2015. Somehow that doesn't compute (or a typo)....In that post he thought his Pca may have been caused by his very active sex life when he was single. We all replied that (we were jealous) if that was the case millions and millions of more men would have Pca.
Answering your question of today I would think a red flag should have been raised when his psa evaluation spiked from Dec 2008 from a 2.0 to - Aug 2009 to a 3.5.....That's a 1.5 jump in his psa in 9 months. But you must take in account that Primary care physicians are not Urologist so they are usually looking for the 4.0 threshold. Of course there's no question that a Psa of 20.4 in July 2010 should have set off rockets. Do you know if your husband's blood was being analysed by the same laboratory during all those years?
Hopefully this post has not upset you and I am indeed sorry for the loss of your husband. And I bet that he is behaving himself with the Angels he's hanging out with..... Stay Well...
Good Luck, Good Health and Good Humor.
j-o-h-n Tuesday 03/31/2020 8:39 PM DST
Hi " j-o-h-n", goodness no, your post definitely did not upset me, but how very thoughtful of you to include that little side comment. Indeed, my husband is having the time of his life hanging out with the angels! LOL! I thank you for your reply to my question. It seems that you took notice of the large jump from 2.0 to 3.5 from Dec. '08 to Aug. '09, as I did. I think that is my most supportive platform in my view that my late husband's PCP neglected to do his job correctly. Who wouldn't notice an increase that huge, regardless of a medical background or not? As you wrote, "Primary Care Physicians are not Urologists". That's exactly why I questioned why he didn't refer my husband to one. Could there have been an infection that caused the steep increase? Could there have been other explanations? The DRE revealed nothing. Earlier I wrote that I read where the PSA baseline of 4.0 might be changed to 2.0. That would have made a difference in my husband's approach. I'm assuming that my husband's blood was tested by the same lab year after year due to his blood being drawn at his same PCP's office, but that is a very interesting thought! Could there actually be a difference between one lab's results and another lab's results? Hmmmmm? Something new for me to worry about... LOL! Your comments were unique, j-o-h-n, and I believe I'm now remembering some of your humor in other posts from a few years back. Thank you so much for adding new insight and for bringing a bit of laughter to my weary mind. Good Luck and Good Health to you, too. You already have plenty of Good Humor!
Can I add this to the mix?
You as a person must be comfortable with your doctor as a person. And they need to interact with you as a person.
Doctor's are human and need to be recognized as such.
Get to know them. If they refuse then find another doctor!
Then ask questions, lots of questions, and make sure you really understand the answers. Write down what you want answers to and hand that to your doctor if you like.
Have a second person with you and make sure they understand also and ask questions too.
I suggest second opinions if you are not comfortable with your situation.
Surgeons, oncologists, and radiation oncologists in the same organization is good - different perspectives.
One question to ask is "how many of these Cancers have you treated?"
Felt good to unload.
Be Safe & Healthy.
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