HealingWell
Search Close Search
☰

Anyone just blown off follow up PSA testing?

Support Forums
>
Prostate Cancer
✚ New Topic ✚ Reply
1 2
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 1/20/2014 11:48 PM (GMT 0)
I have to refer back to my father. He got new PCa 25 years after his initial diagnoses and surgery. The docs figure a bit of prostate was missed the first time around and it, independently, developed cancer on its own. I don't know how often he was tested but he kept it up for a mighty long time.

He lived another 10 years after proton beam for this second go around. There was a lot wrong at the end but none of them were PCa.
Posted 1/21/2014 12:33 AM (GMT 0)
I'll be happy as hell if I ever get to the point where only annual tests are necessary!
Bob
Stage Pt3b
Posted 1/21/2014 12:49 AM (GMT 0)
Inchoation: 

 I am similar to you in being downgraded after surgery to a Gleason 6, but with a pre-surgery PSA of 3.3.  Since my surgery,  2.5 years ago, I have now decided to go from 6 month testing to yearly.  All of my tests, using the ultrasensitive test have been consistenly <0.015 which is the lowest dectecable limit of that particular test.

I am not a medical professional, and don't want to alarm you in any way, but if I am reading your statistics correctly, you have only one post-surgery PSA number to base your actions on.  And although you are technically a member of our "zero club (<0.1) your actual number of 0.06  could be lower (such as <0.02 or <0.015) which is the minimum for many of these ultra-sensitive tests.  For many of us the "<" (less than) sign is very significant.

You certainly have a super pathology report that would easily rate as an "A" for many of us on this forum. But even though you were a Gleason 6, you had a quite high pre-surgery PSA at 12.4, and you have not reached the lowest limit of your test. So if I were you, I would get another test at the 6 month mark and if you get a number such as <0.02 (or even lessthan that) then you have reached an excellent "nadir". THEN you can more confidently increase your testing interval.

Just my opinion as a very conservative and "statiscal" type of person.  Good luck.

Bill K. from NJ

 

Posted 1/21/2014 2:41 AM (GMT 0)
Thank you everyone for replying... Bill K from NJ... My high PSA, prior to my biopsy, is and was troubling. Uro said I likely had a nasty case of prostatitis to go along with PCa. I had tons of symptoms that caused me to seek medical attention where I usually wouldn't...but they were so severe I had no choice.

I always felt that an injury led to my problems. I tried lifting a 200lb object I thought was more like 50 and really hurt myself that day. I strained like crazy wrestling with this dead weight I'd sorely miscalculated. From that moment, where I heard a pop inside, and not my back, I had symptoms that never went away until right before the surgery. Lots of urine leakage. Lost of pain. Big PSA over and over after a total of 52 days of Levaquin. It did drop a few points, and the idea of chronic prostatitis was floated.

The PSA scores were something I wanted to make a separate thread about. I see most people here have very low PSA scores. Mine was relatively high by comparison. It stayed high from February 2013- July 2013. I was hoping it would fall but it didn't and here I am. Even on the 3rd PSA test URO thought I didn't have cancer. All these DRE's came back negative save for the word "boggy" being attached to how my prostate felt.

On an unrelated note, if I truly did have chronic prostatitis... having surgery was worth it just based on quality of life issues that chronic prostatitis can put you through. If not for those issues, I would've waited until my 50th birthday to get a PSA test based on a promise to my great uncle. Those painful drops of urine rolling down my leg helped lead me to get in and have it caught early and for that I'm thankful.
Posted 1/21/2014 4:01 AM (GMT 0)
Inchoation:

Ok, your high PSA score could certainly have been due to BPH or prostatitus or even simply by having a very enlarged prostate (Mine was 67 grams and about 2.5 times the size of a normal one). What you now state regarding your PSA reading and other prostate problems is very good because it may remove that factor regarding any possible recurrence.

There are other factors from your pathology report that may give you more confidence as to what PSA testing interval to select. They are: tumor volume or what percent of the your prostate was PCa (the lower the better) and total size of your prostate (here it is the large the better).

Yes, I know that PSA testing is something that we all hate. But you really should get a few more tests at intervals of less than 1 year to define your true "nadir". Just to be really sure, in my opinion. And I will leave it at that my friend! Good luck.

Bill K from NJ
Posted 1/21/2014 4:16 AM (GMT 0)
My prostate was a mere 40gm...so BPH wasn't ever a cause of my high PSA.

Here's my cut and paste from my pathology on my tumor size:

Single tumor 0.2 x 0.1 x 0.1 cm right mid
posterior.
Posted 1/21/2014 11:11 AM (GMT 0)

Inchoation said...
.......I won't do radiation and chemo isn't something I'd consider, either. HT is about it for me should it return.

I'm not a fatalist, but if this returns, my options are severely limited, by my own desire.

I have read through your thread and am trying to work out what you want from regular testing. Most people in your situation want to know if the PSA is rising and whether they have another curative shot with salvage radiation. Or if their cancer is not curable they want to know when to pull the trigger on Provange or some other treatment. If this is not your plan, why get tested at all? You could stop the testing and then treat any symptoms with HT should they occur. And given your final pathology report the chances of your cancer recurring is small.

I would find it hard to recommend this course of action for myself or anyone I love, but your are right, we are not all the same. And given your stance on future treatment it has it's own brand of logic.

Regards,
An
Posted 1/21/2014 1:59 PM (GMT 0)
What I want from regular testing is to be told there's no reason to do it other than annually. This every 3 months thing is something I'm wondering if it's necessary or just a way to keep the uro banging the insurance? I have a real aversion to the medical field, ironic, I know, considering the incredible gift they gave me, recently.

It upsets me greatly that people are looked at as dollar signs and their best interests are often secondary to the almighty dollar. I don't want to be put through unnecessary hoops all in the name of profit. It is part of the deal, I understand, but who wants to feel like their life may be on the line every 3 months by being told they need these tests if the reality is they really don't. It might be nice if a uro said...Hey, I have you on a 3 month test plan, but realistically speaking the odds you're going to find recurrence is minimal. That type of thing was not said to me on the bone scan until after when it was said of my result that it was expected. Why not say it's completely unexpected to see a positive on the front side? The "bedside manner" is non-existent in my experience. Do these guys not realize that sending someone off for a bone scan after telling them that if it's spread there's likely nothing that can be done but "give shots to keep you comfortable" and yes, that was said to me after diagnosis. So, a husband and father of 3 young children is sent to a scan believing if the scan doesn't go his way (but never told his odds were incredibly in his favor) that his life is over and he will live his remaining time knowing his children will watch his father get buried is a pretty sick thing to do to someone.

Do your uros tell you anything about the likelihood of your testing showing recurrence? I realize it can happen in any set of circumstances but there are probabilities that I don't think they want to tell you so that you'll actually do the procedures. How many unnecessary biopsies and bone scans are performed each year on unsuspecting men? I just don't want to be a chump because that is what is most beneficial for the uro and his business. I want to know what is truly best for me with all the facts listed. Tell me there's a 2% chance that I'll see recurrence if that's what it is, and let me decide if it's really worth it to be run to tests every 3 months. I may choose based on sound information not to do them. Let me know how likely it is that waiting a few extra months to be tested is going to potentially hurt me. Don't leave the tests open ended and say I need them because there's always a chance. I get that.

Post Edited (Inchoation) : 1/21/2014 7:05:18 AM (GMT-7)

Posted 1/21/2014 2:40 PM (GMT 0)
My 3-month PSA tests are not looking for recurrence as much as the speed with which it is coming back, so I'll keep doing them.

As to "banging the insurance", the PSA test is billed and paid through the lab at the "agreed" price. The uro actually only gets $2.80 for doing the blood draw at the "agreed" price. He has indicated that his practice is considering stopping blood draws and lupron/prolia injections since they get far less than cost for doing them. This would force me to go to a local lab and sit with the masses getting blood tests for job drug testing to get blood work done, and I'll have to go to a different lab (not Bostwick, who does the tests now).
To get Lupron / Prolia, I'd have to go to the cancer center, pay the outpatient fee, and get the luck of the draw as to what student would do it.

Bad deal for me. He can "bang the insurance" at $2.80 a shot all he wants if it gets me better care. I hope he does not quit doing the injections.

My GP has already stopped doing blood draws for that reason. He was getting the same $2.80 per vial, and finally quit. The local lab set up a "station" in the office building, does it themselves, and gets $20+ "agreed" price for the draw, but each time there is a different idiot who is just learning how not to do it.

I think the doctors may be the ones getting "banged".

Post Edited (142) : 1/21/2014 7:43:07 AM (GMT-7)

Posted 1/21/2014 8:06 PM (GMT 0)
Just curious, as a newbie here, you guys may have stated this in past posts, but, 142 ( moderator) and Inchoation, where do you live?
Posted 1/21/2014 8:19 PM (GMT 0)
Also, a doctors bedside manner and my overall feeling regarding his approach dealing with me and all my concerns, has a major impact on me retaining his services. Thankfully, for me, both my uro. and the surgeon that did my RALP, couldn't have been more accommodating. The surgeon spent at least 1 hr. with my wife and explaining all aspects of my situation and answering every question I had. (Thanks to this forum, I had quite a few). I guess my point is, the negativity that I feel some guys are expressing here, I don't, at least at this part of my journey, have and I feel bad for anyone having to feel this way. It is bad enough that we have to be on this journey let alone feel that the pathway in filled with potholes. IMO.
Posted 1/21/2014 8:32 PM (GMT 0)
Lotsahope,

I have to remain totally anonymous in any internet presence. You'll have to come to a GFMPH weekend if you want to sort out where I live, but then you'll be sworn to keep the secret at the risk of castration. Oh, wait, that isn't much of a threat around here, is it? Well, at risk of something ....
devil

Let's leave it at "in the U.S."

Negativity in some sense is almost a given for some here, as we are the ones who either did not get cured and could not leave it all behind, or have some "insane" desire to stick around and help the new guys.
Posted 1/21/2014 8:35 PM (GMT 0)
Lotsahope....I'm right outside of Dallas,Tx. I blame myself for not changing uros...I did it once before,(I went 19 days without getting results on my 2nd PSA and it upset me greatly) and I should've again, but he came recommended from a life long friend's wife who is a prostate cancer researcher.

It got contentious with my uro so much so that I question if my pathology from the biopsy was even mine. I went from a 7 to a 6. I asked him why and you could tell he didn't want to talk about that. I pressed him and he said that some areas of the country may read things differently. Was a bit hollow considering I just altered myself irrevocably based on the biopsy report attained through his office.

He wanted me to use one of "his guys"...but I decided a plane trip north was a much better idea. No way in the world was I using anyone he recommended. Now, my insurance no longer supports him as of 1/1/14 so I will never have to deal with him, again, which is probably a very good thing.

As bad as my uro was, the surgeon and Mayo was a 180. Just a tremendous experience. Top notch.

BTW...I want to say that my former uro only suggested shots to keep me comfortable after the bone scan showed a faint positive in my left orbital. He told me at that point it would be over for me if it proved to be cancer, but they wouldn't know for sure until the surgery. A nice 6 weeks that was waiting to find out if I was dead for sure, or going to make it.

Post Edited (Inchoation) : 1/21/2014 1:38:42 PM (GMT-7)

Posted 1/21/2014 9:07 PM (GMT 0)
Inchoation,

You have a point about overtreatment of PCa, this is agreed by many and patients who have low probability of progression are free to do AS.

If you are railing against the medical profession and medical costs, the PSA test is not the best candidate - firstly it is the cheapest test, in Australia from memory it is under $20. So doing it yearly saves all of $60.PSA post surgery is a tracking tool to see if the prostate cancer is progressing or not. There is no reason to do it if you do not want to be treated further. So don't do it. You will save $80/year and if you are if the mindset to get anxious, a lot if anxiety. If you are curious many years from not you can spend the $20 and do another test.
Posted 1/21/2014 9:26 PM (GMT 0)
Thank you, An38... I may put myself in a position to have no insurance here shortly...I can always go on my wife's, if I need to.

If a PSA test only costs 20 bucks, which in the states I would find hard to believe, I would continue doing them.

Bill cautioned my 0.06 was cause for concern. I'm not sure how to take that opinion. I've researched a ton on that issue and the idea that anything less than 0.10 is considered undetectable. It isn't even clear how sensitive the array was in the lab my sample was sent to. Also, as many, I had nerve sparing surgery... that can leave fragments of benign prostate tissue behind causing the PSA to be a little higher than maybe I'd like.

Oh, I would like to know...but there won't be radiation or chemo involved if it's found things aren't going as I hoped. I would probably do Gerson and variations thereof and rely strongly on my faith should it return. I took the big swing, that's why I opted for surgery. I don't want to be in this constant loop of medical treatment...not that anyone does. The mind and spirit are powerful things. I've seen a guy literally wish himself as sick as anyone you've ever seen...just totally catatonic from within his own mind. The guy is fine now, but I learned the power of your attitude through seeing what happens when it's the opposite of what it should be.

If my next PSA comes back as "undetectable"... I will probably wait 6 months to return instead of 3. If the 6 monther is good, then I'll go to annual. As I noted earlier, I was surprised my uro told me he'd see me in 4 months after my surgeon advised testing every 3 months. Surprisingly, Mayo didn't send him my medical records...when he walked in to see me, he'd just learned I'd been treated. Had no clue how it all went for me. I was there to see him about a complication from surgery and to get my 3 month PSA test.

Hoping USA PSA tests are inexpensive for those without insurance.
Posted 1/21/2014 9:55 PM (GMT 0)
"Undetectable" for my uro/surgeon is <.1
Posted 1/21/2014 10:23 PM (GMT 0)
Same here, 142. I researched this extensively because my result came via a voicemail, so I could ask no questions, and still haven't. I was told it was 0.06 "which is considered normal" said the female voice on the line. I quickly jumped to Google and looked all over the place. I found one place that said 0.06 was cause for concern...and that actually anything over 0.02 was cause for concern. I'm wondering if the article mistakenly put the decimal point in the wrong spot and meant 0.2?

I figured my 2nd PSA test would be as big or bigger than the 1st as it would determine if I was inclining, declining or staying the same. Now, I won't be going to the same uro so my blood may be sent off to a new lab which I've read isn't ideal. Anything 0.06 or lower will be a reason for relief and celebration on my end. Will be interesting to see what I do if things incline.
Posted 1/21/2014 11:31 PM (GMT 0)
I would never consider a 0.06 to be of any concern, even if it was a "raging increase" from a 0.02. Those numbers are so small - they just generate anxiety.
Posted 1/21/2014 11:58 PM (GMT 0)

142 said...
I would never consider a 0.06 to be of any concern, even if it was a "raging increase" from a 0.02. Those numbers are so small - they just generate anxiety.

I LOVE your opinion. Unfortunately, that is a pitfall of being diagnosed. Info and opinions are all over the map and often contradictory. I'm not sure why it has to be so muddled. It's really not fair to many of us out there who are suffering enough without someone shoveling extra upon us.
Posted 1/22/2014 12:55 AM (GMT 0)
I agree with the anxiety part. I asked my uro--whom I really like--to just tell me "undetectable" unless it isn't because I don't want to know the exact number. He laughed and said I wasn't even close to being the first who ever asked him to do that--and he does. I trust him totally and know he will say something if he is concerned at all because he knows how much I stress these darn PSA's out. Just hoping for an "undetectable" in two weeks so I can go back to yearly tests!!

Tom
Posted 1/22/2014 1:11 AM (GMT 0)
I hope so, too, Tom! Git R done!

That's a GREAT idea... no reason to get yourself all tizzied up because of a hundredths of a jump. Labs make mistakes. No science is perfect.

Maybe, I'll do that.
Posted 1/22/2014 1:38 AM (GMT 0)
I don't know if this helps, but I was told, by my uro, that Johns Hopkins trained pathologists are the best and that is why he uses the lab he does. This would make sense if in fact Johns Hopkins is indeed the leading prostate cancer research institution (Pat Walsh and all).
Posted 1/22/2014 1:43 AM (GMT 0)
Also, 142, my only reason for asking where you lived, was to see if you were Canadian, as I've seen here that sometimes these folks seem to have a harder time getting prompt treatment. Am I wrong?
Posted 1/22/2014 2:16 AM (GMT 0)
Bringing up perceived or real differences in health care systems by country does little but start political discussions, so we try not to do that.
✚ New Topic ✚ Reply
12