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Posted 6/1/2016 4:09 AM (GMT 0)
Hi everyone,

I am glad to have found this forum. I have learned a lot in the last few days about PC and it is clear that there are many knowledgable members who care about each other. Glad to be a part of the forum, even if the reason for us being here is not a fortunate event.

A little about me. I am 41. I have been having some ED and libido issues, along with some mood issues for a few years, and a couple years ago I decided to check my testosterone level. Lo and behold, my testosterone level was low. I worked with a urologist first, then an endocrinologist, and had various different forms of testosterone replacement therapy. Results were so so. Some improvement in libido and ED.

During this process, my PSA was checked a few times, since apparently TRT (test. replacement therapy) can aggravate existing PC. My levels always hovered around 1.5-1.7, except for a couple months ago, when I got a reading of 4.07! And this was after a reading of 1.6 five months earlier! In other words, a tremendously high PSA velocity. This set off red flags for my endocrinologist, of course, and he referred me to a PC specialist urologist. The urologist told me that given my background, there is a 50-50 chance that this may be PC, but that he would like to do an endorectal MRI first. He also performed DRE and it was normal.

I had the endorectal MRI today. It was a 3T machine. And my doctor called me later today (I am very impressed and glad about the quick turnaround), saying that no suspicious areas were found during the MRI. His suggestion is that we wait 3-4 weeks, get another PSA reading and see if it has gone down and then meet again.

In the meantime, I had ordered PSA tests myself. The timeline is as follows.

PSA 11/21/14 1.54
PSA 3/13/15 1.7
PSA 11/19/15 1.6
PSA 4/25/16 4.07
Office visit 5/5/16 Urologist performed DRE, result normal
PSA 5/4/16 2.5
Gave blood for PSA, today, 5/31/16. Don't know results yet.
Endorectal MRI, 5/31/16. No suspicious areas seen.

I will of course wait for the new PSA result and get a new PSA test 3-4 weeks later, like my urologist suggested. And then see him. I am hoping that the PSA level will have fallen even further by then (even though I don't know if the endorectal MRI irritates the prostate and causes levels to go up). If the PSA number has not fallen, of course we will need to investigate further. But if it does indeed fall to around 1.5-1.7 again, I am not sure whether I should interpret this as me being in the clear or not. Would that mean that the rise was temporary, possibly due to an infection? Or should I be safe and get a biopsy? I know biopsies are no picnic, but should I be better safe than sorry?

I will of course update the thread as new information comes in, but wanted to get you guys' opinion at this point, as I am anxious and nervous. Thank you for any feedback you may have.

Best,
Ben
Posted 6/1/2016 6:00 AM (GMT 0)
I can tell you are nervous. The sudden rise in PSA will get your attention, but the subsequent decline suggests prostatitis or even an infection.
You are getting good advice.
I would not rush into a biopsy. In fact, if your PSA goes back up, a course of antibiotics followed by a retest might be advisable.

Mel
Posted 6/1/2016 6:16 AM (GMT 0)
Hello Ben and welcome. I hope this will be only a pass through on this forum for you. I agree with Mel that a biopsy would be premature. I am curious as to whether or not you discontinued the.testosterone tx.
My father in law was on testosterone and then ended up with PCa and had to have the seeds and RT. I always wondered if he would have gotten it without the T, since PCa feeds on it.
It sounds like you are having mixed results anyway, and you are certainly very young to have to go this battle.
It is encouraging that your DRE is normal and that the PSA didn't show continuous rise. Good luck and keep us posted.
Beth
Posted 6/1/2016 12:07 PM (GMT 0)
There has been a lot of misinformation out there in the past about a linkage between TRT and PC...mostly out of fear of the unknown. Thankfully science is taking over, And it's becoming less "unknown" these days...and as a result you are increasingly finding men with PC prescribed TRT.

PSA velocity is meaningless for men who have not had prostate removal surgery. It's a good metric for those who have, but worthless for those who haven't because too many non-cancerous factors cause PSA to go up and down.

Biopsies are over-prescribed, and a surprisingly high number come with after-effects. If you look up the AUA's "best practices," a biopsy should not be the next step.
Posted 6/1/2016 1:14 PM (GMT 0)
I would add, that if I undstanding correctly, and you had an endorse tall MRI, and THEN had the blood draw, your PSA results may well be a higher number due to the endo rectal coil. So I would discount the results.
Wait the 3-4 weeks, see what the next result is, then go from there.
Posted 6/1/2016 1:28 PM (GMT 0)
Welcome to HW.

As has been said, sudden jumps in PSA are more liked do to infection, prostatitis. PC tends to show as a steadily increasing PSA number.

Wait for the test results and I'd skip the biopsy until you have ruled out all other possibilities for your PSA rise. You should also consider other tests such as the PHI (prostate health index). Finding PC in your case is possible, but I'd think would be not likely. A biopsy now is likely to show nothing.

Andrew
Posted 6/1/2016 2:26 PM (GMT 0)
My personal trainer was (still is) a competitive body builder who competes nation wide. (He owns the facility I work out at. It's been thriving for many years).

In 2012 i was concerned about my psa. My testosterone was low and we discussed my going on supplements. He cautioned "Be careful. If that psa is cancer it's like throwing gas on fire".

ben11...i dont believe your psa is acting like cancer. But unnamed, incognito posts on the internet is nothing to hang one's hat on. If someone tells you something...and they do so with the conscious intent of choosing to remain in annonimity...proceed with caution on information gleaned from such sources.. I'm glad I listened to my trainer.

I believe you're fine. Keep us posted.
Posted 6/1/2016 3:01 PM (GMT 0)
Ben, i agree with Island Time...use this forum as a way to get educated. Don't take what you read here as gospel, and act, or not act, based on it. We all tend to be biased in that we read something and understand it to mean what we want it to mean. So again, use the website to get educated. Then use your education to make sure you are being guided by a urologist whom you feel you can trust in both integrity and proficiency.
Posted 6/1/2016 3:59 PM (GMT 0)
Ben,

Find a doctor you trust and take his advice over anything you hear on the forum. That's pretty much a given. But be sure the doctor is keeping relatively current on the role of Testosterone in prostate cancer risk. Because it is one of the areas where medical science is taking a big left turn. It turns out that the conventional wisdom of a decade ago is more or less wrong. Island Time's trainer's "gasoline on a fire" metaphor is no longer that useful. My new metaphor is a leaky rowboat. It goes like this:

Years and years ago someone discovered that if you run your leaky rowboat aground it won't sink and you won't drown. They knew that the reason it didn't sink was because the water was really shallow. So they started to tell boaters that it was more dangerous to row their boats on the ocean than in the bay because the ocean is thousands of feet deep while the bay is only a few hundred feet. What they missed was that while water depth is important, all of the danger accrues in the first six feet and after that adding more depth makes very little difference. It is just as easy to drown in ten feet of water as in ten thousand feet.

Prostate cancer needs testosterone to grow but it doesn't need much. It turns out that almost all the danger accrues in the first fifty ng/dL and once you get out of the "castrate" range a bit more or less doesn't make that much difference.

A PSA that constantly goes up is more indicative of prostate cancer than a PSA that jumps around like yours does. A sudden spike in PSA can be an infection. It can also be caused by having sex within the 48 hours prior to having your blood drawn, or a DRE, or bicycle riding, or taking some cold medicines, or half a dozen other things.

There does seem to be some upwards trend in your PSA but some of that could be explained by your T supplementation. Giving a healthy man testosterone will generally make his PSA go up -- not because it causes cancer or anything bad like that but just because it makes his PSA go up. It might be worth asking your doctor how much of the upwards trend of your PSA can be explained by the T supplements.

PSA is a lousy test. Prostate biopsies have side effects and are only so-so accurate. That 3T endorectal MRI is a pretty good test. If I were you I'd look at the MRI as a clean bill of health for now, work out a plan with your doctor for sensible monitoring of your PSA going forward, and get out there and try to enjoy that testosterone while you are still young.
Posted 6/1/2016 5:56 PM (GMT 0)
Hi again, Ben.

Earlier this morning I wrote a short response...actually did that on my phone over morning coffee. I thought I should add to my comments, especially in light of some other "opinions" you've gotten.

The 2nd & 3rd paragraphs I previously wrote need no addition, but I can embellish more about the first, where I wrote:

JackH said...
There has been a lot of misinformation out there in the past about a linkage between TRT and PC...mostly out of fear of the unknown. Thankfully science is taking over, And it's becoming less "unknown" these days...and as a result you are increasingly finding men with PC prescribed TRT.

I really under-stated the contemporary perspectives in medicine about TRT and PC when I mentioned "...men with PC prescribed TRT" at the end, above.

You haven't been diagnosed with PC (* see NOTE below), and so this statement (about "...men with PC...") doesn't necessarily mean a lot to you...what is more meaningful to you is men on TRT who have NOT been diagnosed with PC; or the possible elevated risk of developing PC. Right? So lets talk about that.

(And I shouldn't need to add this, but since this is your first post you should know that I'm not a doctor, but will reference up-to-date published medical info online that you can/should further research yourself and discuss with your own physician(s)...I wouldn't recommend taking advice, however, about prostate cancer (or much else) from your personal trainer...gasp! The internet is an enabler to quickly reach good information; use it wisely. If someone gives you an "opinion," ask them, "Based on what?")



So, recent thinking is that TRT does not add "fuel to the fire" in the simplistic way it was imagined to in the past...although it may affect your PSA. I think you knew this (but made a little typo) when you wrote:

ben11 said...
During this process, my PSA was checked a few times, since apparently TRT (test. replacement therapy) can aggravate existing PC.


I think what you meant to say, and what is makes this sentence correct, is to end it with "...can aggravate existing PSA measurements." Indeed, TRT sometimes appears to cause increased PSA indirectly due to triggering BPH. Read this:
www.jurology.com/article/S0022-5347(11)03846-8/abstract


But the "fear of the unknown" of the past related to TRT leading to (or aggravating) PC has now seen a turning point (although I should point out that some respected experts continue to advocate for a more conservative approach until even more studies are completed).

This paper addressess men both in your situation (pre-PC diagnosis) and after PC treatment. Here's one of the comments relevant to you:
    Does TRT Have Any Role in the Development of PCa? ... "...the available literature strongly suggests that TRT neither increases the risk of PCa diagnosis in normal men nor causes cancer recurrence in men who were successfully treated for PCa"

www.ncbi.nlm.nih.gov/pmc/articles/PMC3789297/


One of the excellent sources of patient education here at HW/PC is the website "The 'New' Prostate Cancer InfoLink" and the article I've linked to below is titled "TRT and prostate cancer risk in hypogonadal men." One of the summary statements from a different study (different from above) concludes:
    Testosterone therapy in hypogonadal men does not increase the risk of prostate cancer. If guidelines for testosterone therapy are properly applied, testosterone treatment is safe in hypogonadal men.

Check out the article that quote came from here, at this link:
/prostatecancerinfolink.net/2014/11/26/trt-and-prostate-cancer-risk-in-hypogonadal-men/


Lastly, just to show how much the modern thought has shifted, there are researchers looking into whether testosterone may actually help reduce risk of prostate cancer! Here's an InfoLink from just last month:
/prostatecancerinfolink.net/2016/05/17/is-it-possible-that-testosterone-supplements-could-actually-reduce-risk-for-prostate-cancer/

Good luck, and remember that an empowered, knowledgeable patient has the highest levels of satisfaction with outcomes.



*NOTE: Starting at about age 40, the likelihood of a man having measurable amounts of prostate cancer is roughly equal to his age...50% of 50-year olds, 80% of 80-year olds, etc. Most of these are indolent and will never bother him. However, that harder one goes looking for PC, the more likely he will be to find it...even if it is a tiny amount of indolent PC...and once a man gets put of the "slippery slope" of biopsy, he is at heightened risk of being aggressively overtreated, possibly for something that would otherwise never have bothered him.

Post Edited (JackH) : 6/1/2016 12:47:57 PM (GMT-6)

Posted 6/1/2016 6:26 PM (GMT 0)
Island Time gave you good advice.
HW is a fantastic resource for support and information.
I was on HW extensively BEFORE I got the formal dx (my PSA was rising steadily).

By perusing HW quite a bit before the dx., I realized there were a few people above the rest, who really seemed very knowledgeable. But I also found a very few who had a particular ax to grind. I saw the name and I knew what was going to be said. They were stuck on one particular idea or even one treatment modality.

So, I would suggest you continue to peruse HW, but be careful and as has been suggested, find a great doctor who you trust.

Hopefully all will resolve and you won't need us at all!

Mel
Posted 6/1/2016 9:59 PM (GMT 0)
ben11,

Hopefully your urologist checked for any urinary infections which can pump your PSA reading into the panic mode. Many urologist will put a patient on antibiotics for several weeks prior to another PSA test.
Posted 6/2/2016 12:19 AM (GMT 0)
Thank you everybody for the detailed and thoughtful responses. Very much appreciated.

The PSA reading on 5/4 was before the DRE, and I also gave blood yesterday on 5/31 before the endorectal MRI, precisely because I thought that the results could be affected by those two procedures. And both of those tests I ordered myself through online companies, my doctor had not asked for them. And I knew to do that because of what I read on this site, so thanks. I have not yet gotten the result of the PSA test from 5/31, but hopefully in a day or two... As for an infection, my doctor has not done any tests. I will bring it up when I see him next again. I had asked him when I saw him before the MRI, and he thought that this rise in PSA is unlikely to be due to an infection. I don't know why he thinks that. He is a well known expert in PC at UT Southwestern.

My first priority is finding out whether there is PC of course, and I stopped TRT as soon as I heard about the elevated 4.07 PSA. However, you guys make good points. If and when I am convinced that there is no PC, there will be a question of whether I go back on TRT. I really appreciate the information and resources you provided in your replies, and will certainly dig in deeper and learn as much as I can. I actually did not know whether TRT can aggravate PC itself or only increase PSA for somebody who has PC. Being 41 and having low testosterone is a bummer, and if it is indeed safe to have normal testosterone levels through TRT in somebody in my situation, I would certainly like to have those normal levels.

Thanks again.
Ben

EDIT: After writing this, I just got an email with the results of the PSA test from yesterday (5/31). It is 1.9. So the timeline is now:

PSA 11/21/14 1.54
PSA 3/13/15 1.7
PSA 11/19/15 1.6
PSA 4/25/16 4.07
PSA 5/4/16 2.5
Office visit 5/5/16 Urologist performed DRE, result normal
PSA 5/31/16 1.9
Endorectal MRI, 5/31/16. No suspicious areas seen.

So, another decrease, from 4.07, to 2.5, now 1.9. I will get another reading in 3-4 weeks, but this makes me feel better.

Post Edited (ben11) : 6/1/2016 6:54:35 PM (GMT-6)

Posted 6/2/2016 2:41 AM (GMT 0)
Glad to hear the PSA is down. Do let us know what the next reading is.

Your PSA isn't acting like PC, but best to keep an eye and half on it.

Hang in there,
Andrew
Posted 6/2/2016 3:30 AM (GMT 0)
Ben11, I agree with Andrew and the others that your psa history is not indicative of PCa. My psa has been "all over the place", as my various doctors have all commented. But it always stabilizes, with time, not antibiotics. Antibiotics have no effect on most instances of prostatitis.

Just looking over at your very latest results...just chill out, and stop worrying about prostate cancer. Keep have regular tests, of course, but otherwise, stop thinking about it.
Posted 6/2/2016 1:37 PM (GMT 0)

ben11 said...
My first priority is finding out whether there is PC of course, and I stopped TRT as soon as I heard about the elevated 4.07 PSA. However, you guys make good points. If and when I am convinced that there is no PC, there will be a question of whether I go back on TRT.


Welcome to HW/PC. Great place to start your learning about PC and related topics. If you are going to use the internet (and this site), I'd encourage you to hone your skills at wading through emotion-based myths and science-based findings, unreliable sources versus reliable sources, and stale information versus fresh information. It's a skill that will serve you will...because you will find it all related to PC, and in your specific instance, related to TRT & PC.

You've already got some good information about the old myth about TRT being "gas on the fire"...that myth got busted and there's some excellent research links provided above. Don't be surprised if & when you encounter people, including some doctors who are not specialists, who don't have up-to-date information...this myth has roots dating back 70-years to the Nobel Prize being given to Charles Huggins for cancer research.

But my focus today is on your comments, above, which I have highlighted in bold text, which are NOT about TRT specifically, but are about prostate cancer. Most people your age, and in their 50s, and many in their 60s, know next to nothing about their prostates and prostate cancer until they bump into circumstances where they learn quickly about those topics.

Prostate "cancer" is a ubiquitous condition. That is, PC is a natural part of aging. Prostate cancer is one of the most frequently diagnosed, but least fatal "cancers" of all.

This was mentioned earlier, but autopsy studies of men of all ages who have died from other causes have revealed measurable amount of PC with astounding frequency; the percentages roughly equal to their ages, starting at about age 40. Repeated medical studies have shown this; the landmark study referenced widely by PC specialists is the "Detroit study" because it took place at the Wayne County (Detroit, MI) coroner's office.

The important point to the PC specialists from the "Detroit study" is that most those cases were obviously indolent; the men never knew they had PC, and the conclusion was that it never would have bothered them. This has opened the eyes in the last decade to the true nature of most PC cases, concluding that there are many men who ARE diagnosed simply because they have encountered a set of circumstances which led to a biopsy, and then incidental findings of tiny amounts of indolent PC.

Here's the "take-away" for you: re-read your comments in bold above. At 40-something years old, there's already a 40-something percent chance that you DO have PC. Don't be surprised. If you go looking hard enough (or allow a urologist to look hard enough), you will probably find some PC.

The fact is that the purpose of a prostate biopsy today is NOT to find prostate cancer. Why? As I already explained, the data shows it is probably there. The purpose of a prostate biopsy today--when done as a last step after other tests have been done--us to examine whether the prostate "cancer" men have is of the aggressive type (uncommon) or the indolent type (common).

As I said, you've come to a good place to start your learning about things a 40+ year old needs to know about their bodies. Best wishes.
Posted 6/2/2016 4:13 PM (GMT 0)
Hi Ben11. Welcome to the happy and (at times) disfunctional home of all things PCa.
????Is it hot in here or is it just me?????
My vote would be for prostatitis, BUT if TRT is a direct causation of the increase in PSA, you should keep a very close eye on it because as many of us know, in a world of T=<.x, and PSA=<.02, the tie that typically binds PCa to PSA is T, and if there is PCa present, where T goes, PCa+PSA will follow.
Posted 6/2/2016 5:56 PM (GMT 0)

Newton451 said...
...in a world of T=<.x, and PSA=<.02, the tie that typically binds PCa to PSA is T, and if there is PCa present, where T goes, PCa+PSA will follow.

Newton451, I'm pretty well-versed in the topic...and I have absolutely no clue what you just said! LOL!! Poor Ben!

I think, however, that you just perpetuated a prostate cancer MYTH, of which there are unfortunately many. So, I gotta ask you (on Ben's behalf): your comment is "based on what?"



Let's check-in with the Fred Hutchinson Cancer Research Center in Seattle, where extensive research has been published in this area, especially in the last decade; you'll find a lot of the PubMed.gov research in this area came out of Fred Hutch. Fred Hutchinson is one of the National Cancer Institute's small number of CCCs, a Comprehensive Cancer Center, and a NCCN member which delivers evidence-based cancer clinical guidelines to physicians worldwide (I've witnessed oncologists walking around their clinics with NCCN Guidelines in their lab coat pockets and refer to them during consultations).

Check out the Fred Hutch website link below, but I'll simply copy/paste for your easy reading:
    Myth 2 – High testosterone levels increase the risk of prostate cancer. “This is a hypothesis based on a very simplistic understanding of testosterone metabolism and its effect on prostate cancer. It is simply wrong,” Kristal said. Unlike estrogen and breast cancer, where there is a very strong relationship, testosterone levels have no association with prostate cancer risk, he said.

/www.fredhutch.org/en/news/releases/2012/08/prostate-cancer--six-things-men-should-know-about-tomatoes--fish.html

I'd encourage you, Newton, not to be a "myth-perpetuator." Not helpful to those who come looking for evidence-based information.

Post Edited (JackH) : 6/2/2016 1:25:24 PM (GMT-6)

Posted 6/2/2016 9:32 PM (GMT 0)
Thank you guys. I just had a meeting with my urologist. I had emailed him the 1.9 PSA result from Tuesday, and given the negative result of the MRI and the decline of the PSA, he is telling me that I should consider this as a clean bill of health at this point, as far as PC is concerned. As some of you indicated, he said that the 3T endorectal MRI is a pretty good test. He also said that my prostate was seen to be quite small in the MRI (18 cc), and he is concluding that the elevated PSA of 4.07 was an outlier, possibly due to some inflammation at the time. He wants to follow up in 6 months.

I then asked him whether I should continue TRT, and he said that I could, without any worries whatsoever about PC. I was surprised to see him respond that definitively; many doctors are more measured in their answers. :) But I appreciated it.

I have started reading the resources cited in this thread (thanks for those), and will continue reading about the link between TRT and PC, and talk to my endocrinologist as well, but at this point it seems like I can go back to TRT. I will probably end up checking my PSA more frequently than every 6 months, though. 6 months seems to be an awfully long time.

Thanks again everyone.
Posted 6/2/2016 9:43 PM (GMT 0)
That all sounds like very solid medical advice.
Best wishes to you!
Posted 6/3/2016 2:28 PM (GMT 0)

ben11 said...
I was surprised to see him respond that definitively; many doctors are more measured in their answers. :) But I appreciated it.


That's a good sign that you are seeing someone who is staying up-to-date.

Good for you! We'll look to hear back from you in 6 months.
Posted 1/25/2017 9:23 PM (GMT 0)
I just had my follow up appointments with my urologist and endocrinologist and would like to update the thread, as promised.

To refresh your memory, I had a spike in PSA last spring, after having started TRT. Had an endorectal MRI, which came out clean, and the PSA returned to normal in a few weeks. Conclusion was that it must have been due to an inflammation. It was a scare, but I was relieved that no PC was found.

While the doctors had given me the all clear to continue TRT, the scare had me hold back for a few months. I read about it, and wanted to also see how I felt off of testosterone. Finally, in September 2016, went back to testosterone. Have been on it since.

This past week, I had my follow up appointments with my urologist and endocrinologist. Checked PSA, and it is at it's lowest level ever. So they are telling me that I should not be worried about PC. Good news.

My endo is still telling me that there are no long term studies about men who started TRT in their 40's who stay on it for decades. So he is telling me that it is up to me whether the risk/reward is worth it. He is saying that there are studies about older men and links to heart disease and other conditions, as well as conflicting studies that deny such connections. I have decided to continue at this point, but will reevaluate in a few months. But the concerns are not about PC at this point.

For completeness, here are my PSA readings:
PSA 11/21/14 1.54
PSA 3/13/15 1.7
PSA 11/19/15 1.6
PSA 4/25/16 4.07
PSA 5/4/16 2.5
Office visit 5/5/16 Urologist performed DRE, result normal
PSA 5/31/16 1.9
Endorectal MRI, 5/31/16. No suspicious areas seen.
PSA 6/30/16 1.6
PSA 9/21/16 1.5
PSA 1/13/17 1.8
PSA 1/17/17 1.2
PSA 1/19/17 1.34

One question. The spike last spring may have been due to inflammation, other than that my readings seem to be in the 1.x range. Anywhere from 1.2 to 1.8 or so. Are such fluctuations normal? Some of these tests are also done in separate labs. But still, 1.8 to 1.2, in a matter of 4 days is quite a difference (50% increase, or 33% decrease, depending on which way you look).

Thank you everyone for the valuable information provided. I learned quite a bit about PC through the board.
Posted 1/25/2017 9:42 PM (GMT 0)
fwiw....I agree with your docs. You don't have cancer. (least I don't think you do)
Posted 1/25/2017 9:48 PM (GMT 0)
Ben - I actually love hearing good news on this site. From really difficult cases to borderline overtreatment it's great to hear a non-radical treatment success story like yours.

I'm not a doc but I think a PSA bouncing around a bit at your low of levels is just fine. Even the spike as you found out is not always a cause for concern. A steady rise over many data points COULD be cause for concern after inflammation, infection, riding a bike etc have all been ruled out.

It's a tough call on the TRT. The TRT seemed to help you but only a little? I think you are the only one that can decide if the risks are worth what you are getting from it.

Have you tried the "pills" ? Cialis has worked miracles for me both physically and mentally. If it worked for you it might be a "safer" option than TRT but again I'm not a doc and not as well versed as many that have already posted.

Just smiling about your good news. yeah yeah
Posted 1/25/2017 10:55 PM (GMT 0)
So then the message regarding TRT is that if you have more than castrate level TRT no amount of addtional replacement testosterone will affect PC. So that if you are on ADT and for some reason your levels cannot reach castrate level the ADT is not effective?
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