I have a lengthy history of elevated PSAs, low free PSAs, and biopsies, leading eventually to my current diagnosis of high grade, locally advanced prostate cancer.

Age 55, Diagnosed 4/16/13
Biopsy with 12 cores: one side all G9=5+4 (80%, 60%), 4+5 (2 at 100%, 80%, 10%), perineural invasion confirmed

Date PSA fPSA
3/13 5.2 12% PCA3=31 (concern since >25)
9/12 4.1 15%
... (4 year possibly unwise hiatus)
9/08 1.84 na
7/06 1.95 na
6/05 1.98 na (fPSA isn't checked with PSA so low)
5/04 3.3 10%
2/04 neg color doppler biopsy (12 cores, Dr. Fred Lee, Rochester, MI), started low-dose aspirin
2/04 3.3 na
8/03 3.3 7%
1/03 neg biopsy (12 cores)
1/03 5.2 8%
9/02 4.9 7%
7/02 neg biopsy (6 cores)
6/02 4.5 9%
5/02 5.3

Back in 2002, 2003 those PSA numbers and fPSA pretty much said I had PCa then according to numerous studies. A bit panicky, I left no stone unturned in testing at the time, rather convinced I had it and just needed to get it confirmed by biopsy. It made me crazy, causing me to spend virtually every lunch time I had for about a year at the local hospital's medical library, reading study after study and chasing down all the references in those studies. I spent more time in the Journal of Urology than a lot of doctors, I bet. Two 2" thick notebooks full of copies of studies resulted from that effort. Around that time, my dad had his prostate removed due to cancer, so that further fueled my concern.

Living in southeast Michigan then, with great health insurance, let me really pursue this with some of the best medical attention available.

After no less than Dr. Fred Lee in Rochester, MI did my 3rd biopsy, color doppler ultrasound guided, finding only inflamed tissue and no evidence of cancer. I embarked on daily low-dose aspirin to help the inflammation. My PSA came down over the next year or two, and finally declined to less than 2. At that level, everything seemed ok. So after 3 years like that, I decided not to keep putting myself through testing anxiety every year, and wait until 55 to jump back into it again. After all, the odds of finding cancer after 3 negative biopsies are very low, and the whole medical community has been buzzing about over testing and over treatment. So, easy to let it go. If we find something starting at 55, then we'll look at it then, says I.

Concerningly, one study said even if PCa wasn't found at the time, a really low fPSA was indicative of likely future high grade cancer. (That was prophetic in my case.)

But, and that's a *big* but, in hindsight I should have at least maintained annual PSA checks. Maybe we'd have caught a rising PSA, but who really knows? No one would have biopsied in those years where it was so low even if I paid them privately. Even before just last September, it would probably have been below 4.0 and not worth biopsy. PSA velocity (rate of increase) has been said not to be enough for justifying a biopsy if below the concern level of elevation. I don't know if that's true or not.

There were no good guidelines 10 years ago for people with elevated PSAs and multiple negative biopsies. It doesn't look like much has changed. All they said back then was to continue monitoring, and biopsy if warranted. If I had to do it over again, I'd have a PSA every year, and if it was above the concern level I'd consider another biopsy. Or, at least the PCA3 test.

The PCA3 test is really simple to do in your urologists office, just a somewhat more vigorous than normal DRE followed by a first-catch urine sample of an ounce or two. They send that off to the lab to see how much RNA there is in there from cancer-type cells. The result is a percentage value, and if it's over 25 then there's more concern of cancer. If it's really low, then that tends to rule it out. Being high doesn't seem to confirm it, it's just indicative for a biopsy

When the biopsy was positive, with seriously high grade cancer, the urologist scheduled a bone scan to see if there were any metastases alread, and a 3 Tesla MRI for detailed imaging for staging.

The bone scan showed two small "hot spots", which subsequent x-ray plain films showed not to be evidence of metastases. They were either prior injuries or arthritic.

The 3T MRI took about 90 minutes in the machine. The bad news from the scan showed the tumor area rather clearly, indicated extracapsular extension, and suspicious for neurovascular bundle involvement. The good news was seminal vesicles had "normal signal" and no evidence of lymph adenopathy was found.

So, it's clinically cT2b/cT3 depending on how much weight one gives the 3T MRI results. The Gleason scores were confirmed by second opinion from Johns Hopkins. Depending on nomograms and various predictive studies, my risk of lymph node involvement is about 40%. MRI's are not very good at seeing lymph node involvement unless it's significant.

Treatment choices can be quite controversial, so my plan is the result of assessing my specific situation, and weighing the results and probable side effects.

Surgery, while certainly possible, was projected to have a low probability of being curative (this is definitely controversial). My urologist said we wouldn't be able to do some of the "luxury" things like nerve-sparing, and it would be a wide excision. The expected side effects would be complete and permanent ED, and incontinence which has a pretty wide range of severity depending on lots of factors.

Radiotherapy (RT) with hormone therapy has shown good results with this type of case, with lots of variations in the type chosen. RT has changed a lot over the years as knowledge and equipment has matured.

We selected Image Guided Radiotherapy by Intensity Modulated Radiotherapy, external beam only. Adding seeds was not seen as being helpful enough to offset the increased side effects (urethral strictures, mainly). The lymph nodes are being treated due to the likelihood of micrometastatic disease in them already. I have 3 gold fiducial markers implanted in my prostate, which are imaged by low-energy x-rays to guide the alignment of the x-ray machine before every treatment.

So, the treatment plan is concurrent hormone therapy, or Androgen Deprivation Therapy with two drugs (ADT2), with Lupron and Casodex for two years. Eight weeks after the start, Image Guided Radiotherapy was begun as primary treatment. The pelvic lymph nodes are being irradiated to 50.4 Gray, and the prostate boosted to 79.2 Gray. We're using a Varian Trilogy with RapidArc so the time on the table is very short, 10 minutes from the time I walk into the treatment vault until leaving.

I'm now about 1/3 through the radiation series with very few side effects so far.

At the end of August, I've completed 44 sessions of radiation therapy with minimal side effects so far. The three fiducial markers implanted in my prostate (for Image Guided RadioTherapy, IGRT) allowed quick alignment daily, and each session lasted barely 10 minutes. The Varian Trilogy with RapidArc IMRT x-ray machine didn't cause any skin irritation side effects. The treatments left me a little dizzy each time, but it cleared up within 24 hours (just in time for the next treatment!) The biggest challenge was keeping a full bladder and empty rectum for every treatment, important to protect the areas around the prostate from excessive radiation exposure.

The best news is my PSA is undetectable, <0.1 ! My medical oncologist (MO) decided to check it right after radiotherapy to see if my ADT2 course is effective.

It definitely is! It's too early for radiation to have had a major effect on my PSA, so it's not usually checked this soon. This was something of a special case in that there was some question about why we added bicalutamide to go for ADT2 (instead of just Lupron ADT). My preradiation PSA had come down from 9.7 to 2.0 during 7 weeks of Lupron alone, good but we'd hoped for a bit lower. So my urological oncologist added Casodex (bicalutamide) to see if we could get it significantly lower (like down to less than 0.5), mainly to help the radiotherapy be more effective. My MO was satisfied with the results, to say the least.

So we stick with the plan, ADT2 for 2 years during which time the radiation effects should fully mature. Then, stop the ADT2 and see how my system recovers. The desired outcome is for my testosterone to recover while the PSA stays low.

Good news today, PSA is still <0.1, undetectable! Yay! This is after a bit less than 3 months past completion of radiation therapy, and still under ADT2 Lupron/Casodex therapy. The doc says it should definitely remain low while on ADT2, and really doesn't think a check is necessary any more than every 6 months in this phase.

I don't have the testosterone result yet, but my doc believes as long as I'm still experiencing significant hot flashes my T level is in the castrate range. I'll edit this when I get that number.

Saw my new urologic oncologist yesterday, since my primary doc has gone to another facility to chair their urology department.

I like the guy, we interact well, and I like his approach. He wants to be aggressive too, considering my young-ish age and that I have, in his words, "a bad cancer". :) Hard words to hear really, but I agree completely.

The downer is he is more in favor of 3 years on ADT2, suggesting longer in my case is likely to be worth the cumulative side effects. It's still controversial whether 2 years has been shown to be non-inferior to 3 years with high risk, locally advanced, etc. cancer. As far as I'm concerned, if 3 years might be better let's go for it. We'll see how I feel at the 2-3 year decision point, but right now I'm in agreement with the longer sentence. I know there's a lot of effort going the other way, with one Canadian study that pretty solidly supports 18 months being as effective as longer periods.

He also suggested low dose Megace to see if it has much effect on the hot flashes. I'm not convinced that any risk from it is worthwhile, but I'm going to try it for 3 weeks or so to see how much it helps, if any. Obviously, if it doesn't help, then we'll drop it. So far today, it has not been much help.

I got the next six month Lupron shot too, so my rear is a bit uncomfortable, but not much yet. Not limping.

Keep fighting, cancer warriors!

Another PSA check February 6 showed it's still undetectable, <0.01. Testosterone is less than 10. So, a great response to ADT2! My radiation oncologist said he didn't think we needed to check any more often than once every 6 months, since he fully expects it to remain undetectable while I'm on ADT2 (Lupron and bicalutamide). Feel well, other than pretty significant fatigue in the evenings. The hot flashes have diminished in frequency to 3 or 4 a day and 1 or 2 at night.

My PSA was just checked again May 16, 2014 and it's still <0.1 ! My testosterone is also still responding well to the Lupron, measured at 9.5 ng/ml (target is to be below 20). A full blood panel was done too, and all the numbers are ok, though a few are marginally out. So, great!

I'm continuing the Megace, after trying to go without it for a month. The doctor said I could try that, but needed to ween myself off of it over a week or two. Well, the hot flashes came back in full force, breaking a good sweat every 1-1/2 to 2 hours all day, plus 3 or 4 a night. Yuck! So, I went back on the Megace, and after about 4 weeks the hot flashes diminished to barely noticeable levels again. Once in a while I get one that catches my attention, but not more than 1 to 3 a day at the most.

I'm up 10 pounds over my weight at the end of radiation last August, and the radiation oncologist said that was fine and almost unavoidable when one is on hormone therapy. I hate it, and have been trying pretty hard to diet, but the results are pathetic. Frustrating, but part of the price of treatment so it's ok whether I like it or not!

Next check won't be until November, so I'm ok until then. This crummy disease will be pushed to the back of my mind as much as possible.

Time really flies! So, my last appointment was in March, 2015. My medical oncologist and I discussed quitting my ADT2 regimen at 2 years instead of the planned 3. We (grudgingly on my part) agreed to carry on for 3 years, since along with radiation therapy this is my primary treatment and is being done with curative intent. She said, "I'd rather find out 10 years from now that 3 years was too much, rather than 2 years was not enough.". Tough to argue with that logic, I guess.

I feel pretty good, and thrilled my PSA is still undetectable. The fatigue is difficult, and seems to slowly get worse as time on ADT2 goes on. I suffer from a "lack of motivation" in general, just not very interested in doing anything. This seems to be a relatively common side effect of hormone therapy, so something to consider. Not like I had a real choice anyway, but still...

Good news, still an undetectable <0.1 PSA! I've decided to go ahead with the whole 3 year course of ADT2, despite the increasingly burdensome side effects. I have osteopenia, verging on osteoporosis, and take 1200mg of calcium a day along with Prolia injections every 6 months. With weight resistance workouts 2-3 times a week, hopefully we can prevent any "skeletal events".

I've had no issues from the radiation treatment 2 years ago now, which is great. The hormone therapy is a long-term hassle, with fatigue and hot flashes as continual companions. The lack of motivation has become quite significant and seems to be a little-reported but perhaps rather common side effect of ADT. Most of the time I just don't want to do anything at all, quite unlike my normal self.

Updating my story. As of March 2016, I have finished my treatments (yay!). That was the end point of 3 years of ADT2, or androgen deprivation therapy with two drugs, Lupron injections and Casodex.

Fatigue has been, and still is, a constant companion. The hot flashes continue (though 20mg Megace 2x day helps somewhat). But this is a kind of exciting development, as I'm now actually in the recovery phase!

My PSA will be monitored every 3 months to see how it trends. As long as it stays below 2, we'll let it ride. I'm going to have testosterone monitored too, though recovery to normal levels is slow, if ever, after being on this ADT2 for 3 years. I'm relatively young, so hoping that works in my favor.

Good news on the testosterone front; it has risen well since the end of 3 years of ADT2. Bad news (maybe) on the PSA front; it has risen somewhat, too.

03/2016 - T not tested, was
05/2016 - T=139, PSA<0.1 (yay)
09/2016 - T=290, PSA=0.2 (ok)
12/2016 - T=350, PSA=0.5 (ok-ish? hmm...)

Since my primary treatment was radiation + ADT2, some PSA was expected as my testosterone recovered. Even a 0.5 is still a really good response to radiation. But this looks like it might be trending, rather than low/stable. Can't tell yet.

There's nothing else to do unless the PSA reaches a significant recurrence level, usually 2.0 above nadir (my nadir was effectively zero). But, since my case was mostly type 5 cells, notoriously making little PSA, there may be more going on than a simple PSA will indicate. For my situation, it's very likely the next treatment option will be immediate and continuous hormone therapy in some form. For my very high risk case, it's unlikely there would be any local "salvage therapy" that would make any sense (cryo, HIFU, or some such). It didn't originally, and it would be less likely now.

The PSA will be checked again in March 2017. That one will likely really have my PSA-test butterflies on the wing! My projection is 0.83 if the trend continues. It would hit 2.0 about September 2017. But that's just an engineer fooling around with numbers! This stuff seems quite unpredictable.

Another PSA test, another medical oncologist discussion.

This is rather clearly now a trend. I plotted it on a log-slope graph, and these values plot an almost perfectly straight growth line. This is quite clearly a trending situation, unfortunately. The PSA vs. Testosterone correlation is non-existent, not at all proportional. This trend supports the "saturation theory", that as long as there's enough testosterone for the cell's androgen receptors to be saturated, then even more has no effect.

05/2016 - T=139, PSA<0.1 (yay)
09/2016 - T=290, PSA=0.2 (ok)
12/2016 - T=350, PSA=0.5 (ok-ish? hmm...)
03/2017 - T=544, PSA=0.7 (uh oh)

So, my MO says in June we'll check again, if it's 1.0 or more we'll investigate. My math shows it will be 1.0 in April, and 1.6 by June. I'll be asking the MO if we should have a sooner appointment. With such a clear trend, it doesn't seem like a good idea to me to keep waiting.

Waiting for what, anyway? Another month or two off of hormone therapy? Big deal. The likely next step will be restarting hormone therapy, immediately, and continuously. This G9 stuff is relentless for some of us.

Another PSA test, done at 2 months since the last one due to the apparent rise, shows now 0.8.

So, it's up again, a little. However, at that value, it appears to be slowing, and not rising at the rapid exponential it first appeared to be. This is encouraging, oddly enough. I plotted it on a "Gompertz" curve, and it shows a limiting value that should level off around 0.9. We'll see. A marathon run at a snail's pace.

Still, if we look at doubling time simplistically, from the starting value post-therapy to the present value (first-last PSADT), it's still a 4.3 month doubling time which is quite a concern if it doesn't continue slowing.

We will check again in July, another 2 months. My oncologist wasn't comfortable waiting 3 more months, as at 0.8 we're getting near his concern level. He has said if it goes above 1.0 or so, we will discuss some next steps (scans, etc.).

I don't know. At such a PSA it's quite unlikely we'd see anything on "normal" scans. There's no local therapy that makes sense for my case anyway. Even if we found an infested pelvic lymph node, we won't do anything about it. They've all been irradiated already, and surgery isn't going to be curative if the cancer's become visible in the lymph system. So the longer I can delay returning to hormone therapy, the better!

Since the last update, my PSA has stopped rising, and actually declined a bit. At quarterly updates, it was 0.8 7/17, 0.7 10/17 and now 0.6 1/18. So, as predicted nearly a year ago in the Gompertz curve forecast (my May 2017 update), it has leveled off below 0.8 and is even slightly declining.

This is greatly comforting! With my diagnosis, this was the future we had hoped for so much through years of treatments. I have had no treatments whatsoever since March 2016, nearly two years. My testosterone has recovered nicely (over 700 at last check). The PSA is flat. Perfect!

I'd have liked the PSA to level off lower, though perhaps it will drift below 0.5 before the decline stops. The PSA trend after primary radiation therapy with ADT is a great Unknown. I'm glad we didn't decide to do some drastic treatment after the initial rising pattern was seen. The newer guidelines of waiting until the PSA exceeds 2.0 after primary radiotherapy and ADT saved me from an early and probably unnecessary intervention.

From here on, I'll continue quarterly PSA checks, and plan to see my medical oncologist in October. Oh, and celebrate!

April's quarterly PSA update ticked back upward, going from 0.6 in January to 0.8 in April.

Two possible interpretations:

1) The number is completely accurate and something is going on that's inducing a rise. That would be worrisome, and I'm trying not to dwell on that interpretation.

2) My MO said the variability of the standard PSA test is about +/-0.1 or so. Using that tolerance band, my PSA could be completely stable at 0.7, only differing by the test's variability. It's been between 0.6 and 0.8 for the last year, since March 2017. I prefer this way of looking at it, and for peace of mind that's what I'm sticking to*. (The * is a caveat, as we always add to anything in the cancer arena, meaning "for now"!).

The next PSA check will be in July. I'm expecting it to come back in the same band, between 0.6 and 0.8. I'll update when we find out. Until then, life is GOOD!

Good news with July's PSA check: it came in exactly at 0.7, smack in the middle of the hoped-for 0.6 to 0.8 band! That's just a little below what the Gompertz curve analysis predicted. So it looks like the stable trend is continuing, essentially flat since about January 2017. Next check in October.

I'm really pleased with the present outcome of all my treatments to date. It's now over 2 years since the end of ADT, approaching 5 years since radiation ended. I feel good, and continue to have blessedly few side effects. No form of incontinence. No food sensitivities or any bowel issues. Good sexual function, though my libido still isn't what it used to be. Maybe that's a good thing, and I am 60 after all. (Like the song, "I'm not as good as I once was, but I'm as good once as I ever was!").

My testosterone seems fine, though it hasn't been checked in a while. There is still a very occasional hot flash. And, for what it's worth, the "boys" never recovered from the ADT-induced shrinkage. They seem to effectively produce testosterone but they're quite small, not even 1/3 of what they used to be (about like small grapes). That's kind of weird. But if that's the only noticeable remaining physical side effect, then I'm very happy!

Well, the PSA check was up a bit this time, at 1.0. This is the first time since treatments that it has hit that level. If it is actually a trend it would indicate a 6 month doubling time, which is pretty fast. I'm hoping this is just normal variability, and that it will be down when we check again in 3 months (January).

If it's up again then, the doc says we'll do some scans to see if we can tell what's going on. I'm not sure about that, since I'm not a fan of the "whack a mole" concept, zapping lymph nodes or whatever to knock down PSA. What would we do if the scans do, or don't, show anything anyway? I think once metastatic capability has developed, unless something is symptomatic there isn't much benefit to treating individual lesions. It's like digging out individual dandelions in a lawn that's seeded with them. It's ultimately futile.

Anyway, we'll just hope that's an academic point and nothing will develop!

My PSA has wandered up and down since ADT ended Mar 2016. It shows a slow overall upward trend, with a pretty long doubling time. But it's hovering around 1.0. Considering my PSA at diagnosis was only 5.2, that seems high.

However, PSA is not a very good metric for my case. My cancer is primary Type 5 cells (G9 5+4), and Type 5 cells don't make much PSA since they're so degraded (undifferentiated). In fact, they have been said to make only about 1/4 or so of what Type 3 cancer cells do. So if recurrence would be declared at 2.0 ("Phoenix" criterion after radiation as primary therapy), what does that mean to someone like me with only G9 cells? Would recurrence really be at 0.5? There are so few of these cases the urologists have never bothered to distinguish that. And, well, mine's substantially above that.

So, I made a difficult choice, that perhaps most would not do. Since mine has well over a 50% chance of recurring anyway, and my PSA after therapy is way higher than "undetectable", I decided to bite the bullet and proactively go back on ADT. This is early, and it will be permanent (studies indicate that Type 5 cell cases are the only ones that benefit from lifelong ADT). Mine was reasonably high volume, stage 3 on diagnosis, and primary Type 5 cells. With all of those factors, ADT seems reasonable for me. So... back down the rabbit hole!

To offset the zero testosterone hot flashes, fatigue, and loss of bone density, I'm also on low-dose estrogen patches. I feel absolutely great. The side effect of this is my sex life has been eliminated, but at this point in my life that's not a problem. Actually, it's something of a relief. But for anyone reading this, considering doing this, be aware that it's a likely outcome.

And yes, my latest PSA is now undetectable. I'll be on ADT the rest of my life, and I'm good with that!

Quick update. ADT and Estrogen patches are working as expected; I'm feeling great with an undetectable PSA.

My humble opinion is that it's impossible to overtreat a case with primary Type 5 cells, especially locally advanced. Studies for this situation are nearly non-existent, since fortunately it is pretty rare. So, based on what I have learned about it over the years, I decided it was right for me (as described in the Sept 2019 entry).

I'm close to 7 years after my original diagnosis, and am thrilled to be where I am. If the PSA starts upward someday, with any luck we'll have even better treatment options by then. I'm expecting it to remain stable for at least a few years, though we know this is an unpredictable beast.

We've gone to 6 month checks on PSA now, looking for it to remain undetectable. If it isn't, well, we'll have to watch for any new trend as it would be castrate-resistant.

For now, it is rarely on my mind anymore, which is just amazing considering what I started with!

Update: this is now early 2023, TEN years after original diagnosis. What a blessing! At the beginning, it was quite unclear if I'd be around in ten years, so I'm very grateful to be here.

The permanent loss of testosterone, and replacing it with estradiol, has been working absolutely wonderfully for me. I feel great, my health is great, my PSA is undetectable, my bone density has finally become "normal" again. Life is good.

There is always hope. Never give up. There is ALWAYS hope!!

Redwing's e-mail address is: jerryg464 AT live.com (replace "AT" with "@")