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%
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.
Redwing's e-mail address is: firstname.lastname@example.org