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 fPSA11/6/13 <0.1
4/30/13 9.67 na%
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.
At the end of August, I completed 44 sessions of radiation therapy with minimal side effects so far. 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 effective! 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.
This is a link to a thread about
my radiation therapy experience. There's a video of an actual treatment session for those who may wonder what that's like.www.healingwell.com/community/default.aspx?f=35&m=2878923
November 7, 2013 - update:
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!
February 10, 2014 Update
My PSA came back today at <0.01, T=10, so continued success! "Controlled remission" is the most applicable term I've seen; "controlled" because still under treatment (ADT2), and "remission" because there's no evidence of cancer activity. Next check in May.
May 2014 update
PSA is still undetectable (<0.1, different assay). RO says, "Of course, and we expect it to stay there while you're on ADT.". I like the attitude, and I'm hoping he's right. He says let's wait 6 months for the next check, and so we will - November next stop!