Month 82 – Reviewing PSA Results with Doctor

On 12 September 2017 By DanIn Prostate Cancer, Recurrence16 Comments

At this afternoon’s visit to the doctor to review my August PSA results, he asked, “How are you doing?” I replied, “I’m hoping you’re going to tell me.” “With a PSA of 0.09, you’re doing fine.”

I have to admit that I wasn’t quite psychologically prepared for that answer. Nor was I really prepared for the conversation that followed. But before getting into that, the bottom line was just as I expected: Continue to monitor PSA on a four-month cycle, which has me back in the lab in early December.

This was a new doctor that I hadn’t seen before and he was definitely more seasoned than the last one that I had. Still, all those years of experience could have taught him some better communication skills. He talked in broad generalities and in circles—even in response to my direct questions—and that was more than frustrating.

On the topic of recurrence, he didn’t think that I should be so quick to assume that an increasing PSA is indicative of recurrent cancer. He offered up the possibility that it could have been some benign prostate tissue left behind after the surgery and has grown enough where it’s detectable on the PSA test. Or, it could be cancer.

On the topic of PSA tests in general, he reminded me that the really old threshold for biochemical recurrence was 0.4 ng/ml before it was lowered to 0.2 ng/ml. It seemed that he valued the ultra-sensitive PSA test only as it related to the post-surgery pathology. If the pathology was bad, he seemed to put more stock in the ultra-sensitive PSA; but if the pathology was good, he seemed less inclined to put stock in it.

In other words, if you had a 4+3 Gleason score, positive margins, seminal vesicle involvement, or lymph node involvement—or some combination thereof—he would be more likely to consider acting on a 0.09 ng/ml PSA. But it my case with a 3+4 Gleason, negative margins, and no seminal vesicle or lymph involvement, my sense was that his response to my 0.09 PSA was a pretty nonplussed, “Meh.” Or, if my PSA gets to “around 0.13 ng/ml,” we might start exploring treatment options.

On the topic of doing additional testing such as scans to see if there is cancer anywhere, he said that nothing would show up on a scan or MRI with a PSA of 0.09. I want to dig into that some more.

On the topic of salvage treatments, he thought that, given my pathology, the first step would be “a little radiation.” (I’m not sure if sprawling out on the beach for 7 weeks qualifies for “a little radiation,” but it may be worth asking.) He wouldn’t do ADT (hormone therapy) in conjunction with the radiation, again, given my pathology.

Lastly, at one point during the conversation, he quite confidently made the bold prediction that I wouldn’t die from prostate cancer. You think I’d be jumping for joy. I’m not. Perhaps its my experience as a seasoned patient that’s telling me to withhold judgment on that one for the time being.

All in all, this is good news. My lack of enthusiastically embracing it, however, comes from the fact that, rather than eliminating variables to consider, I feel that this meeting introduced a few more, and that just muddied the waters. Emotionally, at this point, I just want this stupid disease to pick a path and stay on it. I may also check with the VA to see if there’s any way I can pick one doctor that I can build a relationship with rather than this new-doctor-a-quarter routine.

Month 81 – PSA Threshold for Salvage Therapy Survey Results

On 11 August 201710 August 2017 By DanIn Prostate Cancer, Recurrence4 Comments

In last month’s post, I asked readers to complete a short survey to get a better idea of the PSA threshold that would dictate the beginning of salvage therapy. The survey asked:

How their medical teams defined “undetectable” PSA levels.
How their medical teams defined biochemical recurrence after a prostatectomy (what PSA level).
At what PSA level did they and their medical teams decide to begin salvage therapy.
How long after PSA biochemical recurrence was it before salvage therapy began.

Before going into the results, I first want to thank those who took the time to participate. You may view the results using the link below:

Salvage Therapy Treatment Survey Results

I could have designed the survey better. I probably should have asked for post-surgery Gleason score and pathology to see if there was a correlation between a higher Gleason score and acting earlier at a lower PSA level. The sample size is small enough where it’s not statistically significant, but there were some interesting observations:

The definition of “undetectable” generally ranged from <0.01 to <0.1 ng/ml. I believe that to be a reflection of whether the traditional PSA test or the ultra-sensitive PSA test is being used.
The consensus for the definition of biochemical recurrence seemed to be 0.2 ng/ml.
The PSA level at which some sort of salvage therapy began was widely spread between 0.17 ng/ml and 3.5 ng/ml.
The time to begin salvage therapy after biochemical recurrence varied from one to 35 months.

[Note: I’ll keep the survey open for a while longer and new responses may skew the summary above.]

For me, there aren’t any real “A-ha!” findings that provide clarity, and I expected that going into this exercise. The only thing that’s clear is that each case is unique—from both the patient’s perspective and the medical team’s perspective—and that means that my numbers will be different from your numbers and those will be different from Sam’s numbers and all of us will act (or not) on those numbers differently.

It is nice to know, however, that my medical team is in alignment with others on some of the measures.

And just to prove that I’m not nuts obsessing over the definition of biochemical recurrence, a somewhat dated research paper (2007) showed “a total of 145 articles contained 53 different definitions of biochemical recurrence for those treated with radical prostatectomy….In addition, a total of 208 articles reported 99 different definitions of biochemical failure among those treated with radiation therapy.” [Emphasis added.]

No wonder there’s confusion among us patients!

For me, the key statement in that paper was, “The Panel acknowledges that the clinical decision to initiate treatment will be dependent on multiple factors including patient and physician interaction rather than a specific prostate specific antigen threshold value.”

It’s up to us.

Month 69 – On Reflection

On 11 August 201610 August 2016 By DanIn Emotional Aspects, Prostate Cancer, RecurrenceLeave a comment

It’s been a week since my last PSA results came in—it seems like eons ago—and I really have been able to just ignore them for pretty much the entire time. That’s good.

With the yo-yo movement in my PSA over the last 4 tests, I can’t conclude much of anything aside from the fact that there will be more PSA testing in my future.

The engineer in me reflected on the last year of testing looking for some logical explanation.

I do remember that a year ago, just before the September test, I made the mistake of having an orgasm within 24 hours of the test. I thought that may have explained in the increase from undetectable to 0.05 ng/ml. But then the doctor threw in the possibility of the new ultra sensitive PSA test skewing the results. Two variables that weren’t present for the previous undetectable test.

For the December and April tests, I eliminated one variable by abstaining from orgasms for a nearly a week before the blood draw. The doctor asked me to abstain for two weeks for the August test, and I did.

If the next PSA test 3–4 months from now stays in the 0.05–0.08 range, I’ll be more inclined to think that this is a result in the change to the ultra sensitive test and nothing more. (Part of me wants to go to another lab for an independent test and see what it produces, but that will just introduce one more variable when we’re trying to eliminate them.)

At 0.05–0.08 ng/ml, I’m still well below the widely accepted biochemical recurrence threshold of 0.2 ng/ml. That generally makes me breathe a sigh of relief, and I think that I can come to terms with living with those numbers if that’s all it is.

But a UCLA study published in May 2015 showed that, under certain conditions, the ultra sensitive PSA threshold of 0.03 ng/ml was a good predictor of recurrence. Yes, it was a small (247 patients) retrospective study, but that little fact has stuck in the back of my mind and gives me concern. (I wrote in more detail about it in my Day 1,768 post.)

There was also a Johns Hopkins study published in February 2016 that also indicated that low PSA levels measured by an ultra-sensitive PSA test were predictors of recurrence.

So I’m going to just wait until the doctor appointment on 23 August and see what she has to say about all this. It will be interesting—maybe even entertaining.

Day 1,852 – PSA Results

On 6 December 20156 February 2016 By DanIn Prostate Cancer, Recurrence1 Comment

The results are in. My current PSA is 0.04 ng/ml. In September it was 0.05 ng/ml and prior to that it had been undetectable for four years.

So what does this all mean? Hell if I know. I’ll learn more from my urologist on 15 December. In the interim, here’s my take on it.

The PSA level is still well below the biochemical recurrence level of 0.2 ng/ml, so no need to panic.

I’m glad to see that it didn’t increase beyond 0.05 ng/ml. That means it’s consistent for now (why quibble over one one-hundredth of a nanogram) and perhaps the change in lab methodology to the ultra-sensitive PSA test is, in fact, what’s driving the elevated readings.

On the other hand, that may not make sense. The less sensitive PSA test (accurate to 0.03 ng/ml) would have been able to detect the 0.05 or 0.04 readings if my PSA was elevated prior to the conversion to the uPSA test. That tells me that my PSA has risen slightly in the last year.

I have to admit that I hoped for better news but am glad it’s not worse news. As I predicted a while back, I suspect we’ll continue to monitor my PSA on a more frequent basis (quarterly?) going forward for years to come.

I’ll share the urologist’s thoughts after the appointment on the 15th. Thanks for your kind thoughts and support along the way.

Day 1,770 – Let the Waiting Begin

On 15 September 20151 December 2016 By DanIn Emotional Aspects, Prostate Cancer, Recurrence, Treatment1 Comment

It’s amazing how people in southern California forget how to drive when a little liquid sunshine falls from the sky. Focusing on the horrible traffic in the rain kept my mind off the discussion that I was about to have. As soon as I plopped into the chair in the waiting area, the anxiety level shot back up.

The good news is that I’m not an overreacting drama queen. The bad news is that the doctor shared my concern about the movement in the PSA, but with a significant caveat.

In March of this year (after my PSA test in January and before this one in September), the hospital switched over to using the new ultrasensitive PSA test, so comparing numbers from January to September may not be a direct apples-to-apples comparison. With the new test, some of her other patients are experiencing the same phenomenon–undetectable for years, and now coming in at 0.03 – 0.05 ng/ml with the new test.

She did say, however, that she was concerned enough that this “warrants watching” to try and figure out what’s really going on, and she wants me to return in three months. The September reading will, in essence, be a new baseline uPSA, and we’ll see what December’s has to offer.

Doing the test sooner (like this afternoon!) would be too early after the 2 September test. By waiting three months, we’ll get better insight into what’s happening and what the uPSA velocity may be if it continues upward. The faster the increase, the more urgent the need for subsequent treatment.

We did briefly discuss what would happen if there are signs of recurrence. One of the first things that may come into play is getting a bone scan to see if it has spread. We talked of salvage radiation therapy (SRT) and a little about hormone therapy as options when we get to that point. We didn’t go into a lot of detail on either, mainly because I didn’t press for a lot of detail at this point and virtually everything she said fell in line with the research that I had done. It’s far too early to be thinking in those terms because we don’t know what we’re dealing with yet.

I did mention the recent studies that indicated that a 0.03 ng/ml reading on a uPSA was showing itself as a predictor of biochemical recurrence, and she really didn’t offer any insights on that one way or the other.

It appears that I’m probably headed back to a quarterly testing schedule for a while until we figure out exactly what’s happened. Just a change in testing methodology? Rising PSA? Full moon?

My next appointment is 15 December. Merry Christmas!

Let the waiting begin.

[We now return you to our regular blog posting schedule, or at least until I have my next freak-out.]

200th post!!

Day 1,768 – More Research & More Questions

On 13 September 20156 February 2016 By DanIn Prostate Cancer, ResearchLeave a comment

Even I thought I may have been overreacting to the change in my PSA, and that I may simply be embarrassing myself spouting off the way I have. Still, it’s better to vent and look silly than ignore the potential problem.

Of course, I had to continue my research, and the more I dug, the more I learned, and the more I began to believe that I may not be overreacting at all.

In this instant Internet information age, it’s easy to find tons of material. In my Month 58 – Welcome to PSA Anxiety post, I quoted a Dr. Chan from Johns Hopkins University:

On a technical level, in the laboratory, Chan trusts the sensitivity of assays down to 0. 1, or slightly less than that. “You cannot reliably detect such a small amount as 0.01,” he explains. “From day to day, the results could vary — it could be 0.03, or maybe even 0.05” — and these “analytical” variations may not mean a thing. “It’s important that we don’t assume anything or take action on a very low level of PSA. In routine practice, because of these analytical variations from day to day, if it’s less than 0. 1, we assume it’s the same as nondetectable, or zero.”

On closer examination and research, though, that quote came from early 2000, over 15 years ago. There have been advances in technology in 15 years. Lesson learned: Even though the information came from a trusted source, it may not be the most current. Read the dates!

There have been subsequent studies by UCLA and even Johns Hopkins that suggest that today’s ultrasensitive PSA tests (uPSA) are more reliable and can, in fact, be good predictors of biochemical recurrence (BCR).

From one article on the Prostate Cancer Infolink website:

Ultrasensitive PSA reliably predicts eventual biochemical recurrence (a UCLA study)

Researchers at the University of California, Los Angeles (UCLA) looked at available evidence that the uPSA test might afford radiation oncologists the opportunity to treat patients late enough that they are assured to be on a path to clinical recurrence, yet early enough that waiting for treatment does no oncological harm. Kang et al.conducted a retrospective analysis of data from 247 patients treated at UCLA between 1991 and 2013 who were found on post-op pathology to have aggressive disease characteristics — stage pT3-4 disease and/or positive surgical margins — and who received uPSA tests….

Kang et al. found that a uPSA ≥ 0.03 ng/ml was the optimal threshold value for predicting biochemical recurrence (BCR). Other findings included:

uPSA ≥ 0.03 ng/ml was the most important and reliable predictor of BCR. It predicted all relapses (no false negatives: no one was under-treated), and hardly ever predicted relapses incorrectly. Only 2 percent would be over-treated by waiting for this cut-off.

It was especially prognostic if found on the first uPSA test after surgery.

Even if the first uPSA test was undetectable, any subsequent test where uPSA ≥ 0.03 ng/ml predicted BCR.

Other lesser predictors of recurrence were pathologic Gleason grade, pathologic T stage, initial PSA before surgery, and surgical margin status.

At 5 years of follow-up, 46 percent of patients had a BCR using the “standard” PSA ≥ 0.2 definition, 76 percent using the PSA ≥ 0.03 definition.

Treating when an ultrasensitive PSA level reached 0.03 ng/ml gave a median lead time advantage of 18 months over waiting until PSA reached 0.2 ng/ml.

It was necessary to monitor PSA for at least 5 years post-op, and to test at least every 6 months.

That study used the histories of men with aggressive prostate cancer; mine was not. I didn’t have positive margins and my tumor was classified T2c, so perhaps these findings are less applicable to me. Still, the line:

Even if the first uPSA test was undetectable, any subsequent test where uPSA ≥ 0.03 ng/ml predicted BCR.

…is something that I definitely want to talk to the urologist about given that I’m at 0.05 ng/mL. But I’m not going to get too worked up about it (I hope), because the Johns Hopkins study seemed to be broader in scope with less scary results. However, both studies seem to indicate that the 0.03 ng/mL can be a threshold for predicting BCR.

On the other hand, Walsh writes:

Radiation also was not likely to help men who had negative surgical margins. “This is logical,” explains the Johns Hopkins radiation oncologist Danyy Y. Song, “because patients with negative margins whose PSA persists after surgery are more likely to have residual disease outside of the prostatic bed, as opposed to those whose margins were positive at surgery, where disease is likely to remain in the area.” (and thus can be targeted with radiation).

I had negative surgical margins, so this can take the discussion with the urologist in a entirely different direction. Another question for the list.

I know that all this research in advance of the meeting with the urologist is a form of self-inflicted torture causing anxiety, frustration, and confusion. But I’d rather ensure that I’m knowledgeable than go into the meeting with my head in the sand. Knowledge is power.

The bottom line: I’m going to keep researching and learning (with a critical eye and more than a grain of salt). If, in the end, I’m proven that I overreacted and had nothing to fear, then I’ll be happily embarrassed and a bit smarter about uPSAs and biochemical prostate cancer recurrence.

On the other hand, if God forbid, I do have to journey down the BCR path, I’ll be steps ahead of the game and can advocate for myself with my medical team.

Is it Tuesday yet???