Day 3,175 – Unexpected Consult & Twisted Thinking

Last Thursday, a physician came into our office (keep in mind my office is in a hospital) and was asking about how to bring a volunteer on board to shadow him in radiation oncology. Of course, my ears picked up with the “radiation oncology” part of his request.

After explaining the process to bring his volunteer on board, I asked him if Dr. W was still in radiation oncology. Dr. W was the radiation oncologist that I saw in May 2018 to discuss my rising PSA, and he told me then that he planned on retiring in the next year or so. Dr. W had, in fact, retired according to Dr. B, the physician with the volunteer question.

Dr. B asked how it was that I knew of Dr. W, so I explained that I had the consult with him for getting zapped for recurrent prostate cancer. A bit to my surprise, Dr. B started asking a question or two and, the next thing you know, we’re having a ten minute consultation in the lobby of my office.

In a nutshell:

  • His threshold for starting salvage radiation therapy for recurrent prostate cancer was when the PSA hit 0.10 ng/ml.
  • He talked of how statistically the likelihood of the cancer being in my prostate bed is pretty high. In a tangential way, he implied that having positive margins confirms that the cancer is still in the prostate bed; having negative margins, as I did, makes things slightly less certain.
  • We had a very cursory conversation about imaging technologies, but my sense was that his view of the newer technologies was more optimistic than what I’ve read about their effectiveness at my PSA level.
  • He talked about how deciding to treat is a very personal decision and that there’s no right or wrong answer. But, with a PSA of 0.10, he said that I will be dealing with this again at some point in the future and, if I wait too long, the options for dealing with it become fewer.

At the end of the conversation, he was saying a treatment decision is also based on life expectancy and overall general health. Nothing new here. If I was 85 and had a cardiac condition, he wouldn’t recommend zapping; but if I’m younger and in generally good health, he would treat. “I would get treated if it were me.”

I thanked him profusely for taking the time to have a hallway consult when he was under no obligation to do so. I told him that I have another PSA test coming up at the beginning of October, and that we’ll see what that brings.


Now for the funny part and insights into how twisted my thinking can be at times…

Dr. B’s comment about life expectancy struck a chord with me because it’s something that I often joke about.

My father died at the age of 69 and his mother also died at the age of 69, so I’ve always joked that I’ll follow in their footsteps and die at 69, too. “It’s hereditary,” I’d say. Most would find it pretty morbid and tell me to knock it off.

If you’ve been reading this blog for longer than three minutes, you know I’m a numbers guy (see post title). So on the bus ride home after speaking to Dr. B, curiosity got the better of me. I wondered how freaky it would be if my father and grandmother lived the same number of days in their 69-year lives. When I got home, I ran the numbers.

I plugged their birth and death dates into the duration calculator that I use to calculate the day number of these impromptu posts and found that they didn’t live the exact same number of days, but it was close. Dad outlived Oma by 49 days.

You know I couldn’t just leave it there.

If I live as long as my grandmother, I’ll be checking out of Hotel California on 29 July 2027. If I live as long as dad, it will be 16 September 2027. If I follow Dad’s trend an outlive him by 49 days, it will be 4 November 2027.

And then I had my “Oh, shit!” moment.

I may have less time remaining than the amount of time that I’ve been running this blog—3,029 days (best case) vs. 3,175 days.

I began to wonder what I will do in those eight remaining years. If I have only one big trip a year, what are the eight places I want to go see? How many more times will I see the people important to me if we see each other only once ever 1-3 years? How much longer will I continue to work?

I know it’s cliché as hell, but it was a bit of a wake-up call to get me off my butt and doing more than I am right now. Nothing like having a deadline to motivate you, eh?

I also know that there are no guarantees. I could get hit by a car crossing the street tomorrow, or I could live until I’m 90. I don’t dwell on any of this, but it’s nice to be reminded—albeit in a twisted way—that none of us are getting out of here alive, no matter how hard we try to avoid the inevitable, and that the days we have left should be cherished and embraced, whether in ways big or small.

Oh. If I make it to 5 November 2027, everything from then on is icing on the cake. 🙂

Month 91 – Random Meetings and Thoughts

It was bound to happen. The other day I ran into my radiation oncologist in the little convenience store in the hospital where both of us work. It was kind of funny. There was his initial reaction when he saw me and recalled who I was, “Hey, howyadoin’?” he asked, followed quickly by a slight tinge of panic wondering if I was going to assault him with a battery of follow-up questions right next to the granola bars and packaged nuts. I didn’t. “Hi, Doc! How are you?” is all I replied, much to his relief, I’m sure.

A few days later, I was back in the convenience store standing in line behind a bearded 30-something guy in black scrubs. I commented, “Black scrubs? I don’t know that I’d want you coming into my room if I were a patient here. It would look like the Grim Reaper is coming to pay a visit.” (For being a terminal introvert, I can be good at striking up conversations with complete strangers.) He laughed and we chatted some more. “Where do you work?” I asked. “Radiation Oncology, so I suppose the black scrubs take on added meaning there.” He was one of their radiation technicians, and I didn’t bother to tell him that he may be zapping me someday soon.

All of that has highlighted me to resolve another internal debate that I’ve been having with myself: Whether or not to inform my coworkers of my recurrence.

I work for a small nonprofit that has a staff of 22 employees, plus, more and more staff members at the hospital know me because of the reach that our organization has there. In essence, we’re family. If I do choose to get zapped 75 steps away from my office, the chances of someone I work with seeing me entering or leaving Radiation Oncology are pretty good. “Surprise!”

Beyond that, I questioned why I want to share this with my work family. To have more shoulders to lean on? To let them know why I’m so distracted and distant some days? If I’m perfectly honest with myself, it’s a little bit of all of that. But I also know from experience that, when I shared my story with my coworkers shortly after being initially diagnosed, a burden had been lifted from my shoulders. “A burden shared is a burden halved,” someone once said, and there’s truth in that.

I was all set to share my story until tragedy struck when one of our staff members passed away unexpectedly. That put my little plan on pause, appropriately so.

Part of me is thankful for the pause. On reflection, I may be putting additional indirect pressure on the decision-making. If I’ve got 44 eyeballs looking at this introvert in anticipation of a decision, that could be nerve-wracking. Perhaps it’s best to wait to share my story until after I make the decision, that way there won’t be the second-guessing that comes when people question your choice, if not overtly, at least by that puzzled glance.

Speaking of the decision, I don’t know that I’m any closer to it. I continue to research for a few hours each week, reading articles and journals, and I’m coming to the conclusion that I probably have enough information on the treatment and its side effects to make the call. I’m not going to find that magical “a-ha” paper that swings the decision one way or the other.

One of the hang-ups that I have though, is the lack of ability to determine where the cancer is at my current PSA levels. I really would like to know with a high degree of confidence that we’re zapping in the right place. Yet, one article sticks in my mind where the author wrote, “That would be a self-fulfilling prophecy: by waiting for the cancer to put out more PSA [so the imaging could detect it], one is virtually ensuring that the cancer will grow, spread, and possibly metastasize.” Food for thought.

In my head, I’m thinking we wait for the August PSA results and go from there. Perhaps take a nice autumn vacation and, if I choose to get zapped, do so not long after I return. Or not. (Definitely the vacation part, though. I need that!)

Day 2,758 – Heads or Tails

IMG_5341That’s what it’s coming down to, or so it seems. Using the ultimate “executive decision-making aid” to determine what I’m going to do.

What brought this on? Another email exchange between me and my radiation oncologist.

Over the weekend, a few more questions popped into my head and I wanted to get his response. Yesterday, I fired off an email asking if any advances in radiation delivery technology or methods in the last 10-15 years improved the side effect outcomes over the studies he shared with me. In short, the answer was no—there were no appreciable changes.

Of greater interest to me was his interpretation of the Freedland study, which shows that I can do nothing and have a 94% chance of being around 15 years from now. His response:

I am familiar with the study you included, and it is one of many retrospective reviews on this subject. The authors preformed a retrospective review on a total 379 patients over period of 18 years from 1982 – 2000. Therefore, although the data are valuable and contribute to the literature, I consider it (as well as the many other studies on this subject) thought provoking.

Perhaps I’m reading too much between the lines, but his last sentence translates into “skeptical of the study” to me. He continued:

The bottom line is that you have a biochemical recurrence with a low, slowly rising PSA.  Do you need radiation treatment now, sometime in the future or never?  I don’t have a definitive answer to that question, but there are data to suggest “the earlier the better” and other data to suggest treatment might not be needed at all.  It depends on your point of view…

Am I upset by that response? Not really. It’s pretty much what I expected it to be, and that tells me that my research has been quite thorough. He and I both landed at the same place.

Will it make deciding my course of action any easier? Hell no. But it does reinforce that it’s my decision, and my decision alone.

Now where did I put those Eisenhower dollar coins again???

Day 2,754 – Researching Salvage Radiation Therapy—Again

It’s 7:30 p.m. on the Saturday of a three-day holiday weekend in the United States, and I’m reading articles on salvage radiation therapy. Who said prostate cancer wasn’t fun?!?

I did come across this informative article from the Journal of Clinical Oncology published in May 2007:

Predicting the Outcome of Salvage Radiation Therapy for Recurrent Prostate Cancer After Radical Prostatectomy

The authors set out to create a nomogram that predicted the “probability of cancer control at 6 years after SRT for PSA-defined recurrence,” and they speak at length about the variables used in their nomogram, as well as its limitations.

I plugged my stats into their nomogram and came up with a 70% probability that I won’t see any progression at six years. That’s right in line with what the radiation oncologist told me. (The nomogram is a little clunky to use, as it’s a graphical scale that you have to draw lines through to determine your score. I’d much rather have fields to enter on an online form that calculates it more precisely.)

There was one paragraph that talked about side effects of SRT that really caught my attention:

The potential for morbidity resulting from radiation therapy argues against its indiscriminate use in the salvage setting. Mild to moderate acute rectal and genitourinary toxicity is seen in the majority of patients, but the reported incidence of acute grade 3 to 4 complications is less than 4%.4,6,9,14,21,36 Late grade 1 to 2 rectal and genitourinary toxicity are reported in 5% to 20% of patients, and late grade 3 toxicity is less than 4%.3,4,6,8,11,21 Although rare, pelvic radiation therapy for prostate cancer is associated with an increased risk of secondary pelvic malignancies.40 Postprostatectomy radiotherapy does not appear to significantly increase the risk of urinary incontinence,3,4,6,14,21,41 but we must presume that it has some adverse effect on erectile function on the basis of the data from primary radiation therapy series. The nomogram can be used to restrict SRT to those patients most likely to benefit and avoid treatment-related morbidity in those predicted to have a low probability of a long-term benefit.

That 5% to 20% range for late grade 1 to 2 rectal and genitourinary toxicities made me go, “Hmmm…” Not quite the “single digits” probabilities that my radiation oncologist said.

After reading a number of the articles in the footnotes and listed on the “We recommend” column of the website, it’s apparent from most of them that starting SRT early is the way to go. It’s also apparent that the probability of being progression free at six years varies considerably from the 30% range to the 77% range depending on your PSA doubling time, PSA level, Gleason score, time to recurrence, and post-surgery pathology. But we already knew that.

This also caught my eye:

A rising PSA alone is not justification for initiating salvage therapy because patients with PSA recurrence are as likely to die as a result of competing causes as they are of prostate cancer.1 To determine the need for salvage therapy, we suggest using one of several existing tools to estimate the probability of developing metastatic disease or cancer-specific mortality.2,22,23 Patients at high risk of progression to these clinically significant events and/or a long life expectancy should be assessed for SRT using our nomogram.

Digging into the three footnotes listed, two are studies that I’ve already referred to in earlier posts—Pound and Freedland—and both suggest that it could take a very long time for the cancer to metastasize. The third study referenced, Predictors of Prostate Cancer–Specific Mortality After Radical Prostatectomy or Radiation Therapy, also reinforces that notion.

We’re right back where we started from: Zap early with an average 50-50 shot of it being effective (with the 4%-20% chance of long-term side effects) or do nothing but monitor.

I may send some of these links to my radiation oncologist on Tuesday and ask, “Which of these studies do you put the most stock in, and why?” and see what he says. Could be interesting.

Well that’s enough fun with cancer on a Saturday night. I’ll keep you posted on any new research findings or developments with the doctor.

Day 2,722 – No Probability for Me

I’m one of those people who always thinks of a snappy comeback—three days after the conversation.

Over the weekend, I reflected on my conversation with the doctor last Thursday, and one of the things that I failed to ask was what probability he would assign to the notion that my increasing PSA is attributable to benign residual prostate tissue instead of returning cancer. I sent an email that asked specifically:

I fully understand that none of us have a crystal ball, but the one thing that I failed to ask Dr. is what he thought the probability of this being benign residual tissue was. Is it 5%? 25%? 50%? His experience gave him the insights to make the comment, so his experience may also be able to measure the likelihood as well.

To which he replied:

I’m afraid I am not able to assign a percentage likelihood to the chance that any residual tissue is benign. I can only really extrapolate from the rate of change in the PSA. The longer it took to be detectable and the slower it rises, the more it seems likely to be a bit of benign tissue. Either way, it is those lab values and their pattern that will help to guide treatment. If it rises quickly then will treat, since a) that pattern is more likely cancer, and b) if it’s not cancer it is acting like cancer and the stakes are too high to disregard even with a high % prediction at this point that the tissue is benign.

Hope that helps!

Dr.

His comment, “…b) if it’s not cancer it is acting like cancer and the stakes are too high to disregard even with a high % prediction at this point that the tissue is benign,” seems to be all over the place and contradicts his opening statement of not being “able to assign a percentage likelihood.” Hmmm…

So that was an interesting little exercise. I really didn’t expect him to come back with a specific number, but I thought I’d ask anyway. I don’t know that his answer convincingly persuades me one way or the other, but it does allow me to throw a tad more weight behind his theory that this is benign. A tad.

Bottom line: The only thing we know with any certainty is that my PSA continues to climb. Beyond that, it’s all a freaking guessing game.

On a related note, I’ve yet to hear from the radiation oncology department with an appointment for me. If I don’t hear from them tomorrow or Thursday (a crazy day at work for me), I’ll try to call on Friday to get on the calendar.


UPDATE:

About an hour after posting this, I came across this little gem of an article from 2005:

The presence of benign prostatic glandular tissue at surgical margins does not predict PSA recurrence

Key points:

We conclude that the presence of benign prostatic tissue at the surgical margins is not associated with adverse prognostic features and does not have prognostic relevance; therefore, we do not advocate reporting the presence of benign prostatic tissue at the inked margins as a standard part of the surgical pathology report on prostatectomy specimens.

Because benign epithelium at surgical margins is not correlated with postoperative PSA rises, postoperative PSA increases should in most cases continue to be considered “biochemical failure”.

Obviously, that’s not good news and certainly warrants more research.

This article from 2013 calls a few things into question:

Benign Prostate Glandular Tissue at Radical Prostatectomy Surgical Margins

Key point:

The most interesting finding of this study is the identification of Benign Glands at the Surgical Margins (BGM) after both Open Radical Prostatectomy (ORP) and Robot Assisted Laproscopic Radical Prostatectomy (RALRP) was not associated with recurrence, either biochemical or clinical, during a median follow-up interval of 49 months after ORP and 28 months after RALRP.

Extending followup further should clarify whether BGM leads to low, detectable levels of PSA that may not meet threshold for defining biochemical failure. This may be particularly relevant with the widespread availability of ultra-sensitive PSA assays. The routine use of ultra-sensitive tests after treatment has not been validated and remains controversial in clinical practice, and may be particularly true in patients at low risk of disease recurrence and potentially in those with BGM.

Within our cohort, longer follow-up may reveal detectable levels of PSA associated with BGM that may not reflect actual prostate cancer recurrence but rather a clinically benign elevation of PSA.

In other words, there’s more research to be done.

Oligometastatic Prostate Cancer

There’s a mouthful for you.

I had seen the term bantered about in one of the online support groups that I participate in, and one of the members posted a link to a video [below] put together by the Prostate Cancer Research Institute featuring Dr. Eugene Kwon from the Mayo Clinic. While this may be old news to some, it was new to me, and it was definitely worth the 29 minutes to watch—I learned a lot.

First, oligo means scant or few, and when cancer metastasizes, it doesn’t metastasize throughout your entire body all at once. It’s not like throwing the switch on the national Christmas tree so your whole body lights up in a scan. It starts small and spreads from there. The hypothesis is that, if you treat those early oligometastatic locations, you are much more likely to have a successful outcome. As Dr. Kwon says, it’s a lot easier to kill something small than it is to kill multiple resistant larger tumors.

Second, imaging technology has now advanced to the point where those oligometastatic sites can be identified for treatment. Interestingly, in Dr. Kwon’s experience, only 30% of the cancer that comes back is found locally in the prostate bed. To me, that is hugely important. (For the remaining cancer, 54% is distant metastases and, in 16% of the cases, the metastases are both distant and local.)

The current standard of care is to start salvage radiation therapy (SRT) without the benefit of advanced imaging, zapping the crap out of the prostate bed, with an apparent seven in ten chance that it won’t be effective. And, as an added bonus, you get those potential life-long side effects from the radiation.

Of course, after (or in conjunction with) SRT is androgen deprivation therapy (ADT). It’s palliative in nature and only prolongs life with even more side effects.

Dr. Kwon asserts that, if you go after those early oligometastatic sites—surgically removing “hot” lymph nodes or spot-radiating affected bones—those treatments can be more curative in nature. Curative is certainly better than palliative.

You can rest assured that I’ll be investigating more of this in the future and discussing it with my doctor in April.

Month 68 – Waiting for the Next PSA Test

This will be a short post this month—my brain has been prostate cancer-ed out after the last few months and needs a respite for a few weeks before I buckle in for the roller coaster ride that is the next PSA test.

Speaking of the next PSA test, I’m planning on going in for the blood draw right around 1-3 August 2016. We’ll have to see how my schedule looks that week.

My urologist has authorized me to get the blood draw as of 1 July, so I could go in tomorrow if I really wanted to, but I’m going to do my best to stick to the first week of August to preserve the even spacing of the last three tests—pretty close to exactly four months apart ( 3 December–6 April; 6 April–3 August).

If I lose my willpower and go early, I’ll let you know.


This week also offered up some major news on the prostate cancer front with a shift towards genetic testing to help determine how to best treat prostate cancer. You can read more about it in this Washington Post article, Leading researchers recommend major change in prostate cancer treatment.

Month 64 – Rethinking How Aggressively to Treat Cancer

Scrolling through my Facebook feed, I came across this interesting article, Gentler attack on cancer may mean that we can live with it longer, about taking a less aggressive approach to treating cancer in order to live longer. The theory is that, if you try to kill every cancer cell with a very aggressive initial treatment, any remaining cancer cells become resistant to further treatment and can be more problematic. If you take a slower initial approach to just contain the existing cancer cells, you may be able to extend your life.

I also came across this article, ASCO Endorses Active Surveillance for Prostate Cancerrecommending active surveillance over immediate treatment for those with low-risk prostate cancer (low-risk being defined as a Gleason of 6 or less). There appear to be some common sense reality checks that allow for exceptions to their recommendation as well. It’s an interesting read.


On my own front, I’ve been doing well emotionally knowing that my next PSA test is coming up soon. My appointment with the urologist is on 19 April 2016, but I’ll probably get the blood drawn when I’m scheduled to be in the clinic for another meeting on 6 April (my weight-loss group—81 lbs./36.7 kg lost!). That means I can probably get my results online around the 9th or 10th and, with luck, they’ll still be in the 0.04–0.05 ng/ml range (or less).

Speaking of luck, my streak of bad luck in 2016 continued. On my way home from my new job on my second week there, I was cut off on the highway by some yahoo not paying attention, and I had to stand on the brakes to avoid hitting him. Sadly, the gal behind me didn’t react quickly enough and rear-ended me to the tune of $2,500 USD in damages. <Sigh> Thankfully, insurance is covering the entire cost, as it wasn’t my fault—my deductible was waived. Of course, the guy who caused the accident drove off into the sunset without stopping.

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Biology Ahead!

Wow. I haven’t used that little warning symbol in a long, long time, but there is something to report (I meant to put it in my Life After Prostatectomy–60 Months Later post, but forgot).

One of the potential side effects of a prostatectomy is penile shrinkage. I’d say that I had noticed the change, but interestingly, things seem to have returned to pre-surgery size in the last few months. That’s something to discuss with my urologist in April (not that I’m complaining—just to see if it’s common for that to happen, and if it really takes five years for it to happen).

Day 1,770 – Let the Waiting Begin

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.]

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200th post!!

Day 1,769 – Getting Prepared

It’s the day before my meeting with my urologist, and I’ve been scribbling down the questions that I’m going to ask tomorrow. The Boy Scout in me  is coming out: Be Prepared.

Emotionally, it’s been one of my better days in the last few days. Yesterday, I was mad as hell in the morning and sad by sunset.

One of the infuriating things about this whole adventure is that there’s just sooo much information that’s out there, and there are so many different approaches to the same issue, that it makes it extraordinarily difficult to sift through it all and make sense of what I should do next. Then, of course, there’s the inherent bias introduced by perspective. Talk to a urologist, get one opinion; talk to an oncologist, get another; talk to a surgeon, get a third. While they all care about their patients, let’s face the fact that they are running a business and that can influence recommendations.

A case in point is the fact that a few days ago, I read something that made me think I would be a good candidate for salvage radiation therapy based on my Gleason score and time to PSA increasing. The next day, I read that, because I had negative margins, SRT wouldn’t really be an option, as the cancer would be outside the prostatic bed. Maybe I was just too drained and misread one or the other, but it sure can be confusing.

With luck, I’ll have some answers by lunchtime tomorrow.  Look for an update in the afternoon where hopefully I’ve been proven to be an overreacting drama queen.

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