Tag: Prostate Cancer

Month 91 – Random Meetings and Thoughts

On By DanIn Prostate Cancer, Recurrence, Treatment9 Comments

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

On By DanIn Prostate Cancer, Recurrence, Side Effects, Treatment9 Comments

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

On By DanIn Prostate Cancer, Recurrence, Side Effects, Treatment4 Comments

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 2,747 – Side Effects of Salvage Radiation Therapy

On By DanIn Incontinence, Prostate Cancer, Recurrence, Side Effects6 Comments

During my conversation with the radiation oncologist on Thursday, a big part of the discussion was on the long-term side effects of salvage radiation therapy. He stated that the probability of long-term urinary or rectal side effects was “in the single digits.” That reinforced my own understanding, but after the meeting, it occurred to me that we didn’t talk about the severity of those side effects in any detail.

I fired off an email to him on Friday asking, in essence, of those with long-term urinary and rectal side effects, what percent of those are mild, moderate, or severe?

He replied in a matter of hours and said that he couldn’t respond using the terminology in my email (I gave him definitions of what each of those meant in my own mind). Instead, he referred me to the Common Terminology Criteria for Adverse Events (CTCAE) used in standardizing terminology used in research across the globe. He referred me to “cystitis” and “proctitis” to see their definitions for grades 1 through 5. (Grade 1 was the least impactful; Grade 5 was typically death.)

The doctor also shared side effect data directly pulled from the manuscripts of 3 major randomized trials in post-prostatectomy patients. He didn’t provide the links—just the text—so I used the Google machine to come up with the links/articles. It’s interesting to note that all three are focused more on adjuvant radiation therapy than salvage therapy, but I suppose getting zapped for one is pretty much the same as getting zapped for the other.

 

Bolla et al, Lancet, Vol 366, Aug 2005

Late effects of rectal and bladder grade 3 or higher were only slightly increased in the XRT group vs. the observation group: 4.2% vs. 2.6%.

Wiegel et al, JCO, 2009

There was only one event of grade 3 toxicity (bladder). No grade 4 events were recorded. There were three events (2%) for grade 2 genitourinary adverse effects in the RT arm compared with none in the other arms. In addition, two grade 2 GI adverse effects (1.4%) were seen in the RT arm compared with none in the other arms.

It was interesting to note that the doctor omitted the second half of that paragraph from the original study:

Altogether, the cumulative rate of adverse effects for bladder and rectum (≥ grade 1) was 21.9% in the RT arm and 3.7% in the wait-and-see group (P < .0001; Appendix Fig A2, online only). One urethral stricture occurred in arm A and two occurred in arm B. Incontinence was not assessed, because it is not mentioned in the RTOG/EORTC scoring scheme.

Thompson et al, J Urology, 2009

We conducted a companion quality of life study in 217 men randomized to S8794 with assessments at baseline, 6 weeks, 6 months and annually for 5 years. A strength of this analysis was the inclusion of a 6-week assessment, designed to capture the side effects of radiotherapy at their peak. Tenderness and urgency of bowel movements were significantly more common at the 6-week point (47% vs 5%) in the radiotherapy group but by 2 years there was little difference between the groups. Urinary frequency was more commonly seen in the radiation group but there was no difference in the rate of erectile dysfunction (common in both groups) between groups. Global assessment of quality of life, while initially worse in the adjuvant radiotherapy group, became similar by year 2 and was increasingly superior in the radiotherapy group during the following 3 years. This gradual switch toward a superior quality of life in the adjuvant radiotherapy group should be examined in the context of the increased rates of PSA recurrence, salvage radiotherapy and hormonal therapy in the observation group, all of which have negative impacts on quality of life.

I’ve only skimmed the full studies at the moment, and I’ll come back to them in a day or two. On the surface, however, the numbers have eased my fear of long-term side effects a tad.

Right now, I just need to get away from the topic for a few hours and have some fun. Time to go out and play…

Stay tuned.

Month 90 – A Date with the R.O.

On By DanIn Prostate Cancer6 Comments

The week after my visit with the urologist last month, I had to relocate my office at work temporarily while the facilities team upgrades the HVAC system in our permanent offices. As I was setting up my new desk, I glanced up and saw this pinned to the bulletin board, apparently left by the previous occupant:

IMG_20180501_164755468_HDR (1)

Coincidence? Yep. But the timing couldn’t have been better.

I do believe that a positive outlook is helpful in situations like this, but with a healthy dose of reality thrown in for good measure. We can all “do our worst” in combating this disease, but the reality is that the cancer is in the driver’s seat. Yes, we can be proactive in doing our research and selecting our path, but we’re always reacting to the latest test result or the efficacy of the last treatment option.

Me doing my “worst” in the last three weeks has been slogging my way through the Veterans Affairs (VA) administrative logjams to get my appointment scheduled with the radiation oncologist. I finally got my appointment set up yesterday.

In a nutshell, the urologist forgot to hit the “submit” button for the referral. It took three weeks of emails and phone calls to figure that out, but we made it. The urologist was truly apologetic in his email to me. I get it. We’ve all made similar blunders. No harm, no foul.

My appointment is next Thursday, 17 May 2018, but there was a surprising twist in it.

All of my appointments with the urologists have been at the VA Medical Center in La Jolla (San Diego), and I was fully expecting my appointment with the radiation oncologist to be there as well. After all, it is the preeminent VA medical facility on the West Coast. Silly me.

The appointment is at Naval Medical Center San Diego. The twist? I work at Naval Medical Center San Diego—seventy-five steps (I counted) from the radiation oncology department. I pass the department twice a day on my way to or from my car, and I always thought to myself as I passed, “Someday I may be in a place like this.” Little did I know that I would be in that specific place!

Of course, the first thing we need to do is answer a boatload of questions before making the decision to get zapped. That’s the purpose of this initial consult, so I’ll be working on that list this weekend and next week.

Stay tuned.

Medical Xpress: Research finds ‘Achilles heel’ for aggressive prostate cancer

On By DanIn Prostate Cancer, ResearchLeave a comment

Here’s an interesting article that shows promise in the treatment of advanced prostate cancer that popped up in one of my news feeds.

Medical Xpress: Research finds ‘Achilles heel’ for aggressive prostate cancer.

 

Day 2,722 – No Probability for Me

On By DanIn Prostate Cancer, Recurrence, Treatment9 Comments

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.

Month 87 – Adapting and Researching

On By DanIn Emotional Aspects, Prostate Cancer, Recurrence10 Comments

Ever since my December meeting with my doctor to review the latest uptick in my PSA reading to 0.10 ng/ml where he told me I need to begin to think about salvage radiation therapy, it’s as though the clock has been turned back to when I was first diagnosed. That makes this all very real once again. We’re getting closer to having to make a decision to move from monitoring to action.

My emotions have been all over the place—from mad as hell at the world to ready to bawl at the drop of a hat—and I felt compelled to research as much as I could, as fast as I could even though my next PSA and doctor’s appointments aren’t until April. On the good news front, the peaks and valleys on the emotional roller coaster have diminished some over the last two months. They’re still there, but not as bad as they initially were.

IMG_4828
San Diego at Night

I’ve been spending a good amount of time (perhaps too much) researching and hanging out in the advanced prostate cancer section of various online support groups. That’s been both helpful and a tad frightening. It’s been helpful because I’m new(er) to the advanced prostate cancer discussion, and I’ve been learning more about the different treatment options, protocols, and latest research. It’s been frightening because reading the first-hand stories—while valuable and necessary—has stoked my fears of the treatment side effects.

I did come across one thing in my research that I’ll definitely discuss with my doctor in April.

We know biochemical recurrence after prostatectomy has been widely defined at 0.2 ng/ml for quite some time, yet more and more research is indicating that salvage therapy should begin early in order to have the best chance of success. Some suggest starting SRT before hitting the 0.2 ng/ml threshold.

Of course, as we all know in the field of prostate cancer, nothing is clear-cut. You can easily find research that has conflicting recommendations.

I came across Stephen J. Freedland’s 2005 study (co-authored by Alan Partin and Patrick Walsh—heavy hitters in the prostate cancer world from Johns Hopkins) that shows I may not have to do anything other than continue to be monitored given my status (PSA = 7, PSADT > 15 months, time to recurrence > 3 years). In fact, he writes:

“It is amazing to me that for a man who has all the low-risk features – if his PSA doubling time is greater than 15 months, his Gleason score is below 8, his PSA comes back after three years – his odds of being alive 15 years later are 94 percent.” These men do not need treatment, he adds. “If we know that 94 percent of these men are alive and well 15 years after surgery with no further treatment, anything we do to treat them is unlikely to improve on that, and probably would only affect the quality of life.”

That’s quite encouraging for someone fearful of side effects and loss of quality of life. Combine that with the Pound study done in 1999 that said it takes on average eight years to metastasis after BCR and, on average, another five years to death after metastasis without any additional treatment, and you’re building a stronger case for doing nothing other than continued monitoring for those of us who are averse to treatment side effects. At least in my mind at the moment.

You can read an abbreviated summary of the Freedland study in the Johns Hopkins newsletter, Prostate Cancer Discovery, here, and the full study as published in JAMA here.

I’m slowly adapting to this new path that I’m on, and I’ll work to find the right balance to stay away from the online support groups and the Google machine to maintain a sense of sanity. I fear, however, that controlling the emotional roller coaster is going to be far more challenging from this point forward (steer clear or pass the tissues). Just a hunch.

One related footnote. I’ve not yet met with a radiation oncologist since my PSA started going up in September 2015. If it stays the same or goes up again in April, I’ll ask the urologist for the referral just to start the conversation and learn more from his/her perspective.

Oligometastatic Prostate Cancer

On By DanIn Prostate Cancer, Recurrence, Treatment9 Comments

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.

Life After Radical Prostatectomy: 84 Months Later

On By DanIn Incontinence, Life After Prostatectomy, Prostate Cancer, Recurrence, Sexual Function12 Comments

So it’s been 84 months since my radical prostatectomy. How am I doing?

Status

With my PSA increasing steadily over the last two years to the point where it’s now at 0.10 ng/ml, it appears that I’m on the path to recurrence. Needless to say, that’s not the outcome that I had in mind when I started this journey, but my surgeon did warn that approximately 20% of prostatectomy patients have the cancer return.

Emotions

My visit to the doctor in December went just as I expected it would, with one exception. I left the office feeling as though the wind had been knocked out of me. This whole notion of recurrence took on a whole new meaning when the doctor suggested that we’re going to have to start thinking about radiation in the future. It’s becoming real again. Since then, I’ve been doing okay. Not great. Not horrible. Okay.

Incontinence

I remain “dry” 98% of the time. There have been a few very long days at work where my body tired and, combined with the physical exertion at the end of the day, I was a bit more prone to leak. Rarely do I need to get up to go to the bathroom in the middle of the night—I can last 6-7 hours most nights.

Sexual Function

I continue to do so-so in the ED department. Remember, I have only one nerve bundle remaining, but I can get an 80%–90% erection most of the time. Some days are better; others are worse.

I do find that my libido is still there, and there are times through the day where I can feel things stirring down below. Not enough to obtain a natural erection—those days are gone—but enough that with a little stimulation, it would be much easier to achieve an erection.

Summary

Recurrence is the fear of every cancer patient because now your options become more limited and the costs of dealing with it—emotional, physical, and financial—begin to increase significantly. It’s time that I start seriously preparing for the trip down this fork in the road. The good news is that I have time with my PSA doubling time as long as it is.