Tag: Prostate Cancer

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.

Day 2,596 – Doctor Visit

On By DanIn Prostate Cancer, Recurrence8 Comments

I met with my doctor this afternoon to review my increasing PSA results, and it went just about as expected. There’s increasing concern, but things are progressing slowly enough that we can continue on the four month test cycle for now. That means I’ll be doing this all over again in April.

There were a few reality check moments in the conversation, though. I’ll get to those in a moment.

One thing I need to learn to do is shut up—at least for the first part of the meeting with the doctor. I’m not very good at letting the doctor talk and offer up his thoughts and recommendations and then ask the questions that I have. I just launch into a barrage of questions based on the research that I’ve done and assault the poor guy. On a positive note, he really didn’t dispute anything that I told him nor did he tell me that I was completely out to lunch on certain issues.

We reviewed the success rate for SRT, with various studies showing it to be 35%-55% effective at being progression-free at 5 or 6 years. (Here’s one.) We also discussed the potential side effects of SRT, and he did seem to believe that the risks were lower than I thought they may be.

The conundrum of starting SRT early versus knowing where to radiate based on imaging came up as well. My sense was that he’d prefer to start SRT while the PSA is less that 0.2 ng/ml, and certainly before it reaches 0.5 ng/ml, assuming that the cancer remained in the prostate bed. Doing so, he said, offers the best chance for success. He suggested that, if we wait until it would be detectable on even the most sensitive imaging (which can’t detect anything reliably until the PSA hits the 1.5-2.0 range), that radiation would do little if any good at that point, as the cancer will likely have spread. Androgen deprivation therapy (ADT) would be the treatment option of choice at that point, and ADT is not curative. It only prolongs life (with substantial side effects impacting quality of life).

The reality check moment for me came with his comment about waiting too long to the point where SRT wouldn’t be effective, and that ADT would be my primary treatment option. That really was an, “Oh, shit,” moment for me. It’s very easy to sit here and speculate how I will act in hypotheticals, but at some point in the future, I am going to have to make real world decisions that affect my longevity and quality of life.

Based on my slow PSA doubling time (around 16 months), if my PSA progresses at its current rate, I’ll have 12 to 28 months to think about this and make my decision, based on whether I want to act if my PSA is around 0.15 or let it go all the way to 0.20. (See my “decision zone” in yellow below—yes, I had to geek out in my spreadsheet once again.) If I want to wait until it’s all the way to 0.5, I’ll have even more time.

Of course, one option is to do nothing. A study in 1999 showed that it took, on average, 8 years after PSA levels began to rise to reach metastasis, and another 5 years after metastasis to death.

The bottom line is that this is becoming increasingly real and that there will be some tough decisions in the next year or two. Of course, those decisions are mine and mine alone, and will be based on a variety of factors, not least of which will be my risk tolerance and any treatment’s impact to quality of life.

On that happy note, I wish you a Merry Christmas and a happy 2018! 🙂

Thanks, too, to those who took time to answer my questions in my salvage radiation therapy survey a few weeks ago. Your insights were quite helpful to me.

PCF Article: New Biomarker Predicts Metastatic Prostate Cancers

On By DanIn Prostate Cancer, ResearchLeave a comment

Here’s an interesting article from the Prostate Cancer Foundation about a potentially exciting development in the ability to determine which prostate cancer tumors are more likely to metastasize.

New Biomarker Predicts Metastatic Prostate Cancers

Month 82 – Reviewing PSA Results with Doctor

On 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.