NEJM: Quality of Life and Satisfaction with Outcome among Prostate-Cancer Survivors

As you could tell from my last post, I’ve really been focusing on the impact of any salvage treatment options on the quality of life (QOL), both during treatment and longer-term.

I stumbled across this 2008 study, Quality of Life and Satisfaction with Outcome among Prostate Cancer Survivors, published in the New England Journal of Medicine, but it shows the QOL impact after first-line treatment only.

Tables 2 and 4 in the paper are precisely how this data-driven, numbers geek would love to see the information on salvage therapies presented. Obviously, the categories measured may have to be modified and expanded to include the known side effects of the salvage treatments.

If Dr. Martin G. Sanda, et al., stumble across this post and care to build upon their previous excellent work, please feel free to do so! In the interim, I’ll keep searching.

 

Month 86 – Struggling

First things, first. I’m struggling to thaw out after spending five days in frigid (-4° F / -20° C) Chicago with my sister and her family this past weekend. You may well be asking, “Who in their right mind flies from San Diego to Chicago in January?!?” Sadly, that would be me.

I contemplated returning for Christmas but had sticker shock on the cost of the airfare, so I opted to return for my birthday last week at a quarter of the cost. This birthday was one of those annoying milestone birthdays—the 30th anniversary of my 30th birthday—and that definitely warranted an appropriate celebration. Of course, anyone in our situation knows that any birthday you’re around to celebrate is a good birthday.

But what I’m really struggling with is this whole notion of recurrence and what to do about it.

I’d like to think that throughout my life I’ve been a generally optimistic, my glass is half full kind of guy, but one with a healthy dose of reality attached to that optimism. Hope for the best, plan for the worst, and recognize the inevitable. I understand the value of a positive attitude, however, I’m increasingly finding that I have a diminishing tolerance of false optimism. “You got this. You’re going to kick cancer’s ass!” Really? Are you sure about that? How do you know? And at what cost? The $109,989.11 invested in my prostatectomy (the real number, mostly paid by the insurance company) doesn’t seem to be paying off.

The costs that I’m talking about aren’t just financial, either. There are emotional and physical costs as well.

With salvage radiation therapy (SRT)—the only option that still has a curative potential—there’s the risk of increased incontinence, loss of sexual function, bowel control issues, and fatigue during the treatments. Chatting with other patients in online forums or through their own blogs, some of these issues don’t manifest themselves until well after the SRT treatments end. And all of this for a 30%-55% chance of having no evidence of disease five or six years after SRT ends.

With androgen deprivation therapy (ADT) (hormone therapy), there’s the loss of libido and sexual function, mood swings impacting relationships, hot flashes, loss of muscle mass, increased risk of osteoporosis, and significant depression. Of course, ADT is not curative, so you get to suffer through those substantial side effects for a longer period because ADT prolongs your life.

It’s easy to get excited when you see your PSA plummet after starting ADT, as it impacts those androgen-dependent cancer cells. But guess what? There are also androgen-independent cells floating around that the ADT won’t impact at all, and it’s those cells that will start driving the PSA back up again and that will ultimately kick your ass.

Being a data-driven numbers guy, I’m also struggling with how to quantify these potential impacts on quality of life.

When you’re in an online or even in-person support group, you have to remember that there’s a self-selection bias taking place that will skew your perspective to the bad. Think about it. Almost everyone who’s in the group is there because they’re at some stage of dealing with this disease and having issues that need answers. Who you don’t see are those patients who are outside of the group who have success stories in dealing with their cancer and have simply stepped away from that chapter of their life.

For me, I want to know the ratio of who’s in the group versus those who are outside the group. Is it like an iceberg with 10% of the patients in the group being the visible ones and 90% of the success stories out of sight? Is it 50-50? 30-70? 60-40? Knowing the answer to that helps me understand the risks better.

I’ve stumbled across a few studies that talk about the likelihood of potential side effects from SRT but I would like to see more. The risks do seem to be relatively low from what I recall and from what my doctor is telling me, but forgive me if I’m skittish about accepting even low risk given where I’m at. (My surgeon forewarned me that there was a 20% chance the cancer would return; I guess I’m just not feeling all that lucky at the moment given my track record.)

Similarly, with ADT, it seems that most everyone suffers some form of side effects, but each person is impacted differently. Again, the numbers guy in me would love to see some sort of study that says, “While on ADT, my quality of life has been reduced by __% in each of the following areas…” I’ve heard patients say that they are “just a shell of the person I was once” or that the ADT has them remaining in bed 20 hours a day. Of course, there are others who seem to have only mild side effects with negligible impact on their daily lives. What’s the distribution like between those two extremes? Knowing the answer to that would be very helpful in decision making.

Given all that, I’m struggling with one more thing, and it may scare or even offend some readers.

“You’ve got plenty to live for. You need to fight. You need to be strong. You need to be a warrior and defeat this disease,”—all things that I’ve heard along the way. There’s this pervasive attitude that other patients, family members, and the healthcare system have that we must do everything we can to go on living for as long as we can at all costs.

Why?

Please don’t panic and think that I’m ready to check out tomorrow. I’m not. There is plenty to live for, and that is precisely why I ask the question.

Is being a shell of yourself and staying in bed 20 hours a day really living, or is it merely existing? Would you rather live a more full, active life for 8-10 years, or merely exist for 20 years?

What about the impact on your significant other and those closest to you? Yes, they’ll be by your side every step of the way. Do you think they would rather remember your last years as being present and engaged for 8-10 years, or withdrawn, moody, depressed, and barely capable of functioning for 20 years?

What about the financial impact on your family? Would you rather take a few bucket list trips with your significant other and family in your remaining 8-10 years, or would you rather take out a second mortgage on your home to pay for the drugs and latest technology tests that will keep you existing for 20 years, placing a financial burden on those who survive you?

Before you send me all sorts of hate mail, I know those are extreme examples and that there are many shades of gray between the extremes, but, in the absence of studies or data that mitigate those examples, that’s what’s rattling around inside my analytical, pragmatic mind at the moment—right or wrong. It’s just the way I’m wired. The good news is that I have time to find those studies and data that hopefully will give me the information I feel I need to make decisions going forward.

It takes strength to go through the radiation, ADT, and chemotherapy if that’s the path that you choose. It also, however, takes strength to say, “No. I’d rather live without those debilitating side effects for as long as I can, even if it means it will be for a shorter period of time.”

Thirteen years ago, my mother was diagnosed with mesothelioma, the incurable cancer associated with asbestos exposure. She was given the option to participate in some clinical trials that may have extended her life three to twelve months, but she refused. “I don’t want to be someone’s pin cushion when the end result will be the same.” She wanted to retain control over her life for as long as she could, and she did so to the best of her ability. Sadly, though, it was only a matter of months before she died, but she went out on her own terms.

That’s how you kick cancer’s ass.

I would like to think that I’ll be able to do the same.


Just a note. Because I knew I would be traveling, I wrote this post over a week ago. While I was in Chicago, a fellow prostate cancer patient, Mark Bradford, replied to a question in an online support group, and it’s complementary to the topic of this post. The question posed was, “At what point do you get tired of fighting?” He replied:

I dislike framing this as a fight. You have a disease, and you seek treatment for [it] till you decide to stop. Being in treatment is not fighting and stopping treatment is not giving up. I was inoperable from the beginning and stage 4 soon after. My outcome was certain, so my priority was quality of life over quantity. I did HT [hormone therapy] until it stopped working, and cannabis oil throughout. I refused chemo as it would not cure me or significantly extend my life. Don’t let anyone say you’re giving up if you decide it’s time to stop treatment. I could not afford alternatives, so my choices were limited. If you have the means, do whatever seems right to you. But accepting reality is not giving up.

I don’t think that I could agree more with Mark’s comment about framing this as a fight and about being in treatment or stopping treatment.

Mark is nearing the end of his life, and you can read his very poignant blog, God’s 2 by 4: Mark Bradford’s Cancer Journal.

Another patient, Dan Cole, answered simply and succinctly: “Live the life you choose to live. That is winning the fight.”

I know I’m getting way ahead of where I should be given my current status but, if nothing else, this disease certainly causes you to prematurely contemplate your own mortality.

Life After Radical Prostatectomy: 84 Months Later

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

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.

Month 85–Learning about Salvage Radiation Therapy

Now that I’m officially halfway to the widely accepted 0.2 ng/ml definition of biochemical recurrence, it’s time to dig deeper into the most likely next step for me: Salvage Radiation Therapy (SRT).

I’ve already done considerable research on reputable websites and through reading studies or books, but the one area that I would like more information about is from those who have actually gone through SRT after a prostatectomy. Having those first-hand insights can be invaluable.

If you have had a radical prostatectomy and subsequent salvage radiation therapy because your PSA was on the rise just as mine is, please take a few minutes to answer my questions about your experience in my:

Salvage Radiation Therapy Questionnaire

It’s only 9 questions long and should take just a few minutes to complete. I’ll be truly grateful for your input.


If I’m being perfectly honest, I have real reservations and concerns about starting SRT. Like most everything else in dealing with prostate cancer, it seems to be yet another crap shoot with questionable outcomes at potentially significant cost to quality of life.

Based on my research, SRT doesn’t seem to have all that high of a success rate, with 30%–50% of patients being progression-free at 5 or 6 years after receiving SRT. That means that 50%–70% of the patients have the cancer remain and, as an added bonus, those patients now have increased incontinence and erectile dysfunction issues, as well as potential bowel control issues.

Before we start zapping my body with radiation, I want to know with a high degree of certainty that we’re zapping the actual location of the cancer. That poses two problems.

First, studies show that the earlier you start SRT, the higher the success rate. In fact, I would not be surprised to find a few survey respondents who have started SRT at a PSA level lower than my 0.10 ng/ml. The assumption is that any remaining cancer will be in the prostate bed or pelvic region, and that’s where they focus the radiation. But how do you know that it hasn’t spread beyond the pelvis at those PSA levels? You don’t. (That 30%-50% success rate tells me it isn’t the best assumption to be making.)

That brings us to the second problem. Current imaging techniques won’t locate the cancer until the PSA is at much higher levels. Even a choline-PET scan won’t consistently detect tumors until PSA reaches 2.0 ng/ml (it may be able to detect down to 1.0 ng/ml, but the number of false readings goes up considerably).

Do I risk all those nasty life-long side effects on the assumption that the cancer is still in the prostate bed, or do I wait until imaging technology can accurately detect the cancer’s location?

I’ll have a thorough discussion with my doctor next week when we review my latest PSA results, so it will be interesting to get that input. I’ll keep you posted.

Thanks again if you’ve taken time to complete my questionnaire.

Day 2,583–PSA Results

PSA 20171204My December PSA results came back just as predicted by my spreadsheet’s silly little trendline: 0.10 ng/ml.

The bad news is that it keeps climbing; the good news is that the doubling rate appears to be about 16 months. My follow-up appointment with my doctor is 19 December 2017 where we’ll probably agree to continue to monitor every 3-4 months for the time being.

Interestingly, from an emotional perspective, this has been pretty much a non-event for me. I’ve resigned myself to the fact that the likely explanation for the increasing PSA is the return of the cancer, so at this point, it’s only confirmation of something that I already suspect/accept/know.

That’s it for now. I’m sure I’ll have more thoughts in this month’s regular post on 11 December.

Day 2,581 – PSA Test Time

Yes, it’s that time again—time for my next PSA test. I had the blood drawn this morning, and I should be able to get the results online in three days.

My last reading was 0.09 ng/ml and, if you put a trend line over the last four readings, this reading should come out somewhere around 0.105 ng/ml. Let’s see how accurate its predictive powers are.

Stay tuned.

PSA Tracker 20170802

Seven Years

It’s been seven years since my prostate cancer diagnosis, and the fact that I’m still alive and kickin’ seven years later with relatively minor side effects from the surgery makes me realize how good that I’ve got it when I compare my situation to other prostate cancer patients. I say that not to boast or gloat; rather to acknowledge how blessed I am.

With an ever-so-slowly-rising PSA in my recent past, I know that the path ahead may become increasingly rocky and that my situation can change for the worse in the not too distant future. Or it may not.

As the navigator of the USS Brewton, I planned ahead and selected the best route for our ship to meet its mission. Now, in my current predicament, I wanted to take some time and reflect on what’s next for me and how I want to navigate my way through it all. (And I’m not talking treatment options; I’m talking life.)

Life is filled with competing interests and obligations and, if this silly cancer shortens the number of my days remaining, I want to make sure that those interests and obligations are prioritized. I don’t think that I’ve squandered the last seven years by any stretch of the imagination, but I’m not sure that I’ve gotten the most out of them, either.

The best way for me to evaluate my priorities and map out a course was to escape my daily routine and go on a trip where I could be alone with my thoughts. So I do what I always do when I need to clear my head of the daily noise: I get in my car and drive.

My road trip last month through the Sierra Nevada mountains was transformative for me.

Sunrise on Mount Whitney

Once I started climbing over the boulders of the Alabama Hills in the pre-dawn darkness in hopes of capturing the sun illuminating the face of Mount Whitney, my photography became my singular focus of the trip (excuse the pun). It was refreshing to concentrate on something other than cancer. Not only was it refreshing, it was fun!

There was also something rejuvenating about being surrounded by nature, even on those brisk 24° F / -4° C Lake Tahoe mornings. You couldn’t help but feel alive.

Through all of it, I never directly tackled my self-imposed homework assignment. I never sat down and wrote a list of priorities (as I’m usually wont to do). In the end, I didn’t need to. Just the act of being, of playing, and of focusing on something other than cancer did that for me in a way that was far more powerful than had I sat down and created a spreadsheet. And that is what has been transformational for me.

As I enter my eighth year of this adventure, rather than worrying about the latest study on defining biochemical recurrence or what the results of my next PSA test in the first week of December will be, I’m going to worry about how, where, and when I can push myself to be better at my photography, all while enjoying the great natural world around us (except, of course, those rocky shoals us navigators avoided at all costs).

There are some other professional and personal goals that I want to tackle as well, but I’m going to keep those to myself for now.

It also means that I may be stepping away from some things that, while still meaningful to me, just don’t carry the weight that they used to. There just aren’t enough hours in a week to do it all.

That trip reminded me that there is life outside of cancer. I needed that reminder. Badly.

Sierra Sunrises, Solitude, and Sorrow

If anyone’s interested, here’s the write-up on my recent trip through the Alabama Hills, Manzanar National Historic Site, Ancient Bristlecone Pine Forest, Bodie State Historic Park, Lake Tahoe, Reno, and western Nevada, including an emotional stop in Las Vegas. —Dan

Travelin' Dan

Sometimes the vacation you had imagined in your head doesn’t develop as you thought it would, and that’s not always a bad thing.

This was meant to be a trip where the primary mission was photographing some of our natural wonders. Inspired by landscape photographer, Thomas Heaton out of the U.K., I wanted to slow down, look for compositions, set up the tripod, and take the shot. I had done a little homework, determining sunrise, sunset, and moonrise times throughout the trip at the locations I wanted to visit, and I was keen on being in Lake Tahoe for the full moon.

Of course, the secondary mission for this trip was to see something new—to color in another part of my travel map that was empty. In this case, I was looking to experience western Nevada and bits of Arizona and California on US 95.

My initial concept for this…

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Month 83 – Forgetting about Cancer

I’ve really got nothing to report this month other than the fact that I just spent the last 9 days on the road on a wonderful vacation through the eastern Sierra Nevada mountains, Lake Tahoe, and western Nevada.

The purpose of the trip was to get out and do some serious photography, and focusing on that allowed me to forget about PSA tests, cancer, and all the other crap that goes with it for a while. It was refreshing.

I usually publish a full-blown write-up of my trip on my other blog, Travelin’ Dan, but my creative juices must still be on vacation, because I’m struggling to put that post together at the moment. I also need to sort through 768 photos and process the best for the blog.

In the meantime, here’s a sneak peak at some of what you may see later when I finish my trip overview. Enjoy!