Day 2,703 – PSA Results

On By DanIn Prostate Cancer, Recurrence13 Comments

The bad news: My PSA continued its upward climb to 0.11 ng/ml. The good news: The rate of increase remained constant (and is still quite slow).

The result is exactly where my spiffy spreadsheet said it would be, so I’m not overly surprised. All that’s left to do now is wait for my appointment with the urologist on 19 April. I’ll have to do my best to let him speak a little before I assault him with my already prepared list of questions.

This result reinforces my belief that it’s time to bring a radiation oncologist into the discussion so I can get his or her perspective on salvage radiation therapy, especially regarding the risks of long-term side effects impacting quality of life and the likelihood of success.

More to come…

PSA 20180405

Day 2,701 – PSA Test Time

On By DanIn Prostate Cancer4 Comments

Yep. Another four months have elapsed and Count Dracula nipped on my arm once again. I should be able to see the results online late Thursday night if historical patterns hold true.

It’s funny. I’m at the point where I’m not at all worked up about the results. In my mind, I’ve already reconciled that they’ll likely come back slightly higher than the last time (0.10 ng/ml). There’s not a damned thing that I can do about it, so why worry? I’ll save that for The Decision.

Of course, I can’t let a PSA post go without a spiffy chart. Remember, the blue data points are my actual historical PSA readings; the red data points are predicted future PSA results.

I don’t want to say that the “Decision Zone” is purely arbitrary, because it’s not. Studies show that earlier salvage radiation is more effective, plus my doctor was suggesting we start thinking more seriously about what’s next when the PSA hits 0.15 ng/ml, give or take a hundredth of a nanogram or two.

I also know that, as the PSA continues to grow, the linear trendline will likely become more of a curve with an increasing slope.

My trendline predicts today’s PSA will come in at 0.115 ng/ml. Stay tuned for the actual number…

PSA with Predictive Trend 20180329

Month 88 – Ready for Next PSA Test

On By DanIn Prostate Cancer, Recurrence11 Comments

It’s not often that I want time to pass more quickly in order to get to my next PSA test, but this time it’s different for some reason. I’ve been really anxious to have 3 April roll around to get this over and done with. Perhaps it’s because I suspect that this test will be the tipping point that finally gets me into real decision-making mode.

Of course, I would prefer not to see my PSA continue its gradual climb, but I suspect that it will. My spiffy little spreadsheet predicts a value of 0.115 ng/ml, up from 0.10 ng/ml. Let’s see how accurate its predictive powers are.

On a related note, I’m fairing much better than I was in my last blog post. How did I manage the emotional turnaround? One word: Disconnect.

I disconnected from my prostate cancer forums and from the good old Google machine in an effort to maintain some semblance of sanity, and it worked. That doesn’t mean that I quit them altogether or didn’t read the occasional article that popped up in a news feed, but I stopped actively researching for now.

Sure, there hasn’t been a day that’s gone by where I haven’t thought about my predicament. That’s only normal. I just don’t dwell on it like I did four weeks ago, and that’s improved my mood and focus considerably. Depending on my PSA results (I should be able to retrieve them online on 5 or 6 April), my mood and ability to focus may go out the window again. My appointment with the urologist is on 19 April, and one point of discussion will be a referral to a radiation oncologist.

Between now and then, I’ll do my best to simply forget about it all. Wish me luck!

Day 2,663 – Research Induced Stress

On By DanIn Emotional Aspects, Prostate Cancer6 Comments

Finally! I’m so glad this past week is over. It was emotionally one of the roughest weeks I’ve had in a long time.

It all started last weekend, which was a three day holiday weekend for those of us here in the U.S. Because I want to be as prepared as possible going into my April appointment with my doctor, I spent two of the three days continuing to research all sorts of things that will help me have a better informed discussion.

I posted a question in an online support group under the heading, “Recurrent Prostate Cancer and Salvage Radiation Therapy.” What followed were some very thoughtful sharing of stories from other patients who had been down that path already. But there was also a very robust discussion between a retired physician, himself a prostate cancer patient, and a long-time prostate cancer patient advocate. Both had some great insights—sometimes conflicting—and both connected me to other resources.

I’ll spare the full-blown details, but what stressed me out last weekend—and lasted well into the week—was the notion that, despite the plethora of information out there about recurrent prostate cancer and treatment options, too much of it is conflicting or inconclusive, and there’s no clear answer for me.

When you know that you’re going to have to make a decision that could impact the length of your life and the quality of your time remaining, not having clear choices is a problem. And once you choose your path, there may be no going back. You may have to live with permanent, life-altering side effects as a result of that choice. The risks may be low, but they’re real.

Cancer, treatment options, side effects, and imaging technologies were pretty much all that I thought about all week long, and it took its toll emotionally and physically. I couldn’t shake the thoughts from my head, no matter how hard I tried. In my role as a volunteer manager, I really needed to be as upbeat and positive as I can. I tried my best last week, but it was exhausting doing so.

I know that much of this stress is self-inflicted. If I’d just step away from Google and stop researching, then this may not be so bad. But that’s not how I’m wired. I will say, however, if my doctor’s appointment was tomorrow, I’d feel pretty comfortable going into it with the knowledge that I’ve amassed so far.

I also know that there are no guarantees no matter which path I choose. I just want to choose wisely.

 

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.

Three Weeks

On By DanIn Emotional Aspects5 Comments

It was an emotionally draining day at work today.

We provide support to patients and their families at a local hospital, and a case worker came to our office looking for activities for a patient in his early twenties and his parents to do over the weekend. Normally, that’s a common request. However, the case worker explained that the patient had only a few weeks left on this planet, and the doctor was urging him and his parents to get out of the hospital and do something—anything—with their remaining time together.

I was crushed.

I’m pretty good about compartmentalizing patient stories and not letting them affect me too much. Not this time. It hit too close to home, at least conceptually. Of course, the young age of the patient added to my reaction as well.

If your doctor told you to go out and make the most of your last three weeks on Earth, what would you do?

Talk about a reality check on your own mortality.

N.E.D. versus Cancer-free

On By DanIn Prostate Cancer15 Comments

My current predicament of a post-surgery increasing PSA has me reflecting on terminology that I see used in discussions about prostate cancer, and some of it has been downright annoying to me. (Perhaps it’s annoying because I’m now 60 and can claim official curmudgeon status.)

But, if I’m being honest, I’m probably more annoyed with myself than with anyone else.

Dry lake bed at Fossil Falls

All of it centers around the use of the phrase cancer-free.

I see the “newbies” coming out of their first post-surgery PSA test jubilantly declaring themselves to be cancer-free with their first undetectable reading, as well as with any subsequent readings. Don’t get me wrong: It is something to celebrate. Hell, I did it. I declared myself to be cancer-free multiple times, well after my surgery.

But now, facing recurrence, every time I see someone declaring themselves cancer-free, I bite my lip and say to myself, “Just wait five or seven or ten years and see if you can still say that, Buck-o.”

“Bitter. Table for one. Bitter.”

Fortunately, my surgeon was very clear in telling me before the surgery what the chances of recurrence would be. He was managing my expectations with a dose of reality. However, one thing he didn’t introduce me to was the phrase, no evidence of disease.

No Evidence of Disease (NED) should be much more widely used to keep us all grounded in the possibility that, no matter how successful our first-line treatment appears to have been, there’s always that possibility of recurrence. “Cured” and “cancer-free” both give a false sense of security that none of us can count on.

So to those coming out of your prostatectomies, please declare that there’s no evidence of disease on your undetectable PSAs, and hope that you can continue to do that for the rest of your life. In doing so—in managing those expectations—you may be better prepared for that fateful day 54 months after your surgery when there’s now, in fact, evidence of disease. You’ll still say, “Crap!” (or some other string of colorful expletives that would make a sailor blush), but making the leap from NED to recurrence may be just a tad easier than from cancer-free to recurrence.

You can tell from my last few posts that I’m getting back into my writing for therapy mode (or, as a friend calls it, “verbal vomiting”). It is therapeutic for me to have an outlet for some of these thoughts; I can spew them and, once they’re out, put them behind me.

Thanks for putting up with them!

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.

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

On By DanIn Prostate Cancer, Research6 Comments

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

On By DanIn Emotional Aspects, Prostate Cancer, Recurrence, Side Effects6 Comments

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.