Let’s Talk II: The Importance of Support

It happened again. For the second time since starting this blog, a prostate cancer support group reached out and asked me to be a featured guest at one of their support group meetings. The first was five years ago in Riverside, California, and the second happened last night via Zoom. I have to admit that I was both surprised and humbled by each request.

The facilitator for the North Vancouver (British Columbia, Canada) Prostate Cancer Support group, Jeff, contacted me to spend an hour or so having a conversations about my blog and my personal experience with prostate cancer. (The group is affiliated with the Prostate Cancer Foundation Canada and they offer a number of support groups across the country. You can learn more HERE.)

The event was billed as “A Conversation with Dan,” and around a dozen fellow prostate cancer patients attended. Jeff, the facilitator asked a series of questions to get the conversation going, and by the end of the hour and forty-five minutes, most everyone was engaged in the conversation sharing their own stories and insights or asking questions. It was (from my perspective) an informative and enjoyable evening.

Thank you, Jeff, for contacting me and suggesting the idea, and to everyone else who made me feel welcome through your participation.


That leads me to the general topic of support.

When I was first diagnosed, I relied on the support of my family, friends, and a few other prostate cancer patients that I was introduced to simply by me being open about my diagnosis. Their support was invaluable to me.

As time went on, I did seek out an in-person support group here in San Diego. I did find one, but it was very small with only a few members and it was more of a social group that liked to gossip than a place to learn about prostate cancer. I thought I could offer insights on my own experience, but the members were so far ahead of me in their own journey that they had already “been there, done that.” Needless to say, I didn’t find much value and stepped away from the group.

Instead of in-person groups, I turned to support and insights from two sources.

The first and most valuable to me has been you, the readers of this blog. Even though I’ve never met most of you in person, I appreciate those of you who have shared your own stories and feedback. Thank you.

The second source is from the website Malecare.org and the prostate cancer forums there. There are some very knowledgeable people in those forums who are willing to share a ton of information and experiences. (There’s a gentleman who goes by the screen name Tall_Allen who is a fountain of knowledge, and has two online sources of information: Prostate Cancer News and Prostate Cancer Infolink.)

I know that I’ll have much to learn in my new post-ADT/SRT world, so I spent some time today searching the major prostate cancer nonprofits for prostate cancer support groups in the San Diego area, and was surprised by the lack of in-person groups:

But there was one that’s in the San Diego area that looks promising. It’s called the Informed Prostate Cancer Support Group. The website has a lot of information with videos of their past meetings in case you couldn’t attend. Their meetings are held in an auditorium with quite a few members, which may stymie personal sharing and conversations.

That’s the one thing I liked about last night’s group. It was small enough that those conversations could be had and, even after just an hour or so, I could tell there was a bond between the members. I don’t know that you would get that in a larger group setting.

I’ll continue to do more searching but perhaps my new mission in life may be to work with an organization to form a “Goldilocks” group here in San Diego—not too small like the first one I joined, and not too large so there’s no personal interaction. Hmm… I’ll have to think about that. Between keeping this blog going and running a support group, all prostate cancer, all the time could get to be a bit much. But if it does help others… 🤔 Stay tuned.

The main take-away from all of this is that it’s okay to seek support, no matter where you are in you diagnosis and treatment. Whether it’s from family, friends, in-person support groups, or online forums (including silly blogs), the support and education you’ll receive by reaching out will ease the burden.

Again, thanks to Jeff and all the men at the North Vancouver Prostate Support Group for inviting me to participate. I truly enjoyed the experience.

Header Image: Sunset at Cape Flattery, Washington State

Day 4,366 – Road Trip Reflections

About two weeks after I completed my salvage radiation therapy, the concessionaire that runs lodging in some of our national parks was having a flash sale, and I was eager to book something to pamper myself after the summer of radiation. I was still beat up from the therapy, but I went ahead and booked the room anyway, thinking that it’s easier to cancel the reservation if I wasn’t feeling up to it than to make one later on.

I came close to cancelling the reservation, but didn’t.

Immediately after my last blog post on 11 October, my side effects took an unexpected turn when my bowels started acting up.

Normally, I’m a pretty regular guy with one bowel movement a day, usually in the morning. But for those four or five days before my trip, I was having three to five movements a day in conjunction with an irritated anus (itchy and burning sensations). Fortunately, things calmed down just before the trip and I went anyway.

Loss of bowel control has been one of my biggest fears with doing the radiation so, needless to say, this was quite alarming for me. I never actually lost control during any of these episodes—it was just increased frequency which was workable but annoying. It’s definitely something I’ll discuss with the radiation oncologist when we meet on 10 November.

Going into the trip, I knew that I wasn’t in the same physical condition as I was before the treatment, but I was a bit surprised by how much had changed.

I hiked the Zumwalt Meadow trail in May 2021 and did just fine. It’s a relatively flat trail at about 5,000 feet / 1,500 meters elevation with a somewhat tricky part through a rock fall area. I hiked the trail again on this trip, but found it was much slower going for me. As I got to the rock fall area, I could feel the burn in my legs as I was climbing up and down the rock steps placed on the trail. I guess that’s the hormone therapy kicking in, weakening my leg muscles.

Zumwalt Meadows Trail from Google Maps

Each day in the park, I found myself heading back to the room in the lodge for an afternoon siesta. Perhaps it was the altitude, the cool morning autumn air, and the hiking that did me in (or a combination of all), but I found that my stamina was diminished and needed the little nap.

Of course, that whole experience affected me mentally and emotionally as well. Initially, I was frustrated that I couldn’t do some of the simple things that I did before—or at least couldn’t do them as easily as I had done them before. But those feelings didn’t last too long, thankfully.

By the end of the trip, I turned more to acceptance than frustration.

I accepted the fact that, for this trip, my body had been beaten up pretty badly and I really did nothing to prepare for it between the time the side effects were subsiding and the start of the trip. After meeting a gregarious couple who were in their 80s navigating the rock fall area very cautiously, I reminded myself that what matters most is that I’m out here doing this—just as they were—and it mattered less how fast or agile I was. We just have to adapt to our new limitations.

Even so, it can be difficult to accept the fact that my body may no longer be able to cash the checks my mind is wanting to write.

But I also recognize that I need to take ownership in restoring or preserving my fitness level by doing more physical activity. There are things I would like to see and do yet, and if this is my new “best,” then some of those may now be in question, and that would be disappointing to say the least.

In the end, it was good that I went and learned what I did. It helps frame my mind for what I need to do going forward, and what may or may not be possible for future trips.

Be well!


My original plan was for three nights in Kings Canyon and then return home, but at the last minute, I decided to add another day and drove through Yosemite National Park and over Tioga Pass to see the autumn colors in the Eastern Sierra Nevada mountains near Bishop, California. You can check out my posts on my other blog here:

Kings Canyon and Cedar Grove Lodge

Tioga Pass to Eastern Sierra

Enjoy!

Header Image: Kings River, Kings Canyon National Park, California

Day 4,178 – PSA Results & Stuff

I went for my pre-physical appointment blood work yesterday and was surprised to have the results back today. It used to take the VA two or three days to post them online.

In any case, my PSA climbed once again from 0.33 ng/mL on 11 March to 0.36 ng/mL yesterday, 18 April. PSA doubling time dropped from 14.4 months to 12.7 months, indicating a continued acceleration which makes sense.

I did schedule my mapping with the radiation oncologist and, in my discussions with the urologist about the PSA test, we agreed to reschedule my 10 May appointment into September after the salvage radiation therapy was completed. My schedule now looks like:

  • 21 April – Appointment with PCP for a lube, oil, and filter change.
  • 3 May – Eligard injection.
  • 16 June – Body mapping with radiation oncologist.
  • 13 September – Urology appointment

We didn’t set an actual start date for the zapping, but I suspect it would be a week or two after the mapping and it would last through July and into August.


My emotions in the last week or so have run the gamut.

I can’t seem to get it out of my head that, once I start down this path, my life as I currently know it will be gone. Much of that is probably unfounded and a gross exaggeration, as the rational part of me knows that the chances for long-term, quality of life-impacting side effects are minimal. Yet the emotional side of my pea-sized brain is dwelling on that and I can’t seem to shake it.

Of course, that leads me to anger over this insidious disease and the impact it has on your life. Aside from the aches and pains associated with my vintage, high mileage body, it’s difficult to reconcile that within me there’s the army of cells wanting to kill me even though I’m feeling generally well. The fact that you have to take drastic action to fight off those cells—again—makes the situation even more aggravating.

Part of this, too, stems from the timing. I retired at the end of October, and there are things I want to do and places I want to go. The uncertainty of not knowing how my body will react to the hormone therapy and salvage radiation makes me hesitant to plunk down $10,000+ for a bucket-list trip to New Zealand now that its borders are beginning to slowly open. Maybe by October (New Zealand’s spring), I’ll know whether I can endure a fourteen-hour flight.

I know that, like the countless men before me, I’ll get past this and adapt accordingly whatever the outcome. What choice do we have? In the interim, I’ll continue to play as my body under treatment allows me to play.

Venting session over. Thanks for listening, and be well.

Day 3,270 – Doctor Visit

Tuesday’s meeting with the urologist was a bit anticlimactic. In a nutshell, we’re returning to the four-month test cycle and we’ll see what the next test will bring in late January or early February before we do anything.

The doctor had no explanation for the swings in my PSA level from 0.13 to 0.10 to 0.16 and reminded me that there could be a margin of error on the readings. (But he couldn’t quantify what that +/- error might be using the assay that they’re using.) He mentioned that riding a bike, other mild “trauma” to the pelvic region, or sexual activity before a PSA test could affect the results. That’s something that I already knew, so I make it a point to avoid any of that for at least a week before the blood sample is drawn to avoid introducing that variable to the picture.

He also reminded me that the historical definition of biochemical recurrence has been 0.20 ng/ml and suggested that it was premature to start thinking about salvage radiation therapy. Even so, he acknowledged that my PSA is definitely trending upward and worthy of continued monitoring so that it “doesn’t get away from us.” He suggested it would be fine to retest in six months; I opted for four.

One of the reasons that he was so comfortable with a longer test cycle and continued monitoring was my lengthy PSA doubling time. He also talked about the possibility that this could be residual benign prostate tissue left behind after the surgery that could be causing the PSA to increase again.

I filled him in on the Ga-68 PSMA PET/CT scan trial going on at UCLA and the option to shell out $2,800 to have the scan done outside of the trial. We talked a little about the successful detection rates at my PSA levels, to which he replied, “You know more about it than I do.”

We also spoke briefly about the potential long-term side effects of salvage radiation therapy, as well as the success rates of having no evidence of disease five years later. Nothing new was learned there.

On the whole, I’m generally on board with this approach—for now. But I will say that, mentally, I prepared myself for the meeting to go in a different direction, so I’m still processing that. If I’m perfectly honest, I’m a teeny bit less confident that waiting another four months is appropriate.

It’s as though I’m taking another step on a tight rope with each successive PSA test. The further out I go, the more the rope sways and it’s just a question of how long I can maintain my balance. Can I make it all the way across, or will I lose my balance and tumble into the abyss of metastasis?

Sure, I can opt to use my emergency safety harness—salvage radiation therapy—at any time, but that comes with costs potentially impacting quality of life: increased incontinence, loss of sexual function, scarring from radiation, etc. And—guess what?—at the end of it, I’ll be back on another tightrope taking another step every 3-6 months with new tests to monitor the effectiveness of salvage radiation. (And there’s a 30%-70% chance that I’ll fall off that tight rope into the abyss, too, depending on which study you look at.)

The trick is knowing when to decide whether you should keep walking on the original tight rope or that it’s time to jump into the safety harness. That decision is complicated by your coaches on the ground yelling conflicting things at you. Coach Radiation Oncologist is yelling, “Use the harness!” and Coach Urologist is yelling, “Keep walking!” Your own mind, filled with reliable information you gathered from Dr. Google, is adding to the confusion. It can be maddening to try and sort through it all and make the best decision possible.

That thought led to the last point of discussion with the urologist on Tuesday. He acknowledged that the field of prostate cancer research is a very dynamic one, and that there’s often conflicting guidance as new therapies are being tested and new discoveries are made. He also reinforced that prostate cancer is an insidious disease in how it behaves and how challenging it can be to treat it.

Prostate cancer is not an “easy cancer.” Far from it.

Day 2,770 – In a Weird Place

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Every weekday, I pass by here on the way to or from my office, getting a not-so-subtle reminder, “Hey! You need to make a decision, yahoo!” A few weeks ago, that nagging voice carried a bit of weight. Today, not so much.

In fact, I’ve taken the ostrich approach over the last few weeks—burying my head deep in the sand, ignoring anything related to The Decision. I haven’t actively researched diddly-squat and that’s been liberating. I know that’s not a productive approach to the situation at hand, but I’m okay with that for now.

The best explanation that I have for being in this weird state of indifference and inaction is a simple one: I’m mentally exhausted from constantly thinking about this. I just needed to shut it down for a while.

I know I’ll have to get back in the groove someday (after the 1 August PSA test?), but for now, I’m enjoying the denial and the break.

Day 2,745 – Conversation with the R.O.

When I was in 7th grade, I had to give a presentation on my science project, an erupting volcano, and I was so anxious about the presentation that I became physically ill and erupted myself. Not pretty. While I didn’t get physically ill today, the feeling was almost the same as I waited to see the radiation oncologist. It’s silly, I know. But it was very real.

In a nutshell, his recommendation was to start salvage radiation therapy.

The R.O. is a Navy captain medical officer, and we spent nearly forty-five minutes going over my case (which I truly appreciated). He took control of the conversation from the outset, explaining the options and consequences of each. I could tell that he had given this little presentation once or twice before. Once we got through that, we did have a real conversation. Some key points:

  • He disagreed with the notion that the increasing PSA is from residual benign prostate tissue left behind.
  • He was confident that the cancer would be in the prostate bed based on my numbers and statistics.
  • He talked about the differing definitions of biochemical recurrence, saying that the American Urological Association (AUA) and American Society for Radiation Oncology (ASTRO) use the 0.2 ng/ml threshold, but the National Comprehensive Cancer Network (NCCN) defines recurrence as a detectable PSA with two consecutive increases. My case meets the NCCN definition.
  • Continued surveillance is a viable option for me given my numbers and PSA doubling time.
  • We talked about the short and long-term side effects of radiation therapy: urinary control, sexual function and bowel control. His estimate the probability of long-term quality of life-impacting side effects in any of the three areas to be in the “single digits.”
  • He reminded me of selection bias when talking to other patients or bloggers about their side effect experiences. Yes, their experiences are very real, but for each person in an online forum, there are many others outside the forum who are leading productive, acceptable lives.
  • If we were to do salvage radiation therapy now with my PSA under 0.2 ng/ml, he put the probability of me having no evidence of disease five years from now at seventy-five percent. If we wait until my PSA is above 0.2 ng/ml, that number decreases.
  • Newer scanning technologies weren’t likely to pick up anything at my current PSA levels, yet he was open to the idea of them if it gave me peace of mind.
  • With my numbers, there is no reason to radiate the pelvic lymph nodes or use androgen deprivation therapy (ADT).
  • He was open to waiting until the August PSA results to see what they revealed before making a decision.

It was a good conversation, but I’m sorry to say that I don’t know that there was a lot of new information for me there that would tip the scale either way. The doctor wasn’t pushy in one direction or the other, saying that it was equally reasonable for me to continue surveillance or for me to begin salvage radiation therapy. The choice is mine. About the only thing he was adamant about was not starting ADT, and I’m in perfect agreement with him on that.

I did learn one really interesting thing, however. The reason that the VA Medical Center referred me to Naval Medical Center San Diego has to do with geology. Apparently VA Medical Center San Diego (La Jolla) was built sufficiently close to a geological fault line that they couldn’t build a radiation “bunker” that would be safe in the event of an earthquake.

What’s next for me? A ton of thinking, reflecting, and reevaluating.

Enough for now. I’m spent.

Month 89 – Moving Forward

I wasn’t expecting that.

You would have thought that, with me confidently predicting that my latest PSA number would climb, I would have been relatively okay after getting the results Thursday night. Not so. Friday, I plunged into a deep funk, and my ability to concentrate at work dropped to a 2 or 3 on a scale of 10. Not good.

To combat the funk Saturday, I distracted myself by going down a relatively mindless rabbit hole on YouTube. (I know, not my proudest moment, but it worked.) One of the videos that I watch was from a young landscape photographer, Dave Morrow, that was entitled, How Quitting Social Media Changed My Life & Photography. That piqued my interest, so I spent 11 minutes watching it (video below).

As a bit of background, I was really opposed to joining Facebook and other social media years ago. I successfully resisted joining despite pressure from family and friends. In fact, this very blog arose from my disdain for Facebook yet wanting to be able to keep everyone informed about my situation.

But when I started working at the museum, we had a Facebook page for our volunteers and, as volunteer coordinator, I thought it was important to understand how to use it. I set up my own Facebook account as a playground to learn. That was four years ago, and I have to admit that I’ve been sucked into the Facebook vortex over time, spending more hours on it than I should.

The key takeaway for me in Dave’s video was when he said that he took all of the time and energy that he put into social media and devoted it to the things he enjoys and is passionate about instead. That was one of those “Ah-ha!” moments that we all knew about but had to relearn.

Regular readers of this blog will know that one of my favorite things to do is throw my camera in my car and drive. That’s precisely what I did on Sunday and, like the YouTube marathon, it, too, chased away my funk as I took a one and a half mile midday hike in the Anza-Borrego Desert State Park. (Perhaps not the wisest idea in the 90° F / 32° C heat.)

Tonight, rather than heading directly home from the office and hopping on my tablet to get caught up on all the social media postings, I opted to take an hour-long stroll up and down the beach, trousers rolled up to the knees, barefoot, ankle-deep in the incoming surf. It was delightful. (Note to self: Throw a pair of shorts in the trunk so I don’t look so geeky in trousers on the beach. Just a thought!)

I haven’t been on social media since Saturday—it’s been quite refreshing—and I’ve followed Dave’s advice and used that time for more enjoyable endeavors. Yes, it’s been a bit of a challenge not to look on Facebook, but I’ve resisted so far. Will I completely delete my accounts? Time will tell. There has been some advantage in using social media to connect with old friends, to remain connected with those half a continent away, and to even connect with fellow prostate cancer patients.

Dave’s insights were more from a developing and growing his business perspective, but obviously, they could be applied in a personal setting as well. Disconnecting from social media allows me the time to move forward doing things that I enjoy—walking on the beach, hiking in the desert, or snapping a photo or two. Each of those help combat the emotional funk.

Who would have thought that a YouTube video about managing a photography business would have reminded us that we need to eliminate those things that don’t add value or bring joy to our lives, and focus on those things that do?

I wasn’t expecting that.

Day 2,663 – Research Induced Stress

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

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.

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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

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.