Month 150 – PSA Results

Good news. My PSA is moving in the right direction, with this week’s results at 0.11 ng/mL, down from 0.13 ng/mL in March.

It’s not a significant shift and one data point doesn’t establish a trend, but I’ll take it.

Remember, at the beginning of this, my radiation oncologist said it would be a good twelve to eighteen months at a minimum before we could see the real effects of the radiation on the cancer. The radiation sessions ended eight and a half months ago, so it’s still early.

I’m also guessing that the six-month dose of Eligard has completely worn off by now (or nearly so), as it’s been just over a year since I received it on 3 May 2022.

You can still find my full PSA graph on my home page.

Also on the good news front is that my urinary and bowel functions are pretty much back to where they were pre-radiation. Another win.

I meet with the urologist on 30 May, and I need to get an appointment with the radiation oncologist scheduled to go over the results.

Oh. And on a useless trivia note, this is my 500th post on this blog. (You’ll sleep better tonight knowing that.)

Be well!

Header Image: Eastern Sierra Nevada Mountains near Lone Pine, California (You can check out my impromptu trip to Lone Pine last weekend HERE.)

The Language of Cancer

One of my favorite National Public Radio (NPR) programs to listen to is called A Way With Words. It’s a cheeky look at language in all of its glorious variations. It helped explain regional language differences that I encountered when I left my home in suburban Chicago and attended university 300 miles to the west in central Iowa.

In Chicago, we shoveled snow; ate breakfast, lunch, and dinner; and put our groceries in bags. In Iowa, we scooped snow; ate breakfast, dinner, and supper; and put our groceries in sacks. Go figure.

When you introduce “cancer” to your vocabulary, it comes with a host of other technical words, acronyms, and lingo that you have to learn. It also comes with descriptors and well-intentioned words of encouragement that may or may not be quite the right thing to say.

Before I go any further, a quick disclaimer: If you use these words or phrases to your benefit, more power to you. But not everyone reacts the same way, and that’s okay. It would be interesting to hear your perspectives.

“Survivor”

Not long after my surgery and my first few undetectable PSA test results, I described myself as a “cancer survivor.” But a conversation with one of my readers made me rethink its use, as he was quite reluctant to use the term in his own case.

If you look at the definition of the word “survivor,” you come across slight variations of this:

A person who continues to live, especially despite being nearly killed or experiencing great danger or difficulty.

https://www.oxfordlearnersdictionaries.com/us/definition/american_english/survivor

That definition implies that the danger or difficulty is behind you—”I survived the sinking of the Titanic“—but when you’re dealing with cancer, I don’t know that it is ever truly behind you, even if you’re in remission. Interestingly, the National Cancer Institute specifically has its own definition:

One who remains alive and continues to function during and after overcoming a serious hardship or life-threatening disease. In cancer, a person is considered to be a survivor from the time of diagnosis until the end of life.

https://www.cancer.gov/publications/dictionaries/cancer-terms/def/survivor

I believe that, if you were to tell someone you just met, “I’m a cancer survivor,” they would conclude that the cancer and its treatment are behind you. It has a sense of finality to it when, in fact, for many of us, the treatments continue. For that reason, I shy away from calling myself a cancer survivor now even though, by the NCI’s definition, I would be a “survivor.” Maybe I’m just weird.

“You Got This”

When you first share your diagnosis with those in your circle, many very well-intentioned folks may offer a peppy, “Oh, man. Don’t worry. You got this!” without knowing what “this” is, or remotely understanding what’s involved with dealing with “this.”

That can be understandable, especially if you’ve never had someone in your life go through a cancer diagnosis and you don’t have the first-hand knowledge of what the experience is like. You think that you’re being supportive, but “You got this!” is often delivered at a time when the patient is scared shitless and doesn’t yet have enough knowledge to know if he really can “get this.”

When I shared that I was about to go through radiation therapy a year ago, “You got this!” was a common supportive response. I know that each was a sincere wish for all to go well, but my initial reaction was one of frustration driven more by my anxiety of what was to come.

I wanted to shout, “Don’t you think I would have ‘got this’ twelve years ago when I had my prostate plucked out?!? No. What I’ve got is recurrent cancer. That’s what I’ve got.” It definitely was my own anxiety talking, but I held my tongue and just thanked everyone for their support knowing that they really did care.

My recommendation to those in a support role to a cancer patient is not to come out of the gate like a cheerleader at a pep rally: “You got this! My uncle beat prostate cancer and you will too.” Each patient is unique and you have zero idea if that will be true. (Of course, there’s the, “My uncle died from prostate cancer,” too, but that’s an entirely different discussion.)

Instead, offer an ear and listen to the cancer patient. Ask broad questions, understanding that all of this is new to the patient and he may not be able to answer. Acknowledge the diagnosis or next treatment phase and ask how you can support them. They may not be able to answer that, either, so offer suggestions—I’ll watch your dog, go to the grocery store, take you to your first appointment, etc.—and just let him know you’ll be there when needed. Having my friend as moral support at my first radiation session was enormously helpful and comforting.

Terms of War

We often hear terms of war used to describe cancer patients: They’re “warriors fighting a battle.” Personally, I’m not a fan of “warrior,” “fighter,” or “battle.” I’m simply a patient experiencing and managing cancer, nothing more.

Not long after former President Jimmy Carter announced that he was entering hospice, this article was released, and it spoke about this very topic.

Why ‘lost their battle’ with serious illness is the wrong thing to say

Using words like “fighter” or “warrior” may lead the patient (and perhaps some family members) to feel that he’s failed if the cancer progresses. There can be a self-imposed and external pressure to “fight harder,” when the reality of the situation may be much different. His mind may simply not have the power to overcome what’s happening inside his body.

Instead, one Johns Hopkins professor suggests using the word “advocate” instead. I like that.

Being an advocate doesn’t mean passivity. It doesn’t mean hopelessness. It does, however, mean that we can gain some power over the cancer and our quality of life. We can say, “Nope. I’m advocating for my own destiny,” and that includes saying how and when we’ll be treated, as well as deciding when enough is enough.

“Journey”

Okay. You’re going to love the irony in this one, reading this on a site called Dan’s Journey through Prostate Cancer.

“Journey” sounds so pleasant, like we’re embarking on a Tanzanian safari, a trip across Europe on the Orient Express, walking along the Great Wall of China, or on one of my North American road trips. Cancer is none of those things.

If I were to start this blog over, I would likely name it Dan’s Prostate Cancer Experience. That would be more reflective of what’s really happening. Oh well.

Summary

This wasn’t meant to discount the words that you use to get through this prostate cancer experience. It was meant as a fun(?) and hopefully thought-provoking look at the language of cancer. Words have meaning, and sometimes those words have different meanings to different people.

What words or phrases have stuck out in your own cancer experience? Those that you embrace, and those that annoy the crap out of you? Please consider sharing them in the comments below.

It’s time for lunch/dinner, so I’ll close for now.

Be well!

Header Image: San Diego Bay and Skyline from Cabrillo National Monument

Month 149 – Slow Flow?

I may be stepping into new post-radiation territory for me—emphasis on may. That, or it could all be in my head.

Over the two or so weeks, I’ve noticed that when I go to empty my bladder, there are times where my urine flow seems to be a tiny bit slower and weaker that it was not too long ago. The engineer in me really wants a quantitative way to measure it to confirm whether or not my mind is playing tricks on me, but that isn’t going to happen.

Fortunately, there is no pain when urinating or blood in the urine, nor are there any issues with intermittent flow.

I’m hoping that this isn’t an early sign of radiation-induced strictures that are starting to form that have to be dealt with at some point in the future.

On the plus side of things, my frequency of needing to run to the bathroom is down considerably, especially at night. I can make it through most nights without having to run to the toilet more than once, if at all. But that means that my bladder is full in the morning, and the flow coming out on that initial morning pee isn’t as “fast and furious” as it was a few weeks ago.


I’m still waiting to hear from the radiation oncologist’s office concerning my six-month follow-up appointment which, should happen in May. I do have an appointment with the VA urologist on 30 May, and I may try to get another PSA test done before then.

Other than that, not much else to report this month. Be well!

Header Image: Spring in the Neighborhood

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

Study finds prostate cancer treatment can wait for most men

I saw this on the national news last night and thought the results of the study were interesting:

The study directly compared the three approaches — surgery to remove tumors, radiation treatment and monitoring. Most prostate cancer grows slowly, so it takes many years to look at the disease’s outcomes.


“There was no difference in prostate cancer mortality at 15 years between the groups,” Loeb said. And prostate cancer survival for all three groups was high — 97% regardless of treatment approach. “That’s also very good news.”

That’s going to make a whole lot of guys go, “Huh?!?” The science may say it’s okay to do nothing, but once you hear “cancer,” it will be extraordinarily difficult to not want to do something more proactive. It will be interesting to see if guys stop or cut back on getting screened, and we wind up with more men being diagnosed with advanced prostate cancer instead of localized prostate cancer because they delayed screening.

https://www.nbcnews.com/news/us-news/study-finds-prostate-cancer-treatment-can-wait-men-rcna74512

Here is the New England Journal of Medicine article (I didn’t sign up for full access):

https://www.nejm.org/doi/full/10.1056/NEJMoa2214122

Month 148 – PSA Results

I went for my next PSA test this week and I truly didn’t know what to expect going into it. My PSA jumped from 0.05 ng/mL on 1 November 2022 to 0.13 ng/mL on 7 March 2023. I’m concerned but not freaked out.

My best guess is that the androgen deprivation therapy effects are wearing off faster than the salvage radiation effects are kicking in. (At least that’s my hope, but what do I know?)

It’s been ten months since I received the six-month dose of Eligard on 3 May 2022, so it makes sense that it would be less impactful on my PSA over time and that my PSA would creep up again. I’m a bit surprised by how big of a jump it was, though.

Of course, I’ll talk to both the urologist and radiation oncologist about this, but that won’t be until May as things stand right now. (I did email the results to the radiation oncologist, and he replied, “I would not read too much into a single PSA value”).

Our follow-up testing and appointment scheduling between the VA urologist and the UCSD radiation oncologist is getting a bit out of whack, and I need to try to rein that in. It’s difficult to do the four-month follow-ups suggested by the doctor when appointment availability is six to eight months out. (I’ll spare you the details.)

My appointment with the VA is on 30 May, and I don’t have a firm date for the UCSD six month follow-up yet, but that should be in May as well.


In other news, my bowels seem to be calming down, with me returning to bowel movements once or twice a day. The intestinal gas still happens, but that comes and goes, too. Urinary frequency is pretty much back to where it was before the radiation, and I can usually make it through the night now with zero to one trips to the toilet.

Be well!

Header Image: Sedona, Arizona

PCF Webinar: PSMA PET Imaging: Doctor and Patient Perspectives

The Prostate Cancer Foundation is having a Zoom webinar on 14 March 2023 04:30 PM Pacific Daylight Time (Los Angeles) to review PSMA PET imaging from both the doctor and patient perspectives. You can register by clicking the image below or by clicking HERE.

(Daylight Saving Time in the U.S. begins on Sunday, 12 March 2023.)

    Watch “Does Sugar Feed Prostate Cancer? Does Fatty/Adipose Tissue Attract Cancer? | Mark Moyad, MD, MPH” on YouTube

    In my 12+ years of dealing with prostate cancer, I’ve heard a lot of theories about what causes it and what actions we can take to control or slow its growth—some of them legitimate, some at the very end of the weirdness spectrum.

    I found this 7-minute video from 2019 to be pretty interesting considering how many times I’ve heard that sugar is related to the cancer growth. According to this, sugar in and of itself has little to no impact on prostate cancer growth (but may have an impact on other cancers). I’m guessing that a quick Dr. Google search would reveal other videos or studies with differing viewpoints, so take this with a grain of salt. (See what I did there???)

    We all have to recognize that there are going to be differing opinions. We just have to make decisions based on what’s best for us and our own situations.

    Month 147 – Delayed Reactions?

    It’s hard to believe that it’s been over five months since I wrapped up my salvage radiation therapy (SRT) and concurrent androgen deprivation therapy (ADT). For the most part, things have been good, but two things have popped up along the way. One insignificant, the other has me wondering what the future will hold.

    Where Oh Where is My Body Hair?

    The first seems to be a delayed reaction of the ADT/hormone therapy which was administered nine months ago on 3 May 2022. It seems the loss of testosterone is taking a toll on my body hair.

    Maybe this has been going on for a while and I just now noticed it (I mean, really, who monitors the status of their body hair on a regular basis???).

    I wasn’t a very hirsute guy to begin with, but I noticed in the shower the other day that what little chest hair that I did have has been diminished by at least half to two-thirds. A little oddball patch of hair on my back right below my collar line is now pretty much gone, and let’s just say that there’s less hair in a few places further south.

    Is it a big deal? Of course not. Just superficial, but I find it interesting that it appears to be happening so long after the Eligard injection. Maybe that’s normal for ADT. I’m not going to worry about it (unless my beard starts falling out, then I may be a little concerned).

    GI Changes?

    The second issue has to deal with what I’ll probably imprecisely call gastrointestinal changes or perhaps a prelude to the thing I dreaded most: radiation proctitis. Whether they’re related to the radiation therapy or not, I don’t know yet. I thought radiation proctitis took longer to take root, but I could be wrong.

    I haven’t changed my diet much compared to pre- and post-radiation, so I don’t think it’s diet causing these issues. (Although I did buy a bag of pistachios recently and, with hindsight, they may have aggravated them.)

    Pre-radiation, I was a pretty regular guy when it came to bowel movements. Once in the morning and I was good until the next morning. Now, five months after radiation, I’m noticing that I’m having two to four bowel movements a day about a third to half of the days. Some of those extra bowel movements come on with some urgency. So far, it’s not been an issue or caused an accident, but it does raise some concern as to what it may be like a year or two from now if it is, in fact, related to the radiation therapy.

    The other GI issue that has popped up is that I seem to have more intestinal gas than I used to. (And, no, it’s not related to San Diego’s wonderful Mexican cuisine!)

    The thing that concerns me about being so gassy is the fact that, when I pass gas, it comes out with less effort than it used to. In fact, sometimes, it almost just slips out and I have to wonder if it’s going to be only gas that comes out, and nothing extra (fart vs. shart). My concern is about rectal control over the long term if I’m experiencing something like this now. Again, something to monitor (you know me—I’ve started a tracking spreadsheet) and discuss with the doctor.

    What’s Next?

    My last PSA test was on 1 November, and we agreed to check it again in March, so I’ll figure out a date to hit the lab for the bloodwork. You may recall that post-radiation PSAs taken in September and November both came in at 0.05 ng/mL, so we’ll it will be interesting to see if it goes down, stays the same, or goes up again. Any wagers???

    I should be meeting with the radiation oncologist again in May for my six-month follow-up from the last meeting.

    That’s a Wrap

    That’s about it for this month. You may recall that last month, I spent my birthday in Death Valley National Park. After visiting there, I headed over to Zion National Park for a short visit. You can check it out by clicking HERE.

    Header Image: Canyon in Zion National Park along the Virgin River

    Month 146 – Time Marches On

    This month I’ve managed to make it to my 65th birthday and am fully enrolled in Medicare. Woo-hoo!

    Normally, I don’t let age get to me too much, but turning 65 hit me a little harder than most milestone birthdays. I  guess it’s the idea of being a true “senior citizen now.

    To celebrate, I splurged on a prime rib, baked potato, asparagus, and a glass of Pinot Noir, not at a local San Diego restaurant, but at the Last Kind Words Saloon in Death Valley National Park. Yep. Silly me did another road trip. January is definitely one of the better months to visit Death Valley.

    This trip showed that I’m not as spry as I was before this summer’s radiation and hormone therapies. I found myself walking at a slower pace and with a bit less stamina/endurance. However, I’ll argue that walking 2.5 miles / 2.4 km through loose sand dunes will take a toll regardless of your fitness level. My legs were sore for days.

    I know that I need to be more aware of this and become more active to at least maintain, if not improve my fitness level. (Yes, not consuming prime rib and baked potatoes will help, too. To my credit, I can’t recall the last time I had either.)

    My next PSA test will be in March, so we’ll see if there’s any movement one way or the other off of my November 2022 reading of 0.05 ng/mL.

    That’s it for this update. Be well in 2023!

    Here are a few scenes from Death Valley:

    Header image: Death Valley National Park, California