Day 4,332 – Urologist Visit

Today’s visit with the urologist went about as expected—just a routine review of the salvage radiation therapy, its after-effects, and what’s next.

He was pleased with the drop in my PSA and thought that it may drop even further given how soon after the test was taken after the completion of the radiation. He stressed that we’ll have to establish a nadir in the next year to get a true starting point to determine the effectiveness of the radiation. He was okay with doing another PSA test in November in advance of my radiation oncologist follow-up visit.

Regarding my urinary frequency and urgency, he said I was pretty much where I should be after the radiation, and that it could take up to six months for things to truly calm down. I mentioned that the radiation oncologist put me on tamsulosin / Flowmax, and that it seemed to help a little with my frequency issues.

But I also told him that I stopped taking the tamsulosin over the weekend because my incontinence was up while I was on it and I just wanted to see what it’s like without it. So far, so good.

I did talk about my back and rib pain and once again asked if it could be related to the Eligard. Once again, he thought it was highly unlikely. He also ruled out the possibility that it could be metastases given where my PSA level is at. He did do a bit of a hands-on physical exam to rule out kidney stones (been there, done that, this is not kidney stones). He also made the comment, “Hey, I do plumbing”—I cracked up—and he was glad that I’ll be speaking with my primary care physician about it next week.

He didn’t want to put me on any additional medications for the urinary issues because of side effects that they may have, and we never explicitly spoke about whether to continue the hormone therapy or not. We did, though, talk about this first six-month dose wearing off in the next few months, so it wasn’t as though the topic was completely ignored.

Going forward, I’ll get another PSA test sometime in November; have my follow-up with the radiation oncologist shortly after (yet to be scheduled); and follow-up with urology on 13 December 2022. (I did avoid a 3:30 p.m. appointment like today because traffic sucked driving home.)

Be well.

Header Image: Cathedral Rock and Oak Creek near Sedona, Arizona

    Day 4,327 – PSA Results & Disappointment

    The title of this post may be a tad misleading. My PSA results were okay; my disappointment is with something else.

    PSA Results

    My PSA came back at 0.05 ng/ml. The lab calls anything <0.03 ng/ml “undetectable.”

    I’m not quite sure how to feel about that. It’s back to where it was when if first came detectable seven years ago, but I was kind of hoping the hormone therapy would have knocked it all the way down to undetectable. It’s going to take considerable time for the salvage radiation therapy to do its thing to the PSA.

    The urologist scheduled this PSA test back in May when I received my Eligard injection. The radiation oncologist wanted me to have a PSA test just before our follow-up appointment in late November/early December (that appointment date won’t be determined until late October).

    Disappointment

    For the first time in my ten years of dealing with VA San Diego, I’ve been disappointed with how things are being handled.

    Late in the evening on Saturday, 3 September (our three-day Labor Day holiday weekend with no work on Monday), I emailed my primary care physician about the back pain I was experiencing. His assistant acknowledged my email on Wednesday, 7 September, saying he would pass my email to the doctor for action.

    I never heard from the doctor last week or Monday of this week, but Tuesday, 13 September, I received an email informing me that a prescription had shipped. That caught me off-guard because I wasn’t expecting anything.

    In a nutshell, the doctor had simply gone ahead and prescribed a muscle relaxer and an MRI based on my email alone, without any discussion with me at all. That annoyed me because he wasn’t looking at the larger picture.

    The muscle relaxer has common side effects of:

    • Confusion
    • constipation
    • dizziness, faintness, or lightheadedness when getting up suddenly from a lying or sitting position
    • headache
    • increased need to urinate
    • nausea
    • passing urine more often
    • sweating
    • trouble sleeping
    • unusual tiredness or weakness

    The side effects in bold are those that are most concerning to me, because those are exactly the side effects from the radiation and Eligard that I’m trying to reduce, not add to them.

    Additionally, I’m already on medication to control my blood pressure, and the Flomax (Tamsulosin) also lowers blood pressure. This muscle relaxer also interacts with both to further lower blood pressure.

    Had my doctor and I had a conversation before he issued the prescription, we could have addressed those concerns.

    His nurse called me on Tuesday morning and said someone would call me to set up a video conference call with the doctor, and as of today (Thursday), I’m still waiting for the call.


    Perhaps the real reason that I’m so frustrated is that I feel as though I’m getting to the point in this disease where the treatments are beginning to impact my quality of life more than the disease itself did prior to the treatments. That sucks, and it’s difficult to reconcile.

    Yes, I know it’s very early after the radiation therapy and things will likely improve with more time, and I also know that I’m getting way ahead of myself but, even so, I can’t help but feeling that I am at least one step closer to “the treatment is worse than the disease” phase, and that’s something I’ve wanted to avoid for a long, long time. With luck, these current side effects are temporary, and I’ll have many steps to go before that really kicks in.

    Be well.

    Header Image: Clearing storm at Grand Tetons National Park, Wyoming

    Prostate Cancer Promise DNA Registry Study

    One of my blog’s readers recently shared with me some information about the Prostate Cancer Promise research project (thanks, C.M.!).

    It’s a project that’s seeking to collect DNA samples from patients at any stage of their prostate cancer so that they can identify certain patients with hereditary DNA mutations to track over the course of 15+ years in hopes of being able to help identify more tailored treatment options, as well as being able to let family members know that there is a gene that’s passed from generation to generation that makes them more prone to prostate cancer.

    You will be selected for inclusion in the study if you have one of the hereditary mutations they’re looking for.

    The research project is being conducted by Johns Hopkins University, the University of Washington, and Color, a company that specializes in DNA testing. The study is open only to U.S. citizens, and you can learn more about it either at their website, prostatecancerpromise.org, or their YouTube channel.

    There’s a shorter cursory overview video followed by a more in-depth video below:

    Disclaimer: I have no connection with the study, either as a participant or otherwise, and share this only for informational purposes only.

    Header image: Grand Prismatic Spring, Yellowstone National Park, Wyoming

    Month 142 – Two Weeks After SRT Ended

    After a hectic summer, it’s about time that I get back on my regular posting schedule of at least one post a month on the 11th of each month.

    There’s good news and there’s less good news.

    The good news: On the fatigue front, that’s been slowly but surely abating and my energy levels are improving steadily. I still have my moments, but it’s much better than it used to be. I expect that my energy levels will be back to pre-radiation therapy levels by the end of next week at the rate they’re going. Also decreasing are the number of trips to the toilet during both the day and night (about 2-3 trips each night). Hopefully, there’s still room for improvement there.

    The less good news: The pain in my back, unfortunately, has intensified. Initially, it was a low-grade ache with occasional spikes in pain if I moved in an unexpected way. Now, it’s really become a more constant and prevalent ache, and it takes even less movement to set off a spike in pain. I’m guessing that’s related more to the ADT than anything else, and I’m trying to get some answers from my medical team.

    Barring any hiccups, my plan is to get my blood drawn for my first PSA test during ADT and after SRT on Tuesday, 13 September. It’s probably premature (but that’s what the urologist ordered), and I have no idea what to expect. The ADT has had four and a half months to do something to my PSA, but the SRT has had only two weeks. Anyone care to guess?

    As a refresher, my PSA was 0.36 ng/ml on 18 April 2022; the ADT was administered on 3 May 2022; and SRT ran 7 July – 26 August 2022. I’ll post the results as soon as I have access to them.

    I have my follow-up appointment with the urologist on Tuesday, 20 September, and I just remembered that I need to call the radiation oncologist’s office to get on their schedule for late November or early December.

    Be well!

    Header Image: Oak Creek near Sedona, Arizona

    Upcoming Prostate Cancer Online Seminars

    Save the dates! Two of the heavy-hitter organizations in the world of prostate cancer will be holding online seminars in the weeks ahead. You may want to check them out.

    2022 Prostate Cancer Patient Conference – The Prostate Cancer Research Institute

    The Prostate Cancer Research Institute is a great source of information for those diagnosed with prostate cancer. Each year, they hold a Prostate Cancer Patient Conference, and this year’s conference is scheduled Saturday and Sunday, 10–11 September 2022. You can sign up for free and you may also submit any questions that you have.

    Their agenda still has some gaps to fill as I write this, but I’m sure more will be known by the time the conference begins. All times are in Pacific Daylight Saving Time (Los Angeles), and you can join by Zoom from anywhere.

    You can learn more and register here:

    https://pcri.org/2022-conference

    Prostate Cancer Foundation Webinar Series

    The Prostate Cancer Foundation is launching a new webinar series with its first session being held 4:30 p.m.–5:30 p.m. PDT (Los Angeles), Tuesday, 20 September 2022.

    The topics for the first session are “Prostate 8: Simple Lifestyle Changes That Work” and “Mental Health and Prostate Cancer.”

    You can learn more and register here:

    https://www.pcf.org/pcf-webinar-series/

    Day 4,315 – A Week After SRT Ended

    If you recall my last update, I was all abuzz with energy on my first day after salvage radiation therapy ended. Well, that didn’t last long.

    Sunday and Monday I was pretty much knocked out with fatigue, and Tuesday wasn’t much better. The rest of the week saw slight improvements with each passing day, but you would have still found me taking a cat nap here or there.

    The urinary frequency is still there, meaning I’m still running to the toilet four to six times a night which is annoying. But there has been another change, and I’m not sure if it’s a result of the radiation, the Flomax (Tamsulosin), or a combination of both.

    Post-surgery, pre-radiation, I would get the urge to empty my bladder and I’d have time to make it to the toilet and then consciously start the flow to empty my bladder. Since the radiation, the time between my brain receiving the urge to empty my bladder and the time I need to be at the toilet is much shorter. It also seems that my ability to control the start of the flow is lessened to a degree, meaning it starts flowing on its own. That’s led to one minor accident where I was just a few seconds shy of getting to the toilet.

    I’m not overly concerned about this at the moment, as it’s still early after the radiation ended. Plus, it may be the Flomax that’s contributing to this as well, and the radiation oncologist said it would be acceptable to stop taking it around the end of September if I felt it wasn’t helping me with the urinary frequency. However, if it continues beyond that, I may have to get one of those “Where’s the toilet?” apps for my phone. 🙂

    This morning, I was surprised by blood on the toilet paper after my morning constitutional. I’m pretty sure it’s from irritated hemorrhoids rather than from something deeper inside. It’s something to keep an eye on going forward.


    You may recall that, back in June about five weeks after I received my Eligard injection, I was noticing a dull musculoskeletal ache in the middle of my back. Through the summer, that stayed pretty consistent—just a minor ache in the background not causing any issues. It was tolerable and I didn’t think much of it. In the last few weeks, that’s changed.

    The ache is more intense and a bit more widespread across my back than when it first appeared. Plus, I can have brief shots of acute pain if I move suddenly or twist my body in a weird way (like after unexpectedly bumping into something). It’s more like a muscle spasm response than anything else. But it can and does impact how the way I walk (a little more gingerly) and how I stand up.

    Of course, hormone therapy is known to contribute to musculoskeletal issues, and one of the listed side effects of Flomax is “body aches.” Perhaps they’re additive.

    Of course, my mind also has to go down the path of possible distant metastases to the spine or ribs even though it’s extraordinarily unlikely given where my PSA was at going into SRT (0.36 ng/ml). Still, it’s a conversation that I’m going to have with my urologist in my meeting on 20 September.

    Stay tuned for more to come.

    Be well!

    Image: Salton Sea, California

    Website Refresh

    The eagle-eyed among you will notice that I’ve made a few cosmetic and content changes to this website.

    The cosmetic changes are mainly on the home page to make it a little more visually appealing and to get readers to my most recent blog posts faster.

    When I started this blog, my content focused mostly on my surgery experiences. But now that I’ve hit the prostate cancer trifecta—surgery, salvage radiation, and hormone therapy—I thought it was time to broaden the scope of the site to reflect those experiences. The old menu at the top of the page used to have “Surgery” as one of the options, and it’s now been replaced with “My Treatments” with the sub-menu items of:

    I hope the changes make sense and make visiting the site a little easier.

    For those in the U.S., have a safe Labor Day weekend! (Stay cool—it’s supposed to be around 97° F/ 36° C here this weekend! Ugh!)

    September is Prostate Cancer Awareness Month

    “Oh, prostate cancer isn’t so bad. It’s the easy cancer.”

    Bull💩. Ask anyone who’s been diagnosed with it just how easy it is. It’s not.

    September is the month where we can dispel that notion held by so many by increasing awareness about prostate cancer. Here are some key statistics about prostate cancer in 2022 from the American Cancer Society:

    • Other than skin cancer, prostate cancer is the most common cancer in American men.
    • There will be about 268,490 new cases in 2022.
    • There will be about 34,500 deaths in 2022.
    • About 1 in 8 men will be diagnosed with prostate cancer.

    If you really want to learn more—and I heartily encourage you do to so—a great resource is the book: Dr. Patrick Walsh’s Guide to Surviving Prostate Cancer, Fourth Edition.

    You don’t have to read all 544 pages, but you can cherry pick the sections that are of interest to you and they will give you a good introduction to the topic. Certainly there are tons of other books out there that would be equally valuable.

    If you don’t want to buy a book, you can check out some of these resources for free:

    Please take some time in September to increase your awareness about prostate cancer before you get diagnosed. Understand the risks—family history, race, age, diet—and how they may influence your decision to get screened for prostate cancer.

    Long-term benefit of radiotherapy confirmed in advanced prostate cancer

    This showed up in my inbox and I found it interesting.

    It appears to be focused on initial treatment rather than a salvage setting, and showed that even for those newly diagnosed with advanced prostate cancer that had already spread, there was benefit to radiating the prostate:

    “The initial 2018 findings of this arm of the STAMPEDE trial were slightly surprising. Previous thinking was that if the cancer had spread then the horse had bolted and there was no point in shutting the stable door by treating the original disease site. These long-term results have confirmed that this is not the case, and by treating the original site after the disease has spread, some men with prostate cancer lived longer than those on hormonal therapy alone. This could potentially benefit people with other cancers that have spread to other parts of the body too.”

    Professor Nick James, Professor of Prostate and Bladder Cancer Research at the ICR, and Chief Investigator of the STAMPEDE trial

    Here is the link to the original article:

    Long-term benefit of radiotherapy confirmed in advanced prostate cancer

    Day 4,308 – What a Difference

    What a difference a day makes!

    I don’t know whether it’s the adrenalin rush of having finished my radiation therapy still lingering, or it’s something else, but I’ve had more energy today than I’ve had in several weeks. And I’m not complaining!

    Don’t get me wrong, I’m still firing on about six cylinders at best, but it’s 5 p.m. and I’ve been up since about 7 a.m. and haven’t had the need for a nap or rest period yet today.

    I have to wonder if it was subconscious stress that was doing me in the last few weeks of treatments. I would get overly obsessive about the bladder filling routine, and particularly frustrated if things didn’t go quite to plan—especially when I came up short and had to delay. I felt as though I wasn’t holding up my end of the bargain and that would add stress. (Just an uneducated arm-chair psychologist’s theory.)

    Speaking of bladders, without the 1.5 to 2 liters of water I would be drinking every morning, my trips to the toilet have been far fewer today, and only three trips last night. That’s another positive sign.

    I’m sure there may be setbacks, but let’s hope this trend continues. I’m so ready to get back into a more normal routine. Besides, the dust bunnies 🐇 in my house have turned into dust elephants 🐘 over the last few weeks because of my fatigue, and I need to go on a deep cleaning safari. That, or buy them some peanuts, say they’re my pets, and call it a day. 🤔

    My day has been great. I hope yours has, too!