Tag: Prostate Cancer Blog

Let’s Talk II: The Importance of Support

On By DanIn Emotional Aspects, Prostate Cancer, Social Aspects5 Comments

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

On By DanIn Prostate Cancer, Treatment2 Comments

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

On By DanIn Prostate Cancer5 Comments

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

On By DanIn imaging, Prostate CancerLeave a comment

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

    On By DanIn Prostate Cancer4 Comments

    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?

    On By DanIn Prostate Cancer, Radiation Proctitis, Side Effects14 Comments

    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

    On By DanIn Prostate Cancer6 Comments

    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:

    Mesquite Dunes
    Zabriskie Point
    Furnace Creek Visitor Center
    Badwater Basin
    Artists Pallette
    Artists Pallette
    Artists Pallette
    Death Valley

    Header image: Death Valley National Park, California

    PCF Webinar: When Your PSA is Rising after Treatment

    On By DanIn Prostate CancerLeave a comment

    The Prostate Cancer Foundation is hosting a Zoom webinar at 4:30 p.m., Pacific Standard Time (Los Angeles) on Tuesday, 17 January 2023 to talk about rising PSA after treatment. The webinar is free and open to all, but you must register in advance.

    You can send questions in advance to: webinar@pcf.org.

    If you can’t attend, the webinar will be recorded so you can view it on their website later.

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

    Header Image: Anza-Borrego Desert, California

    Month 145 – Back to Normal

    On By DanIn Prostate Cancer7 Comments

    Finally. Things have pretty much returned to my pre-radiation therapy conditions, and I’ll take that as an early Christmas gift. Let’s hope it continues into the New Year.

    The fatigue is gone, so I’ve had more energy to get out and do things.

    Urinary issues are back to where they were before radiation. I’m much better at making it through the night with typically only one run to the toilet. Some nights I can make it all the way through; and a few nights I may have to make two or three trips, tops. Much better than the four to seven trips during radiation. The frequency during the day has gone way down, as has the urgency (but not as far as I’d like it to go).

    My case of IBH (itchy butt hole), has pretty much—but not entirely—disappeared as well. That’s really been a positive development because having bowel issues is one of my biggest concerns with radiation.

    Lastly, the pain that I was experiencing in my back and ribs has also gone away. I always attributed it to the hormone therapy, but the doctors didn’t agree. It’s been more than seven months since I received my six month dose of Eligard, so I’ll just leave it at that.

    I was supposed to see my urologist on Tuesday, but I came down with a bad head cold or case of the flu (the crud stayed entirely in my head) over the last week. Today (Saturday) is the first day I’m back to about 90% but, on Thursday, I called the urologist’s office anyway to postpone the appointment. I didn’t want to bring any bug into the clinic as an early Christmas gift.

    When I spoke with the nurse, we reviewed my PSA and agreed to retest in March 2023, with a follow-up appointment in late March or April. (The scheduling office is supposed to call me to set up the appointment.)

    Be well and have a great holiday season!

    Header Image: Christmas ornaments for sale at Vienna Christmas market, Vienna, Austria.

    Watch “A Medical Oncologist Compares Surgery and Radiation for Prostate Cancer| Mark Scholz, MD | PCRI” on YouTube

    On By DanIn Prostate Cancer, Radiation Therapy, Side Effects, Surgery9 Comments

    This is an informative video that would benefit the newly diagnosed prostate cancer patient.

    It talks about some of the more recent advances in radiation therapies that really should be considered when making a treatment decision.