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