Tag: mens-health

Month 179 – Urologist Discussion

On By DanIn Hormone Therapy, imaging, Prostate Cancer, Radiation Therapy1 Comment

Well, that went about as I expected.

In a nutshell, we’re punting the ball another three months down the road.

The doctor commented on the continuing rise in my PSA and said after consulting with the doctor who saw me last time, said that he wanted to recheck my PSA in six months and “wait a year” for another PSMA PET scan. I should have asked for clarification on that, but I think he was referring to waiting a year after my last PSMA PET scan in March 2025 and not a year from today.

I wasn’t entirely comfortable with waiting another six months, so we agreed to test PSA again in December (three months after my September test) and go from there.

We also talked about spot radiation if anything pops up on the scan. He seemed a bit reluctant for that to be an option, and went straight to starting hormone therapy. It’s as though he was making the transition from curative options to management options, and, to be perfectly honest, I believe I made that transition in my own mind once the salvage radiation failed. That doesn’t mean that I wouldn’t try zapping a lesion or two if they popped up on the scan depending on location (no more zapping to the pelvis and risking further bowel complications).

We did talk about my experience with hormone therapy during the salvage radiation, and the timing of starting it this time around. In that discussion, he brought up the topic of bringing in a medical oncologist at some point depending on the scan results and my PSA test results.

We talked at length about my urinary frequency and some options for that. He suggested some pelvic floor therapy might be beneficial, so I said I’d be willing to give that a try.

Overall, I’m okay with where we’re at and the planned course of action for now. I’ll go for my PSA test in early December, and if there’s another significant jump, I’ll press for the PSMA PET scan to be done sooner rather than later.

My next scheduled urologist appointment is 30 December 2025.

Be well!

Header image: Sunset, Imperial Beach, California

Day 5,256 – Doctor Visit

On By DanIn imaging, Prostate Cancer7 Comments

I had my post-PSMA PET scan visit with the urologist today, and I wasn’t really sure what to expect going into it.

The doctor (same as last time) shared the scan results saying that they’re something I should celebrate. I mentioned, though, that I have had three scans and were inconclusive despite the rising PSA numbers. He was quick to reply by saying that the scan not showing evidence of prostate cancer or metastasis was conclusive.

I understand where he’s coming from, but until we know where the cancer is, I’m going to have a difficult time accepting that perspective.

I did ask whether there was some sort of test that can determine if my cancer doesn’t express PSMA, and he said that there wasn’t. Something in my pea-sized brain tells me I need to double check him on that.

I also asked if there could be another explanation beyond the cancer that would explain my rising PSA. He ruled out the possibility of some residual prostate tissue being left behind after the surgery as being the cause based on my PSA kinetics over time.

In terms of what’s next, we’re kicking the can six months down the road for another PSA test and follow-up. I was a bit surprised that he wanted to wait six months, and suggested doing the test in three or four months. He was a bit insistent on the six month window. He felt comfortable with my current situation—the slight increase in my last PSA test from the previous one and my PSA doubling time—that waiting six months wouldn’t be a problem. He also argued that having a longer period between tests would better reflect what’s going on.

As we wrapped up, he reminded me that the scan results were good news, and I know that he’s right in that regard. I’ll work on changing my own perspective going forward (even though those little cancer bugs are still doing their thing inside me.)

My follow-up appointment is on 30 September 2025.

That’s it for today. Be well!

Header image: Cherry Blossoms, Japanese Friendship Garden, San Diego, California

Day 5,237 – PSA and PSMA PET Scan Results

On By DanIn imaging, Prostate Cancer8 Comments

I’m so over this.

Click to enlarge

On the whole, the news is good. My PSA just barely bumped up from 0.94 ng/mL in January to 0.95 ng/mL in March and, taking the last five readings, that increased my PSA doubling time from 7.7 months to 10 months.

The PSMA PET scan revealed “no evidence of prostate cancer or metastatic disease.”

So, if the news is good, why am I “so over this?”

I was really hoping that this third PSMA PET scan would bring some clarity as to where the cancer was located so we could know how to proceed—even if it meant revealing metastatic disease. It’s frustrating because we know the cancer is somewhere and because we know the PSA almost tripled between 19 January 2024 and 16 January 2025, but we don’t have enough information to do anything about it. It’s just more waiting in limbo.

Of course, having had three PSMA PET scans all turn up negative makes me question if I’m in that “lucky” category of ten percent of patients whose prostate cancer doesn’t express PSMA, making the scans useless for me. It’s something that I’ll definitely discuss with the doctor at my next appointment on 1 April 2025. I vaguely recall that there’s some sort of genomic test that may be able to assess if I really do fall into that ten percent. I’ll have to do some research on that.

Maybe, too, I’ve placed too much faith in the scan’s ability to detect anything at my PSA level. But with a PSA level hovering around 1.0 ng/mL I thought we would have a decent chance of detecting something (chart below).

Detection Rate on a Patient Basis Stratified by PSA and Region Tr indicates prostate bed only; N1, pelvic nodes only; M1, extrapelvic only. Proportion of patients with 68Ga-PSMA-11 PET positive findings were stratified by PSA range and region of disease in accordance with PROMISE. https://pubmed.ncbi.nlm.nih.gov/30920593/

Needless to say, I’m truly glad that my PSA didn’t rocket even higher and that my scan didn’t light up like Times Square. Having definitive answers, though, would be the icing on the cake.

As far as the PSMA PET scan itself, it was pretty easy and took two hours to go through the entire process. I was instructed to drink 500 ml of water starting 2 hours before the scheduled scan time, and that was the only preparation needed.

I arrived at the hospital at 8 a.m. and was brought back to a radiation-proofed exam room where the technician started and IV at around 8:15 a.m. The 68Ga tracer was ready for injection around 8:40 a.m.

Around 9:30 a.m., the technician brought me back to the scanner where I got positioned on the bed and we began the scan which took 45 minutes. The scanner was very quiet (I could have dozed off) and large enough that it wasn’t claustrophobic. I was out of there by 10:15 a.m. and on my way home. Piece of cake.

On a related note, this was the longest it’s ever taken me to get the PSA test results posted online (hence the delay in this post). I actually called the clinic to get them over the phone because they still weren’t available online today (Thursday). The nurse I spoke with was very helpful and said, “We’re facing staffing issues and, well…” stopping herself in mid-sentence, probably remembering that the call was being recorded and not wanting to make a statement about the current environment for VA employees at the moment. I fear that this may be a precursor of things to come.

Be well!

Day 5,214 – Doctor Visit

On By DanIn Hormone Therapy, imaging, Prostate Cancer, Radiation Therapy1 Comment

You may have overachieved when your doctor asks, “Are you a urologist?”

I had a good meeting with the real urologist this morning, and it appears that he actually read the questions I sent to him in advance. That made the discussion easier.

First on my question list was whether a PSMA PET scan was warranted. He agreed that it was, and we’re going to try to get that scheduled soon. He thought that, with my PSA at 0.94 ng/mL, there would be a better chance of actually finding something this time. The only concern is that the VA has required a bone scan ahead of the PSMA PET scan in the past, and he’s going to see if we can skip that. It may take several days for the schedulers to call me.

We did discuss the possibility of further radiation if a lesion is found away from the pelvis. I mentioned that I had had blood in my stools and mild radiation proctitis discovered (and addressed) during my recent colonoscopy. He was not keen on further radiation to the pelvis under those circumstances. Neither am I.

My next question was about the timing of beginning androgen deprivation therapy (ADT). He was pretty squishy on the timing, not knowing exactly where we’re at. I mentioned that, a year ago, the urologist told me that we’d start when my PSA hit 2.0 ng/mL, but the medical oncologist suggested holding off until metastasis. He generally agreed with the concept of starting it later so that the cancer doesn’t become resistant to it prematurely, with one caveat.

He seemed to give more weight to my PSA doubling time than did other doctors, and that’s when he asked me if I was a urologist. I had presented him my graph showing my PSA progression, and it showed my PSA doubling time. “How did you know how to calculate it?” I told him that I used the Memorial Sloan-Kettering PSA doubling time calculator. To him, my PSADT of 9 months was creeping into “concerning” territory, and might make him a little more inclined to start ADT earlier.

I asked him, “At what point do we call this metastatic disease?” and, “When should we get a medical oncologist (MO) involved?” To the first, he said that all we know is prostate cancer is somewhere in my body, but wouldn’t go so far as to call it metastatic yet. To the second, he was open to brining in a MO if the results of the PSMA PET scan warranted it.

We agreed to the following plan:

  • Get a PSMA PET scan and meet again in six weeks to review the results.
  • Get an updated PSA test before the six week review.
  • Let the results of the scan determine if we get the MO involved at that point.

I have the six-week follow-up appointment scheduled for 1 April 2025. My concern is getting the PSMA PET scan scheduled and completed before then. If I need a bone scan in advance of it, that may complicate or delay the PSMA PET scheduling further. If push comes to shove, I already had an appointment scheduled with urology on 8 May 2025, so that’s not that much of a delay if we can’t get everything scheduled before 1 April. 2025.

It was a productive meeting from my perspective, without any surprises.

More to come as we get things scheduled.

Header image: Cuyamaca Rancho State Park, California

Day 5,183 – PSA Results

On By DanIn Prostate Cancer9 Comments

I jumped the gun a couple of days and went for my PSA lab work Thursday morning on 16 January. (The three month date since the last PSA test would have been 22 January.)

As a refresher, my PSA in October was 0.69 ng/mL; it’s now 0.94 ng/mL.

I’m going to have to get a little aggressive with the medical team in terms of appointment scheduling. In October, we agreed to retest in three months and go over the results, but the schedulers didn’t have any open appointments until May 2025. Needless to say, that’s too far out so I’ll have to cajole my way into a canceled appointment or ask for a virtual / telehealth appointment sooner.

With my PSA as high as it is, I suspect that another PSMA PET scan would finally reveal some useful information that we can use to plan treatment options.

Header image: Devil’s Golf Course, Death Valley National Park, California

Day 5,118 – Urologist Visit

On By DanIn Hormone Therapy, Prostate Cancer, Radiation Proctitis9 Comments

I met with the urologist this afternoon to go over my most recent PSA test results and the plan going forward. In a nutshell, we agreed to remain in limbo for another three months and retest the PSA in January and consider a PSMA PET scan if warranted at that point. (She was a bit skeptical that the PSMA PET scan would be conclusive even at my current PSA of 0.69 ng/mL.)

The urologist thought it was a little premature to start talking about androgen deprivation therapy, but recognized that that’s the next likely step down this path. I mentioned that, when I met with the urologist and medical oncologist in February, one suggested ADT at metastases and the other suggested starting at a PSA of 2.0 ng/mL. She said she could understand both positions.

Bottom line is that I continue to be in this sort of “no man’s land” of prostate cancer. We know it’s there; we just don’t know where, and we don’t want to pull the trigger on ADT prematurely. So more waiting.

One other thing that we discussed was radiation proctitis.

Graphic Biology Ahead

I’ve been sitting on this little tidbit for a while now, but I’ve been noticing blood in my stools. It initially appeared as spots a little smaller than a dime coin (~ 1 cm) but, over time, it has subsided to a small streak or a hint of blood. You know me: I had to create a spreadsheet to track it, and it’s been occurring in about ten percent of my bowel movements. That makes me feel better that it isn’t happening each and every time—that might indicate a larger problem if it were happening every time.

Fortunately, I haven’t had the diarrhea or mucus discharge that can come with more severe cases of radiation proctitis.

I mentioned this to my primary care physician during my appointment on 4 November, too. Both he and the urologist recommended a colonoscopy to check out what’s really going on. That joyful experience is scheduled for Friday, 22 November. Yippee!

I did come across this continuing education paper that gives a good overview if you’re really interested in learning more:

Radiation Proctitis

So the journey continues. Stay tuned for the next installment.

Header image: San Diego skyline and Mission Bay from Kate Sessions Memorial Park

Day 5,097 – PSA Results

On By DanIn Prostate CancerLeave a comment

The trend formula on my Excel spreadsheet predicted that my PSA would come in at 0.69 ng/mL, and my PSA came in at exactly 0.69 ng/mL. Not too shabby.

To be honest, that’s a little better than I expected it to be, which I’m not complaining about. At least it hasn’t taken off like a Halloween bat out of Hell.

The one question that we’ll have to answer at the appointment with the urologist on 14 November is whether that level is high enough to warrant another PSMA PET scan to see if we can detect any hotspots that may be amenable to radiation. At my current PSA level, there’s about a 70% chance of detecting anything, but if we wait until the PSA is closer to 1.0 ng/mL, there’s a 90% chance of detection. Maybe we wait another three months and go from there? Or, maybe we go ahead with the scan now and I have cool images to include with my Christmas cards.

I’m guessing that that was a small enough increase—keeping my PSA at a low level—that we won’t have to worry about starting androgen deprivation therapy (ADT) quite yet. Of course, I could be wrong.

When I use my last five PSA tests over the last year to calculate PSA doubling time, the PSADT is 7.7 months.

Stay tuned.

PSA Chart since salvage radiation therapy
PSA Chart since diagnosis

Header image: Anza-Borrego Desert State Park, California

Day 5,095 – Let the Waiting Begin

On By DanIn Prostate Cancer2 Comments

I went for my PSA test this morning, so now the waiting begins for the results to be posted online. I suspect that I’ll be able to access them late Thursday night or Friday.

I also had about four or five other tubes of blood drawn (I can’t watch 🤢) for my annual physical with my primary care physician on 4 November. While there, I also got my high-dose flu shot for old geezers and the updated COVID vaccine. All of that turned me into veritable pin cushion this morning.

As much flak as the VA Healthcare system receives, I have to admit that I’m always impressed with my local clinic. No appointment was needed for either the lab work or the vaccines, and it took just 17 minutes from the time I checked in until my lab work was completed, and another seven minutes to get the vaccines. I was in and out in 24 minutes. I challenge civilian clinics to match that.

More to come soon.

Month 166 – Expanding My Audience

On By DanIn Prostate Cancer12 Comments

Between this prostate cancer blog and my travel blog, you’ve probably figured out that I enjoy the process of writing and sharing my experiences. While I’m no Pulitzer-prize winning author, a few people close to me have encouraged me to do something more formal—to “write a book.” I always thanked them for their compliment, and then gently set aside the notion of ever getting something published.

Until June.

Yes, I’ve been sitting on a little secret for almost three months. The editor of Cancer Health magazine came across my little ol’ blog and approached me to write an essay for their Voices column for their Fall 2024 issue of their magazine.

My initial reaction was one of surprise and intrigue and—if I’m being honest—a bit of anxiety. In the initial contact email, there wasn’t a ton of information about expectations, so I went to the website and looked at some of the archived Voices columns to see what might be involved. “Oh. I could do that.”

I went back to the editor and said, “I’m in.”

Prior to this, I had a vague understanding of the publishing process and knew that there would be some discussion about topics, length of the article, and deadlines. It would soon be followed by submitting drafts and digesting feedback. Also included in the exchange was a six-page contract covering usage rights and compensation.

I’m someone who’s better known for my spreadsheets than my writing, so when the editor read the final draft and said, “Wow… this one reads really great….Honestly, there’s very little I’d change in this…” I have to admit my chest puffed out a with a bit of pride.

After the magazine went live this week (hardcopy and online), I can now add “published author” to my résumé.

Is it a book? Nope. But we all start with baby steps, and a 500-word essay is my first step into the publishing world. Is this the beginning of something larger? Who knows. I enjoyed the whole process, and the editor did encourage future submissions. In the meantime, I’ll stick to self-publishing on my little ol’ blogs for now.

You may read the article here:

How to Navigate Conflicting Cancer Treatment Advice

Header Image: August Moonrise over San Diego, California skyline

Day 5,000

On By DanIn Prostate Cancer9 Comments

You know the nerd in me had to observe this milestone of being 5,000 days into this adventure of living with prostate cancer. 😂

In those 5,000 days, I have:

  • Learned more about prostate cancer and its treatment than I ever thought I would.
  • Had my emotions run from outright fear at diagnosis to elation with each undetectable PSA test after surgery back to fear as my PSA returned.
  • Adapted to my new normal with the side effects from surgery and radiation.
  • Shared my story in ways I never expected.
  • Learned who stepped up to provide support and who couldn’t do so for whatever reason.
  • Formed meaningful connections with fellow patients and caregivers from around the globe, and have been inspired by their stories.

That last point is important to me. Those readers who regularly engage with me, share your stories, and who offer your support have been a bright spot in this entire adventure, and I cannot thank you enough. Sadly, some of the men that I connected with over the years have succumbed to this insidious disease, and I miss our interactions.

Thank you again for putting up with my rantings for 5,000 days. Here’s hoping for 5,000 more.

—Dan

In case you’re wondering, 5,000 days equals:

  • 13 years, 8 months, and 9 days
  • 164 months and 9 days
  • 714 weeks and 2 days
  • 120,000 hours
  • 7,200,000 minutes
  • 432,000,000 seconds

Sleep better tonight knowing that. 🤓😂