Author: Dan

Day 5,522 – Urologist Appointment

On By DanIn Hormone Therapy, imaging, Prostate Cancer, Treatment9 Comments

Late last week, I received a text message asking if I would like to move my urologist appointment from 30 December to today, 23 December, and I agreed.

My appointment was at 3:15 p.m., and I arrived around 2:45 p.m. As I’m walking up to the check-in kiosk, my cell phone rings, and it was the urology department wanting to confirm that I’d be there. That’s the first time that that’s happened, and I told the nurse that I was checking in as we spoke. “Great! We’ll come out and get you.” Apparently, they were antsy to get out of there early on the day before Christmas Eve. So was I.

The head of the department was the one who saw me this time, and we had a really good conversation. Some of the key takeaways:

  • She was concerned about the increase in my PSA but not panicked, even initially suggesting we just continue to monitor it.
  • We talked at length about doing another round of imaging to see if we can determine the location of the cancer.
  • We agreed to do another PSMA PET scan, and we negotiated doing one in March 2026. (She thought that Nuclear Medicine might push back on doing one sooner, i.e., within a year, as the last one I had was in March 2025.) She also mentioned the possibilities of other imaging should the PSMA PET scan come up with no evidence of cancer/metastasis for the fourth time.
  • We talked about the timing of starting androgen deprivation (hormone) therapy. She wouldn’t start it until there was evidence of metastasis, but was open to starting it earlier if I really wanted to do so.
  • Lastly, we reviewed my stress incontinence and nocturia issues and talked about my pelvic floor physical therapy.

It was one of the more thorough discussions that I’ve had at the VA, and I’m okay with the plan coming out of the meeting. I’ll go for another PSA test on 1 March; hopefully get the PSMA PET scan scheduled in early March; and have a follow-up with the urologist on 24 March.

I’m glad I got this out of the way before the holiday. I’ve got my answers, plus it frees up next week for me to go out an play if I want.

Merry Christmas, Happy New Year, and be well!

Header image: Hotel del Coronado at Christmas, Coronado, California

Month 181 – Physical Therapy for Incontinence

On By DanIn Incontinence, Prostate Cancer, Side Effects, Treatment2 Comments

I’m of the mind that PT stands for Pain & Torture, not physical therapy. (Okay. I exaggerate.)

During my appointment with the urologist back on 7 October, we talked about how my incontinence seemed to be slowly worsening post-radiation. One of the options that he offered up was pelvic floor therapy, and I decided to give that a try.

Unfortunately, the VA doesn’t offer that therapy in-house, so they had to arrange for community care. That process took until mid-November to get the appointment set up, and I just had my first appointment last week.

I was expecting more instruction on Kegel exercises, perhaps with the biofeedback device that they used on me pre-surgery to train me on how to do the exercises. But that’s not what’s happened so far.

The physical therapist explained that many of the muscle groups in your legs and torso can have an impact on your pelvic floor muscles, too, as they’re all connected as part of a larger system. By stretching and strengthening them, we could see improvements in the pelvic floor. At first, it sounded like a bit of phooey to me, but I’m approaching this with an open mind and giving it a shot.

I’ve had just two sessions so far, and we’ve focused mainly on stretching exercises impacting my hamstrings, glutes, calves, and torso, as well as doing squats and walking on a treadmill. Some of the stretches are bordering on turning me into a contortionist, which this soon-to-be 68-year-old body is fighting tooth-and-nail (hence, “Pain & Torture”). But they’re low impact and we’re taking it slowly so I don’t injure myself.

The other thing that she had me doing was documenting my fluid intake, output, and number of incontinence leaks for at least three days. We’re trying to establish a baseline against which we can measure any improvements. She had a hardcopy log which I quickly converted into a tracking spreadsheet. (You know I had to!)

She also made some recommendations to improve my diet and the types/quantities of beverages that I consume (less soda, more water).

Of course, I have to keep up with these exercises daily at home.

On the one hand, I’m a bit skeptical about this approach but, on the other hand, I do feel as though that, even after one week, I’ve noticed that I seem to be having fewer leak episodes and, the ones that I do have, seem to be smaller in size. We’ll let my spreadsheet determine if there’s a true trend, or if this is all in my head.

I have another appointment next week and then, in the new year, she mentioned that we might cut back to every other week sessions or even monthly sessions, depending on the progress that’s made.

One thing that I am a little concerned about is the potential cost of this.

Yes, the VA is covering the costs, but what many don’t realize is that some of us, based on our eligibility criteria, have to pay co-pays for our visits. Seeing the specialists—including the urologist—costs $50 per visit. Seeing a PT every week would rack up significant costs over time, and I’m not sure if the VA has an out-of-pocket cap on how much a veteran pays. (I’ll have to check into that.)

Assuming the holidays don’t mess it up, my appointment with the urologist to review my PSA results is on 30 December. We’ll definitely be talking about another PSMA PET scan and getting medical oncologists involved in my case.

Wishing everyone a great holiday season and a healthy, prosperous New Year!

—Dan

Header image: Botanical Building in holiday lights, Balboa Park, San Diego, California

Day 5,502 – PSA Results

On By DanIn Prostate CancerLeave a comment

It’s that time again. My PSA came back at 1.57 ng/mL, up from 1.34 ng/mL in September.

PSA doubling time using the last five values increased slightly from 11.5 months in September to 11.9 months now. PSA Velocity went from 0.6 to 0.8 ng/mL/yr.

My appointment to review the results is on 30 December 2025, and I’ll be sure to talk about another PSMA PET scan to see if we can determine what’s going on before we start down the androgen deprivation (hormone) therapy path.

On an unrelated note, I managed to take a little drive through the country from San Diego to visit family in southeastern Wisconsin and back last month. You can check out the full story HERE if you’re bored.

Header image: Utah canyons along I-70

Fifteen Years

On By DanIn Prostate Cancer6 Comments

It’s been fifteen years since I was told those three little life-altering words on 11 November 2010: You have cancer.

The good news is that I’m still here and able to write about it. The bad news is that I’m still writing about it. (I want a refund.)

Fifteen years of being poked and prodded. Fifteen years of being scanned and zapped. Fifteen years of riding an emotional roller coaster waiting for the next test or scan result. Fifteen years of researching far more than I ever imagined researching. Fifteen years of making decisions that impact the quality and quantity of my life, and hoping they were the right choices.

In other words, fifteen years of fun. <sarcasm font>

On the positive side, it’s fifteen years of getting to know how strong I can be. It’s fifteen years of adapting to new circumstances and making the best of them. It’s fifteen years of learning to not look back and question decisions already made. It’s fifteen years of forming new relationships with those in the same boat. Most important, it’s fifteen years of waking up every morning and starting a new day when so many others with this disease didn’t get that option.

And, because I valued others with prostate cancer sharing their experiences, it’s fifteen years of telling my story via a silly little blog that I had no idea would keep going for this long. Mind-blowing. Helping others by sharing my story was my way of making lemonade out of lemons.

In three weeks I’ll have my next PSA test. Hopefully, with the follow-up appointment on 30 December, we can map out the next steps to keep me around for another fifteen years.

Finally, sincere thanks to every one who has supported me over the last fifteen years. I appreciate it more than you know.

Be well.

Header image: Milford Sound, New Zealand

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

Month 178 – Urologist Appointment

On By DanIn Prostate CancerLeave a comment

Given my recent posts on my PSA increasing, there really isn’t much to talk about this month.

But the Urology clinic did call early Monday morning to reschedule my appointment. It’s now on Tuesday, 7 October 2025. That’s only a week after my originally scheduled appointment, so I can live with that.

I’ll be collecting my thoughts and putting my list of questions together in advance of our meeting to get the most out of our time together. (Lately, I’ve been emailing my questions in advance to facilitate the discussion, assuming the doctor reads them more than five minutes before walking into the exam room.)

In the interim, I’ve got a date with jury duty in about two weeks. Instead of calling in to see if your service is needed, the county now has you report to the courthouse. Whether I get selected or not is another thing.

That’s it. Be well!

Header image: View of Anza-Borrego Desert from Mt. Laguna, California

PCF Virtual Summit on Advanced Prostate Cancer, 9 October

On By DanIn Prostate CancerLeave a comment

The Prostate Cancer Foundation is hosting a summit on advanced prostate cancer at 7 p.m., EST, Thursday, 9 October via Zoom.

The details on the registration page are quite broad and they don’t show the duration of the event, nor a specific schedule of when individual topics will be covered. Even so, it may be worth listening to.

You can learn more about it here:

Patient Summits

Header image: Anza-Borrego Desert State Park, California

Day 5,414 – Doctor Response

On By DanIn Prostate CancerLeave a comment

The urologist emailed late yesterday and didn’t want to dispense any guidance via email. He preferred to have the discussion in person (so do I), and he contacted the appointment schedulers to try to find something open in “early October.”

With luck, the schedulers will call early next week and we’ll get something on the calendar.

More to come. Be well!

Day 5,412 – PSA Results

On By DanIn Prostate Cancer8 Comments

My PSA jumped 41% from 0.95 ng/mL to 1.34 ng/mL, and, interestingly, my PSA doubling time went from 10.0 months to 11.5 months using the last five readings.

Needless to say, that was a larger increase than I expected, but I’m also not surprised or panicked about it.

I’ll gather my thoughts and send an email to the urologist to seek his/her guidance. I’ll mention the canceled and rescheduled appointment; ask for their thoughts about another PSMA PET scan (or other scan); and ask, “What’s next?”

Other than that, I really don’t know what else needs to be done in this limbo period of being between one treatment and the likely next treatment.

More to follow. Be well.

Header image: Beach and Cliffs, Torrey Pines State Natural Reserve, San Diego, California

Day 5,410 – PSA Test

On By DanIn Prostate Cancer2 Comments

I went for my PSA blood draw this morning on the day after our Labor Day holiday weekend. I thought the clinic might be packed, but I was pleasantly surprised. It took 9 minutes from checking in at the kiosk to walking out the door.

I’m guessing that I should be able to access my results online on Friday or Saturday. The trend function on my PSA tracking spreadsheet suggests that my PSA will increase from 0.95 ng/mL back in March to 1.09 ng/mL today. We’ll see if the actual results are anywhere close.

You may recall that my last urologist appointment was on 1 April 2025, and we scheduled the six-month follow-up on 30 September. A few weeks ago, the VA canceled that September appointment and the earliest re-schedule slot was on 30 December. I haven’t called to squeal about that yet because I wanted to see what the results of the PSA test are first.

If the results go from 0.95 ng/mL to 1.0 or so—even the quasi predicted 1.09 ng/mL—it doesn’t seem that urgent and I’ll just email the urologist and have a discussion as to next steps from there. I’ll also look at any changes in PSA doubling time to help determine urgency. But if the results really jump substantially, e.g., 1.4, 1.6, 2.0, etc., then I’ll work to get that 30 December appointment moved up to a much earlier date.

I suspect another PSMA PET (or other) scan may be in my future to see if we can finally determine what’s going on inside of me.

Stay tuned for the results later in the week.

Be well and enjoy this moment of Zen.

Header image: Imperial Beach, California