Tag: Prostate Cancer Blog

Month 176 – Three Years Since SRT

On By DanIn Prostate Cancer3 Comments

If you’ve been reading my blog for any period of time, you already know that I have a penchant for marking anniversaries or important dates. Today marks three years since I started my 35 sessions of salvage radiation therapy to deal with my recurrent prostate cancer.

I’m still here, and so is the cancer.

Interestingly, I’ve managed to quite successfully suppress my concerns about it for the last few months as I wait for my next PSA test in September. I can’t do anything about it, so why worry while I’m waiting, right?

Instead, I’ve been doing my best to maximize each day (although a few days, I’m a complete slug and don’t do much of anything—the perks of retirement!). I had a good trip back to the Midwest to visit family and friends at the end of May; have been taking a few local trips; and just chill with friends at my local watering hole. Life is good.

That all doesn’t mean that I’ve completely forgotten about the little bugs inside me. The treatment side effects remind me that it’s still there every day, but they’re tolerable.

My appointment with the urologist is on 30 September, so I’ll get my PSA test done a week or two in advance to allow time for the results to come in.

Until then, I’ll just keep cruising along.

Be well.

Header Image: Lake Sara, Effingham, Illinois

Month 174 – Nothin’

On By DanIn Prostate Cancer4 Comments

I feel as though I’m falling down in my blogging responsibilities, because I got nothin’ to report this month. However, that means that things are going well as I continue to live life with prostate cancer.

In fact, things are going so well that I treated myself to a little retirement bucket list trip to Aotearoa / New Zealand that I just returned from last week.

It was a fantastic, albeit, too short of a trip to a place that I’ve been wanting to visit and photograph for years. I’ll spare you the details here, but if you’re interested and have half an hour or so, you can check out my full trip summary (with over 100 photos and videos) here:

Aotearoa / New Zealand

It’s best viewed on a larger screen so you can click on the images to enlarge them for viewing.

Be well!

Header image: Milford Sound, Fiordland National Park, New Zealand

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

PCRI Mid-year Update: Sat., 29 March

On By DanIn Prostate Cancer1 Comment

In case you’re interested, the Prostate Cancer Research Institute is hosting its mid-year update tomorrow, Saturday, 29 March 2025 from 8:30 a.m. to 5:30 p.m., PDT (Los Angeles time). You can learn more about it here:

https://pcri.org/2025-midyear-update

SATURDAY, MARCH 29, 2025

8:30am – 8:35am / Opening Remarks / Alex Scholz

8:35am – 11:00am / Genetic Testing & Biomarkers / Todd Morgan, MD |

11:00am – 1:00pm / Spot Radiation & Advanced Prostate Cancer / Michael Steinberg, MD

1:00pm – 4:00pm / What I have learned after 10,000 PET-CT Scans: Part 1 and 2 / Eugene Kwon, MD

4:00pm – 5:30pm / 2025 Mid-Year Review & Extended Q+A / Mark Moyad, MD, MPH & Mark Scholz, MD

*Agenda subject to change

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!

Month 172 – PSMA PET & PSA

On By DanIn imaging, Prostate CancerLeave a comment

This will be a short update, as not much has really happened in the last month.

Tomorrow, I have my third PSMA PET scan. With luck, we’ll actually find the location of the cancer with this scan. That will help us decide what’s next in this adventure. I suspect I should be able to access the results online within a week or so. If not, I have a follow-up appointment on 1 April with the urologist.

I was going to get my PSA test done next week, but I wasn’t sure what impact a potential government shutdown might have on access to the lab, so I went for the blood draw on Monday. I’m guessing that I’ll break the 1.0 ng/mL threshold with this test.

That’s it for now. More to come in the days ahead.

Header image: Sunset over the Pacific Ocean, Silver Strand State Beach, California

Day 5,216 – PSMA PET Scan Scheduled

On By DanIn imaging, Prostate Cancer2 Comments

Just as predicted, the scheduler took a couple of days to call. We’ve got the PSMA PET scan on the calendar for 12 March 2025, well ahead of the follow-up appointment with the urologist on 1 April 2025. No bone scan needed.

That’s it. That’s the news for today.

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

Month 171 Follow-up

On By DanIn Prostate CancerLeave a comment

I told you things were moving fast. In the hours after my post earlier today, these new reports came out:

The VA dismisses more than 1,000 employees who were probationary employees.

Senator Patty Murphy reported additional firings of research staff:

And LGBTQ Pride flags are now banned at VA facilities.

Okay. I promise not to turn this blog into a politics blog, but I hope you can understand how these issues are of considerable concern to me, as they could potentially impact my future care and treatment. (I appreciate your indulgence as I rant.)

Barring any other major development or me losing my access to my care, I won’t mention this topic again. I’ll return to talking about prostate cancer and my treatments going forward beginning next week with a post-appointment update.

I do ask my U.S. readers to consider contacting your elected members of Congress if you believe that VA healthcare should be protected. Every voice counts.

Month 171– Preparing

On By DanIn Prostate Cancer2 Comments

In preparation for next week’s appointment with the urologist, I’ve put together a list of questions to bring with me. I’ve also done something new: I’ve emailed the questions to the office in advance of the meeting to hopefully make the most out of the time we have together. That, of course, assumes that the doctor will actually see the questions more than five minutes before walking into the exam room. We’ll see if it pays off.

I’ve also been preparing on another front, too.

As many of you already know, I have been receiving my care through the Veterans Affairs (VA) healthcare system since 2013. Of course, the VA is a government agency, and I’m growing increasingly concerned about this new administration’s slash-and-burn attacks on multiple government agencies all in the name of cost savings and “efficiency.” 1

The funding freeze that was put in place initially stopped hiring at the already understaffed VA, but enough people spoke out and exemptions for hiring certain key positions were allowed. I’ve also heard that the administration wants to review eligibility requirements for veterans to be able to receive care. This is of particular concern to me.

Veterans seeking healthcare through the VA are assigned to one of eight priority groups to be eligible for care. Priority Group 1 in the highest for combat veterans with service-connected injuries and disabilities; Priority Group 8 is the lowest group for eligibility. My time in the Persian Gulf for Operation Desert Shield earned me a place in Priority Group 6, more towards the lower end of the priority groups, perhaps making me more vulnerable to losing care should the administration change eligibility requirements.

Another proposal under consideration (and has been for years by some), is the privatization of VA healthcare. In other words, the administration would prefer to push 9.1 million veterans receiving care into the private, already overburdened, for-profit healthcare system. You know the one. It’s where insurance claim denial rates are approaching 30% or higher at some companies, and where an insurance company CEO was assassinated on the streets by someone disgruntled by the health insurance business (absolutely not condoning that egregious action).

Another concern is this administration’s assault on the LGBTQ community. We’ve seen the new secretary of defense ban one group from the community from serving, and it is within the realm of possibility that they could expand that ban to the entire community at some point in the future. Perhaps it would be expanded to the VA, too, and that would be another possible reason for me to lose my care. (The VA knows I’m gay.)

Given how quickly and how erratically things are moving, I’ve taken a few steps in preparation for possible loss of my VA healthcare. I’ve refilled my prescription early and I’ve downloaded my entire healthcare record—all 914 pages—before a certain billionaire’s hackers gain access to the VA computer systems and lock people out, as we’ve already seen happen at other agencies.

Am I overreacting? Who knows. We’re in tumultuous, uncertain times that none of us have ever seen the likes of before.

What I do know is that this draft-dodging president has disparaged and disrespected service members and veterans for a very long time, calling us “suckers” and “losers.” If he’s already cut off aid to starving children around the world by killing the US Agency for International Development (USAID), I wouldn’t put it past him to cut off healthcare to those of us he considers “losers.”

Please don’t say, “Oh, that could never happen.” They’re already looking at reducing veteran disability payments as a cost savings measure. Sadly, the majority party in Congress doesn’t have a single vertebra between its 53 senators and 218 representatives to stand up to the administration.

On the off chance that I do lose my VA healthcare, I do have Medicare to fall back on. But the administration has also set its “efficiency” sights on paring that down, too. Then there’s their long-standing desire to repeal the Affordable Care Act (Obamacare) without anything more than a concept of a replacement plan. (The ACA made it mandatory that pre-existing conditions be covered, an important consideration for cancer patients.)

Again, am I overreacting? Probably. But I do want to be prepared should the unthinkable happen and I lose my VA healthcare. If my preparations are for naught and I look silly, so be it. It wouldn’t be the first time. But I’m at an important juncture in my cancer journey, and I would want to make the transition to a new healthcare team as seamless as possible if I’m forced to do so. (Of course, I would dread the prospect of having to find a new primary care physician and urological oncology team from scratch. That could take months.)

We’re in crazy times. Let’s hope that reason takes over, calmer heads prevail, and that I’m wrong about all of this.

1 – Yes, there is waste in every government agency, including the VA, but there’s a right way and a wrong way to find and eliminate it. You don’t shut down the entire agency; you do a line-by-line audit of the budget and practices to see where the waste is. You also need to look at the downstream impacts before you eliminate the waste (e.g., U.S. farmers sold $2 billion in agricultural products per year to USAID to feed others around the world; now that market and that income for those American farmers is gone). Lastly, just because you don’t agree with a program that Congress appropriated funds for, doesn’t mean it’s waste or fraud.