Tag: 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

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.

Day 5,188 – A Wee Problem

On By DanIn Emotional Aspects, Incontinence, Prostate Cancer, Side Effects5 Comments

I’ve been debating whether to write this post but figured that I’ve never shied away from sharing the gory details of the total prostate cancer experience. So if you don’t want to read about my latest adventure with incontinence, you can check out the trip report of my trip to Death Valley last week.

In fact, the issue began as a result of my trip to Death Valley.

After four days of standing in the middle of the desert pretty much solo the entire time, I returned home Wednesday evening. Thursday morning, I can off to the clinic for my PSA test (it took 7 minutes and 38 seconds from check-in to walking out the door). But by Thursday afternoon, I was feeling a bit wonky.

By Thursday night, I was down for the count with a full-blown head cold/flu. I was both baffled by how I contracted it, and annoyed that I had. It had been several years since I’ve had a cold or flu.

Unfortunately, one of the symptoms that hit me hard and caused the incontinence issues was a nagging tickle in the back of my throat that had me coughing pretty consistently and, in many cases, pretty intensely. It sucked.

It sucked because coughing is perhaps the greatest trigger for my stress incontinence. The harder I cough, the more I leak.

I wear Depend Shields in my daily life, and I can get by with one or two pads a day. But by the weekend, the coughing and resultant leaking exceeded their capacity. I had one coughing fit that had me fill the pad, overflow, and soak my jeans. Not fun. Through the weekend and into early this week, I was going through multiple pads a day and doing several loads of laundry.

I toyed with the idea of running to the store to get Depend Guards, the pads with more absorbency and capacity, but I didn’t want to risk embarrassing myself in the middle of Aisle 12 at the grocery store. Plus, I was probably as contagious as Typhoid Mary, so that wouldn’t have been a good thing, either.

I was taking some cold/flu medicine that helped reduce the cough—the root cause of my issue—and I just rode out the storm for a few more days. Today, a week after this all kicked in, I’m back to my good ol’ self getting by with the occasional drip and dribble.

The lessons learned for me are to keep the cough medicine on hand to help reduce the root cause, and to keep a supply of Depend Guards on hand to do a better job of controlling the mess.

Now you know why I may have been hesitant to share this. But, hey, it’s for educational purposes, right?

On a related note, I was successful in getting my appointment to review my PSA results moved to an earlier date. It’s now 18 February 2025 (four weeks is better than four months). I’m okay with that.

Unless you’ve been living under a rock the last two weeks, you already know that southern California has been ablaze with wildfires. Luckily, up until this point, they have stayed clear of San Diego for the most part. Until today.

This little gem popped up about 6 miles / 10 km from my house this afternoon:

View of the Border Fire on Otay Mountain taken from the vacant lot down the street from my house.

It’s grown to about 600 acres / 240 hectares in about six hours, and we’re expecting high Santa Ana winds this evening. It’s in a very mountainous area, and air crews have been working the scene all afternoon. Luckily, it’s adjacent to a large reservoir, so there’s plenty of water for the helicopters to access. We also have rain in the forecast for the weekend for the first time in months (San Diego has had the driest start to the wet season since they began keeping records in 1850. We’ve had only 0.14 inch / 3 mm of rain since 1 July 2024.)

Of course, I’m concerned and I’ve made preparations to leave if need be. But given the location, the fact that the reservoir is between me and the fire, and the prevailing winds are keeping the smoke south of me, I’m hopeful that my neighborhood will be unaffected.

I’ll keep everyone updated over the next day or two.

Be well.

Header image: Courtyard at The Ranch at Death Valley National 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 5,127 – Colonoscopy Results

On By DanIn Prostate Cancer, Radiation Proctitis8 Comments

No one can say I do things half-assed. I got a perfect 9/9 score on the Boston Bowel Preparation Scale. Clean as a whistle! 🙂 (I didn’t even know that there was such a scale.)

Yesterday’s colonoscopy went well, although it was a little different from the last one I had six years ago. The last one, I was knocked out with anesthesia and don’t remember the procedure at all. This one, I had “moderate (conscious) sedation” and was able to have conversations with the team and watch the procedure on a monitor, although my mind was drifting in and out of focus throughout.

Before we started, I had a good conversation with the doctor about my salvage radiation therapy and the possibility of radiation proctitis given the occasional blood in my stools. She was appreciative of the detailed information to help her in doing the procedure. I really stressed that I didn’t want the scope or the inflation of my colon to do more damage than what may already be there.

There were two polyps that were removed during the procedure and will be sent off for pathology. The first was in the transverse colon, and the second in the sigmoid colon, not far from the rectum. (I didn’t think to ask how long it will take for the pathology to come back, but I’m assuming it will be about two weeks.)

The sigmoid polyp was described as, “erythematous and friable.” Erythematous means the mucosa is red and inflamed due to a buildup of blood in dilated capillaries; friable describes how easily the mucosa can be damaged by a biopsy instrument or endoscope.

Because I didn’t read her printed report—with 13 color photos and map of my colon—until I got home, I didn’t get to ask if she thought that could have been caused or aggravated by the radiation therapy being closer to the rectum.

She also found “a few non-bleeding small angioectasias in the rectum, consistent with chronic radiation proctitis,” which are dilated, thin-walled blood vessels (think spider veins) that can occur anywhere in the gastrointestinal (GI) tract. I watched her zap those with “argon plasma coagulation (APC).” She described that as cauterizing the vessels to stop them from possibly bleeding into the GI tract.

Pending the outcome of the pathology on the polyps, she recommended a follow-up colonoscopy in three years. Yippee!

Time will tell if the sigmoid colon polyp removal and APC did the trick to stop the blood in my stools (hopefully, there are no new side effects from the APC). I guess time will tell on both counts.

Next up: Get through the holidays and PSA test sometime in late January.

Happy Thanksgiving! (I’ll get a 0/9 score after Thanksgiving dinner. 🤣)

Header Image: San Diego, California skyline at dusk.

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