Tag: ADT

Day 5,683 – Medical Oncologist Visits

On By DanIn Hormone Therapy, imaging, Prostate Cancer, Recurrence, Treatment4 Comments

My visits with the medical oncologists yesterday and today went well, and there was some consensus on how to proceed.

[BLUF: We’re kicking the can down the road three months.]

UCSD Oncologist

The first part of the meeting was getting the doctor up to speed on my case, as he didn’t have any of the history. Of course, nerd me came prepared with a two-page Reader’s Digest chronological summary of my diagnosis and treatment, printouts of my PSA charts, and copies of the PSA doubling time (PSA DT) calculations.

PSA Doubling Time

Because PSA DT is an important number in the decision-making process, I opened the conversation by asking him how many data points should be used in the calculations. He chuckled a bit before saying that one of the downfalls of using PSA DT is you can pick and choose the data that you want to get the answer that you want. So true.

I calculated my PSA DT using 3, 4, and 5 values and came up with different answers:

Number of values usedGoing back X monthsCalculated PSA DT
367.6 months
498.0 months
5149.2 months

He just looked at the curve on my PSA tracking chart and estimated in his head that it was around nine months. In his eyes, that six to nine month PSA DT warrants closer observation and monitoring.

Inconclusive PSMA PET scans

We discussed my four inconclusive PSMA PET scans and [F18] FDG PET scan, and whether he thought that I was PSMA negative. He thought it was unlikely that I was, offering up a case with another patient whose PSA was over 50 ng/mL and still showing up negative on PSMA PET scans.

One of the reasons that we talked about that at some length was that he suggested that Pluvicto / Lutetium-177 might be an option.

I asked about getting an Axumin scan or a Choline-11 scan, and he wasn’t in favor of doing either of those at the moment.

When to Start ADT

We also discussed when to start androgen deprivation (hormone) therapy (ADT). He didn’t have a set of specific criteria that he would use—e.g., specific PSA number, evidence of metastasis—but did focus in on the rate of PSA rise (PSA DT) and “patient motivations and preferences.”

What type of ADT

The doctor was a proponent of intermittent therapy in my case with six to twelve months on, then a similar period off. His goal would be to “maximize time off treatment” as long as my PSA is holding relatively steady and not going bonkers.

He seemed a tad hesitant to start with the combination therapy of ADT + ARPI (Eligard + Enzalutamide), but wasn’t opposed to it, either. He wasn’t a fan of trying the Enzalutamide alone because of its side effects (gynecomastia, in particular) and not seeing any substantial changes in long term outcomes.

Summary

I did share with the doctor the VA MO’s desire to start ADT + ARPI sooner rather than later, and he had a much lower sense of urgency in taking action. And, while I was a bonehead and didn’t explicitly ask him for his recommended course of action, the entire conversation led me to conclude that his preference was for continued close observation.

VA Oncologist

I technically didn’t meet with the oncologist; I met with a nurse practitioner who had reviewed my case with the oncologist just before (and during) my appointment.

Discussion

It was interesting that she opened the conversation with a quick review of my last appointment there, told me my PSA results from last week, and then said something along the lines of, “If you’re not ready to start ADT today, the doctor is okay with monitoring for another three months.”

At that point, I mentioned that I went to the UCSD MO the day before, and I spent a good chunk of time relaying how that meeting went.

I reminded her that I have the bone density scan in a few weeks and I intended to go through with that to establish a baseline even though we might not start ADT right away. She agreed.

I’m still meeting with the VA urologist on 23 June and want to get their thoughts on what’s next.

Summary

We’re going to do another PSA test in September, and the VA MO didn’t want to schedule an appointment with me until December with another PSA test just before that meeting, too. Interestingly, the VA MO also wanted to schedule a regular CT scan and bone scan ahead of the December appointment.

However, if the September PSA test jumps up significantly, we’ll revisit that plan based on the results. That may change doing the CT/Bone scans to another PSMA PET scan.

The Plan

In short, we’re going to kick the can down the road another three months.

More specifically:

  • Bone density scan – 17 June
  • Urologist appointment – 23 June
  • PSA test – First week of September
  • CT and Bone scan – First week of December
  • PSA test – First week of December
  • VA Oncology Appointment – 8 December

Summary

On the whole, I’m pleased with the plan as it stands right now. The UCSD MO emphasized the shared decision-making approach, adding in his notes, “Daniel is very well educated about his illness and understands there is no clearcut right and wrong answer.” Ain’t that the truth (about the no right or wrong answer).

Once I cleared the hurdles of getting set up in the UCSD system, I was impressed by the friendliness and professionalism of their staff in the department. They have a patient portal app that allows access to records and makes communicating about appointments—in both directions—quite easy.

One thing that I’ve noticed with both the VA and UCSD oncology departments is that their empathy and caring nature seems to be a notch or two above that of their respective urology departments. Not that the urology teams aren’t caring or empathetic; it’s just that the oncology folks seem to take it a step further.

I know the VA MO expressed a desire to take the lead on my case at my last appointment, and I’ll mention that to the urologist on the 23rd. And, for now, as pleasant as the experience at UCSD was, I plan on having the VA be my primary source of care.

More to come.

Be well!

Header image: Sunset, Imperial Beach, California

Day 5,677 – PSA Results

On By DanIn Hormone Therapy, Prostate Cancer1 Comment

I went for my PSA test this morning and already have the results this afternoon (a pleasant surprise).

My PSA increased, but not as much as I expected it to. It went from 2.52 ng/mL in March to 2.65 ng/mL today.

If I use the last five PSA values to calculate PSA doubling time going back 14 months, my PSA DT is 9.2 months. If I use the last four PSA values going back only nine months, it’s 8.0 months. Again, the VA medical oncologist used the nine month PSA DT one of the triggers to start hormone therapy.

Armed with these latest results, I should be ready for my upcoming appointments:

Monday, 1 June – UCSD Medical oncologist

Tuesday, 2 June – VA Medical oncologist

Wednesday, 17 June – Bone density scan to establish baseline

Tuesday, 23 June – VA Urologist

I definitely plan on asking the UCSD MO what his thoughts are on an Axumin scan, and whether it’s worth pursuing before we start hormone therapy. If he agrees, I’ll have to add that to the schedule, too.

I also had another testosterone test done to establish a baseline should I opt to start hormone therapy. It came in at 416 ng/dL (reference range 200-800 ng/dL).

Over the holiday weekend, UCSD sent an automated email asking me to complete their electronic check-in process. Sheesh. It took more than an hour of filling out forms, providing history, and updating insurance. The only thing they didn’t ask for was our family cat’s name from when I was five years old. Hopefully, getting all that taken care of in advance makes the appointment go more smoothly.

More to come. Be well!

Header image: Lake Sara, Effingham, Illnois

Month 186 – What a Month

On By DanIn Hormone Therapy, Incontinence, Prostate Cancer, RecurrenceLeave a comment

We last left our hero with the beginning of a head cold after his scan and oncologist meeting. And, boy, what a head cold that turned out to be.

Normally, a typical head cold lasts a week or so and you’re back to normal. Not this time. This was the most stubborn virus, hanging on for three weeks and change. It was ugly. So ugly, in fact, that I went to the doctor for help.

The cold started out with a light fever and lots and lots of coughing. Of course, when you have your prostate plucked from your pelvis and they zap what’s left, stress incontinence is an issue. If I have a light cough, I’m generally okay, but with this virus, I was having deep coughs where it seemed as though I was trying to turn my lungs inside out. I had to switch to the heavy-duty incontinence pads and, even then, I blew out two of them with coughing fits, leaking into my underwear and jeans. Messy and not fun.

The doctor gave me something to calm the dry coughs, and that had a bit of a positive effect. But then my sinuses filled, my nose was running, and I was coughing up phlegm so I switched to something else to deal with that.

Long story shorter, it’s pretty much all behind me now, and that’s a good thing. Maybe I’ll go back to the COVID days and wear masks when riding packed transit or wandering the halls of hospitals.

While I was down for the count, I had plenty of time to dig into more about androgen deprivation therapy (ADT), its pros and cons, and the timing of starting it. Sadly, I could find information that supported pretty much any perspective you wanted, which really isn’t all that helpful.

On the whole, it appears the current thinking is to start ADT sooner rather than later, and to use a doublet therapy, i.e., ADT + ARPI. This seems to delay time to metastasis, but has the obvious cost of substantial side effects.

On a related note, I called UCSD on 30 April to set up a second opinion appointment with the medical oncologist that’s well-respected and that the VA called to consult on my case two years ago. Because I was already in their system, that helped a little. I had to update my insurance information, and they said they’d get back to me in 2-3 business days. They didn’t, so I called back today, 11 May. They put me on the “high priority” call-back list this afternoon to be called back “between now and 48 hours.” Okie-dokie. And they say scheduling appointments at the VA is difficult…

I’ve got a number of appointments coming up at the end of May and into June:

27 May – PSA Test and other pre-ADT labs ordered by the oncologist

2 June – Meeting with VA medical oncologist

17 June – Dexa Scan bone density scan for baseline

23 June – Meeting with VA urologist

With luck, I’ll be able to add the UCSD medical oncologist to that list as well.

I really want the PSA test results—specifically, the PSA doubling time—to be a guide into what happens next and when.

One of the other things that I dug into a bit when I was down with the cold was how many values to use when calculating PSADT. As expected, there were dozens of different answers. Grr. My pea-sized engineer’s brain decided that I’ll use the last four PSA values if they cover at least a year. To me, that would render more useful information that shows the latest trend versus loading in all data points that may skew the results to show something less aggressive. But what do I know?

Using the Memorial Sloan-Kettering PSADT calculator and four data points over the last year, my PSADT is 8.9 months. Using a second calculator I found, it’s 8.21 months. For grins and giggles, I plugged in the last two years worth of data, and my PSADT was 10.4 months. Doing my research on ADT, PSADTs in the 6-9 month range seemed to be a trigger for action.

My PSA in March was 2.52 ng/mL, and I suspect it will be approaching 3.0 ng/mL at the end of May.

Obviously, this summer will be a series of data collection, evaluation, and big decision-making. Yippee! <sarcasm font>

Stay tuned for more.

Be well!

Header image: Torrey Pines State Beach, California

Month 185 – Scan Results & Oncologist Meeting

On By DanIn Hormone Therapy, imaging, Prostate Cancer, Recurrence, Treatment7 Comments

It’s been a busy two days hanging out at the doctor’s offices between the scan and the oncologist. Here’s a summary of each, my final thoughts, and a quick explainer about hormone therapy for the uninitiated at the end.

18F-FDG PET Scan

“No evidence of metabolically active malignancy or metastatic disease.”

Well, I hate to say it, but I’m not necessarily surprised by that result. I didn’t have high hopes of getting a definitive answer going into the scan given its lower sensitivity and lower specificity, but I thought it was definitely worth the effort.

As far as the procedure itself was concerned, it was slightly different than the 68Ga-PSMA-11 PET scan. I had to fast for at least 6 hours (no food, just water) before the injection of the 18F-FDG tracer. They also had to measure my blood glucose level to ensure it was under 200 mg/dL (it was). If it was over, the scan would have been canceled.

There was a one-hour waiting period for the tracer to distribute through my body, and the scan itself took 45 minutes. Seeing as I had to get up at 4:30 a.m. for my 7 a.m. appointment, that hour in the recliner was much needed.

Oncologist

I actually met with two medical oncologists this morning, the resident about to complete his training (MO Jr.) and the full-blown MO Sr. who focuses on prostate and breast cancer. It was a good, nearly hour-long discussion. In a nutshell:

  • It was disappointing that the imaging didn’t show anything and, even though it would be nice to know where the cancer is located, MO Sr. felt it was time to start systemic treatment.
  • MO Sr.’s triggers for starting hormone therapy were a PSA greater than 2.0 ng/mL (I’m at 2.52) and a PSA doubling time less than 9 months (I’m at 8.9 months).
  • MO Sr. said that, with my numbers, I’m at “higher risk” for this to get away from us and metastasize.
  • MO Jr. said that the window for curative options has closed and that treatment going forward would be “palliative.” (I already knew that curative options were out the window.)
  • Both agreed it’s time for them (Oncology) to take the lead on my case at this point, with Urology still available in a supporting role.
  • Both suggested dual therapy involving androgen deprivation therapy (ADT) using Eligard (leuprolide acetate) and and androgen receptor pathway inhibitor (ARPI) using Xtandi (enzalutamide) as the current standard of care. [See explanation below if you’re unfamiliar.]
  • MO Sr. also suggested intermittent therapy over continuous therapy, using a 9-month schedule to start.

If she had her way, I believe MO Sr. would have had me start the therapy in the next week or so. I tapped on the brakes on that idea. I told her that Urology wanted another PSA test done in early June, and I thought it would be good to get that done before starting anything. Also, I’m traveling in May and I simply wanted to postpone anything until after I return. Six weeks won’t make that much of a difference.

We agreed, in concept, to the following:

  • No more scans to try to located the cancer for now.
  • Get pre-therapy lab work done the week after Memorial Day to establish baseline testosterone and PSA levels (among others) ahead of therapy.
  • Get a Dexa bone density scan to get a baseline prior to starting treatment (extended ADT can weaken bone density).
  • Meet on 2 June to review the results and make the final decision as to whether to start treatment.

Final Thoughts

It’s only been a few hours since the meeting, and I’m still trying to absorb it all and process it. Of course, after 15+ years of dealing with this, I knew we would eventually get to this point. Am I ready or willing to take the advice of the National Cancer Institute doctors in the video I shared recently to just monitor and delay treatment? I don’t know. It’s something that I’ll have to contemplate over the next six weeks or so.

I will say that I was pretty impressed with the Oncology Department as a whole. You’re assigned a care coordinator and given their direct phone number for all questions or concerns, and both doctors were good at listening and engaging in a real conversation. It seemed like they were a bit more empathetic over all, and that’s a good thing.

Certainly a lot to take in in the days and weeks ahead. I’m open to thoughts and feedback.

Be well!

—Dan

Hormone Therapy Explained

For those who aren’t really familiar with how prostate cancer works and what role hormone therapy plays, here’s a grossly over-simplified explainer.

Prostate cancer feeds off of testosterone and, as long as there’s a supply of testosterone, the cancer will continue to grow.

There are two ways to deprive the cancer of testosterone. The first is to stop or slow the production of testosterone. The second is to block the cancer cells from receiving the testosterone. The current standard of care is to use both methods simultaneously.

Let’s say the cancer cells are in the bottom of your favorite travel mug, thirsty for testosterone. If you put the mug under running water from your tap, the cells get the water (testosterone) they need and the cancer grows. But if you turn the tap off, the water (testosterone) stops flowing, and the cells in the bottom of the mug can’t grow. This is called androgen deprivation therapy (ADT).

The other way to stop the cancer cells in the bottom of the mug from getting water (testosterone), is to simply put the lid on and block the water from entering the mug. This is called androgen receptor pathway inhibitors (ARPI).

If you do both simultaneously, you can really slow the growth of the cancer. But we also know that some taps have slow leaks that drip water and, if the lid is slightly open, water (testosterone) and still make it to the cancer cells inside the mug.

There are two ways of turning the tap off. One, an orchiectomy, is a radical, surgical and permanent removal of the testes. But the adrenal glands also produce a small amount of testosterone, too, so the flow isn’t completely stopped.

The other is to use an ADT drug to have the brain tell the testes to stop producing testosterone. The drug is given via an injection in typically one, three, or six month doses, and it has significant side effects: hot flashes, mood swings, fatigue, loss of libido, loss of muscle strength, and loss of bone density, to name a few.

The way to put a lid on the mug is through an ARPI drug that’s usually taken in pill form daily. In my case, MO Sr. was recommending Xtandi (enzalutamide) as the ARPI. It has its own host of side effects: muscle and joint pain, fatigue, falls and bone fractures, headaches, high blood pressure and others.

The good news is that this combined treatment option can keep the cancer at bay for years (as long as you stay on it for years). However, at some point, the cancer can become resistant to the drugs, and you may have to move to stronger treatment options like chemotherapy.

Again, this is an oversimplification for those new to the topic.

Header image: Anza-Borrego Desert, California

Video: “Playing the Long Game” – Does your Recurrent/Advanced Prostate Cancer Need Treating? NCI Seminar

On By DanIn Hormone Therapy, Prostate Cancer, Recurrence, TreatmentLeave a comment

One of the best things about keeping this blog going over the years is learning new information from you, the readers.

Recently, a reader left a link to this video in the comments of one of my recent posts. It highlights the work that two doctors from the National Cancer Institute (NCI) have been doing when it comes to assessing whether and/or when to treat patients with recurrent/advanced prostate cancer.

The video is about an hour long (I changed the playback speed to 1.25x to get through it a little faster) and was very timely for my current situation.

One of the interesting parts was the discussion on how to define metastatic prostate cancer. It’s still pretty squishy if you ask me.

It will be interesting to see what the oncologist says tomorrow.

Be well!

Header image: Anza-Borrego Desert, California

Day 5,613 – Doctor Appointment

On By DanIn Hormone Therapy, imaging, Prostate Cancer, Recurrence6 Comments

Those of us of a certain age may remember the “Stump the Band” segment on the Johnny Carson show, where audience members asked the band to play some obscure song. Well, today was my turn at “Stump the Urologist.”

It was a very productive meeting that lasted nearly 40 minutes which was unusual. I came equipped with hard copies of my PSA chart, the MSKCC PSA doubling time (PSA-DT) calculator results, and my list of questions. He was impressed and really pleased with the chart in particular.

We started talking about how my four PSMA PET scans were all inconclusive, and I steered the conversation to whether I might be one of the 10% for whom PSMA PET scans don’t work. He seemed to be a bit skeptical at first, but he also said it was a possibility.

Given that my PSA increased substantially and my PSA-DT was decreasing, I wondered if it would be better to jump into ADT sooner or if there’s still value in trying to find the cancer’s location with imaging. He was of the opinion to continue to try to find it before starting ADT.

I had a series of questions that really dealt specifically with ADT, and he said it was a bit premature to think about those and that they would be better answered by a medical oncologist. I knew that I was jumping the gun with some of them, but I thought I’d ask anyway. During that part of the conversation, I did mention that I tolerated the ADT probably better than most when I had it for my salvage radiation therapy, but that I wasn’t eager to jump into it earlier than necessary.

After that, he took control of the conversation and asked me about my status when it came to sexual function and incontinence, and offered up options to deal with both if I was interested.

Then we returned to the topic of next steps, and that’s where I played “Stump the Urologist.” (Who, by the way, was a full-blown internist and not a resident.) He grabbed my PSA chart and excused himself for a few minutes as he went off to consult with the department head.

When he returned, I was a bit surprised when he put his faith in the results of the PSMA PET scan, saying it has the best sensitivity and the best specificity of any scan out there. He said that they had moved away from the Axumin scans because they were the old technology.

I politely pushed back, reminding him that a PSMA PET scan should have had an 80% – 90% chance of finding my cancer at my PSA level if I had the PSMA protein for the 68-Gallium tracer to lock onto. But if I don’t have that PSMA protein, the sensitivity and specificity of the scan won’t matter because nothing will ever light up. He really couldn’t argue against that.

I went back to the topic of ADT and mentioned that I met with a medical oncologist (MO) two years ago, and received conflicting opinions on when to start ADT. The MO said she would start my ADT when my PSA hit 2.0 ng/mL (a urologist said she wouldn’t start it until there was evidence of metastasis). Today’s urologist said he looks for one of three “triggers” to begin ADT: PSA > 10.0 ng/mL 😲; PSA-DT less than six months; or evidence of metastasis.

I also mentioned that the VA MO that I saw two years ago was a general oncologist and not someone who specialized in genitourinary cancers and, as helpful as she was, she had to consult with a UCSD MO who specifically deals with prostate cancer. I sowed the seed of eliminating the VA MO as a middleman if they have to consistently consult the UCSD doctor (who is highly regarded in the field), and suggested that I could just see him directly. I’m not sure if that will take root.

Finally, I did ask a very basic question given how elusive this has been: Is this even cancer? He said that, if I hadn’t had a prostatectomy, that there might be other explanations for the rising PSA. But he was confident that we are, in fact, dealing with cancer.

That led to a follow-up question of: Is it metastatic? Based on the information we have, he said it’s not. He seemed to squirm a bit when I asked about it being micro-metastatic, because, in his mind, that wasn’t very well-defined.

Before mapping out a plan, I have to admit that my ego puffed up a tad when he said, “You’re the best educated patient I’ve seen in weeks.” He also admitted that my case was a bit puzzling to them and not something they routinely see.

We agreed on three actions:

  • The doctor is going to explore how and where I can get an Axumin scan, and if the VA will authorize it if I have to go outside the VA. That may take a day or two to get an answer. I mentioned that I’d be willing to use Medicare and go out on my own if necessary.
  • He is doing a referral to get me seen by the VA oncology team to get them familiar with my case. I suspect it will take a few days to hear from the scheduler.
  • We do another PSA test in June and meet to see where we’re at.

All in all, this was a good meeting with a robust discussion about my case that has all of us scratching our heads as to what’s going on and what to do next. Frustrating? Yes, to a degree. But, as we discussed during the meeting, nothing is black-and-white in the world of prostate cancer.

More to come.

Be well!

For my readers outside the U.S. who may not be familiar with Johnny Carson, I was going to link a random video clip of his “Stump the Band” segment above and, when I searched YouTube, this—of all clips—was the one that popped up first. I think you’ll see the related humor in it once you watch it. 😂

Header image: Anza-Borrego Desert State Park, California

Month 184 – PSMA Explained & Next Steps

On By DanIn Hormone Therapy, imaging, Prostate Cancer6 Comments

After last week’s PSMA PET scan, I did a little more digging into how the scans work, and why they don’t work for 10% to 20% of patients.

Prostate specific membrane antigen (PSMA) is a protein that’s found in healthy prostate cells, and it continues to exist in prostate cancer cells in most, but not all, cases.

PSMA in Imaging

Researchers found a way to attach a radioactive tracer to the PSMA proteins which would light up when seen in a PET scan, indicating the presence of cancer. Gallium-68 is the most commonly used tracer, with fluorine-18 also being used.

When the tracer is injected into the patient, it seeks out cells that have expressed the PSMA protein and attaches to them. The PET scanner then looks for areas where there is a build-up of the tracer to indicate where the cancer is located.

I’m going to use a grossly over-simplified analogy based on my reading as a lay person.

We all know that magnets are attracted to steel or iron. Imagine that the cancer cells with the PSMA protein are small steel ball bearings, and the radioactive tracer is a bunch of tiny magnets. Inject the magnets into your system, and they go in search of the steel ball bearings. When they find them, they attach, and the PET scan can see where all the magnets are located.

But for those patients whose cancer cells do not have the PSMA protein, that essentially means that the cancer cells are plastic balls, and the magnets that were injected will never attach to them. The PET scan won’t see any build-up of magnets/cancer cells.

Based on my experience with four PSMA PET scans, I believe that I’m in that 10% group and that my cancer cells do not express the PSMA protein—they’re the plastic balls.

PSMA in Treatment

In addition to using PSMA positive cells for imaging purposes, researchers have also recently developed a treatment that uses the PSMA positive cells. It goes by the brand name Pluvicto, but also known as Lutetium-177–PSMA-617.

It’s only used on patients with castration-resistant prostate cancer that have PSMA proteins.

The difference between using gallium-68 or fluorine-18 and lutetium-177 is that the lutetium is a radioactive material that attaches to the PSMA protein cells and delivers beta particle radiation to kill the cells.

This means that for those patients whose cancer doesn’t express the PSMA protein, this treatment option would not be available.

Alternative Imaging

On the good news front, there are other imaging options out there, one of which is Axumin (18F-fluciclovine). Instead of targeting PSMA in the cancer cells, it looks at the amino acids.

Axumin scans aren’t as sensitive as PSMA PET scans, but they are more sensitive than choline-11 scans.

At my current PSA level (2.52 ng/mL), the Axumin scan should have a decent chance of finding something.

In a conversation in a prostate cancer forum, I learned that one patient had used the gallium-68 tracer for his PSMA PET scans with the same results as mine, but they switched to PYLARIFY (piflufolastat F 18) as the tracer (which also attaches to the PSMA) and found four lesions using the different radiotracer. I know that one anecdotal case doesn’t mean much, but it’s something I can ask my team about.

Skip Imaging?

You may recall that, at one point, I had conflicting guidance from the urologist and oncologist on when to start androgen deprivation (hormone) therapy (ADT). One said when we saw metastasis, and the other said when my PSA hit 2.0 ng/mL. Clearly, I’ve passed the 2.0 threshold with my latest PSA results.

I went back and recalculated my PSA doubling time using only the last four values dating back to 10 March 2025. (The fourth and fifth values that I used before are 0.94 (January 2025) and 0.95 (March 2025), so having them so close may have skewed the results a little. When I used all five data points, my PSADT was 10.1 months; when I use the last four data points, it’s 8.9 months.

Given I’m past the PSA threshold (for one doctor) and the fact my PSADT is less than 10 months, I’m also wondering if there’s any value in continuing in the efforts to try and find the lesions. Or is is better, given how my PSA is increasing, to go ahead and just resign myself to the fact that I have micrometastases someplace and start the ADT sooner rather than later? In the time that it takes to schedule another scan, regardless of the type, my PSA could be well over 3.0 and even pushing 4.0.

That leads me to another question. If we do start the ADT and it knocks my PSA down to <0.1 like it did when I had it for salvage radiation therapy, does that mean that scans wouldn’t be able to locate the cancer while on ADT?

To my way of thinking, knowing where the cancer is at is important, even if it means letting the PSA run unabated for a short while longer. But what the hell do I know? I’m all ears for experiences from others that may have been in the same or similar situation.

Summary

Again, this is my lay person interpretation of things that I’ve researched, so please take this with a pound of salt. If you know I’m wrong on my interpretation, please let me know and provide references as to why I’m wrong. I want to learn.

You can rest assured, though, that this will be a part of my conversation with my team on 24 March.

Stay tuned for more.

Be well.

Header image: Desert wildflowers, Anza-Borrego Desert State Park, California

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 5,118 – 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

Answering Your Hormone Therapy Comments | #MarkScholzMD #AlexScholz

On By DanIn Hormone Therapy, Prostate CancerLeave a comment

Here’s another informative video from the Prostate Cancer Research Institute with answers to many questions about hormone therapy. They have taken questions or comments from previous videos and provided answers.

If you don’t want to sit through the full 30 minutes, there are time stamps for each topic in the description of the video.