Tag: ADT

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.

Month 162 – Urologist Visit

On By DanIn Hormone Therapy, Prostate Cancer, Radiation Therapy, Recurrence4 Comments

The short version from yesterday’s appointment with the urologist (who happens to be the Urology Department head):

Kick the proverbial can(cer) six months down the road and retest PSA then.

Generally speaking, I’m okay with that approach. I mean, really, what else is there to do at this point? We don’t have sufficient data points to make any definitive treatment decisions right now. Of course, I may feel differently after sleeping on this for a few nights.

I have to admit that it was a challenging meeting because the doctor just wanted to rapid-fire through all the discussion points and it was difficult to get my questions out. In the end, though, I prevailed.

She was blasé about the increase in my PSA, saying it went up “a little bit.” (A 41% increase in my mind is a tad beyond “a little bit,” but what do I know?) She didn’t see much value in doing another PSMA PET scan right now because a scan with a PSA of 0.52 ng/mL has about a 50-50 chance of detecting anything. That somewhat aligns with what the medical oncologist (MO) said in February—that it would be better to wait until my PSA was at least 0.7 or 0.8 before doing another scan.

My SWAG (scientific wild-assed guess) is that my PSA will be between 0.75 ng/mL and 1.1 ng/mL in November based on the average increases in my PSA over the last four readings and my PSA doubling time. (Bookmark this prediction for future reference! 😀)

We did talk about androgen deprivation therapy. Her biggest concern was that starting too early would just accelerate the eventual likelihood of resistance later on when ADT is needed the most, so she wouldn’t start ADT until there’s confirmed metastasis. (By comparison, the MO suggested holding off until my PSA hit 2.0 ng/mL.) I did ask if starting ADT early delays metastasis and she said it didn’t, which I thought was interesting.

We talked about whether it would be a monotherapy or a combination therapy, and she suspected we would start with just a monotherapy. She acknowledged that there are several studies out there showing that a combination therapy may lead to better outcomes but, in her mind, they weren’t persuasive enough to launch straight into combination therapy. However, she did say that there are certain circumstances where it may make sense, one of which was if the metastases was in the spine.

I asked about possible radiation of localized lesions and she was not all that enthusiastic about the idea. Her biggest concern was about going through radiation twice and whether that was a wise thing given what damage it may do to my body. “I’d have to defer to the radiation oncologist to make that assessment,” she said. Her fear was additional radiation damage / side effects, and I would have that same concern, too. I would have to consider very carefully zapping anywhere in the pelvic area again given the changes I have already experienced in my bowel habits.

Even if the scan showed one or two lesions that could be zapped, she would also start ADT because “it’s pretty much guaranteed that there would be cancer elsewhere that didn’t light up on the scan.” That makes sense.

Lastly, given where I’m at in this advanced prostate cancer no-man’s land, I was curious how she would label or stage my cancer. With no evidence of metastases on the last scan, she would still have me at Stage 2. (See the American Cancer Society staging of prostate cancer HERE.)

Of course, in my mind, I turned to the actual definition of metastasis:

the spread of a disease-producing agency (such as cancer cells) from the initial or primary site of disease to another part of the body

I don’t have a prostate (initial or primary site) but I do have evidence of cancer, so it must be in “another part of the body.” By that definition, it must mean that I’m metastatic, right? (Yeah, I know… Nothing in the prostate cancer world is that clear.)

I asked the question about staging more as an academic exercise because it really doesn’t matter much what the label or stage is. All I know is that I’m living with this bug growing inside me.

One of my blog followers, Phil, recently commented that his oncologist considered prostate cancer to be more of a chronic illness than a terminal illness, and that stuck with me. I mentioned that to the doctor, and she embraced that view wholeheartedly, telling me that patients like me can be kept around for many years—even decades—and the disease can be managed like hypertension or diabetes.

Intellectually, I already knew that. But, after 13+ years, it’s quite the mental leap to jump from, “I have the Big C and it continues to grow unabated,” to, “Cancer, schmancer. It’s like arthritis in my big toe. No big deal.” But it is a leap I’m trying to make.

You would expect that, after 13+ years of testing, waiting for results, reviewing results, and planning next steps, I’d be used to it by now. It’s routine. But I’m finding it to be more and more emotionally draining with each cycle as the uncertainty drags on. Perhaps it’s because I’m coming to terms with failed treatments when I had hopes for better outcomes, or perhaps it’s because I’m back in the wait-and-see mode. Or maybe it’s just the cumulative effect of being on this roller coaster for so long.

On the positive side, I know that I’ve been blessed. Many fellow prostate cancer patients would love to have their PSAs be at my level; my quality of life is pretty good considering all that my body has been through; and—most important—I’m still here 13+ years after diagnosis.

On a somewhat related note, I finally got my baseline testosterone results back: 424 ng/dL. That was taken almost two years to the day after receiving my six-month Eligard shot in advance of salvage radiation therapy, so I’m guessing that any effect the Eligard may have had on my testosterone level has worn off by now.

From what I can tell, that’s a decent / normal number for a 66-year-old guy.

At least we have a starting point for reference now.

Well, that’s it for this post. Time to go out and play for six months. Be well!

What’s next:

  • Week of 28 October – Get PSA test
  • 4 November – Physical with primary care physician
  • 14 November – Appointment with urologist

Header Image: La Jolla Coast, San Diego, California

Day 4,880 – Full MO Report

On By DanIn Hormone Therapy, Prostate Cancer12 Comments

My computer issues have been sorted, so here’s the full scoop behind my meeting with the medical oncologist (MO) on Tuesday.

The meeting started with a nurse practitioner (NP) which threw me for a bit of a loop and initial disappointment. Because this was my initial contact with the oncology team, we spent a bit of time reviewing my history and how we got here. She did say that she would bring the MO into the discussion once we went through the preliminaries.

The nurse had actually done a pretty thorough job of reviewing my file prior to the meeting, and was familiar with the recent bone scan and PSMA PET scan results. Her take on my situation was that we were somewhat in limbo with no signs of metastases anywhere, and that the path forward wasn’t so clear-cut. (That actually led to a brief discussion on how metastases is defined in the world of prostate cancer. She was of the school that it’s not metastatic until it shows up on scans, while I pressed and suggested that, because the prostate is gone and the cancer is somewhere, it must, by traditional definition, be metastatic.)

Once we were through with the initial screening, the nurse brought in the MO and introduced her to me. I did ask if she specialized in prostate cancer and she does not; she’s more of a general oncologist. She did say, however, that she reviewed my case with a genitourinary oncologist at the University of California San Diego (UCSD) the day before our meeting. That was a good to know (but not the same as having a seasoned prostate MO in the room).

At that point, the three of us started going down my checklist of questions.

We talked about whether there was value in delaying the start of any treatment until my PSA rose to a level where a scan would detect the location. In the preliminary screening, the NP seemed to be inclined to start the ADT before another PSMA PET scan, and she was a little surprised that the MO said we should do another scan in six months. The MO said that the scan may reveal lesions that could be spot radiated as a treatment option.

That led to me asking about whether there would be value in whole pelvic radiation and, again, without knowing the cancer’s location neither was a fan of pursuing that at this point. Even if we did know the location, they would defer that decision to the radiation oncologist (RO).

Because my PSA is so low (in relative terms), both seemed to be more inclined to start with just ADT and not a combination therapy of ADT plus antiandrogens. The MO acknowledged that the use of combination therapy could be more effective in controlling the cancer, but cautioned about the increased side effects from doing a combination therapy approach. She also mentioned that using combination therapy is generally reserved for when the cancer is more advanced. (I’m not sure that my research agrees with that thought.)

I believe in her discussion with the UCSD GU oncologist that they said they would probably hold off initiating hormone therapy until my PSA reached 2.0 ng/mL. I’m going to have to do a little research to see if that makes sense.

We talked about intermittent therapy and whether that would be appropriate, and the consensus was that, at my low PSA, I would be a good candidate for intermittent ADT. However, that would depend on my PSA doubling time and how my PSA responds to the ADT.

I did ask if cancer in the lymph nodes would be symptomatic and generally speaking, they said, it’s not. I asked because I had had a weird pressure sensation in my groin last month that was new. (Yes, I’m at that point where I ask myself if every new ache, pain, or sensation is related to the cancer when it pops up.)

They noted going through my record that there was no baseline testosterone test, so we all agreed that that would be helpful to have. The NP put the order in to have that done when I get my PSA tested on 1 May 2024.

The MO expressed concern about my recent cardiac work-ups after my October emergency room visit (nothing of substance was found). She reminded me that hormone therapy does have a small but real risk of increasing cardiac events.

In the last part of the meeting, I did ask if I’ll be seeing the same MO going forward, and the short answer was “indirectly.”

You’ve heard me talk before that one of the drawbacks of getting my care through the VA is that it’s a teaching hospital and that I rarely see the same physician/resident twice. It’s good that I get so many differing opinions, but it prevents me from building a long-term relationship with the doctor as well. Different residents will filter through the oncology department, but the MO I met with will be overseeing all of their cases behind the scenes, so she would be tangentially involved.

I was asking because I likened myself to being an orchestra conductor, coordinating the efforts between the urologists, radiation oncologist, my primary care physician, and now the medical oncologist. I was inquiring if she or anyone else at VA would take the lead on coordinating all of these discussions and treatment considerations. She did mention that they do have a “tumor board” that reviews much more advanced cases to map out coordinated treatment plans, but because I don’t have any substantial tumors in the scans, my case wouldn’t come up for review.

Interesting, though, was the fact that the NP and MO both viewed this meeting as me getting a second opinion instead of a hand-off of my case from the urology department to the oncology department. From their perspective, the urology department still has the lead on my case until I decide to move forward with hormone therapy.

One thing the NP brought up early in the conversation was that any treatment plan would have to be aligned with my goals. If my goal was to prevent metastasis (or delay it), then starting hormone therapy sooner would make more sense. But if my goal was to avoid hormone therapy side effects for as long as possible—recognizing the inherent risks—then it may make sense to delay therapy. To be honest, I’m not sure where on that spectrum I want to land.

We wrapped up the meeting, coming to a consensus that:

  • We’ll conduct a PSA test and get a testosterone baseline on 1 May 2024.
  • Calculate the PSA doubling time including the latest results.
  • Evaluate the results and decide whether to schedule another PSMA PET scan.

While I didn’t keep specific track of the meeting, it lasted somewhere between 30 and 45 minutes, which is quite unusual.

I came out of the meeting in good spirits because it was one of the most productive, collaborative meetings I’ve had in a long time. The conversation flowed quite easily, and I attribute that to the fact that women healthcare professionals seem to be much better prepared and much better at listening to a patient’s concerns than some of their male counterparts. This isn’t the first time that I’ve noticed that. (Don’t forget, it was the thoroughness of my female primary care physician that discovered the cancer via a DRE in the first place.)

To be honest, I’m not sure why I felt compelled to mention these observations based on my personal experiences. I just suspect that some prostate cancer patients may be reluctant to discuss problems with their male bits with female healthcare professionals. You might be surprised by the difference in quality of care that you receive, so don’t rule them out.

I have been more than satisfied with my care from the VA so far but, as my cancer advances, I am beginning to wonder if it makes sense to step outside the VA so I can get a team that is dedicated to my case and one that I can build a long-term relationship with.

At the top of my list would be UCSD followed by Scripps/MD Anderson. But the VA already has such close ties to UCSD, it’s almost like I’m getting care from them already. In fact, the MO I saw is a clinical professor of medicine at UCSD, most of the residents I see in urology are from UCSD, and my VA-provided RO is from UCSD but seeing him required “community care” pre-approval. (Community care is generally only approved if the VA doesn’t have the capacity or capability, so it could be tricky arguing to obtain it.)

So while I’m on Medicare and it would be relatively easy (but more expensive) for me to step away from the VA, I would explore options for getting approval to move into community care at the USCD GU medical oncologist through the VA first.

I’m not keen on changing horses in mid-stream, but it may make sense in the long run. I’ll have to think that through.

And now you know why I didn’t want to try and type this out on my phone on Tuesday. 😂 Thanks for reading this far!

Header image: A rare spring snow in Cuyamaca Rancho State Park, San Diego County, California, 14 March 2024

Month 160 – Getting Ready

On By DanIn Hormone Therapy, Prostate Cancer6 Comments

My first meeting with a medical oncologist is a week from Tuesday, on 19 March, so I’ve been putting together a series of questions to ask.

I’d like to leave the meeting with an understanding of whether there’s value in delaying the start of hormone therapy so my PSA can get high enough for a PSMA PET scan to locate the cancer so we know exactly what we’re dealing with, or if it’s better to start hormone therapy sooner rather than later.

I’d also like to understand whether they would want to start with just ADT or with a combination therapy of ADT and antiandrogen therapy and how to manage the side effects from both options.

I’m sure I’ll post an update after the meeting.

On an unrelated general health note, I’ve been pretty faithful about getting in a daily walk this year. I started out with short walks and now I’m up to 6 km / 3.7 miles per day. So far this year, I’ve logged about 240 km / 149 miles. Not bad for this old geezer who was always picked last for the team in school PE classes.

Stay tuned for more.

Understanding Intermittent Hormone Therapy For #ProstateCancer

On By DanIn Hormone Therapy, Prostate Cancer1 Comment

Here’s another informative video about hormone therapy from the Prostate Cancer Research Institute. It answered some of the questions that I had from the previous video. Specifically:

  • Participants in the study were not on continuous hormone therapy as I wrongly inferred from the summary.
  • It is possible to do PSMA PET scans while on a break from hormone therapy if the PSA rises to detectable levels (>1.0 ng/mL).
  • Time to the cancer becoming resistant to the intermittent combination hormone therapy if started in a timely manner can be up to 17 to 18 years.

PCRI Video: Combining First and Second Generation ADT

On By DanIn Hormone Therapy, Prostate Cancer1 Comment

Another timely video from the Prostate Cancer Research Institute talking about the recent EMBARK study that examines combination ADT + enzalutamide therapy versus Lupron alone or enzalutamide alone. (The study was funded by Pfizer and Astellas Pharma, the manufacturers of enzalutamide.)

There were 1,068 patients divided into three groups that were followed for five years. The groups were combination therapy (leuprolide + enzalutamide); leuprolide alone; and enzalutamide alone. The metastasis-free survival rate for each group:

  • Combination therapy: 87.3%
  • Leuprolide alone: 71.4%
  • Enzalutamide alone: 80.0%

One thing the study summary doesn’t address is whether combination therapy accelerates or delays the cancer developing a resistance to ADT. That would be interesting to know. While it doesn’t explicitly say in the summary, it appears that the patients were on the treatments continuously for the five years.

This is something that’s been added to my list of discussion points for my visit with the medical oncologist on 19 March.

Month 159 – Meeting with Urologist

On By DanIn Hormone Therapy, Prostate Cancer, Radiation Therapy, Recurrence3 Comments

Today’s meeting with the urologist went about as I expected it would. In a nutshell, we agreed to punt for another three months and see where we’re at with a new PSA test at that time.

We talked about the clean PSMA PET scan results and the fact that we remain in this inconclusive gray area right now that doesn’t bode well for making decisions about the next steps. He did suggest that I could start ADT now if I wanted to do so, and he debated about whether it would be appropriate to start ADT with abiraterone. He leaned toward just starting without abiraterone if ADT is what I wanted to do, but I also sensed that he felt no need to rush into this given the negative scan results.

One interesting comment that he made (and I wish I had taken better notes) was along the lines of ADT alone has not been shown to extend life expectancy. The unsaid implication was, “Why go through the side effects of ADT now if studies show there’s no discernable difference in the outcome?” That’s something that I need to dig into a little more.

One interesting thing that’s popped up in my conversations with others in prostate cancer forums or here is testosterone level testing. In all my years of being treated, my testosterone level has never been tested, so we talked about that. It’s something that we can do just prior to starting ADT to establish a baseline reference point.

I mentioned my email conversation with the radiation oncologist, and talked about the possibility of zapping a lesion should it show up on a PSMA PET scan in the future. The urologist seemed a bit indifferent to that approach (probably an occupational hazard).

During the conversation, I mentioned that my PSA doubling time using the last four values was at just over six months, and he commented that that was “not insignificant.”

We did discuss whether there was value in knowing where the cancer was located at this point, or to just know that the cancer is somewhere and proceed with systemic treatment without knowing its location. My concern is that starting ADT would make finding the location next to impossible on a PSMA PET scan if my PSA is knocked down to near zero.

He kept using the term “metastatic” throughout the conversation which, I suppose, is technically correct. If the cancer is someplace other than where it started, it’s metastatic. But I’ve also learned that there is a lot of gray area in the prostate cancer world when it comes to classifying how and what your cancer is.

I also asked for a consult with a medical oncologist to get his/her insights on where I’m at and what should be done next and he was going to put that request in for the consult.

I have a three-month follow-up appointment and PSA test scheduled for 14 May 2024, so the saga continues.

About an hour after I returned home from my appointment, the PCRI posted this very timely video on micro-metastatic prostate cancer.

I’ll probably publish this video as a stand-alone post so it’s easier to find.

Header Image: La Jolla Shoreline, La Jolla, California

Androgen Deprivation Therapy and Prostate Cancer

On By DanIn Prostate Cancer6 Comments

With androgen deprivation therapy (ADT) a near certainty in my future, I’ve been trying to get smarter about it. In my research, I came across this video from Dr. Eric Small at the University of California San Francisco (UCSF), that gives an introductory overview of ADT.

If you’re not familiar with some of the lingo and drug names, it may be like taking a sip of water from a fire hose, but Dr. Small gets the concepts across pretty clearly.

After watching the video, my pea-sized brain came up with what may be an oversimplified, imperfect analogy that may make Dr. Small cringe. (I’m happy to be corrected if this analogy is out to lunch!)

We know that prostate cancer needs testosterone to survive and grow, and the testes and adrenal glands both produce testosterone. So how do we cut off the supply of testosterone from those two sources to the cancer cells?

Imagine that the cancer is your backyard swimming pool (even a kiddie pool). Pools (cancer cells) need water (testosterone) to do what they do best. Your testes are one hose that fills the pool, and your adrenal glands are the second hose that fills the pool.

If we don’t want water (testosterone) in the pool (cancer), we shut off the spigots on the hoses to stop the flow. To turn off the spigot from the testes, we use one set of drugs (Lupron, Eligard, Zoladex, Firmagon, or Orgovyx). To turn off the spigot from the adrenal glands, we use a different drug, Abiraterone.

But there’s another way to stop the pool from getting water, and that’s to place a watertight cover over the top of it. That’s what the antiandrogen drugs do—they cover the pool and stop the water from getting in. These drugs are Flutamide, Nilutamide, Bicalutamide, Enzalutamide, Apalutamide, or Darolutamide.

ADT blocks the production of testosterone and antiandrogen drugs prevent the cancer cells from receiving the testosterone.

I’m sure more research is in my future, and I’ll be certain to share what I learn. In the meantime, don’t giggle too much at my analogy.