Tag: Androgen Deprivation Therapy

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.

Hormone Therapy for Prostate Cancer Fact Sheet – NCI

On By DanIn Hormone Therapy, Prostate Cancer, Treatment1 Comment

I came across this fact sheet on hormone therapy from the National Cancer Institute that does a great job of explaining it all to the uninitiated.

https://www.cancer.gov/types/prostate/prostate-hormone-therapy-fact-sheet

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.

Treating Lymph Node #ProstateCancer Metastases | MarkScholzMD

On By DanIn Prostate CancerLeave a comment

Here’s another timely (for me) and educational video from Dr. Scholz and the Prostate Cancer Research Institute.

I have an appointment with the medical oncologist on 19 March, and this has given me a good foundation for the discussion.

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.

Day 4,782 – Doctor Discussions

On By DanIn imaging, Prostate Cancer7 Comments

I’ve had conversations with my radiation oncologist and my urologist this week.

UCSD Radiation Oncologist Discussion

The conversation with the RO was via email, which was fine by me. I’m thankful he takes the time to get back to me. In a nutshell, he said:

  • We’re on the verge of needing to do a PSMA PET scan.
  • We should get the PSMA PET scan before any ADT.1
  • If PSMA PET shows limited site(s) of recurrence, SBRT radiation may be an option to “ablate the larger cancer deposit and work in concert with ADT.”

His recommendation was to get the PSMA PET scan now or to wait one month until early January 2024 and take another PSA test. If it remains steady, “we are good,” but if PSA rises again, it would be time for a PSMA PET scan.

I’ll let him know it took me two months to get my first PSMA PET scan at UCLA after speaking to the scheduling office, so getting it “now” may not be an option.

One other thing I need to nail down is where I can get the scan done again. When I had it in November 2021, the only two facilities in the U.S. that were approved to do the scan were UCLA and UCSF. Since then, far more facilities are capable of doing it, I believe including UCSD.

VA Urologist Discussion

Preparing for the meeting today, I put together an outline of things I wanted to discuss:

  • PSMA PET Scan
    • If the VA would cover the cost this time.
    • If there’s a difference in the tracers used (Ga-68 versus PYLARIFY® (piflufolastat F 18)
  • ADT and the timing
  • Whether they prefer a sequential or combination approach (e.g., include chemotherapy with ADT).
  • Getting a medical oncologist who specializes in prostate cancer involved in the case.

But once I got there, I was definitely off my A-game for some reason, and the conversation was one of the weirder, more disjointed conversations that I’ve had with a VA urologist.

First, he was a new (to me) urologist and he entered the exam room a bit like a bull in a China shop. He didn’t introduce himself and just started out with, “I looked at your PSA and read your email. What questions do you have for me?” Not even so much as a, “Sorry to see your PSA increase after SRT.” That threw me off right there.

It was a bumpy conversation, but we eventually talked about most everything on my list. I’ll save the bit about the scan for last.

Interestingly, he seemed to downplay spot radiation if lesions are found during a scan and was more focused on starting androgen deprivation therapy as the next course of treatment. But he wouldn’t start it until after a scan was completed. He did say under certain specific circumstances, spot radiation may be helpful.

In the discussion about sequential versus combination treatments, he said that they would do a combination. I asked if it would be ADT and chemotherapy, and he said no. It would be ADT and antiandrogen therapy in combination using Eligard for the ADT and one of the following:

I asked about chemotherapy with ADT, and he said that the antiandrogens have taken the place of Docetaxel (Taxotere), which I thought was an odd statement from my limited knowledge. I believe that Taxotere is still very much a treatment option used later in the progression of the cancer. I need to dig into that more.

Concerning shifting my case to a medical oncologist (MO), he said that would happen on its own, as he wasn’t allowed to prescribe the antiandrogen drugs. The MO would also know how to better manage the side effects of the combined therapies.

Now, for the kicker part of the conversation…

He agreed that a PSMA PET scan was the best way forward but—and even he disagreed with this—the VA protocol is to have a bone scan first. The protocol said that, if a bone scan was negative, then a PSMA PET scan could be authorized.

He assured me that, at my PSA level of 0.33 ng/mL, the bone scan would, in fact, be negative. (Doing a quick Dr. Google search, it appears that bone scans start to pick up lesions when the PSA is over 20 ng/mL. Yep, 0.33 vs. 20.

So getting my soapbox and editorializing a bit here… It makes zero sense to get a bone scan in my present circumstances. None. The VA can be very slow to catch up with the times in certain circumstances, and this happens to be one of those times. It just seems to be a waste of time and resources when we already know that the bone scan isn’t sensitive enough to pick up anything at my PSA level. But I’m not sure I’m up for “fighting city hall” to try and get the PSMA PET scan out of the gate.

On a positive note, the VA apparently can now do the PSMA PET scan according to the doctor.

I have to admit that I’m toying with the idea of using my Medicare coverage and going outside the VA for the PSMA PET scan and skipping the VA bone scan altogether. I need to dig into that and see how that would work and how quickly that could happen.

I just want to make sure that I’m not shooting myself in the foot in the process—the VA has to authorize community care in advance for them to continue to cover the costs. I don’t want them to say, “Hey, you chose to go outside the VA system, so now you can pay for all the tests and drugs.” I know Medicare would pick up a good chunk of the costs, but I may be on the hook for more than I bargained for.

The urologist thought the bone scan could be scheduled pretty quickly and, if that’s the case, that may put me closer to a PSMA PET scan faster than if I try to go outside the VA and create new relationships with new providers (although I think my radiation oncologist at UCSD may be able to assist me in ordering one and getting it scheduled).

We ended the conversation with him saying that we’ll do another PSA test in three months. That surprised me a bit given its rapid rise over five weeks. “We know it’s going to increase,” he said, but he did offer to retest in six to eight weeks. I don’t think we ever landed on a firm answer, so I need to chase that down.

In a way, though, it’s probably more important to get the scan(s) done first, and tracking the PSA is secondary to that. Does it really matter if we retest PSA in eight weeks versus twelve weeks? I doubt it.

I left the meeting without:

  • A date to have the bone scan.
  • A follow-up date with the urologist (dependent on scan results).
  • A date for the next PSA test.

Sounds like a productive meeting to me. 😂

One other thing that happened today, which was quite unusual for me, was that I was far more nervous going into it than I should have been. I don’t know what was up with that. I had difficulty articulating my thoughts, and my hand was shaking ever so slightly as I was taking notes. That freaked me out even more. I guess the emotions associated with this new chapter have been a bit more than I expected.

When the meeting was over, I sat in the waiting area for a good ten minutes to just decompress and to scribble down a few more notes while the conversation was fresh in my mind.

Once I calmed down, I went to the Nuclear Medicine department to try to schedule the bone scan, but the scheduler was away and the guy staffing the desk wasn’t familiar with the process. I’ll be back there tomorrow morning for another test2, so I can try scheduling again when I’m there tomorrow.

I’ll keep you posted.

  1. This aligns with what Dr. Scholz says in this video. Taking ADT before the scan may reduce the size of the cancer to the point where the scan can’t pick it up. https://youtu.be/CBILHS0FJfk?si=zaoHCOkm-mWOmdyz&t=525 ↩︎

Month 147 – Delayed Reactions?

On By DanIn Prostate Cancer, Radiation Proctitis, Side Effects14 Comments

It’s hard to believe that it’s been over five months since I wrapped up my salvage radiation therapy (SRT) and concurrent androgen deprivation therapy (ADT). For the most part, things have been good, but two things have popped up along the way. One insignificant, the other has me wondering what the future will hold.

Where Oh Where is My Body Hair?

The first seems to be a delayed reaction of the ADT/hormone therapy which was administered nine months ago on 3 May 2022. It seems the loss of testosterone is taking a toll on my body hair.

Maybe this has been going on for a while and I just now noticed it (I mean, really, who monitors the status of their body hair on a regular basis???).

I wasn’t a very hirsute guy to begin with, but I noticed in the shower the other day that what little chest hair that I did have has been diminished by at least half to two-thirds. A little oddball patch of hair on my back right below my collar line is now pretty much gone, and let’s just say that there’s less hair in a few places further south.

Is it a big deal? Of course not. Just superficial, but I find it interesting that it appears to be happening so long after the Eligard injection. Maybe that’s normal for ADT. I’m not going to worry about it (unless my beard starts falling out, then I may be a little concerned).

GI Changes?

The second issue has to deal with what I’ll probably imprecisely call gastrointestinal changes or perhaps a prelude to the thing I dreaded most: radiation proctitis. Whether they’re related to the radiation therapy or not, I don’t know yet. I thought radiation proctitis took longer to take root, but I could be wrong.

I haven’t changed my diet much compared to pre- and post-radiation, so I don’t think it’s diet causing these issues. (Although I did buy a bag of pistachios recently and, with hindsight, they may have aggravated them.)

Pre-radiation, I was a pretty regular guy when it came to bowel movements. Once in the morning and I was good until the next morning. Now, five months after radiation, I’m noticing that I’m having two to four bowel movements a day about a third to half of the days. Some of those extra bowel movements come on with some urgency. So far, it’s not been an issue or caused an accident, but it does raise some concern as to what it may be like a year or two from now if it is, in fact, related to the radiation therapy.

The other GI issue that has popped up is that I seem to have more intestinal gas than I used to. (And, no, it’s not related to San Diego’s wonderful Mexican cuisine!)

The thing that concerns me about being so gassy is the fact that, when I pass gas, it comes out with less effort than it used to. In fact, sometimes, it almost just slips out and I have to wonder if it’s going to be only gas that comes out, and nothing extra (fart vs. shart). My concern is about rectal control over the long term if I’m experiencing something like this now. Again, something to monitor (you know me—I’ve started a tracking spreadsheet) and discuss with the doctor.

What’s Next?

My last PSA test was on 1 November, and we agreed to check it again in March, so I’ll figure out a date to hit the lab for the bloodwork. You may recall that post-radiation PSAs taken in September and November both came in at 0.05 ng/mL, so we’ll it will be interesting to see if it goes down, stays the same, or goes up again. Any wagers???

I should be meeting with the radiation oncologist again in May for my six-month follow-up from the last meeting.

That’s a Wrap

That’s about it for this month. You may recall that last month, I spent my birthday in Death Valley National Park. After visiting there, I headed over to Zion National Park for a short visit. You can check it out by clicking HERE.

Header Image: Canyon in Zion National Park along the Virgin River