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.
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:
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
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.
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
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:
Halloween threw an evil trick at me just ahead of my 13th anniversary of being diagnosed: My PSA nearly doubled, jumping from 0.11 ng/mL to 0.21 ng/mL in just under six months (9 May 2023 – 31 October 2023).
Needless to say, that was not the result I was expecting. I was hoping the salvage radiation and androgen deprivation therapy from the summer of 2022 would have helped put this crap behind me or at least do a better job of controlling it.
I’m trying hard not to get ahead of myself, but the answer seems pretty obvious: the cancer survived the zapping and is thriving. For me, the fact that it essentially doubled in six months is the biggest concern. If my PSA drifted back up to 0.13 ng/mL, even I would say that I was getting ahead of myself, but it doubling is something else—something more conclusive.
Another factor making me think this is the “real deal” is how rapidly my PSA shot up in the months before the SRT. It went from 0.22 ng/mL on 14 October 2021 to 0.36 ng/mL six months later on 18 April 2022.
From my lay person perspective, this is significant because it means that the window on curative options is closing (closed?) and, going forward, we’ll be more focused on management options that try to slow the inevitable growth of the cancer.
It’s not all doom-and-gloom, though. There are plenty of prostate cancer patients who have been on systemic treatments (hormone therapy) for a decade or longer, keeping their cancer in check. The problem is the side effects of the treatment can substantially impact quality of life, and there’s the chance that the cancer becomes resistant to the hormone therapy, much in the same way that bacteria become resistant to antibiotics.
I have an appointment next week on 9 November with my primary care physician, and with the urologist on 14 December, and it will be interesting to hear each of their perspectives. I emailed the radiation oncologist and get his take, too, while also asking for a refund.
Again, from my limited knowledge and perspective gained by dealing with this for thirteen years, I suspect the doctors will tell me:
All of those options come with potentially significant impacts on quality of life.
This was a crappy end to an equally crappy month.
On Friday, 13 October (lucky day), I found myself in the Emergency Room with symptoms indicating a cardiac event might be happening. Fortunately, there was no sign of heart attack or stroke. The symptoms puzzled the ER doctor, so he prescribed that I wear a Zio patch continuous heart rhythm monitor for two weeks to see if it catches any irregularities. That comes off on Monday, 6 November and will be sent off for analysis.
The kicker, though, was that I had scheduled an 18-day bucket list trip to New Zealand departing the following Monday, 16 October. I still had some minor symptoms on Saturday morning, so I decided the best and safest course of action was to cancel the trip. (Thankfully, I booked a mostly refundable ticket, and had travel insurance for the remainder.) Disappointing, to say the least.
Perhaps it was meant to be, because an expensive plumbing issue arose at my house that would have needed to have been addressed while I was away.
And now, to put the icing on my October crap cake, my PSA doubles. Ugh.
I won’t lie. When I saw the results online, the news hit hard. I was hoping that it would have continued its downward trend, but I also knew that it could go up, too. I just wasn’t expecting it to go up that much so soon. I would have been happy if the salvage radiation had my PSA hanging out at 0.11 ng/mL for the next decade or so. But I guess that’s not meant to be.
To be transparent, I did question for a moment whether holding off on SRT as long as I did was the wrong decision, but I quickly cast that thought aside. I made that decision with the information I had at the time, and with a desire to avoid treatment side effects for as long as I could. Whether it was right or wrong, no one can say. I’m here now and will have to deal with the present facts. No amount of second-guessing will ever change that, so it’s not worth the effort or energy to do so.
What I’m regretting more at the moment, is cancelling the trip to New Zealand. If a PSA test in December or January shows continued increases in my PSA, I’m guessing that we’d start hormone therapy at the very least. Traveling great distances for a long period while on hormone therapy may not make for the best experience. We’ll see. (Aside from the fatigue and heightened emotions, I seem to have tolerated the Eligard fairly well compared to many.)
Lastly, I’m going to have to do more research on what my options will be and what the current treatment protocols are for someone in my situation.
My summer and early autumn hiatus away from posting on this blog—a refreshing break from cancer—appears to be ending as I start what is likely the next chapter in this story. Stay tuned for more.
Header image: Imperial Beach Pier at sunrise; Imperial Beach, California
Okay. If this keeps up or gets worse, the fun will definitely be over. <sarcasm font>
Friday’s zapping session went amazingly well. From the time I closed my garage door, drove to the facility, got zapped, drove home, and opened the garage door it was 27 minutes. Total. We’re in the groove.
The kicker came in the afternoon.
My energy level just dropped to near zero and I went into a Rip van Winkle-like sleep for the whole afternoon. Not good. Even after the long nap, I was still pretty lethargic in the evening.
This morning (Saturday) was a different story. I was pretty energetic and worked on organizing my home office up until about noon. But about an hour into it, my energy level hit a brick wall and I was horizontal on the sofa again for a nap that lasted about ninety minutes.
The nap gave me a second wind of energy, but just a few short hours later around 6:30 p.m., I was dragging anchor again. (I’m powering through it right now as I write this so I’m not up all night because I napped this evening.)
I’m sure it’s a combination of the hormone therapy (started twelve weeks ago), the radiation, and the fact that I’m running to the toilet two to four times a night that’s causing all this. I’ve even started going to bed about two hours earlier than normal to try and make up for the sleep deficit through the night.
So, yes, I’m fatigued by the fatigue. I won’t say it’s incapacitating because I have pushed myself through a few low-energy sessions, but it is having an impact on my routine. I can only imagine what it will be like in three to five weeks if it keeps up like this. Sheesh! But, on the positive side: No hot flashes!
Monday’s session will be the one-third mark for the treatment. I guess that’s something to celebrate.
Be well!
It’s been almost six weeks since my very first Eligard injection on 3 May 2022, and it appears that some of the side effects are kicking in. There are also some other things that I’m experiencing that I’m questioning. But first, a little detour…
I just returned from a monster 16-day, 5,357 mile / 8,621 km road trip from San Diego to Chicago and back. Each Memorial Day weekend, my sister and her family gather at a small lakeside resort in southern Illinois, along with a few mutual friends and their families. As I hadn’t seen some of my family members in four or five years, I decided it was time to return.
Not knowing what the side effects from the upcoming radiation and hormone therapy will be, I decided to have one last giant road trip fling for what may be the next year or so. If it works out that I can travel again this autumn, great. But I just didn’t want to leave things to chance.
[The photo above is Trout Lake in the San Juan Mountains of Colorado.]
Now back to Eligard side effects…
Fatigue is the most prominent side effect. I’m constantly tired to varying degrees, and there are times where I just push through it and there are times where I simply give in and take a nap. Thankfully, these really didn’t start kicking in until the tail end of my road trip on my return to San Diego.
I’ve also noticed a slight increase in the number of trips I make to the toilet in the night. The last six to nine months, things had settled down to where I could sleep through the night or make one trip. Now, though, I’m in the one to three trips per night range, with one night being four trips. That certainly doesn’t help with the fatigue.
On the positive side, hot flashes have not kicked in yet. That’s great because things are beginning to heat up for the summer here in San Diego and the last thing I need are hot flashes when it’s 90°+ F / 32°+ C outside.
There are two other things that I wasn’t sure if they’re related to the Eligard or not.
First, I’ve had a dull ache in my groin and testicles and, second, I’ve had this general, low-grade musculoskeletal ache in the right side of my torso. Both seemed to kick in on my return to San Diego.
I emailed these symptoms to my urologist, asking if they could be caused by the Eligard, and she didn’t seem to think so. She ordered an ultrasound of my testicles to see what may be happening there (scheduled for Tuesday), and referred me to my primary care physician about the ache in the torso. She didn’t see any reason why either should delay the salvage radiation therapy (mapping scheduled for Thursday).
My biggest concern about the mapping on Thursday is the timing of filling my bladder and being able to hold it during the process. Often, when my bladder is really full, there’s a strong sense of urgency to empty it, and there’s little time for error.
That’s about it for now. More to come after the mapping and, as soon as I figure out why Adobe Lightroom (photo editing software) is acting up on my computer, I’ll get my travel blog updated with my trip’s photos.
Be well!
It’s been just over a week since I’ve been injected with my Death to Testosterone juice, a.k.a., Eligard, and things seem to be going okay so far.
The injection site was through being sore within a matter of hours after the injection, so that was a positive thing. (My arm was sore from my second COVID booster for about 48 hours after that injection.)
About the only real side effect from the Eligard that has kicked in is a bit of tiredness or fatigue. It’s as though I’m firing on seven out of eight cylinders right most of the time. Nothing that is debilitating, but it is noticeable. No hot flashes or wild mood swings yet.
I did email the radiation oncologist to let him know that I did, in fact, get the injection, and his response kind of hinted at the fact that it may take a few weeks for the Eligard side effects to really kick in. Time will tell.
As a diversion to all of this, I spent the afternoon watching the my hometown Chicago Cubs take on my adopted hometown San Diego Padres at beautiful Petco Park. I can’t say that I’m a huge baseball fan, so this is a once-every-few-years thing that I do when the Cubbies come to town. One day, I’ll make it to Wrigley Field for the first time ever (blasphemy that I haven’t been, I know).
I’ve got a few other fun things lined up between now and the start of the Zap Fest in late June and hopefully the Eligard side effects don’t kick in and ruin those plans.
A few photos from the game today.
Be well!
You may want to turn down the volume before playing. The pre-game music was a bit loud.
This morning was not fun at all.
I checked in at 7:30 a.m. for my 8 a.m. appointment and was a bit nervous but doing generally okay. But around 8:05 a.m., the nurse came out and said, “I know you’re here for some medication, but the doctor forgot to enter the order for it to be administered into your record. We’re trying to track her down now and we’re not sure how long it will take.”
Needless to say, I was not a happy camper.
About 8:45 a.m., the nurse came back out to the waiting area for another patient, and I interrupted and asked him the status of tracking down the doctor. “Oh. We haven’t found her yet. We’re trying to contact any doctor but most don’t come in until after 9 a.m.”
Still not a happy camper.
As you all know, I’ve anguished over the decision to move forward with androgen deprivation therapy (ADT) for a while now. Once you make that decision, you want to move forward with it and psychologically prepare yourself for the event. When you’re given an extra hour and a half, your mind begins to race and to question whether to move forward with this essentially irreversible procedure. At least that’s what my mind did. Call me silly.
The injection itself went well. In fact, it was not much worse than getting my second COVID booster shot last week (or any vaccination). It’s been about three hours since the injection, and the injection site isn’t even sore. It was pretty much a non-event. Time will tell what other side effects will kick in, and how severe they may be.
Well, the stress from this morning has worn me out. Time for a little nap.
More to come, I’m sure.
Be well!
