Category: Recurrence

Day 5,635 – Unexpected Call

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

I’m not sure how I managed it, but I picked up a nasty head cold after yesterday’s meeting with the oncologist. Perhaps it was from being at the hospital two days in a row, or from me riding our commuter-packed light rail system to get to the hospital (stops right at the hospital) that did me in, but whatever bug I caught kicked in around 5 p.m. yesterday.

Around 7 p.m. tonight, I was nursing the head cold, watching the ballgame on television when my phone rang, and I was surprised to see it was a call from the VA.

It was the head of the urology department inquiring about continuing my pelvic floor therapy at a community provider. (You may recall that I started that back in December, and the original end date of the therapy was 2 April.) I told her that the therapist and I agreed that I had plateaued and didn’t see a need for me to continue.

Not one to miss an opportunity, I mentioned me meeting with the oncologists yesterday and asked her for her take on whether starting hormone therapy would be appropriate. I also mentioned the negative scan results. She was more of the mindset of waiting until there was evidence of spread, and she said, “I wouldn’t chase numbers,” when I mentioned my current PSA level.

She noted that I had the follow-up with the oncologists on 2 June and a follow-up with urology on 23 June, and said we can review things then.

Once again, the “experts” offer differing approaches, and it’s up to us, the patient, to pick and choose what’s best. After 15 years, it’s not a surprise, but it still is frustrating at times. MO Jr. did mention that it may be appropriate to convene the “Tumor Board” to get all the key players in the same room and review the case for the best course of action.

At this point, I’m inclined to get the PSA test at the end of May and, with that new information, try to push to get everyone in the same room for a discussion of next steps forward. Or at least have them convene the Tumor Board without me.

In the meantime, I’m just going to curl up in a ball and try to get the worst of this head cold behind me before the weekend.

Be well!

Header image: Anza-Borrego Desert, 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 5,623 – FDG 18 PET Scan

On By DanIn imaging, Prostate Cancer, Recurrence2 Comments

Well, that was a surprise at 3 p.m. on Good Friday afternoon.

A resident from the urology department called to let me know that she had reviewed my email with the original urologist and, after consulting with the nuclear medicine department, they came to the conclusion that I made a strong case for me getting an alternate scan.

Unfortunately, the VA doesn’t offer the Axumin scans, but they do offer Fludeoxyglucose F18 (FDG) PET scans which are also reliant on PSMA for the ligand to attach itself to.

She said that the F18 ligand interacts differently than the 68-gallium does, so it’s possible that it will attach to the PSMA molecules on the cancer cells. (In a prostate cancer forum, one patient was in a similar situation. The 68-gallium scans didn’t work for him, but a Pylarify PSMA PET scan did.)

I know from earlier reading that F18 FDG scans aren’t as sensitive and may not work best in a recurrent cancer situation, but they definitely won’t pick anything up if we don’t do them. She offered to put the order in to do one, and I said yes.

I’ll give nuclear medicine a few days next week to receive and process the order before calling them to schedule the scan.

I thanked the doctor at the end of the call and she, in turn, thanked me for advocating for myself.

I’ll post more when the date is scheduled, and I’ll be putting my list of questions together for the medical oncologist appointment on 14 April.

Be well!

A little reading: Is There Utility for FDG PET in Prostate Cancer?

Header image: Anza-Borrego Desert, California

Day 5,615 – Doctor Call

On By DanIn imaging, Prostate Cancer, RecurrenceLeave a comment

As I was driving to the barber to get my hair cut (both of them), my phone rang. Normally, I avoid phone conversations when I’m driving—even the hands-free, Bluetooth variety—but when the Caller ID popped up on the infotainment screen as being the VA Medical Center, I answered because I thought it might be the Oncology scheduler calling to set up an appointment.

Instead, the call was from the urologist I met on Tuesday to talk about his research and efforts to pursue an Axumin scan. (I sent an email to him yesterday saying that I did a little legwork for him and learned that UCSD still does Axumin PET scans in case the VA didn’t.)

In a nutshell, he contacted the VA nuclear medicine department and, according to him, they were very elusive with him in saying whether they even had the ability to do the scan at the VA and, even if they did, if they would do it considering the PSMA PET scans have replaced it in their minds.

Then the doctor again put his faith in the PSMA PET scan and thought that the Axumin scan wouldn’t provide any useful information. He also mentioned that he looked at the 10% of patients not having PSMA protein and said, from his quick research, it seemed to only been identified in a single study. Unfortunately, that was said at a time when I was more focused on driving than listening, and I’m sure I didn’t fully understand what he was trying to convey.

I was finally able to safely park and give 100% of my attention to the conversation, and he said one other thing that puzzled me. He seemed confident that, because my PSA was rising, I did, in fact, have the PSMA protein. I’m not sure that I agree with that and need to do some digging.

We did talk about having a Pylarify PSMA PET scan which uses a different tracer than the 68-Ga-PSMA-11 PET scans. He thought that that could be a possibility, but wasn’t sure that the VA offered it yet. He knew it had been FDA-approved, but thought that the VA hadn’t developed the protocols for its use yet. I mentioned that when I spoke with UCSD yesterday, they said they had the ability to do Pylarify scans, too.

I asked him about how I might get a referral from him/the VA for me to get the scan on my own, and he thought that there may be a number of bureaucratic hoops to jump through to make that happen, including determining if something was “medically necessary.” He wasn’t exactly sure of the process, especially if I was going to use my own insurance (Medicare).

I just wanted him to confirm that, in his view, there was value in getting a scan to learn the location of the cancer and what it’s doing. He agreed.

I told him that my goal was to find the cancer and, if there were one or two lesions, to do spot radiation to knock them down if they’re in a suitable zapping location. That may help delay the start of ADT. (Or not. I’m not sure if they put patients on ADT when going after oligometastatic lesions.)

Finally, he did ask if I had been scheduled with the oncologist yet, and I have not. He was interested in hearing what they had to say about scans.

Needless to say, the waters have been muddied and I’m a little less confident that I know what’s going to happen next.

I’ll send him an email in the morning recapping our conversation, with an emphasis on his agreement that having a scan at this point is important. Translation: Medical necessity. I’ll also let him know that I’m open to trying any scan that he thinks will work.

I may also ask him to explain again why he is convinced that I have the PSMA protein and why he’s skeptical of the 10% number.

I’ll also try to connect with the oncology schedulers and get that appointment on the books.

I may also look at what it takes to get myself in as a patient at UCSD through either their urology or medical oncology departments. Because UCSD did my salvage radiation therapy in 2022, I may still be in their system, so it may be less difficult than starting from scratch. I’ll have to figure out how to share my VA health records with UCSD if needed.

The saga goes on…

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 164 – Prostate Cancer Update

On By DanIn Hormone Therapy, Prostate Cancer, Radiation Therapy, Recurrence9 Comments

To my regular readers, you may want to skip this post. This is a high-level update intended for my family and friends who don’t regularly follow this blog (gasp!), and it will be shared with them via my personal social media accounts. If you’re new here, welcome. Feel free to read away.

It’s been a while since I’ve provided any detailed update on what’s going on in the world of my prostate cancer, so here goes.

We last left our hero two years ago as he began 35 sessions of salvage radiation therapy on 7 July 2022 in attempt to kill off his recurrent prostate cancer after his surgery in January 2011 ultimately failed. Unfortunately, those little cancer cells have proved themselves to be quite resilient, and the salvage radiation therapy has failed, too. Bummer.

We know this by tracking my prostate-specific antigens (PSA) on a regular basis. After the surgery, my PSA level should have dropped to undetectable (zero) because there was no prostate left to produce the PSA. But the PSA can live on in the cancer cells even without a prostate, and that’s how we know the cancer is still there.

After the radiation, my PSA should have dropped substantially, and it did, at least initially. But about 15 months after the radiation ended, my PSA was on the rise again. It rose enough to the surpass the PSA level when we started the radiation. In May 2024, it continued its upward climb to 0.52 ng/mL, the highest it’s been since the surgery. (In the grand scheme of things, it’s still a low value that many fellow prostate cancer patients would love to have, but the fact that it’s doubling about every six months is a concern.)

There is a relatively new scan that can detect prostate cancer cells at fairly low PSA levels. It works best when the PSA is close to 1.0 ng/mL, but it has detected prostate cancer about 30% of the time at PSA levels in the 0.2–0.3 ng/mL range. I went for this PSMA PET scan in January when my PSA was 0.37 ng/mL, and the scan failed to detect anything.

On the one hand, that’s great because there were no signs of metastasis and no evidence of prostate cancer. But on the other hand, we need to know where the cancer is located and what it’s up to in order to plan our next treatment options. Because it didn’t reveal its ugly head, we can’t make any meaningful treatment decisions right now.

If there are one or two small lesions someplace, we may be able to radiate them again depending on their size and location. But if there aren’t any distinct lesions and my PSA continues to increase, that’s likely the result of micrometastases and that would require a systemic treatment approach (e.g., hormone therapy, immunotherapy, chemotherapy, or any combination thereof).

After reviewing my May PSA results with the urologist, we agreed to punt for six months and do another PSA test in late October. I know that seems counterintuitive—letting the cancer continue to grow without taking action—but there’s a reason for it. I’m predicting my PSA at that point will be in the 0.75–1.0 ng/mL range in October, and we’ll do another PSMA PET scan to see if we can determine what’s going on and then plan from there.

Up until this year, all of my conversations have been with the urologist and radiation oncologist. In February, I met with a medical oncologist for the first time because they’re the ones who deal with the systemic treatments.

Based on my conversations with the urologist and medical oncologist, the next logical treatment option is hormone therapy. Prostate cancer lives off of testosterone, so if we kill off the testosterone, we slow the growth of the cancer cells. (Hormone therapy is not curative, however.) But the timing of starting hormone therapy is important.

If we started the hormone therapy now, it would rapidly knock my PSA down so far that it would make it next to impossible to do the PSMA PET scan in November and get any meaningful results.

The other problem with starting hormone therapy too early is that the prostate cancer can become hormone resistant much in the same way that bacteria can become resistant to antibiotics. Start the treatment too early, and you’ll lose its effectiveness when you really need it later.

There seemed to be a differing of opinions between the urologist and the medical oncologist as to what would trigger the start of hormone therapy. The urologist would hold off until there’s evidence of metastasis; the medical oncologist suggested we’d start when my PSA hit 2.0 ng/mL. We can figure that out when the time comes, but both agreed that hormone therapy (and other therapies) can keep me around another 10–15 years (or more).

Of course, my quality of life may be diminished as a result of the treatments. Hormone therapy can come with a whole host of unpleasant side effects such as fatigue, muscle loss, weight gain, loss of libido, hot flashes, etc. No need to rush into that Disneyland of experiences.

Physically, I am feeling fine. I’m completely asymptomatic when it comes to the cancer, but the side effects from the surgery and radiation are present and are a nuisance more than anything. Psychologically, though, it’s been a bit of an emotional roller coaster ride as I go from PSA test to PSA test, and failed treatment option to failed treatment option. We’re closing in on 14 years since diagnosis, and it does get tiring.

One of my regular blog readers and my urologist both suggested that, at this point, I look at my prostate cancer more as a chronic illness than as a life-threatening disease. I’m still trying to embrace that perspective and, even if I do, the worry will never go away.

There you have it. The latest and greatest in this adventure of living with prostate cancer. Follow along if you want to see my monthly updates, and we’ll probably know more right around the holidays.

Be well!

Header image: Lake Michigan coastline from the John Hancock Center, Chicago, Illinois

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 4,923 – PSA Results

On By DanIn Prostate Cancer, Radiation Therapy, Recurrence6 Comments

No surprise here. In my spreadsheet, I put a placeholder value of 0.50 ng/mL for this PSA test based on the previous trend, and the actual result came in slightly higher at 0.52 ng/mL.

The PSA Doubling Time is dropping as well. Using the last five readings and the Memorial Sloan-Kettering PSA Doubling Time calculator, my PSADT was:

  • 6.7 months on 6 December 2023
  • 6.2 months on 19 January 2024
  • 5.1 months on 1 May 2024

It seems safe to say that the salvage radiation therapy failed to do the trick.

I am trying to describe my reaction to this hour-old news. I guess words that I might use would be: numb, indifferent, resigned. I don’t know. It’s a bit weird. I certainly had zero expectation that my PSA would go down or even hold steady given the previous trend.

You may recall the conversation with the medical oncologist suggested that we monitor and do another PSMA PET scan in six months, which would make it August. The question now is, based on these results, do we stick with that plan? Or do we move to the discussion on the type of androgen deprivation therapy and the timing of ADT?

I did ask the phlebotomist if he was drawing blood for a testosterone baseline test and he said yes. I don’t see the results posted online yet (my record is still going through its once-a-day update as I type this).

Well, it’s after midnight. I’ll sleep on this and perhaps I’ll be a tad more focused in the morning after having processed this.

What’s next:

  • 9 May – Appointment with primary care physician (annual physical)
  • 14 May – Appointment with urologist

Header Image: Scenes from San Diego Bay, San Diego, California

Day 4,878 – Medical Oncologist Meeting

On By DanIn Hormone Therapy, Prostate Cancer, Recurrence1 Comment

This will be a Reader’s Digest version of a future longer post. My computer died Sunday night and I’m not keen on trying to type out the full report on my phone’s itty-bitty keyboard.

The bottom line for now is to watch my PSA for the next three to six months, perhaps with another PSMA PET scan in six months if my PSA has increased sufficiently to be reasonably assured that the scan could detect something. I’m okay with that approach.

If my next PSA has a sizable increase, we’ll reevaluate.

The meeting lasted around 30 minutes, so there are more details to share once I get access to a computer again.

I’ll go for a PSA test (and get a testosterone baseline) on 1 May in advance of a 9 May meeting with my primary care physician and a 14 May meeting with the urologist.

With luck, I’ll have a full update by the end of the week.