Day 4,178 – PSA Results & Stuff

I went for my pre-physical appointment blood work yesterday and was surprised to have the results back today. It used to take the VA two or three days to post them online.

In any case, my PSA climbed once again from 0.33 ng/mL on 11 March to 0.36 ng/mL yesterday, 18 April. PSA doubling time dropped from 14.4 months to 12.7 months, indicating a continued acceleration which makes sense.

I did schedule my mapping with the radiation oncologist and, in my discussions with the urologist about the PSA test, we agreed to reschedule my 10 May appointment into September after the salvage radiation therapy was completed. My schedule now looks like:

  • 21 April – Appointment with PCP for a lube, oil, and filter change.
  • 3 May – Eligard injection.
  • 16 June – Body mapping with radiation oncologist.
  • 13 September – Urology appointment

We didn’t set an actual start date for the zapping, but I suspect it would be a week or two after the mapping and it would last through July and into August.


My emotions in the last week or so have run the gamut.

I can’t seem to get it out of my head that, once I start down this path, my life as I currently know it will be gone. Much of that is probably unfounded and a gross exaggeration, as the rational part of me knows that the chances for long-term, quality of life-impacting side effects are minimal. Yet the emotional side of my pea-sized brain is dwelling on that and I can’t seem to shake it.

Of course, that leads me to anger over this insidious disease and the impact it has on your life. Aside from the aches and pains associated with my vintage, high mileage body, it’s difficult to reconcile that within me there’s the army of cells wanting to kill me even though I’m feeling generally well. The fact that you have to take drastic action to fight off those cells—again—makes the situation even more aggravating.

Part of this, too, stems from the timing. I retired at the end of October, and there are things I want to do and places I want to go. The uncertainty of not knowing how my body will react to the hormone therapy and salvage radiation makes me hesitant to plunk down $10,000+ for a bucket-list trip to New Zealand now that its borders are beginning to slowly open. Maybe by October (New Zealand’s spring), I’ll know whether I can endure a fourteen-hour flight.

I know that, like the countless men before me, I’ll get past this and adapt accordingly whatever the outcome. What choice do we have? In the interim, I’ll continue to play as my body under treatment allows me to play.

Venting session over. Thanks for listening, and be well.

Month 137 – The Decision

It’s been an interesting few weeks of conversations, concern, and coordination. But first a little digression that has been a factor in this whole process.

When I walked from my home to the radiation oncologist’s (RO) office back in mid-February, the nurse took my vitals and my blood pressure was elevated to the point it both surprised and concerned me (and the nurse). We chalked some of it up to “white coat syndrome,” and left it at that for that visit. Even if it was “white coat syndrome,” it warranted further investigation.

In early March, I started experiencing headaches and even some intermittent numbness of varying intensity on the left side of my face. A bit unnerving. I scheduled an appointment with the VA Urgent Care facility and they checked me out. My blood pressure was still elevated (but not as high as at the RO office), and she didn’t suspect that there was a TIA stroke going on. An MRI confirmed no abnormalities in my brain. (Sorry. I couldn’t resist this classic scene from Young Frankenstein. Anyhow…)

Obviously, trying to figure all of this out took precedence over scheduling salvage radiation therapy (SRT), but it’s also related to SRT and androgen deprivation therapy (ADT) because some studies have shown that there may be an elevated risk of cardiovascular events while on hormone therapy. With an elevated blood pressure and a family history it became a question that I wanted to pose to the RO.

RO Call, Tuesday, 29 March

You may recall that the RO told me that I could use the weekend to think about whether or not I wanted to proceed with concurrent ADT or just do straight radiation therapy. He said he would call me between 8 a.m. and 8:30 a.m. Monday morning for my decision. He didn’t.

However, he did call early Tuesday morning and apologized for missing the call on Monday. He said that the school his kids attend dropped their requirement to wear face masks, and they came home with a common cold and gave it to him. (Justification for continued mask-wearing.)

When we began the conversation, I told him that I was ready to do the concurrent ADT—in line with his thoughts—but I wanted to discuss what was going on with my blood pressure. He said that the cardiovascular risks were “extremely small,” especially with me scheduled to be on ADT for only six months.

I told him about my family history. My dad survived a heart attack at 54 and died in his sleep at 69. We never did an autopsy, but we suspect it was either a blood clot that let loose from major injuries he suffered in a auto accident sixteen months earlier or another heart attack that did him in. My paternal grandmother died at 69 from an aneurism on her heart, and my maternal grandmother died at 66 of a massive stroke.

I also let the RO know that I had been successful in losing 15 lbs. / 7 kg in the last few months and he reminded me that hormone therapy generally leads to weight gain if you’re not very careful.

After all of that, the RO’s enthusiasm for doing concurrent ADT waned and he was more inclined to suggest straight radiation by the end of the call.

At that point in time, though, I had not yet had my MRI—that was scheduled Wednesday evening—and I told the RO that I a) wanted to get the MRI results and b) talk to my primary care physician (PCP) about all of this once he had the results.

PCP Call, Thursday, 31 March 2022

In my call with my PCP, we agreed to put me on medication to help lower my blood pressure as I continue to lose weight. He also was able to give me the MRI results over the phone which surprised me. The technician told me it would take two to three business days to get the results, and he had them in about eighteen hours. Not complaining.

When I specifically asked him about the ADT and associated cardiovascular risks, he, too, said they were minimal. Even so, he was of the mindset to skip the ADT now mainly because of its other well-known side effects of hot flashes, enlarged breasts, weight gain, mood swings, fatigue, etc.

I thought that was interesting.

Urologist Call, Friday, 1 April 2022

Thursday, I emailed the urologist and update on all of this and asked for her insights. She called and we had a good discussion. She, like the others, said the cardiovascular risks were small and that the benefit of doing the ADT concurrent with the SRT was significant. She was definitely in the concurrent ADT camp.

When I spoke with the RO on Tuesday, one of the questions that I had was what drug would they use for the ADT. He thought the VA would use either Lupron® or Eligard®, so I confirmed that with the urologist. It would be a single shot of Eligard® that lasts for six months. Interestingly, she said the SRT could start about a month after the shot; the RO said he’d start SRT about two months after the shot.

I mentioned to her that I have an in-person appointment on 10 May and she suggested I could get the Eligard® shot then. Or, if I wanted to get it sooner, I could call for an earlier appointment.

Urologist Office Call, Monday, 4 April 2022

The Urologist’s office called to schedule the Eligard® injection. It’s set for 3 May 2022.

I did tell the scheduler that I had to have the final conversation with the RO next week, and that I would cancel the appointment if we decided to do the salvage radiation without hormone therapy. He was okay with that.

I will email the urologist to ask for a “before” PSA test to be done as a baseline starting point. I have some other bloodwork on order for my 21 April PCP visit, so I’ll see if the PSA can be added to that order.

Radiation Oncologist Call, Tuesday, 12 April 2022

One thing the RO told me when we last spoke was that he was going on Spring Break vacation with his kids, and wouldn’t be back in the office until 11 April. While he was out, I emailed him a summary of everything above.

We chatted for a good half hour this morning reviewing everything, and with the MRI results not showing anything, he moved back into the “leaning concurrent ADT” camp. His training is to tackle the cancer aggressively.

The Decision

Based everything, I’ve decided to go ahead with the concurrent ADT and SRT.

Barring anything goofy happening, the timeline going forward looks something like this:

  • 18 April – Bloodwork done for PCP visit, hopefully including pre-treatment PSA. (Still trying to get that added to the order.)
  • 21 April – PCP appointment.
  • 3 May – Eligard® injection.
  • 10 May – Previously scheduled in-person appointment with the urologist.
  • Mid-June – Perform body mapping.
  • Mid- to Late June – Start 7 weeks of SRT.

The RO said he’d have his team call me later this week to nail down specific schedules for the mapping and zapping.

Summary

I wish I could say that I was relieved at the end of the call this morning, but I wasn’t. This was committing to a course of action that I really wish I didn’t have to do. Life isn’t fair, I get it. I also get that it’s the right thing to do.

Wish me luck.

Day 4,153 – Radiation Oncology Appointment

The radiation oncologist threw a curveball that I wasn’t expecting at this morning’s appointment.

In a nutshell, he suggested doing concurrent androgen deprivation (hormone) therapy with the salvage radiation. That was not something that we discussed at our first meeting. The ADT would be for six months if done concurrently.

Doing ADT concurrently would give an estimated 10% benefit to the radiation and longer-term PSA reduction according to the doctor. But he also said that my case would also justify doing the salvage radiation alone and holding off on any hormone therapy until after the radiation is completed. He could argue for either option, but was leaning to the more aggressive concurrent therapies.

I asked about the ADT now lessening its effectiveness later when it’s needed most, and he said that six months of ADT would not really make the cancer hormone resistant.

We didn’t do the body mapping this morning based on this little twist, and that’s okay.

He offered to let me contemplate this over the weekend, and he’ll call me Monday morning to answer any further questions and see which option I would prefer.

I have to admit that the acceleration in my PSA increases is making me lean toward the more aggressive concurrent therapy.

If I choose the straight radiation, I’d go back to UCSD and get mapped and begin the actual zapping a few weeks later. If I choose the concurrent therapy, I’d have to go back to the VA San Diego for the shot and then wait up to two months (I have to confirm, I wasn’t in the note-taking mode) before starting the actual radiation back at UCSD.


Whichever option I decide, I learned this morning that I’m going to have to practice the art of bladder filling.

I was told for the mapping session that I should come in with a full bladder, so I started drinking water about an hour before the 8:30 a.m. appointment: about half a liter at 7:30 a.m. and another half a liter around 8 a.m., plus sipping on water in the waiting area.

By the time the nurse called me back to the exam room around 8:45 a.m., my bladder was about to burst and I had to run to the toilet. “Try to keep some of it in you,” she blurted as I scurried out the door. Yeah, right. By the time I was leaving after seeing the doctor (about 9:15 a.m.), I had to make another mad dash to the toilet. This has the potential to be pretty tricky.


On a somewhat related note, I needed a bit of escapism in advance of the appointment, and I noticed that the weather in Tucson, Arizona was going to be around 74° F / 23° C the first half of this week. I wanted to head over to spend some time in Saguaro National Park and Organ Pipe Cactus National Monument. It was a hectic trip, but I had fun and it definitely diverted my attention away from all of this.

If you’re interested, you can check out my report and photos here:

Saguaro National Park and Organ Pipe Cactus National Monument

Month 136 – PSA Results & SRT

Well, kicking the can down the road is no longer an option. My PSA shot up like an Apollo Saturn V rocket (yes, I’m dating myself).

Between 5 January 2022 and 11 March 2022, it jumped from 0.26 ng/mL to 0.33 ng/mL. That’s a 27% increase.

Yes, I had the PSA test done about three weeks sooner than I had planned. I had to see the doctor for another issue, and they did full blood work-up for that. They included the PSA test in that battery of tests, too, so I got my results earlier than expected.

Needless to say, I was hoping that this PSA test would have proved the 0.26 ng/mL to be an outlier, or at least to be consistent, but that wasn’t to be. It’s clear that the rate of increase is accelerating and that’s not good.

Based on that, I called UCSD Radiation Oncology this morning to schedule an appointment with the radiation oncologist to discuss starting salvage radiation therapy. It was a tough call to make on a Monday morning.

On a lighter note, the receptionist who took my call was great (answered on the first ring and went straight to her!—no menu tree to button-push your way through). I am not a morning person, and she was far too bright and chipper for a Monday. When I told her that I was ready to schedule radiation, she responded with a cheerful, “That’s great!!” “You said that far too enthusiastically,” I responded with my stomach in knots at having to make the call in the first place. Oh well.

The enthusiasm continued by scheduling the appointment with the doctor and the body mapping session back-to-back on the same day: Friday, 25 March 2022.

Oh. She gave me a homework assignment, too: Try to have an empty rectum and a full bladder for the mapping.

I will admit that part of me wants to press the doctor about having additional imaging done before we start radiation, but I also know that the cancer continues to grow while we’re waiting for the scan and its results. It doesn’t cost anything to ask the question.

Barring any unforeseen circumstances, the next chapter in this journey is about to begin. Wish me luck.

Day 4,117 – Radiation Oncologist Consult

This afternoon, I took a leisurely stroll down to my local radiation oncologist’s office…

That sounds like the beginning of a really bad joke, but it’s not. I walked the 0.9 mile / 1.5 km walk from my home to the UCSD Radiation Oncology center for my first consult there.

My original appointment was for 3:30 p.m., but at 11:40 a.m., they called and said they had a cancellation and asked if I could come in at 2 p.m. Sure. Let’s get this over with.

The radiation oncologist (RO) was very welcoming and very direct in talking about my options, which I appreciated very much. He’s been pretty much exclusively zapping prostates since 2010, which helped build up confidence in his experience and abilities. When he mentioned that he studied at University of Chicago (my hometown), we got off topic and talked about deep-dish pizza and Italian beef sandwiches for a moment.

The key points from the conversation:

  • He recommended proceeding with the radiation at 70 Gy for 7 weeks (IMRT/IGRT), but thought it wasn’t necessary to begin it immediately.
  • He said given my numbers and the negative PSMA PET scan, he would zap only the prostate bed and not the pelvic lymph nodes.
  • I should not let my PSA get above 0.5 ng/mL before starting radiation. Of course, starting sooner rather than later would be better.
  • The risk of long-term side effects appears to be lower than what I had in my mind.

When talking about the likelihood of success, the RO chuckled a little when I mentioned the nomogram numbers. Apparently, he isn’t a fan of nomograms. When I mentioned that the urologist at the VA said that salvage radiation was possibly curative, he chuckled at that, too. He was pretty blunt when he said that salvage radiation would be a “50-50 crap shoot” when it comes to long-term suppression of the cancer. The reason we do it, though, is to squash it hard enough and long enough to significantly slow its progression and buy years of life.

We talked at length about quality of life and life expectancy. He asked if I expected to be here in 10 years, to which I replied, “I don’t know.” My dad and his mom both died unexpectedly at the age of 69—that’s only 5 years away. Will I follow in their footsteps? Who knows. He thought that not doing salvage radiation may be an option if my chances of not living another 10 years are good. But if I thought I would live beyond 10 years, then do the radiation now.

It was interesting that throughout the discussion, he talked solely about salvage radiation without mentioning hormone therapy other than it being the next step after radiation. But then near the end of the conversation, he recommended six months of hormone therapy for me starting at the end of radiation to “really knock down the cancer.” I’m not sure I was expecting that.

We agreed that it would be okay to wait until my next PSA test in early April to see what that shows. But he reminded me that the cancer is there and it is growing. He offered me his card and said to call if I had any other questions.

All in all, I’m pleased with how the discussion went. The RO’s candor was refreshing and I was impressed with the UCSD staff and facility. I left feeling more at ease than I was when I went in. (In fact, little gremlins were doing a jig in my stomach a good chunk of the morning before the appointment.) Am I 100% sold that this is the path I want to pursue? Not yet. But I’m much closer to it than I was when I woke up this morning.

The whole, “When do you think you’ll die?” conversation was a little unnerving and simultaneously thought-provoking. It’s been a while since I’ve had a full-blown physical, so it may be worth checking under the hood to see if everything is in order before starting radiation.

In my mind, if the April PSA comes back higher than the 0.26 ng/mL in January, I’d be more inclined to start sooner. But if it comes back at the 0.21-0.22 ng/mL that it was in June, July, or October, I may be inclined to kick the can down the road a little longer. I don’t know.

As I told a friend yesterday, it’s time to go sit on a mountain top and process all of this information.

More to come.

Be well!