COVID-19 and prostate cancer management — THE “NEW” PROSTATE CANCER INFOLINK

They’re looking for someone in the U.S. whose treatment has been impacted or delayed by COVID-19.

Do you live in the USA and believe that your prostate cancer care may have been seriously affected by the COVID-19 pandemic?

via COVID-19 and prostate cancer management — THE “NEW” PROSTATE CANCER INFOLINK

Month 116 – Cancer Treatment Decisions

One of my regular readers of this blog and I have amazingly similar stories when it comes to our diagnosis and treatment. We were both diagnosed around the same age, our PSA levels were quite close to each other, and we both opted for surgery. Both of us had undetectable PSAs well after the surgery—until we didn’t. His PSA became detectable around the three year point, and mine became detectable at a few months shy of five years.

He opted to begin salvage radiation therapy (SRT) along with androgen deprivation therapy (ADT) when his PSA hit 0.08 ng/ml. And, if you’ve been following my blog for any amount of time, you already know that I’ve been punting that decision after nearly every PSA test, with my PSA bouncing around in the 0.14-0.16 ng/ml range without seeking SRT or ADT yet.

Who made the right decision?

Both of us.

When cancer is initially introduced into your vocabulary—and even long after—you’ll be faced with a myriad of decisions to make. Is treatment warranted, or can I go on active surveillance? If treatment is needed, do I opt for surgery, radiation, or one of the newer methods available? Which doctor has the most experience? Which hospital has the right equipment? The list goes on and on.

Many of those same questions are applicable in the case of recurrence, too.

When it comes time to make some of those decisions, remember first and foremost that it’s your body, your family, and your circumstances. You—and not anyone else—have the final say.

Do your research using reliable, trusted sources and don’t be afraid to ask the doctor questions or call them out on something you’re not comfortable with. Seek multiple opinions from the doctors that could provide the different treatment options to you (keeping in mind, of course, that some may push their own specialty over others).

Talk to other patients or read their silly blogs to see what their experience has been, knowing that each individual cancer case is unique and will not apply directly to your own situation.

Don’t let the words “prostate cancer” scare you into acting immediately. Unless your Gleason score is an 8 or 9, you do have a bit of time to do this research and consulting with different specialists. I made my decision to have surgery rather quickly and never consulted with a radiation oncologist to see if that would be a viable first treatment option for me. Do I regret that? No. But, with a Gleason 6, I should have slowed things down and have had the meeting anyway.

One of the options that is often overlooked is to do nothing. Okay, it’s not exactly doing nothing—you’ll definitely want to be on active surveillance—but you don’t have to leap right into a treatment option if your cancer is  low grade / not aggressive. My sense is that more and more doctors are beginning to embrace that approach to avoid over-treatment.

That brings me to my final point. Once you make a decision, don’t look back. Embrace it and move forward. If you’ve done your homework correctly, you’ll know in advance what the consequences of that decision may be, and you’ll be more accepting of them if and when they do come.

If my PSA continues to slowly increase and, at some point my body scan lights up like a Christmas tree because I haven’t started SRT, I’ll probably curse like the sailor I once was and say, “I knew this was a possibility. What’s next?” But I’ll also know that I will have had six or seven or more years of high quality of life without any short or long-term side effects from SRT and/or ADT, and that is of great importance to me. As much science as there is in the treatment of prostate cancer, in the end, it’s an educated crap shoot.

Who made the correct decision?

Both of us. One of us. Neither of us.

Time will tell.

Stay Well! Wear A Mask! Wash Your Hands! Stay Home!

Day 3,521 – A Chat with the Doctor

My appointment with the doctor is scheduled for tomorrow afternoon, but after dinner this evening, my phone rang. It was the doctor calling about my appointment.

In a nutshell, VA Medical Center San Diego is trying to reduce the number of in-person visits during COVID-19, so he was wondering if I would be okay chatting with him about my results over the phone. Of course, I was.

He let me know that my PSA dropped from 0.16 to 0.14 ng/ml and that things were pretty “stable” and having a “low PSA” was a good thing. He mentioned that at some point in the future, we may need to discuss radiation, but that point wasn’t now. “For you, that could be years from now.” I’ll take that.

I shared with him my desire to do imaging before zapping if possible. I also brought up the trial at the VA Los Angeles, and he wasn’t aware of it. So I pulled it up and shared the trial number with him for his education / reference.

Bottom line: We agreed to retest in January and go from there.

Now all I have to do is make it through six months of COVID insanity…


On a related note, the VA healthcare system has gotten a bad rap over the years for a variety of things. It seems to be location-dependent, and some of the criticism is well-deserved.

I’ve been going to the VA Medical Center San Diego and its satellite clinics for about 8 years now, and I’ve had nothing but a positive experience, and tonight’s unsolicited call from the doctor just reinforced that for me.

As we used to say in the Navy: Bravo Zulu! (Well done!)

Stay well everyone!

#WearAMask #SocialDistancing #WashYourHands #StayHome

Day 3,508 – PSA Results

Apparently, getting my blood drawn in mid-afternoon adds one day to getting my results. Needless to say, I’m pleased with the 0.14 ng/ml reading. It’s down 0.02 from the last two times (excluding that oddball 0.08 reading in February).

This reading added 10 months to my PSA doubling time, so it’s now out to 48.9 months according to the Memorial Sloan Kettering PSA Doubling Time Calculator.

PSA 20200615

My appointment with the doctor is on 2 July and we’ll see how that goes. I suspect it will be another continue-to-monitor situation, and that’s fine by me.

Have a great weekend and happy Father’s Day to all the dads out there! Stay well!

Day 3,505 – Change in PSA Test Plan

My work schedule forced a little change in plan for getting my PSA test done. I was planning on going first thing tomorrow morning, but a 9:00 a.m. scheduled meeting was a little too close for comfort, and I wasn’t sure that I could make it back to the office in time, so I left work a little early to have the blood drawn.

The clinic did do a COVID-19 screening of me before I could even enter the building, including taking my temperature. Surprisingly, there was no one in line for the lab, so I was in and out in under 10 minutes. I may make going later in the afternoon my new routine going forward. In the mornings, everyone wants to be the first one there, so you can wait for about an hour to get the test done.

If COVID isn’t affecting lab processing and reporting times, I should be able to access my results online after 10 p.m. PST Wednesday.

Month 115 – PSA Time & Imaging Trial for Veterans

Wow. I just may get this post out on time this month! I tell you, this pandemic thing has really thrown me for a loop when it comes to maintaining some sort of routine. Fortunately (or perhaps unfortunately), I’ve returned to working from the office every day for the last three weeks, and that’s brought some structure back to my life.

PSA Time

It’s hard to believe, but four months have passed since my last PSA test, and I’ll be heading off to the clinic on Tuesday morning. I hope. I haven’t actually confirmed that they’ve reopened for routine things like blood tests. If they are open and they do take the sample, I should have the results late Thursday night or Friday. My appointment to go over the results is on 2 July.

Just as a reminder, here’s my PSA roller coaster:

 

PSA 20200223

I’m at the point where I don’t get too worked up about these tests anymore, even with the upward trend. It is what it is and I’ll deal with the number when I get it.

Imaging Trial for Veterans in Los Angeles

The VA Greater Los Angeles Healthcare System is conducting a phase II trial  “to determine whether a positron emission tomography (PET)/computed tomography (CT) scan using 18F-DCFPyL affects the clinical management plan in Veterans.” Some are saying that 18F-DCFPyL may prove to be even better than a Ga-68 scan.

For patients with biochemical recurrence, they want your PSA to be at least 0.2 in a post-radical prostatectomy situation, so unless my PSA jumps up again next week, I’m not eligible. (No, I’m not wanting it to jump up.) The cost is free to veterans and only veterans are eligible. You can learn more about the trial here:

18F-DCFPyL PET/CT Impact on Treatment Strategies for Patients With Prostate Cancer (PROSPYL)

So that’s about it from a toasty 90° F / 32° C San Diego.

Wear a mask. Stay apart. Stay well!

Month 114 – Detectable PSA After Surgery-Treat or Watch?

Well, I missed last month’s post and this month’s is late. You would think that with all the quarantine time on my hands, I would have been a writing fool. Not so.

I did come across this study a while back that talks about PSA coming back after surgery and whether it’s wise to treat or watch.

Low Detectable Prostate Specific Antigen after Radical Prostatectomy—Treat or Watch?

My interpretation of the paper with my specific numbers kind of reinforces what the doctor told me at my last visit: that I’m okay continuing to watch my PSA for now. Others with different numbers may come to a different conclusion. We’re all unique, after all.

I’m scheduled for my next follow-up with the doctor the first week of July, so I’ll have to get my blood drawn for the PSA test in late June, assuming the COVID restrictions are lifted by then.


You may recall my last post where I talked about taking medication to lessen the nerve pain in my leg. I started the medication on 30 March 2020 and I seemed to hit the side effects jackpot. They knocked me for a loop, at least initially (hence, no writing).

Headaches, dry mouth, nausea, diarrhea, and extreme fatigue plagued me the first two weeks, but the good news was that the nerve pain was reduced a good 50% to 70%. The side effects were so troubling in the first few weeks that, by the middle of the third week, I cut the dose in half, but the nerve pain returned.

I’m back on the full dose now, and my body seems to have adapted to a degree. The fatigue is still present, the dry mouth is still there, and the nausea is very mild and only early in the morning. (No, I’m not pregnant.) The pendulum swung in the complete opposite direction on my GI system–constipation is now the norm. Sorry. I’m oversharing once again.

We did discuss physical therapy as part of my treatment plan, but that was just as COVID was rearing its head, so that’s been put on hold for now.


I had been fortunate enough to be able to work from home since 16 March because of COVID-19, but I’ve returned to work in the office at the hospital beginning last week.

On the whole, I’m pretty comfortable being in the office again. Sure, there’s a more risk than just sitting at home, but my office is well away from a high-traffic area of the hospital and I’m literally the only person here. I don’t have to go into any of the wards, and the walk from my office to the exit is relatively short. I probably feel more at risk in the grocery store.

California was one of the first states to impose a stay-at-home order and we’re being very cautious and deliberate in our re-opening. Some will say that we’re being too slow, but not me. Our efforts really did make an impact on controlling the virus. We’ve got nearly 40 million people in the state and we have just over 80,000 positive cases and 3,240 deaths. Contrast that with New York state with 19.5 million residents with over 351,000 positive cases and 28,339 deaths.

No matter how you slice it, though, it’s universally tragic. We’re all anxious to get this under control and behind us.

Stay well!

Checking In

So how’s everyone doing?

Yes, the COVID-19 pandemic has had me cooped up in my house since last Tuesday, working from home doing my job as best I can. In some ways, I’ve been quite productive without the interruptions that I would have in my office. But, as a volunteer manager who suspended our entire volunteer program until further notice, there are limits to what’s available for me to do. Next project: clean up our database of 4,500 volunteers. After that, work on writing standard operating procedures for what I do (at the moment, it’s all in my head).

Here in California, restrictions were slowly tightening until our governor came out with the stay at home restrictions last Thursday. Fortunately, I saw the writing on the wall about a month ago and began slowly stocking my pantry and freezer over time. I’ve got a good 2-3 weeks’ supply of food (lots of chicken breast and soup on the menu), but I’m about out of fresh produce and bread, so I have to figure out what I’m going to to about that. Head to the store myself and risk exposure, or order groceries online for delivery for the first time?

At the start of this COVID-19 pandemic, I would describe myself as concerned, but certainly not panicked. I’m certainly not panicked even now, but my level of concern has increased considerably.

I spend more time on Twitter than I should (don’t judge me), and the first-hand accounts of what it’s like to have COVID-19 are frightening, to say the least. That has made much more cautious about going out now than I was at the beginning of this (hence the possible online ordering of groceries).

I’m lucky enough that, even though it appears that I have recurrent prostate cancer, I’m not taking any medications or treatments that compromise my immune system. Still, I’m in that over-60 years old higher risk group. Minimizing risk just got a lot more important to me.

Speaking of risk groups, in my copious amounts of spare time, I’ve taken the daily San Diego County COVID-19 updates and plopped them into a spreadsheet to make graphs. (You know me. I gotta make graphs.)

The media and experts talk about how COVID-19 impacts the elderly more, but I was surprised to see that, here in San Diego County, many more younger adults have tested positive for the virus. Granted, the sample size is small compared to the global data; still, it was revealing. It was also revealing that men are infected at nearly twice the rate of women. (You can draw your own conclusion as to why that is.)

SD COVID Cases 20200323

Even with all the social distancing we’re doing here in California, I’m guessing that we’re still a good two to three weeks away from “flattening the curve” (especially seeing as there were so many boneheads out on the beaches and in the parks this weekend violating the social distancing/stay-at-home order that the city decided to shut them all down!). I expect these restrictions will last a while longer. Fun.

So that’s about it from here. I hope that you’re doing well and that you’re taking appropriate precautions for your own situations.

Stay well. Stay healthy. Stay sane. Stay home!!

—Dan

Month 112 – Lumbar MRI Update

The results of the MRI that I had two weeks ago to check out my back are in, and it confirmed what I already knew from previous MRIs for the injury, with a few bits of new information.

I knew that I had bulging discs between L3-L4, L4-L5, and L5-S1, but this new report revealed that I also have a mild bulge between L2-L3. In other words, my lumbar region is a mess.

This report, however, identified the likely source of my sciatica and pain. “Disc bulge with superimposed focal right subarticular disc protrusion which contacts and displaces the traversing right S1 nerve root against the enlarged facet.” Yippee! It continues, “Contact/compression of the traversing right S1 nerve root at the L5-S1 level from a focal right subarticular/lateral recess disc protrusion is likely the cause of the patient’s right-sided symptoms.” You don’t say?!?

One positive note about the report is the omission of any discussion of metastasis to the spine. Of course, I’m not sure that an MRI is the best tool to pick up any metastasis unless it’s pretty advanced. Still, I’ll take it.

So what are we going to do about the pinched nerve? I don’t know. My doctor and I have been playing phone tag at the end of last week, so once we connect, we can discuss options.

The Coronavirus/COVID-19 has had an impact on how the VA medical facilities are doing business. They just issued guidance on who can enter their facilities, pretty severely restricting access and encouraging patients to conduct their consults with their physicians by phone or video conferencing if at all possible. That makes sense to me, as long as there isn’t an inordinate delay in connecting. Of course, if you still need to be poked and prodded by your physician, you can still go in as long as you pass the COVID-19 screening and follow the protocols.

In the meanwhile, I’ll just keep hobbling along and wait for my PSA test in late June.

Stay healthy and wash your hands! A lot!!

Day 3,394 – Doctor Visit

Well, I didn’t expect that…

I met with the urologist this afternoon—a new one to my case—and he was personable but very direct.

We talked about the goofy PSA reading and he wasn’t all that concerned about it. It appeared to be lab error and dismissed it as pretty much meaningless. But what followed caught me a little off-guard. “The one thing you absolutely do not want to do is start treatment.” He was quite emphatic. His reasoning was several-fold.

First, he talked about over-treatment given my numbers and pathology. He was looking at how long it took for the PSA to return post-surgery (nearly five years) and how slowly it’s been increasing (PSA doubling time / velocity). Those were positive indicators to him. Treatments like radiation and hormone therapy have side effects that impact quality of life and can be avoided with minimal risk for now.

Second, he expressed concern that if we started treatment too soon, specifically hormone therapy, it would be less effective when we may need it the most.

Third, he mentioned the absolute value of my PSA and how imaging wouldn’t be able to detect where any cancer may be at that level. That’s nothing new to me. We talked about the Ga-68 PSMA trial up at UCLA, and he confirmed that at my PSA level, the chances of finding something meaningful were small (<30%).

Finally, he was very much aware that continued monitoring is needed to make sure that this doesn’t get away from us, and he was content with PSA tests every six months considering how slowly the PSA was increasing. I wasn’t quite comfortable with that, so my next PSA test will be in late June with an appointment on 2 July 2020.

I did mention to him the issues I’ve been having with my back and sciatica, and that I had an MRI last night to have that checked out. I’m 99.5% certain that the problem is related to a back injury that happened in 1986, but that other 0.5% of me was wondering if there was metastasis to the spine. He pretty much dismissed that possibility out of hand given where my PSA level is at. (Hey, my mind wanders into some pretty dark corners sometimes, but given that one of the first place prostate cancer likes to metastasize is the spine, it’s not too far-fetched an idea.)

Again, I was a little taken aback by how emphatic he was concerning not pursuing any treatment at this moment. I got the sense that he really values trying to balance avoiding over-treatment versus quality of life versus knowing when to step in and act. For now, I’m comfortable with continued monitoring with another PSA test in four months.


So, I’ll leave you with a little urology “humor” that has men cringing everywhere.

As I was sitting in the exam room waiting for the doctor, I looked over on the desk and saw the tools of the trade—some lubricating jelly and toilet tissue—at the ready for the dreaded DRE. (The rubber gloves were in dispensers hanging on the wall.)

Then I reminded myself that it was a DRE during a routine physical that discovered the mass on my prostate and started this adventure. Thirty seconds of discomfort can save a life.

IMG_20200225_131804422
Urologist tools of the trade.