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!

Prescription for Nerve Pain

I’ve never been a fan of running to the doctor to ask for magic prescription pills that will cure whatever ails me, so when I go to the doctor and they ask this 62-year old patient what prescription medications I’m taking, they look at me in disbelief when I say, “None.” “C’mon. You’ve got to be taking something!” “Nope.” “Really?!?”

That doesn’t mean that I won’t take prescription medications when they’re truly needed. Once prescribed, I’m pretty religious about following the instructions closely.

Well, the prescription that’s supposed to alleviate the nerve pain in my leg from the bulging disc finally arrived today. I opened the package (washed and sanitized my hands) and pulled out the instructions/guidelines—all 88 inches/223 cm of them:

InkedIMG_20200328_122558579_LI

And now you know why I’m not keen on taking prescription meds!

The primary purpose of the drug is as an antidepressant, but it has shown that it has an impact on nerve pain as well. (I prefer not to name the specific medication here.)

The drug can, “improve your mood, sleep, appetite, and energy level and decrease pain due to certain medical conditions.” But then you get to the side effects section and learn that “nausea, dry mouth, constipation, loss of appetite [huh??], tiredness [again, huh??], drowsiness, or increased sweating may occur.”  Oh, yeah. Throw in “dizziness or lightheadedness or falling may occur.” Yippee! There’s a whole laundry list of other side effects that I won’t transcribe here, but the “vomit like coffee grounds, hallucinations, rainbows around lights at night, and blurred vision” sounded particularly interesting.

This also appears to be one of those medications that, once you start it, you stay on it for good. If you have to come off it, it has to be done under supervision and you’re weaned off it over time. I’m not keen about that.

Nonetheless, the pain in my leg is such that I’ll give this a try. Most days, walking without pain really isn’t possible, and I’m beginning to have my sleep quality impacted, because there’s only one or two positions where I’m comfortable in bed. The doctor is trained; I’m not.

One of the reasons that I’m so reluctant to get on prescription medications stems from what my mother went through near the end of her life. Doctors had her on so many different medications that the interactions between them and the side effects drove her to the point of playing detective. She started doing experiments by modifying when she would take them or stopping medications altogether to see if the side effects would disappear. That is not a smart thing to do and something I do not recommend. There were times for her that the medications introduced new problems that weren’t there before. Not good.

I’m supposed to take one pill at bedtime for the first 7 days, then bump it up to two pills at bedtime from there on. I’ll start tomorrow (Sunday) night, that way, if I have any issues with side effects, the clinic will be open Monday to call in. I hope it does the trick for my nerve pain without making anything worse. Stay tuned.


San Diego remains on stay-at-home restrictions in response to the COVID-19 virus, but I did take my 1997 Ford F-150 pickup truck out for a spin today. It’s been sitting in the garage for nearly a month, and I needed to run it to keep the battery charged. I took an hour-long ride around town and never left the vehicle, dutifully maintaining my “social isolation.”

Stay healthy! Stay home!

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.

The New York Times: Debating the Value of PSA Prostate Screening

So I’m sitting in the waiting room at the doctor’s office scrolling through the news on my phone and this pops up. Go figure.

The New York Times: Debating the Value of PSA Prostate Screening.
https://www.nytimes.com/2020/02/24/well/live/prostate-testing-PSA-cancer-screening.html

Day 3,392 – PSA Retest Results

My last PSA test on 4 February showed a 50% drop in my value compared to the previous test in September 2019, which is a major, unexplained swing considering that I haven’t been doing treatments of any type to lower my PSA. It just didn’t sit right with me, so I asked for a retest.

PSA 20200223I went in on 20 February for the retest, and the PSA came back at 0.16 ng/ml, exactly where it was in September 2019. (At least that’s the silver lining in the cloud: it didn’t go even higher.)

We’ll probably never get a good explanation for the dip in my PSA earlier this month, and I guess that’s just part of dealing with this beast. I’m going to leave the errant data point on my chart just to show how wacky this can be at times.

The one thing that this has done, though, is drive my PSA Doubling Time down to 39.7 months according to the Memorial Sloan-Kettering PSADT Calculator (excluding the 0.08 reading). That’s still a very good number, but it’s downward trend over time is becoming more concerning.

I’m really glad that I was able to get the retest done before my appointment with the doctor on Tuesday. It certainly will make for an interesting discussion.

More to come…

Month 111 – PSA Results Are In

Baffled. Completely and utterly baffled.

Excited that my PSA value went from 0.16 ng/ml in September to 0.08 ng/ml last week, but completely thrown for a loop as to how and why a 50% decrease happened (without any treatment or other intervention). The last time I was at 0.08 ng/ml was nearly three years ago in April 2017.

I follow the same routine for a week before each PSA blood test to avoid activities that may influence the outcome. The only difference time was that I had a cold/flu the days before the test (Monday afternoon-Thursday evening; blood draw on Friday morning), but I can’t imagine that having any influence on a PSA number. I’ll ask when I talk to the doctor on 25 February 2020.

I tried updating my PSA Doubling Time using the MSKCC PSADT calculator, and this bumped my PSADT from 43 months to 123 months. There is a caveat, though. The online calculator accepts only PSA values of 0.10 or more, so I rounded up my 0.08 to 0.10 to run the calculation.

I get that there can be lab errors or accuracy concerns as well, but I would be hard-pressed to attribute a 50% shift to a lab issue. Still, when you look at the last four data points on my chart, there is pretty significant fluctuation between each and its previous data point when compared to the quite consistent series of data points prior to that. It makes you go, “Hmm…”

Don’t get me wrong. I’m not complaining about where the PSA is at. I will say, however, that these kinds of wild swings make it challenging to wrap your head around what’s happening in order to prepare for what’s next. I was mentally gearing up for calls to imaging centers and radiation oncologists because I was expecting the result to be in the 0.16 to 0.18 range this time around.

So that’s it. A short post with unexpected, somewhat bizarre results. We’ll see what the doctor says on the 25th.

PSA 20200207

Month 110 – Getting Older

Years ago when I was in my late 40s, I was on one of my infamous road trips through the U.S. Deep South—Mississippi, specifically. I stopped for lunch at a fast food joint, placed my order, and was surprised by how cheap it was. When I got to my seat, I looked at my receipt and it showed “Senior Discount.” I was in my 40s, for crying out loud! I know I didn’t look that old.

Now, about 15 years later, I’m seeking out senior discounts. Or at least one in particular.

In the United States, when you turn 62 years old—as I did last week—you can purchase a lifetime pass that gives you access to all of our national parks for a one-time fee of a mere $80. Within a few hours of turning 62, I was in possession of my lifetime pass. Sweet! Now, I just have to make the time to use it.

My sister came out from Chicago to celebrate my birthday, and it was good to be able to spend some quality time with her, showing her some of the more popular sites in sunny San Diego. She, of course, enjoyed escaping the Chicago winter, even if it was just for a long weekend.

So there are some perks to making one more trip around the sun each year as we grow older. It doesn’t always seem that way on days when joints ache and memory slips a tad (now where are those keys again??), but it certainly beats the alternative.

I’ll be back to reality with my next PSA test in early February. Until then, you may find me in a national park someplace. (Yes, even Death Valley. It’s on my bucket list and now is the time of year to go.)


I’ve been a bit remiss in following my regular posting schedule the last two months. I’ll work to get back on track, posting on the 11th of each month. (Unless I happen to be in a national park.)

 

Life After Radical Prostatectomy: 9 Years Later

So it’s been 9 years since my radical prostatectomy on 4 January 2011. How am I doing?

Status

If you’ve been following along, you know that my PSA has taken a bit of a roller coaster ride over the last few test results, with the trend continuing upward with the last reading at 0.16 ng/ml. I’ve got my next blood draw on the calendar on 4 February 2020 and we’ll just have to see what happens next.

Emotions

Faithful readers of this blog will have noticed that I skipped my regularly scheduled post in December. Part of the reason behind that was I was insanely busy at work, trying to get almost 300 volunteers to staff five events in less than two weeks, and part of it was that I had been pretty successful putting this cancer crap on the back burner for a while, and it felt good.

I don’t necessarily subscribe to the “ignorance is bliss” theory of life, but I think that I’ve been on a subconscious break for a while knowing that the next PSA test will very likely force my hand—enjoying the calm before the storm, so to speak.

Incontinence/Urinary Control

I’ve been pretty much maintaining the status quo in this department for a while now: minor stress incontinence that’s more a nuisance than anything else. Although, when I was down with the flu in November, I was going through three or four pads a day with the severe coughing that I had. It wasn’t fun. (Always good to have a supply of pads in the cupboard.)

There were also a few nights in November and December where I had to empty my bladder 3-5 times in 6 or 7 hours of trying to sleep. Not fun and made for a tough day afterwards. I’m not sure what that was about, as I didn’t increase my fluid intake above normal any of those nights. Thankfully, I’m back to normal and can pretty much sleep through the whole night without needing to run to the toilet.

Sexual Function

The last time I wrote one of these updates, I said that I had been regressing a little in this department, with erections in the 60%-70% range. Things have seemed to improve a little on their own since then, and I’m probably back in the 70%-80% range, with an occasional 90% day.

Summary

I’ll continue to enjoy the calm before the storm for now and we’ll see what happens to my PSA in early February. If it goes up again, referrals to radiation oncologists and lots of imaging will likely be in my future. If it stays the same or decreases again, who knows what path I’ll choose. No need to get ahead of myself right now. We’ll get the results, talk to the medical team, and go from there.