Wow. This could not be more applicable to my current circumstances and certainly gives me food for thought.
Wow. This could not be more applicable to my current circumstances and certainly gives me food for thought.
I came across this video highlighting Ga68 PSMA PET imaging from the doctor at the University of California San Francisco who helped with developing this imaging technique. It’s a bit long and a bit technical in some places, but gives a good overview.
I went for my originally scheduled six-month PSA test last Thursday and was able to look online last night to see the disconcerting results: A substantial increase to 0.21 ng/ml.
Breaking the 0.2 ng/ml threshold now officially puts me into the biochemical recurrence category, at least according to the long-held definition of biochemical recurrence.
Needless to say, I felt gut-punched on seeing the results. Sure, I’ve know for over five years that my trend has been upward, but I guess I got comfortable with it bouncing around the 0.10 to 0.16 range for the last few years. I wasn’t expecting such a substantial leap between my “surprise” PSA test in February and this one in June.
When it comes to PSA doubling time, it dropped from 67.7 months to 52.8 months with this latest test result included in the calculations. If I look at only the five most recent test results, the PSA doubling time drops to 46.5 months. Of course, all of those are great numbers that a lot of guys would like to have.
My appointment with the doctor isn’t until 6 July, and it will be an interesting conversation now that we’ve crossed that magical line of 0.2 ng/ml. In a way, I’m glad I’ve got several weeks to think this through and to come up with good questions to ask so that I’m prepared for the appointment.
Of course, salvage radiation therapy just moved to the top of the list of things to talk about. It will be interesting to see if their recommendation changes given the 0.21 number versus the long PSA doubling time.
Needless to say, there’s going to be much reflection and research in the weeks ahead.
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.
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.
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.
Tuesday’s meeting with the urologist was a bit anticlimactic. In a nutshell, we’re returning to the four-month test cycle and we’ll see what the next test will bring in late January or early February before we do anything.
The doctor had no explanation for the swings in my PSA level from 0.13 to 0.10 to 0.16 and reminded me that there could be a margin of error on the readings. (But he couldn’t quantify what that +/- error might be using the assay that they’re using.) He mentioned that riding a bike, other mild “trauma” to the pelvic region, or sexual activity before a PSA test could affect the results. That’s something that I already knew, so I make it a point to avoid any of that for at least a week before the blood sample is drawn to avoid introducing that variable to the picture.
He also reminded me that the historical definition of biochemical recurrence has been 0.20 ng/ml and suggested that it was premature to start thinking about salvage radiation therapy. Even so, he acknowledged that my PSA is definitely trending upward and worthy of continued monitoring so that it “doesn’t get away from us.” He suggested it would be fine to retest in six months; I opted for four.
One of the reasons that he was so comfortable with a longer test cycle and continued monitoring was my lengthy PSA doubling time. He also talked about the possibility that this could be residual benign prostate tissue left behind after the surgery that could be causing the PSA to increase again.
I filled him in on the Ga-68 PSMA PET/CT scan trial going on at UCLA and the option to shell out $2,800 to have the scan done outside of the trial. We talked a little about the successful detection rates at my PSA levels, to which he replied, “You know more about it than I do.”
We also spoke briefly about the potential long-term side effects of salvage radiation therapy, as well as the success rates of having no evidence of disease five years later. Nothing new was learned there.
On the whole, I’m generally on board with this approach—for now. But I will say that, mentally, I prepared myself for the meeting to go in a different direction, so I’m still processing that. If I’m perfectly honest, I’m a teeny bit less confident that waiting another four months is appropriate.
It’s as though I’m taking another step on a tight rope with each successive PSA test. The further out I go, the more the rope sways and it’s just a question of how long I can maintain my balance. Can I make it all the way across, or will I lose my balance and tumble into the abyss of metastasis?
Sure, I can opt to use my emergency safety harness—salvage radiation therapy—at any time, but that comes with costs potentially impacting quality of life: increased incontinence, loss of sexual function, scarring from radiation, etc. And—guess what?—at the end of it, I’ll be back on another tightrope taking another step every 3-6 months with new tests to monitor the effectiveness of salvage radiation. (And there’s a 30%-70% chance that I’ll fall off that tight rope into the abyss, too, depending on which study you look at.)
The trick is knowing when to decide whether you should keep walking on the original tight rope or that it’s time to jump into the safety harness. That decision is complicated by your coaches on the ground yelling conflicting things at you. Coach Radiation Oncologist is yelling, “Use the harness!” and Coach Urologist is yelling, “Keep walking!” Your own mind, filled with reliable information you gathered from Dr. Google, is adding to the confusion. It can be maddening to try and sort through it all and make the best decision possible.
That thought led to the last point of discussion with the urologist on Tuesday. He acknowledged that the field of prostate cancer research is a very dynamic one, and that there’s often conflicting guidance as new therapies are being tested and new discoveries are made. He also reinforced that prostate cancer is an insidious disease in how it behaves and how challenging it can be to treat it.
Prostate cancer is not an “easy cancer.” Far from it.
One of the cool things about working in a hospital is that I can access full versions of some of the scholarly articles on prostate cancer that are normally blocked to the public by their publishers. At the end of the day today, I pulled the full versions of each of these articles for a little light bedtime reading about salvage radiation therapy, toxicities, and imaging:
I skimmed a couple of them on the bus ride home this evening (as much as you can skim on a bouncing bus), and I’ll go through each in a little more detail before my appointment a week from tomorrow.
When I pull articles like this, I consider a few things when reading them:
So I’ll be going through each article, gleaning whatever I think may be of value for the appointment, adding to my list of questions to be asked.
Please don’t ask me to share the full versions of the articles here or elsewhere. Not only am I cancer-averse, I’m litigation averse. I’m not keen on a copyright infringement lawsuit because I posted something on this blog/website that I didn’t have permission to do. 🙂
That said, I may try to summarize some of the findings in future posts, with full attribution of any quotes, of course.
Off to read a bedtime story or two…
A little over a week ago, I hopped online around 10 p.m., checked my latest PSA results, and wrote my last blog post. None of that made for a good bedtime story.
The next day, I was exhausted from not sleeping well after receiving the news—so exhausted that I skipped out from work about an hour and a half early so I could go home and rest. Ever since then, I’ve been fine. I’ve accepted the new number and the fact that, once again, the only thing that I can control is how I react to it. In my heart, I expected the number to go up from the last test, and it did.
I did take a little time to search for some newer articles about salvage radiation therapy but they, like the PSA results, didn’t make for good bedtime reading either, so I put that on hold for now. I’ll be working on my list of questions for the doctor on 22 October, and we’ll go from there.
I’m pretty sure the writing is on the wall that that salvage radiation is in my future. It will take a while to get appointments set up for the radiation oncologist and to do any imaging that we can, and when you throw in the approaching holidays, I just don’t see radiation starting before the end of the year. I could be wrong. (Or, if things do happen quickly, I may just force the start to the beginning of the new year. Who wants to be getting zapped through the holidays? Seriously.)
In the mean time, I’m doing okay. Really. Just one appointment and test result at a time…
I jumped the gun and got my PSA test done about a week earlier than I planned. I had a appointment scheduled on Monday to follow-up on my thumb surgery back in February , and I thought I would kill two birds with one stone and get the blood drawn after my appointment.
About 9:00 a.m., the doctor that I had my 1:30 p.m. appointment with called to check in and see how I was doing and if I really needed to come in. “How’s your thumb?” “Still attached and working,” I replied. After a brief discussion in more detail, we mutually agreed that there was no need for me to come into the office.
That kind of put a damper on my getting two birds with one stone, but I decided that I would go to the lab anyway, as I had already planned the afternoon off. It just made sense.
I wish I hadn’t.
My PSA took a considerable jump up to 0.16 ng/ml. I wasn’t expecting that.
The trend function on my spiffy spreadsheet thought it would come in around 0.137 ng/ml so that’s kind of where I had prepared myself to be mentally.
I used the Memorial Sloan Kettering PSA Doubling Time calculator to recalculate my PSA doubling time (it uses values of only 0.10 ng/ml and above), and my PSADT dropped from 155.6 months to 43.1 months. Still a respectable number, but definitely moving in the wrong direction.
Needless to say, this sucks.
My appointment with the urologist is on 22 October and we’ll definitely talk about imaging possibilities and ask for another referral back to a radiation oncologist to discuss salvage radiation therapy.
I came across this article in one of my feeds. There isn’t an “Ah-ha!” moment in it, but it’s good to see research confirming what many have known with data.
A new paper in Clinical Genitourinary Cancer has provided us with some more detailed information about risk for metastasis in men with recurrent prostate cancer after first-line surgery.