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?
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?
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!
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.
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.
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…
Last Thursday, a physician came into our office (keep in mind my office is in a hospital) and was asking about how to bring a volunteer on board to shadow him in radiation oncology. Of course, my ears picked up with the “radiation oncology” part of his request.
After explaining the process to bring his volunteer on board, I asked him if Dr. W was still in radiation oncology. Dr. W was the radiation oncologist that I saw in May 2018 to discuss my rising PSA, and he told me then that he planned on retiring in the next year or so. Dr. W had, in fact, retired according to Dr. B, the physician with the volunteer question.
Dr. B asked how it was that I knew of Dr. W, so I explained that I had the consult with him for getting zapped for recurrent prostate cancer. A bit to my surprise, Dr. B started asking a question or two and, the next thing you know, we’re having a ten minute consultation in the lobby of my office.
In a nutshell:
At the end of the conversation, he was saying a treatment decision is also based on life expectancy and overall general health. Nothing new here. If I was 85 and had a cardiac condition, he wouldn’t recommend zapping; but if I’m younger and in generally good health, he would treat. “I would get treated if it were me.”
I thanked him profusely for taking the time to have a hallway consult when he was under no obligation to do so. I told him that I have another PSA test coming up at the beginning of October, and that we’ll see what that brings.
Now for the funny part and insights into how twisted my thinking can be at times…
Dr. B’s comment about life expectancy struck a chord with me because it’s something that I often joke about.
My father died at the age of 69 and his mother also died at the age of 69, so I’ve always joked that I’ll follow in their footsteps and die at 69, too. “It’s hereditary,” I’d say. Most would find it pretty morbid and tell me to knock it off.
If you’ve been reading this blog for longer than three minutes, you know I’m a numbers guy (see post title). So on the bus ride home after speaking to Dr. B, curiosity got the better of me. I wondered how freaky it would be if my father and grandmother lived the same number of days in their 69-year lives. When I got home, I ran the numbers.
I plugged their birth and death dates into the duration calculator that I use to calculate the day number of these impromptu posts and found that they didn’t live the exact same number of days, but it was close. Dad outlived Oma by 49 days.
You know I couldn’t just leave it there.
If I live as long as my grandmother, I’ll be checking out of Hotel California on 29 July 2027. If I live as long as dad, it will be 16 September 2027. If I follow Dad’s trend an outlive him by 49 days, it will be 4 November 2027.
And then I had my “Oh, shit!” moment.
I may have less time remaining than the amount of time that I’ve been running this blog—3,029 days (best case) vs. 3,175 days.
I began to wonder what I will do in those eight remaining years. If I have only one big trip a year, what are the eight places I want to go see? How many more times will I see the people important to me if we see each other only once ever 1-3 years? How much longer will I continue to work?
I know it’s cliché as hell, but it was a bit of a wake-up call to get me off my butt and doing more than I am right now. Nothing like having a deadline to motivate you, eh?
I also know that there are no guarantees. I could get hit by a car crossing the street tomorrow, or I could live until I’m 90. I don’t dwell on any of this, but it’s nice to be reminded—albeit in a twisted way—that none of us are getting out of here alive, no matter how hard we try to avoid the inevitable, and that the days we have left should be cherished and embraced, whether in ways big or small.
Oh. If I make it to 5 November 2027, everything from then on is icing on the cake. 🙂
It was bound to happen. The other day I ran into my radiation oncologist in the little convenience store in the hospital where both of us work. It was kind of funny. There was his initial reaction when he saw me and recalled who I was, “Hey, howyadoin’?” he asked, followed quickly by a slight tinge of panic wondering if I was going to assault him with a battery of follow-up questions right next to the granola bars and packaged nuts. I didn’t. “Hi, Doc! How are you?” is all I replied, much to his relief, I’m sure.
A few days later, I was back in the convenience store standing in line behind a bearded 30-something guy in black scrubs. I commented, “Black scrubs? I don’t know that I’d want you coming into my room if I were a patient here. It would look like the Grim Reaper is coming to pay a visit.” (For being a terminal introvert, I can be good at striking up conversations with complete strangers.) He laughed and we chatted some more. “Where do you work?” I asked. “Radiation Oncology, so I suppose the black scrubs take on added meaning there.” He was one of their radiation technicians, and I didn’t bother to tell him that he may be zapping me someday soon.
All of that has highlighted me to resolve another internal debate that I’ve been having with myself: Whether or not to inform my coworkers of my recurrence.
I work for a small nonprofit that has a staff of 22 employees, plus, more and more staff members at the hospital know me because of the reach that our organization has there. In essence, we’re family. If I do choose to get zapped 75 steps away from my office, the chances of someone I work with seeing me entering or leaving Radiation Oncology are pretty good. “Surprise!”
Beyond that, I questioned why I want to share this with my work family. To have more shoulders to lean on? To let them know why I’m so distracted and distant some days? If I’m perfectly honest with myself, it’s a little bit of all of that. But I also know from experience that, when I shared my story with my coworkers shortly after being initially diagnosed, a burden had been lifted from my shoulders. “A burden shared is a burden halved,” someone once said, and there’s truth in that.
I was all set to share my story until tragedy struck when one of our staff members passed away unexpectedly. That put my little plan on pause, appropriately so.
Part of me is thankful for the pause. On reflection, I may be putting additional indirect pressure on the decision-making. If I’ve got 44 eyeballs looking at this introvert in anticipation of a decision, that could be nerve-wracking. Perhaps it’s best to wait to share my story until after I make the decision, that way there won’t be the second-guessing that comes when people question your choice, if not overtly, at least by that puzzled glance.
Speaking of the decision, I don’t know that I’m any closer to it. I continue to research for a few hours each week, reading articles and journals, and I’m coming to the conclusion that I probably have enough information on the treatment and its side effects to make the call. I’m not going to find that magical “a-ha” paper that swings the decision one way or the other.
One of the hang-ups that I have though, is the lack of ability to determine where the cancer is at my current PSA levels. I really would like to know with a high degree of confidence that we’re zapping in the right place. Yet, one article sticks in my mind where the author wrote, “That would be a self-fulfilling prophecy: by waiting for the cancer to put out more PSA [so the imaging could detect it], one is virtually ensuring that the cancer will grow, spread, and possibly metastasize.” Food for thought.
In my head, I’m thinking we wait for the August PSA results and go from there. Perhaps take a nice autumn vacation and, if I choose to get zapped, do so not long after I return. Or not. (Definitely the vacation part, though. I need that!)
What brought this on? Another email exchange between me and my radiation oncologist.
Over the weekend, a few more questions popped into my head and I wanted to get his response. Yesterday, I fired off an email asking if any advances in radiation delivery technology or methods in the last 10-15 years improved the side effect outcomes over the studies he shared with me. In short, the answer was no—there were no appreciable changes.
Of greater interest to me was his interpretation of the Freedland study, which shows that I can do nothing and have a 94% chance of being around 15 years from now. His response:
I am familiar with the study you included, and it is one of many retrospective reviews on this subject. The authors preformed a retrospective review on a total 379 patients over period of 18 years from 1982 – 2000. Therefore, although the data are valuable and contribute to the literature, I consider it (as well as the many other studies on this subject) thought provoking.
Perhaps I’m reading too much between the lines, but his last sentence translates into “skeptical of the study” to me. He continued:
The bottom line is that you have a biochemical recurrence with a low, slowly rising PSA. Do you need radiation treatment now, sometime in the future or never? I don’t have a definitive answer to that question, but there are data to suggest “the earlier the better” and other data to suggest treatment might not be needed at all. It depends on your point of view…
Am I upset by that response? Not really. It’s pretty much what I expected it to be, and that tells me that my research has been quite thorough. He and I both landed at the same place.
Will it make deciding my course of action any easier? Hell no. But it does reinforce that it’s my decision, and my decision alone.
Now where did I put those Eisenhower dollar coins again???
It’s 7:30 p.m. on the Saturday of a three-day holiday weekend in the United States, and I’m reading articles on salvage radiation therapy. Who said prostate cancer wasn’t fun?!?
I did come across this informative article from the Journal of Clinical Oncology published in May 2007:
The authors set out to create a nomogram that predicted the “probability of cancer control at 6 years after SRT for PSA-defined recurrence,” and they speak at length about the variables used in their nomogram, as well as its limitations.
I plugged my stats into their nomogram and came up with a 70% probability that I won’t see any progression at six years. That’s right in line with what the radiation oncologist told me. (The nomogram is a little clunky to use, as it’s a graphical scale that you have to draw lines through to determine your score. I’d much rather have fields to enter on an online form that calculates it more precisely.)
There was one paragraph that talked about side effects of SRT that really caught my attention:
The potential for morbidity resulting from radiation therapy argues against its indiscriminate use in the salvage setting. Mild to moderate acute rectal and genitourinary toxicity is seen in the majority of patients, but the reported incidence of acute grade 3 to 4 complications is less than 4%.4,6,9,14,21,36 Late grade 1 to 2 rectal and genitourinary toxicity are reported in 5% to 20% of patients, and late grade 3 toxicity is less than 4%.3,4,6,8,11,21 Although rare, pelvic radiation therapy for prostate cancer is associated with an increased risk of secondary pelvic malignancies.40 Postprostatectomy radiotherapy does not appear to significantly increase the risk of urinary incontinence,3,4,6,14,21,41 but we must presume that it has some adverse effect on erectile function on the basis of the data from primary radiation therapy series. The nomogram can be used to restrict SRT to those patients most likely to benefit and avoid treatment-related morbidity in those predicted to have a low probability of a long-term benefit.
That 5% to 20% range for late grade 1 to 2 rectal and genitourinary toxicities made me go, “Hmmm…” Not quite the “single digits” probabilities that my radiation oncologist said.
After reading a number of the articles in the footnotes and listed on the “We recommend” column of the website, it’s apparent from most of them that starting SRT early is the way to go. It’s also apparent that the probability of being progression free at six years varies considerably from the 30% range to the 77% range depending on your PSA doubling time, PSA level, Gleason score, time to recurrence, and post-surgery pathology. But we already knew that.
This also caught my eye:
A rising PSA alone is not justification for initiating salvage therapy because patients with PSA recurrence are as likely to die as a result of competing causes as they are of prostate cancer.1 To determine the need for salvage therapy, we suggest using one of several existing tools to estimate the probability of developing metastatic disease or cancer-specific mortality.2,22,23 Patients at high risk of progression to these clinically significant events and/or a long life expectancy should be assessed for SRT using our nomogram.
Digging into the three footnotes listed, two are studies that I’ve already referred to in earlier posts—Pound and Freedland—and both suggest that it could take a very long time for the cancer to metastasize. The third study referenced, Predictors of Prostate Cancer–Specific Mortality After Radical Prostatectomy or Radiation Therapy, also reinforces that notion.
We’re right back where we started from: Zap early with an average 50-50 shot of it being effective (with the 4%-20% chance of long-term side effects) or do nothing but monitor.
I may send some of these links to my radiation oncologist on Tuesday and ask, “Which of these studies do you put the most stock in, and why?” and see what he says. Could be interesting.
Well that’s enough fun with cancer on a Saturday night. I’ll keep you posted on any new research findings or developments with the doctor.
I’m one of those people who always thinks of a snappy comeback—three days after the conversation.
Over the weekend, I reflected on my conversation with the doctor last Thursday, and one of the things that I failed to ask was what probability he would assign to the notion that my increasing PSA is attributable to benign residual prostate tissue instead of returning cancer. I sent an email that asked specifically:
I fully understand that none of us have a crystal ball, but the one thing that I failed to ask Dr. is what he thought the probability of this being benign residual tissue was. Is it 5%? 25%? 50%? His experience gave him the insights to make the comment, so his experience may also be able to measure the likelihood as well.
To which he replied:
I’m afraid I am not able to assign a percentage likelihood to the chance that any residual tissue is benign. I can only really extrapolate from the rate of change in the PSA. The longer it took to be detectable and the slower it rises, the more it seems likely to be a bit of benign tissue. Either way, it is those lab values and their pattern that will help to guide treatment. If it rises quickly then will treat, since a) that pattern is more likely cancer, and b) if it’s not cancer it is acting like cancer and the stakes are too high to disregard even with a high % prediction at this point that the tissue is benign.
Hope that helps!
His comment, “…b) if it’s not cancer it is acting like cancer and the stakes are too high to disregard even with a high % prediction at this point that the tissue is benign,” seems to be all over the place and contradicts his opening statement of not being “able to assign a percentage likelihood.” Hmmm…
So that was an interesting little exercise. I really didn’t expect him to come back with a specific number, but I thought I’d ask anyway. I don’t know that his answer convincingly persuades me one way or the other, but it does allow me to throw a tad more weight behind his theory that this is benign. A tad.
Bottom line: The only thing we know with any certainty is that my PSA continues to climb. Beyond that, it’s all a freaking guessing game.
On a related note, I’ve yet to hear from the radiation oncology department with an appointment for me. If I don’t hear from them tomorrow or Thursday (a crazy day at work for me), I’ll try to call on Friday to get on the calendar.
About an hour after posting this, I came across this little gem of an article from 2005:
We conclude that the presence of benign prostatic tissue at the surgical margins is not associated with adverse prognostic features and does not have prognostic relevance; therefore, we do not advocate reporting the presence of benign prostatic tissue at the inked margins as a standard part of the surgical pathology report on prostatectomy specimens.
Because benign epithelium at surgical margins is not correlated with postoperative PSA rises, postoperative PSA increases should in most cases continue to be considered “biochemical failure”.
Obviously, that’s not good news and certainly warrants more research.
This article from 2013 calls a few things into question:
The most interesting finding of this study is the identification of Benign Glands at the Surgical Margins (BGM) after both Open Radical Prostatectomy (ORP) and Robot Assisted Laproscopic Radical Prostatectomy (RALRP) was not associated with recurrence, either biochemical or clinical, during a median follow-up interval of 49 months after ORP and 28 months after RALRP.
Extending followup further should clarify whether BGM leads to low, detectable levels of PSA that may not meet threshold for defining biochemical failure. This may be particularly relevant with the widespread availability of ultra-sensitive PSA assays. The routine use of ultra-sensitive tests after treatment has not been validated and remains controversial in clinical practice, and may be particularly true in patients at low risk of disease recurrence and potentially in those with BGM.
Within our cohort, longer follow-up may reveal detectable levels of PSA associated with BGM that may not reflect actual prostate cancer recurrence but rather a clinically benign elevation of PSA.
In other words, there’s more research to be done.