Month 100 – The Language of Cancer

It’s interesting how much media coverage there is when a celebrity announces his or her cancer diagnosis. Last week, Alex Trebek, host of the syndicated game show, Jeopardy, announced that he had been diagnosed with Stage 4 pancreatic cancer. In his announcement, he was quite optimistic that he was going to “fight” this and “win.”

Mr. Trebek’s use of those words led to an article in the Chicago Tribune by Heidi Stevens, With Alex Trebek’s announcement comes unease over the words ‘fight’ and ‘win’ applied to cancer. It’s an interesting take on the topic and one that resulted in quite the debate on social media.

The subject of the article, Sheila Quirke—who lost both of her parents and four-year old daughter to cancer—put things in simplistic terms. She suggested that some people turn the discussion into a binary choice—you’re either a winner or a loser—and that, by dying from cancer, there’s an unspoken implication that the patient is a loser.

I can’t say that I’ve heard anyone imply that someone who has died from cancer is a loser. Ever.

I never liked using the language of “battling” or “fighting” cancer because, as Ms. Quirke said, it can be overly optimistic and implies that we have control. The pragmatic part of me says that we’re merely managing our cancer, reacting to the latest test results. Sure, we can and do have control over our treatment decisions and our attitude but, in the end, it’s the cancer that is always dictating the next chapter, even if our treatments have led to no evidence of disease.

That doesn’t mean that I’m a defeatist. I just don’t like to sugar-coat the facts. It’s simple: I was diagnosed with prostate cancer. I pursued a treatment option. It apparently failed. I’m monitoring my status and evaluating next treatment options. That’s it. No battle, no fight, no war. That’s what works for me.

Given my propensity for travel, perhaps we can replace the war metaphor and language with that of a lifelong road trip.

We start our journey on this planet with a full tank of gas and infinite different route choices on the day that we’re born. Our goal is to make the gas last as long as possible to get us to our destination at the end of our days.

detour-44162_960_720But then cancer comes along and diverts us off of our chosen path. We’re forced into unmapped territory, not certain of how long or how dangerous the detour may be. We educate ourselves as best we can, and we choose different routes along the detour that we think will work best for us. If we’re lucky, we choose a route that gets us back to the main highway safely and conserves as much fuel as possible. (We may need new shock absorbers and an alignment because of the bumps along the way, however.)

If we do make it back to the main highway and are enjoying the scenery on cruise control, Cancer can throw another detour miles down the highway, sending you down Recurrence Road. Again, we educate ourselves and select the best route that we think will get us back to the main highway as quickly and efficiently as possible (and hope the repair bills this time aren’t as expensive as the last detour).

We try to be the best navigators possible, conserving as much fuel as we can for the full journey. But we don’t control the length of the detour route, Cancer does. For some, that detour may be only a mile out of the way; for others, the detour may be 100 miles out of the way. That means that some will run out of gas ending their journey sooner than others.

One wasn’t a better navigator than the other. It’s not a failure. It’s not a loss. It’s just our reality.

But each cancer patient’s way of dealing with this disease is different and, if saying that you’re battling cancer and you’re going to win works for you, by all means embrace it and shout it from the rooftops.

Language about cancer means different things to different people, and I do agree with the premise that we need to be aware of and sensitive to that fact when we choose our words with cancer patients. My heart goes out to Ms. Quirke for her losses.


We’re coming up on my next PSA test in a few weeks. My schedule may have me going a week earlier than I would have otherwise gone, but that should be no big deal. (Yes, I’m OCD enough to try to keep the spacing between my four-month test cycles within a day or two of each other to facilitate calculating PSA doubling time.) I’ll probably go early in the last week of March, assuming my wacky work schedule that week permits me to do so. My PSA tracking spreadsheet is predicting a value of 0.14, up from 0.13 the last time. Wagers, anyone?

I will say that, throughout the week since learning of our fellow blogger, Jim’s, death last weekend, I’ve been pretty reflective on how I’ve been approaching my own increasing PSA. I don’t know that I have any answers, and the PSA test results at the end of the month will certainly bring the topic to the fore once again.

Day 2,960 – Meeting with the Urologist

One thing that I’ve learned along this journey is that every doctor has his or her own take on the situation and what should be done, and very few of those opinions match. They can’t even agree on standard definitions.

This afternoon’s meeting with yet another urologist proved to be interesting at best and a tad frustrating at worst.

He was a younger doctor but the interesting thing was that he held to the belief that I haven’t had a biochemical recurrence yet and won’t until I hit the magical 0.2 ng/ml. I was a bit taken aback by that given what everyone else has been telling me for the last two years. He also talked about the newer ultra-sensitive PSA tests, but hung on to the definition that anything less than 0.1 ng/ml was “undetectable.” In his mind, my PSA at 0.13 was “very low.”

We talked at length about my PSA doubling time, and that was one area that we came to consensus on. That having a PSADT of more than two years was a good thing. He seemed quite interested in seeing the results of the Memorial Sloan Kettering PSADT calculator, which had my doubling time at 35 months (based on only four data points because their calculator accepts only those values >= 0.1 ng/ml). (I also had my PSA tracking chart printed out and sitting on his desk when he walked in.)

I asked him about what his experience was with dealing with the long-term side effects of salvage radiation therapy as a urologist—how frequently they occurred and what severity they were. He went through the list of things that I had already known, and said in his “whole career” he had seen only three or four cases that were significant. (Note: His “whole career” spanned all of six years. I’ve had cancer 8 years.)

Lastly, we talked about the Ga68 PSMA imaging trial going on at UCLA. It was clear he was aware of the research, but wasn’t at all familiar with the details or requirements of the trial. I didn’t expect him to be well-versed on the topic, but it was clear that I knew a bit more about it than he did, especially when it came to the requirements to participate, (I didn’t tell him that I had actually contacted UCLA.)

He did ask me if I had a PSA threshold in mind where I would want to take action when it comes to salvage radiation therapy. In my mind, if we get into the 0.15 or above range and the PSADT starts to shorten, I’ll have to strongly consider the next steps. But I did bring up the Freedland study that shows, with my numbers, I can do nothing and have a 94% chance of being around in 15 years.

Normally, I don’t mind seeing younger doctors because sometimes they’re more familiar with the latest research and current treatment philosophies than their older counterparts. I’ll take his input with a grain of salt considering how he’s not in line with the thinking of some of the others that I’ve seen in the last year or two.

In the end, we agreed to kick the can down the road and do another PSA test in four months in April 2019.

I’m still interested in speaking with a radiation oncologist about this again. I may try emailing the one I saw in May or just ask for another referral after the beginning of the new year.

It was a bit of an odd consult. I’ll just forge my own path forward and we’ll see where that leads. In the meantime….

Wishing you all a very Merry Christmas and the healthiest, happiest New Year possible!

—Dan

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We have to improvise here in San Diego!

Day 2,841 – A Chat with the Urologist

I met with the urologist this afternoon to go over my 1 August 2018 PSA test results and it was an interesting conversation.

This was a new guy wearing his spiffy white lab coat with the University of California-San Diego (UCSD) emblem embroidered on the pocket. (I pretty much see a different doctor each time I go to the VA hospital and, yes, UCSD doctors care for patients at the VA hospital, too.) I had my PSA trend chart printed and sitting on his desk when he walked in, which he appreciated seeing the whole history on one page.

I let him start the conversation and it was pretty clear right from the start that he was of the “continue to monitor; no need to act right away” mindset. He really focused on my PSA doubling time being so long as being the reason for his recommendation to just watch this for now.

I shared my conversation with the radiation oncologist with him and he really didn’t comment one way or the other about the R.O.’s initial recommendation to zap.

I did take advantage of the opportunity to discuss the urological side effects of being zapped in salvage radiation therapy. One of the things that I focused on was urinary strictures.

He explained that just by having a prostatectomy and stretching the bladder neck to reconnect with the urethra, you’re in essence creating a stricture to begin with. “That’s a good thing,” he said, “because it helps control the urine flow in the absence of the prostate.” But zapping the area will change the nature of the surrounding tissue and can cause it to close down further. If that’s the case, they may have to do a procedure to re-open things and that’s where you can get into the higher leakage scenarios.

One of the things that really resonated with me during that discussion about side effects was when he said that I shouldn’t even be worried about them because I could go months or years without even having to think about salvage radiation therapy. (And, no, I didn’t prompt him to say that!)

That led to a discussion about the newer imaging technologies and he reinforced what I already knew—that most are unreliable with PSAs less than 0.2 ng/ml. I told him that the spreadsheet that generated my chart shows that I won’t hit 0.2 until late 2020 or early 2021 if it continues at its current pace. Perhaps in that time, the new imaging technologies will be better and more reliable at lower PSA levels. (He was also empathetic to the idea of not zapping unless you knew where the cancer was.)

We also talked about the frequency of my PSA tests and his immediate response was that we could do this every six months, again, based on my PSA doubling time. That surprised me. We’ve been on a four-month cycle for three years now. He said it would be my call, so I opted to stick to the four-month cycle for at least one more cycle.

Wrapping up the conversation, I did ask, “If I do have to get zapped at some point, where would you do it? UCSD or Naval Medical Center?” He deflected my question and never responded, so I asked again. Again, he remained silent but his hint of a grin perhaps answered it for me.

All in all, I was pleased with the consult and am content to continue to monitor, with my next PSA test being in early December.

Yes, I know that more studies are showing that zapping recurrent prostate cancer early leads to better outcomes in the long run. But other studies (Pound, Freedland) show that someone with my pathology can delay or even forego additional treatment and its associated side effects impacting quality of life and stick around for an additional 8-15 years. So, yes, this is a bit like playing a game of chicken or Russian roulette, and that thought never leaves my mind.

So why not get zapped and be done with it? Because quality of life is very important to me and if I can maintain it for a few years more than I want to try and do that. Is there risk of the cancer getting away from me? Of course. But with continued monitoring and perhaps advances in imaging technology, we can stay one or two steps ahead of it.

Time will tell.

Day 2,827 – Q&A with the Radiation Oncologist

Just a quick update…

I shared my last PSA results with my radiation oncologist via email yesterday to see if the results would influence his treatment recommendation.

He stated that a stable PSA is “great news” and that “continuing to monitor at this point is a very reasonable approach.” I also asked if a four-month PSA test frequency was appropriate or if we should look at increasing the frequency. With my numbers, he said that a three to six month frequency was most common, so sticking to four months was fine.

I also asked for clarification about sexual function after salvage radiation therapy. For some reason, I had it in my mind that from our conversation during the initial consult, he said that zapping me would likely damage my one remaining nerve bundle to the point that sexual function would be a thing of the past. He corrected me.

He said that post-radiation function is highly dependent on pre-radiation function. There will likely be some degradation, but not necessarily a complete loss of function as I had somehow lodged in my brain.

He closed the conversation by saying, “Hopefully your PSA will continue to behave itself and we can worry about that [sexual function] down the road.”

Needless to say, I was quite pleased with those responses.

We’ll see what the urologist says on the 21st (I put the wrong date in my last post) but, for now, I’m fine with doing nothing until my next PSA test in December.

 

Day 2,823 – Surprised

I was more than pleasantly surprised this morning when I learned that my PSA remained the same! It came back at 0.11 ng/ml, the same that it was in April.

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I learned the news from my primary care physician this morning when I was in to have something else checked out. In fact, I was so surprised by the result that I had to ask him twice to confirm that it was the 1 August reading and not the April reading.

I did ask him for his take on the reading, my history, and what he thought I should do next. He agreed that there are too many differing opinions and recommendations making it frustrating for patients. “Go with your gut,” was the best advice he could muster up.  Gee, thanks.

Of course, the stalled PSA growth (one data point does not make a trend), makes me inclined to kick the decision can another four months down the road—another four months without the side effects of radiation therapy. However, when I meet with the urologist on 19 August to go over the results, I’ll focus the conversation on the long term side effects of salvage radiation therapy because I don’t want to rule that completely out yet, either.

I may even email the radiation oncologist the results to get his take on them. Would he still want to zap me now (probably yes), or would he be more inclined to wait a while longer?

Regardless, I’m going to enjoy the results for now and think about decisions after the visit on the 19th.

 

 

 

Day 2,821 – PSA Test Time

It’s that time again. I had my blood drawn this morning and I suspect I’ll have the results online late Friday night.

My last PSA in April was 0.11 ng/ml and my handy-dandy spreadsheet predicts that this PSA will come in around 0.124 ng/ml. We’ll see…

If it does, that will add a little more pressure to make the “zap or not to zap” decision.

Stay tuned…

Month 92 – Sweating it Out

Literally. It’s been a god-awfully hot weekend here in San Diego. On Friday, the temperature downtown on the waterfront hit 97° F / 36° C and in Ramona, about an hour to the northeast of San Diego, it hit a toasty 117° F / 47° C! Yep. That’s correct. It’s not a typo.

Four wildfires broke out in the area Friday afternoon as well, with the nearest one to my house only 11 miles / 17 km away. A bit unnerving to say the least seeing as how rapidly those things can spread. (In 2003, the Cedar Fire spread about 25 miles / 40 km in about 16 hours thanks to a raging Santa Ana wind.) Thankfully, there was no such wind on Friday, and our amazing firefighters kept the fire to 10 acres / 40.000 m² but one home was lost.


I’ve been rather successful at not sweating over prostate cancer for a while now, and it’s been a good thing. In fact, so much so that I really don’t have much else for this post. Of course, that will change in three weeks when I go for my PSA test on 1 August.

So with nothing else to report, I’ll just leave you with a photo of some oak leaves in the sun near Big Bear Lake…

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Day 2,703 – PSA Results

The bad news: My PSA continued its upward climb to 0.11 ng/ml. The good news: The rate of increase remained constant (and is still quite slow).

The result is exactly where my spiffy spreadsheet said it would be, so I’m not overly surprised. All that’s left to do now is wait for my appointment with the urologist on 19 April. I’ll have to do my best to let him speak a little before I assault him with my already prepared list of questions.

This result reinforces my belief that it’s time to bring a radiation oncologist into the discussion so I can get his or her perspective on salvage radiation therapy, especially regarding the risks of long-term side effects impacting quality of life and the likelihood of success.

More to come…

PSA 20180405

Month 88 – Ready for Next PSA Test

It’s not often that I want time to pass more quickly in order to get to my next PSA test, but this time it’s different for some reason. I’ve been really anxious to have 3 April roll around to get this over and done with. Perhaps it’s because I suspect that this test will be the tipping point that finally gets me into real decision-making mode.

Of course, I would prefer not to see my PSA continue its gradual climb, but I suspect that it will. My spiffy little spreadsheet predicts a value of 0.115 ng/ml, up from 0.10 ng/ml. Let’s see how accurate its predictive powers are.

On a related note, I’m fairing much better than I was in my last blog post. How did I manage the emotional turnaround? One word: Disconnect.

I disconnected from my prostate cancer forums and from the good old Google machine in an effort to maintain some semblance of sanity, and it worked. That doesn’t mean that I quit them altogether or didn’t read the occasional article that popped up in a news feed, but I stopped actively researching for now.

Sure, there hasn’t been a day that’s gone by where I haven’t thought about my predicament. That’s only normal. I just don’t dwell on it like I did four weeks ago, and that’s improved my mood and focus considerably. Depending on my PSA results (I should be able to retrieve them online on 5 or 6 April), my mood and ability to focus may go out the window again. My appointment with the urologist is on 19 April, and one point of discussion will be a referral to a radiation oncologist.

Between now and then, I’ll do my best to simply forget about it all. Wish me luck!

Day 2,583–PSA Results

PSA 20171204My December PSA results came back just as predicted by my spreadsheet’s silly little trendline: 0.10 ng/ml.

The bad news is that it keeps climbing; the good news is that the doubling rate appears to be about 16 months. My follow-up appointment with my doctor is 19 December 2017 where we’ll probably agree to continue to monitor every 3-4 months for the time being.

Interestingly, from an emotional perspective, this has been pretty much a non-event for me. I’ve resigned myself to the fact that the likely explanation for the increasing PSA is the return of the cancer, so at this point, it’s only confirmation of something that I already suspect/accept/know.

That’s it for now. I’m sure I’ll have more thoughts in this month’s regular post on 11 December.