Category: Recurrence

Day 2,745 – Conversation with the R.O.

On By DanIn Emotional Aspects, Incontinence, Prostate Cancer, Recurrence, Sexual Function, Side Effects20 Comments

When I was in 7th grade, I had to give a presentation on my science project, an erupting volcano, and I was so anxious about the presentation that I became physically ill and erupted myself. Not pretty. While I didn’t get physically ill today, the feeling was almost the same as I waited to see the radiation oncologist. It’s silly, I know. But it was very real.

In a nutshell, his recommendation was to start salvage radiation therapy.

The R.O. is a Navy captain medical officer, and we spent nearly forty-five minutes going over my case (which I truly appreciated). He took control of the conversation from the outset, explaining the options and consequences of each. I could tell that he had given this little presentation once or twice before. Once we got through that, we did have a real conversation. Some key points:

  • He disagreed with the notion that the increasing PSA is from residual benign prostate tissue left behind.
  • He was confident that the cancer would be in the prostate bed based on my numbers and statistics.
  • He talked about the differing definitions of biochemical recurrence, saying that the American Urological Association (AUA) and American Society for Radiation Oncology (ASTRO) use the 0.2 ng/ml threshold, but the National Comprehensive Cancer Network (NCCN) defines recurrence as a detectable PSA with two consecutive increases. My case meets the NCCN definition.
  • Continued surveillance is a viable option for me given my numbers and PSA doubling time.
  • We talked about the short and long-term side effects of radiation therapy: urinary control, sexual function and bowel control. His estimate the probability of long-term quality of life-impacting side effects in any of the three areas to be in the “single digits.”
  • He reminded me of selection bias when talking to other patients or bloggers about their side effect experiences. Yes, their experiences are very real, but for each person in an online forum, there are many others outside the forum who are leading productive, acceptable lives.
  • If we were to do salvage radiation therapy now with my PSA under 0.2 ng/ml, he put the probability of me having no evidence of disease five years from now at seventy-five percent. If we wait until my PSA is above 0.2 ng/ml, that number decreases.
  • Newer scanning technologies weren’t likely to pick up anything at my current PSA levels, yet he was open to the idea of them if it gave me peace of mind.
  • With my numbers, there is no reason to radiate the pelvic lymph nodes or use androgen deprivation therapy (ADT).
  • He was open to waiting until the August PSA results to see what they revealed before making a decision.

It was a good conversation, but I’m sorry to say that I don’t know that there was a lot of new information for me there that would tip the scale either way. The doctor wasn’t pushy in one direction or the other, saying that it was equally reasonable for me to continue surveillance or for me to begin salvage radiation therapy. The choice is mine. About the only thing he was adamant about was not starting ADT, and I’m in perfect agreement with him on that.

I did learn one really interesting thing, however. The reason that the VA Medical Center referred me to Naval Medical Center San Diego has to do with geology. Apparently VA Medical Center San Diego (La Jolla) was built sufficiently close to a geological fault line that they couldn’t build a radiation “bunker” that would be safe in the event of an earthquake.

What’s next for me? A ton of thinking, reflecting, and reevaluating.

Enough for now. I’m spent.

Day 2,722 – No Probability for Me

On By DanIn Prostate Cancer, Recurrence, Treatment9 Comments

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!

Dr.

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.

UPDATE:

About an hour after posting this, I came across this little gem of an article from 2005:

The presence of benign prostatic glandular tissue at surgical margins does not predict PSA recurrence

Key points:

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:

Benign Prostate Glandular Tissue at Radical Prostatectomy Surgical Margins

Key point:

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.

Day 2,717 – The Discussion

On By DanIn Prostate Cancer, Recurrence12 Comments

I hate this flippin’ disease.

My discussion with my urologist went pretty much exactly as I suspected it would, but with a few twists to screw with my mind a little. One of those little twists, however, happened much earlier than the meeting.

This morning as I was shaving, there was this strong sense of fear that hit me, tying my stomach in knots. That was completely unexpected and unfounded because I had a good idea of what was going to happen with the doctor. Even so, it was something that took control and definitely set my mood for the day.

When the doctor entered the exam room, I told him about my propensity to just verbally vomit all over the doctors before they even had a chance to explain their interpretation of my results. I shut up and let him talk away (with my battery of questions at the ready on my lap).

Pretty much everything that he said were things that I already knew:

  • The increasing PSA is a concern, but the slow rate of increase is a good thing.
  • That salvage radiotherapy would be the likely next step.
  • Given my pathology and history, it’s likely that the cancer is still in the prostate fossa.
  • Starting salvage radiotherapy earlier rather than later has typically shown to have better outcomes.
  • We have no guarantee of knowing where the cancer is at, so the radiotherapy may be ineffective.
  • Current imaging technologies aren’t good enough to detect the cancer’s location.
  • There’s no cut-and-dry set of numbers that would dictate specific actions.

The one kicker that knocked me for a loop was something that he said as we were reviewing my PSA tracking chart (I had to bring a copy of that, of course). He did mention the possibility that what we’re tracking may actually be benign prostatic tissue left behind that’s causing the PSA to rise. His reasoning was the fact that it took 54 months for the PSA to become detectable again and its slow rise ever since. He suspected that if the cancer was returning, the PSA would be climbing more rapidly. That, of course, would be great news. He didn’t assign a probability to his theory being right, however.

He did ask if I would be open to a referral to a radiation oncologist to at least begin the discussion and get educated. I said that, if he hadn’t suggested it, I was going to request it, so, yes, I was open to the referral. I don’t have an appointment on the calendar for that yet—they should call in the next few days.

I did mention the PSMA imaging trial that’s going on at UCLA and he was supportive of me looking into it. He cautioned, though that it is a trial and there’s no way to know yet how effective it may be. To be honest, it’s been a while since I looked at the trial page and I’m not sure that I would qualify to participate if it’s still ongoing. Something to dig into.

Lastly, he said there’s no need for urgent action at the moment. We’ll continue the four-month PSA test cycle for now. That will have me in the lab the first week of August.

When you get your care through the Veterans Administration (VA), as I do, you rarely see the same doctor twice. I mentioned that to this urologist and commented that, in a way, it’s a good thing because I’m getting multiple opinions and perspectives. He was taken aback by that comment, saying, “That’s a charitable view. I usually hear the opposite.”

He’s the second doctor who’s mentioned the possibility of this being nothing more than benign prostate tissue left behind that’s causing the PSA to return and rise. Perhaps I need to put a little more stock in that theory. But after spending two years wrapping my head around the notion that the cancer is returning—a mentally and emotionally exhausting exercise—when you hear something like this, it really screws with your mind. Or at least it does mine. It’s one more variable added to an ocean of uncertainty when you’re desperately seeking solid land.

The good thing is that I have time, and time may bring a little more clarity on which to base a decision at some point in the future. In the meantime, I’ll just don my kapok life preserver and bob around in that ocean of uncertainty reflecting on how much I hate this flippin’ disease. (Yes, I’m dating myself with the kapok reference.)

 

 

Day 2,703 – PSA Results

On By DanIn Prostate Cancer, Recurrence13 Comments

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

On By DanIn Prostate Cancer, Recurrence11 Comments

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!

Month 87 – Adapting and Researching

On By DanIn Emotional Aspects, Prostate Cancer, Recurrence10 Comments

Ever since my December meeting with my doctor to review the latest uptick in my PSA reading to 0.10 ng/ml where he told me I need to begin to think about salvage radiation therapy, it’s as though the clock has been turned back to when I was first diagnosed. That makes this all very real once again. We’re getting closer to having to make a decision to move from monitoring to action.

My emotions have been all over the place—from mad as hell at the world to ready to bawl at the drop of a hat—and I felt compelled to research as much as I could, as fast as I could even though my next PSA and doctor’s appointments aren’t until April. On the good news front, the peaks and valleys on the emotional roller coaster have diminished some over the last two months. They’re still there, but not as bad as they initially were.

IMG_4828
San Diego at Night

I’ve been spending a good amount of time (perhaps too much) researching and hanging out in the advanced prostate cancer section of various online support groups. That’s been both helpful and a tad frightening. It’s been helpful because I’m new(er) to the advanced prostate cancer discussion, and I’ve been learning more about the different treatment options, protocols, and latest research. It’s been frightening because reading the first-hand stories—while valuable and necessary—has stoked my fears of the treatment side effects.

I did come across one thing in my research that I’ll definitely discuss with my doctor in April.

We know biochemical recurrence after prostatectomy has been widely defined at 0.2 ng/ml for quite some time, yet more and more research is indicating that salvage therapy should begin early in order to have the best chance of success. Some suggest starting SRT before hitting the 0.2 ng/ml threshold.

Of course, as we all know in the field of prostate cancer, nothing is clear-cut. You can easily find research that has conflicting recommendations.

I came across Stephen J. Freedland’s 2005 study (co-authored by Alan Partin and Patrick Walsh—heavy hitters in the prostate cancer world from Johns Hopkins) that shows I may not have to do anything other than continue to be monitored given my status (PSA = 7, PSADT > 15 months, time to recurrence > 3 years). In fact, he writes:

“It is amazing to me that for a man who has all the low-risk features – if his PSA doubling time is greater than 15 months, his Gleason score is below 8, his PSA comes back after three years – his odds of being alive 15 years later are 94 percent.” These men do not need treatment, he adds. “If we know that 94 percent of these men are alive and well 15 years after surgery with no further treatment, anything we do to treat them is unlikely to improve on that, and probably would only affect the quality of life.”

That’s quite encouraging for someone fearful of side effects and loss of quality of life. Combine that with the Pound study done in 1999 that said it takes on average eight years to metastasis after BCR and, on average, another five years to death after metastasis without any additional treatment, and you’re building a stronger case for doing nothing other than continued monitoring for those of us who are averse to treatment side effects. At least in my mind at the moment.

You can read an abbreviated summary of the Freedland study in the Johns Hopkins newsletter, Prostate Cancer Discovery, here, and the full study as published in JAMA here.

I’m slowly adapting to this new path that I’m on, and I’ll work to find the right balance to stay away from the online support groups and the Google machine to maintain a sense of sanity. I fear, however, that controlling the emotional roller coaster is going to be far more challenging from this point forward (steer clear or pass the tissues). Just a hunch.

One related footnote. I’ve not yet met with a radiation oncologist since my PSA started going up in September 2015. If it stays the same or goes up again in April, I’ll ask the urologist for the referral just to start the conversation and learn more from his/her perspective.

Oligometastatic Prostate Cancer

On By DanIn Prostate Cancer, Recurrence, Treatment9 Comments

There’s a mouthful for you.

I had seen the term bantered about in one of the online support groups that I participate in, and one of the members posted a link to a video [below] put together by the Prostate Cancer Research Institute featuring Dr. Eugene Kwon from the Mayo Clinic. While this may be old news to some, it was new to me, and it was definitely worth the 29 minutes to watch—I learned a lot.

First, oligo means scant or few, and when cancer metastasizes, it doesn’t metastasize throughout your entire body all at once. It’s not like throwing the switch on the national Christmas tree so your whole body lights up in a scan. It starts small and spreads from there. The hypothesis is that, if you treat those early oligometastatic locations, you are much more likely to have a successful outcome. As Dr. Kwon says, it’s a lot easier to kill something small than it is to kill multiple resistant larger tumors.

Second, imaging technology has now advanced to the point where those oligometastatic sites can be identified for treatment. Interestingly, in Dr. Kwon’s experience, only 30% of the cancer that comes back is found locally in the prostate bed. To me, that is hugely important. (For the remaining cancer, 54% is distant metastases and, in 16% of the cases, the metastases are both distant and local.)

The current standard of care is to start salvage radiation therapy (SRT) without the benefit of advanced imaging, zapping the crap out of the prostate bed, with an apparent seven in ten chance that it won’t be effective. And, as an added bonus, you get those potential life-long side effects from the radiation.

Of course, after (or in conjunction with) SRT is androgen deprivation therapy (ADT). It’s palliative in nature and only prolongs life with even more side effects.

Dr. Kwon asserts that, if you go after those early oligometastatic sites—surgically removing “hot” lymph nodes or spot-radiating affected bones—those treatments can be more curative in nature. Curative is certainly better than palliative.

You can rest assured that I’ll be investigating more of this in the future and discussing it with my doctor in April.

Month 86 – Struggling

On By DanIn Emotional Aspects, Prostate Cancer, Recurrence, Side Effects6 Comments

First things, first. I’m struggling to thaw out after spending five days in frigid (-4° F / -20° C) Chicago with my sister and her family this past weekend. You may well be asking, “Who in their right mind flies from San Diego to Chicago in January?!?” Sadly, that would be me.

I contemplated returning for Christmas but had sticker shock on the cost of the airfare, so I opted to return for my birthday last week at a quarter of the cost. This birthday was one of those annoying milestone birthdays—the 30th anniversary of my 30th birthday—and that definitely warranted an appropriate celebration. Of course, anyone in our situation knows that any birthday you’re around to celebrate is a good birthday.

But what I’m really struggling with is this whole notion of recurrence and what to do about it.

I’d like to think that throughout my life I’ve been a generally optimistic, my glass is half full kind of guy, but one with a healthy dose of reality attached to that optimism. Hope for the best, plan for the worst, and recognize the inevitable. I understand the value of a positive attitude, however, I’m increasingly finding that I have a diminishing tolerance of false optimism. “You got this. You’re going to kick cancer’s ass!” Really? Are you sure about that? How do you know? And at what cost? The $109,989.11 invested in my prostatectomy (the real number, mostly paid by the insurance company) doesn’t seem to be paying off.

The costs that I’m talking about aren’t just financial, either. There are emotional and physical costs as well.

With salvage radiation therapy (SRT)—the only option that still has a curative potential—there’s the risk of increased incontinence, loss of sexual function, bowel control issues, and fatigue during the treatments. Chatting with other patients in online forums or through their own blogs, some of these issues don’t manifest themselves until well after the SRT treatments end. And all of this for a 30%-55% chance of having no evidence of disease five or six years after SRT ends.

With androgen deprivation therapy (ADT) (hormone therapy), there’s the loss of libido and sexual function, mood swings impacting relationships, hot flashes, loss of muscle mass, increased risk of osteoporosis, and significant depression. Of course, ADT is not curative, so you get to suffer through those substantial side effects for a longer period because ADT prolongs your life.

It’s easy to get excited when you see your PSA plummet after starting ADT, as it impacts those androgen-dependent cancer cells. But guess what? There are also androgen-independent cells floating around that the ADT won’t impact at all, and it’s those cells that will start driving the PSA back up again and that will ultimately kick your ass.

Being a data-driven numbers guy, I’m also struggling with how to quantify these potential impacts on quality of life.

When you’re in an online or even in-person support group, you have to remember that there’s a self-selection bias taking place that will skew your perspective to the bad. Think about it. Almost everyone who’s in the group is there because they’re at some stage of dealing with this disease and having issues that need answers. Who you don’t see are those patients who are outside of the group who have success stories in dealing with their cancer and have simply stepped away from that chapter of their life.

For me, I want to know the ratio of who’s in the group versus those who are outside the group. Is it like an iceberg with 10% of the patients in the group being the visible ones and 90% of the success stories out of sight? Is it 50-50? 30-70? 60-40? Knowing the answer to that helps me understand the risks better.

I’ve stumbled across a few studies that talk about the likelihood of potential side effects from SRT but I would like to see more. The risks do seem to be relatively low from what I recall and from what my doctor is telling me, but forgive me if I’m skittish about accepting even low risk given where I’m at. (My surgeon forewarned me that there was a 20% chance the cancer would return; I guess I’m just not feeling all that lucky at the moment given my track record.)

Similarly, with ADT, it seems that most everyone suffers some form of side effects, but each person is impacted differently. Again, the numbers guy in me would love to see some sort of study that says, “While on ADT, my quality of life has been reduced by __% in each of the following areas…” I’ve heard patients say that they are “just a shell of the person I was once” or that the ADT has them remaining in bed 20 hours a day. Of course, there are others who seem to have only mild side effects with negligible impact on their daily lives. What’s the distribution like between those two extremes? Knowing the answer to that would be very helpful in decision making.

Given all that, I’m struggling with one more thing, and it may scare or even offend some readers.

“You’ve got plenty to live for. You need to fight. You need to be strong. You need to be a warrior and defeat this disease,”—all things that I’ve heard along the way. There’s this pervasive attitude that other patients, family members, and the healthcare system have that we must do everything we can to go on living for as long as we can at all costs.

Why?

Please don’t panic and think that I’m ready to check out tomorrow. I’m not. There is plenty to live for, and that is precisely why I ask the question.

Is being a shell of yourself and staying in bed 20 hours a day really living, or is it merely existing? Would you rather live a more full, active life for 8-10 years, or merely exist for 20 years?

What about the impact on your significant other and those closest to you? Yes, they’ll be by your side every step of the way. Do you think they would rather remember your last years as being present and engaged for 8-10 years, or withdrawn, moody, depressed, and barely capable of functioning for 20 years?

What about the financial impact on your family? Would you rather take a few bucket list trips with your significant other and family in your remaining 8-10 years, or would you rather take out a second mortgage on your home to pay for the drugs and latest technology tests that will keep you existing for 20 years, placing a financial burden on those who survive you?

Before you send me all sorts of hate mail, I know those are extreme examples and that there are many shades of gray between the extremes, but, in the absence of studies or data that mitigate those examples, that’s what’s rattling around inside my analytical, pragmatic mind at the moment—right or wrong. It’s just the way I’m wired. The good news is that I have time to find those studies and data that hopefully will give me the information I feel I need to make decisions going forward.

It takes strength to go through the radiation, ADT, and chemotherapy if that’s the path that you choose. It also, however, takes strength to say, “No. I’d rather live without those debilitating side effects for as long as I can, even if it means it will be for a shorter period of time.”

Thirteen years ago, my mother was diagnosed with mesothelioma, the incurable cancer associated with asbestos exposure. She was given the option to participate in some clinical trials that may have extended her life three to twelve months, but she refused. “I don’t want to be someone’s pin cushion when the end result will be the same.” She wanted to retain control over her life for as long as she could, and she did so to the best of her ability. Sadly, though, it was only a matter of months before she died, but she went out on her own terms.

That’s how you kick cancer’s ass.

I would like to think that I’ll be able to do the same.

Just a note. Because I knew I would be traveling, I wrote this post over a week ago. While I was in Chicago, a fellow prostate cancer patient, Mark Bradford, replied to a question in an online support group, and it’s complementary to the topic of this post. The question posed was, “At what point do you get tired of fighting?” He replied:

I dislike framing this as a fight. You have a disease, and you seek treatment for [it] till you decide to stop. Being in treatment is not fighting and stopping treatment is not giving up. I was inoperable from the beginning and stage 4 soon after. My outcome was certain, so my priority was quality of life over quantity. I did HT [hormone therapy] until it stopped working, and cannabis oil throughout. I refused chemo as it would not cure me or significantly extend my life. Don’t let anyone say you’re giving up if you decide it’s time to stop treatment. I could not afford alternatives, so my choices were limited. If you have the means, do whatever seems right to you. But accepting reality is not giving up.

I don’t think that I could agree more with Mark’s comment about framing this as a fight and about being in treatment or stopping treatment.

Mark is nearing the end of his life, and you can read his very poignant blog, God’s 2 by 4: Mark Bradford’s Cancer Journal.

Another patient, Dan Cole, answered simply and succinctly: “Live the life you choose to live. That is winning the fight.”

I know I’m getting way ahead of where I should be given my current status but, if nothing else, this disease certainly causes you to prematurely contemplate your own mortality.

Life After Radical Prostatectomy: 84 Months Later

On By DanIn Incontinence, Life After Prostatectomy, Prostate Cancer, Recurrence, Sexual Function12 Comments

So it’s been 84 months since my radical prostatectomy. How am I doing?

Status

With my PSA increasing steadily over the last two years to the point where it’s now at 0.10 ng/ml, it appears that I’m on the path to recurrence. Needless to say, that’s not the outcome that I had in mind when I started this journey, but my surgeon did warn that approximately 20% of prostatectomy patients have the cancer return.

Emotions

My visit to the doctor in December went just as I expected it would, with one exception. I left the office feeling as though the wind had been knocked out of me. This whole notion of recurrence took on a whole new meaning when the doctor suggested that we’re going to have to start thinking about radiation in the future. It’s becoming real again. Since then, I’ve been doing okay. Not great. Not horrible. Okay.

Incontinence

I remain “dry” 98% of the time. There have been a few very long days at work where my body tired and, combined with the physical exertion at the end of the day, I was a bit more prone to leak. Rarely do I need to get up to go to the bathroom in the middle of the night—I can last 6-7 hours most nights.

Sexual Function

I continue to do so-so in the ED department. Remember, I have only one nerve bundle remaining, but I can get an 80%–90% erection most of the time. Some days are better; others are worse.

I do find that my libido is still there, and there are times through the day where I can feel things stirring down below. Not enough to obtain a natural erection—those days are gone—but enough that with a little stimulation, it would be much easier to achieve an erection.

Summary

Recurrence is the fear of every cancer patient because now your options become more limited and the costs of dealing with it—emotional, physical, and financial—begin to increase significantly. It’s time that I start seriously preparing for the trip down this fork in the road. The good news is that I have time with my PSA doubling time as long as it is.

Day 2,596 – Doctor Visit

On By DanIn Prostate Cancer, Recurrence8 Comments

I met with my doctor this afternoon to review my increasing PSA results, and it went just about as expected. There’s increasing concern, but things are progressing slowly enough that we can continue on the four month test cycle for now. That means I’ll be doing this all over again in April.

There were a few reality check moments in the conversation, though. I’ll get to those in a moment.

One thing I need to learn to do is shut up—at least for the first part of the meeting with the doctor. I’m not very good at letting the doctor talk and offer up his thoughts and recommendations and then ask the questions that I have. I just launch into a barrage of questions based on the research that I’ve done and assault the poor guy. On a positive note, he really didn’t dispute anything that I told him nor did he tell me that I was completely out to lunch on certain issues.

We reviewed the success rate for SRT, with various studies showing it to be 35%-55% effective at being progression-free at 5 or 6 years. (Here’s one.) We also discussed the potential side effects of SRT, and he did seem to believe that the risks were lower than I thought they may be.

The conundrum of starting SRT early versus knowing where to radiate based on imaging came up as well. My sense was that he’d prefer to start SRT while the PSA is less that 0.2 ng/ml, and certainly before it reaches 0.5 ng/ml, assuming that the cancer remained in the prostate bed. Doing so, he said, offers the best chance for success. He suggested that, if we wait until it would be detectable on even the most sensitive imaging (which can’t detect anything reliably until the PSA hits the 1.5-2.0 range), that radiation would do little if any good at that point, as the cancer will likely have spread. Androgen deprivation therapy (ADT) would be the treatment option of choice at that point, and ADT is not curative. It only prolongs life (with substantial side effects impacting quality of life).

The reality check moment for me came with his comment about waiting too long to the point where SRT wouldn’t be effective, and that ADT would be my primary treatment option. That really was an, “Oh, shit,” moment for me. It’s very easy to sit here and speculate how I will act in hypotheticals, but at some point in the future, I am going to have to make real world decisions that affect my longevity and quality of life.

Based on my slow PSA doubling time (around 16 months), if my PSA progresses at its current rate, I’ll have 12 to 28 months to think about this and make my decision, based on whether I want to act if my PSA is around 0.15 or let it go all the way to 0.20. (See my “decision zone” in yellow below—yes, I had to geek out in my spreadsheet once again.) If I want to wait until it’s all the way to 0.5, I’ll have even more time.

Of course, one option is to do nothing. A study in 1999 showed that it took, on average, 8 years after PSA levels began to rise to reach metastasis, and another 5 years after metastasis to death.

The bottom line is that this is becoming increasingly real and that there will be some tough decisions in the next year or two. Of course, those decisions are mine and mine alone, and will be based on a variety of factors, not least of which will be my risk tolerance and any treatment’s impact to quality of life.

On that happy note, I wish you a Merry Christmas and a happy 2018! 🙂

Thanks, too, to those who took time to answer my questions in my salvage radiation therapy survey a few weeks ago. Your insights were quite helpful to me.