Category: Recurrence

Day 1,995 – Hard Conversations

On By DanIn Emotional Aspects, Prostate Cancer, Recurrence3 Comments

Sunday, I popped back into the museum where I worked up until January to see my old colleagues and friends. It was good to get caught up and to hear how things were going since I left.

Of course, they inquired as to how I was doing, and that led to a small dilemma for me. Do I tell them about what’s been transpiring, or not?

I lied and told them that things were just fine with me. As I did, it immediately took me back to the days of being back in the closet and having to pretend to be something I’m not all over again. It wasn’t a good feeling at all.

My intent in going there was to let at least one or two of my closer friends there know what was going on, because, as one fellow blogger recently wrote, “A burden shared, is a burden halved.” (And as therapeutic as venting on this blog has been, it’s always better to have a real shoulder to cry on.)

But after spending a little time with my museum friends, I realized that it wasn’t the appropriate time or place to share what I’ve been going through, so I didn’t.

So far, I’ve only told two of my friends (a husband and wife team) face-to-face, and four others via email. That’s it.

Telling my friends in person was more difficult than I expected. The words hung up in my throat and didn’t want to come out. By saying aloud that I had early indicators that the cancer might be returning, made it real.

I could tell the same thing was happening on Sunday with my museum friends as I got closer to uttering those words—they didn’t want to come out. (Hence, another reason not to say anything.)

I’ve yet to tell my sister and her family that all of this is going on; they’re still reeling from my brother-in-law having had his massive stroke in August. They’re emotionally exhausted right now, and I don’t want to add to that burden until I know something more definitive. (And, yes, I know that they have a right to know at some point and, no, the chances of them reading about this here are pretty slim to nonexistent. Trust me.)

The support that I’ve received from you has been incredible, and I’m truly thankful for it. But right now, I need some additional local support on this roller coaster ride. To get that, at some point, I’m going to have to come out of the “cancer may be returning” closet and have that hard conversation with those closest to me.

[Yes, I know I’m getting waaay ahead of myself, but that’s the way this crazy mind of mine works. I like to be prepared. It’s really, really annoying at times.]

Speaking of closets and hard conversations, here’s an interesting 11-minute video on the very topic.

Day 1,990 – Quick Update

On By DanIn Prostate Cancer, Recurrence10 Comments

Just a quick update on a Friday afternoon…

Emotionally, doing quite well, although I still have the occasional fit of being pissed at this whole situation. Otherwise, pretty much back to my normal day-in, day-out routine.

I’ve also been doing a bit of reading on the concept of recurrence and treatments. Not obsessively, and not letting it add fuel to any emotional fire. Absorbing it in small doses with an open mind. If anyone has any compelling article, book, or other source on the topic, please feel free to share.

I received confirmation today that the next step in the process—the bone scan—is scheduled for 19 May 2016. I’m fine with that.

 

Day 1,988 – The Day After

On By DanIn Emotional Aspects, Prostate Cancer, Recurrence9 Comments

It’s the day after my appointment with the urologist, and I’ve come to learn how truly amazing is our capacity to experience the full spectrum of emotions simultaneously. Specifically, I felt a strong sense of being at peace today while still being mad at the world.

I know the doctor never explicitly stated that the cancer is coming back, but her concern and her actions tell me that I’ve taken my first steps down that path. Sure, it may take six months, a year, or even longer of traveling to that magical 0.2 ng/ml biochemical recurrence destination, but in my mind, once you start down that path, there’s little you can do to get off it.

Salvage radiation or androgen deprivation therapies may slow the rate at which I progress down the path, but, in my mind, the ultimate destination will be the same. The question is whether it will allow me enough time to die with prostate cancer and not from prostate cancer.

Am I getting ahead of myself? I don’t think so. Something in my gut tells me that this is really happening. And, no, that’s not giving up—it’s just accepting reality. Having a healthy outlook on death and dying came from my mom who, coincidentally, died—or, to use her word, “croaked”—ten years ago tomorrow. (She left my sister and I a note with instructions that started, “When I croak…”)

The sense of peace that I’m feeling comes from having much of the ambiguity removed. Sure, there are plenty of tests ahead that will either confirm that I’m on the path or add doubt as to whether and how fast I’m progressing down the path. And there’s plenty that even the experts can’t agree on concerning the therapies, and that will be maddening. But now I feel as though I have a sense of purpose—something to focus on—and that’s where the peace comes from.

Do I want to be on this path? Hell no. I’m mad as hell that I’m in this situation. But the anger will subside, and then I’ll focus on two things: 1) Living and 2) figuring out the best course of action to slow or stop the progress of this monster.

And if 4, 8, or 12 months from now, I’m proven to be a complete idiot because there was no recurrence, then I’ll take that, too. It certainly won’t be the first time nor will it be the last.

Now, if you’ll excuse me, I have four months of getting really, really smart about salvage therapies, their effectiveness, their risks, and their side effects.

Day 1,982 – Exhausted

On By DanIn Emotional Aspects, Recurrence6 Comments

Cancer is exhausting.

Ever since getting my PSA results last Friday, I’ve been so emotionally charged that I just reached a point of pure physical exhaustion tonight. But, on a positive note, today was the first day since last Friday where I wasn’t overcome with complete dread, anger, and sadness.

The whole week I’ve been mad at the world for having to even be thinking about the cancer coming back. I cruised along for more than four years thinking, “I got this licked,” with each successive undetectable PSA test, especially as I closed in on the five year mark. And now this. Pissed me off.

Being so angry didn’t bode well for anyone around me, as the smallest little thing would set me off. Being in a job that is almost entirely about relationships with people, it was extraordinarily difficult—and draining—to not allow that anger to come through and get directed at the people I support.

Of course, there was no way to just purge cancer from my thoughts; it was ever-present, especially because I’ve been doing research in advance of my appointment with the urologist on Tuesday. That made it challenging to focus on the tasks at hand at work, too.

Then the sadness of just having to go through this all over again, knowing that this time it will be a more difficult journey than just a snip-snip, your prostate’s gone, sapped any remaining positive energy from me as well.

Lastly, there’s the frustration of not having any immediate, definitive answers as to what in the hell is going on. Yes, I know that I’m getting ahead of myself, but I’m also not naive. Having three consecutive elevated PSA readings tells me something different is going on. In my mind, I’m trying to reconcile the fact that this really is happening, and that I need to be prepared to accept the fact that the cancer may be back one day.

My prediction is that Tuesday with the urologist will go something like this:

  • Yes, this is an interesting development having a third elevated PSA test higher than the others.
  • It warrants concern, but not panic. (Too late.)
  • We’ll want to do another PSA test in 2-4 months.

Perhaps the best analogy for this week is that I had been driving down the highway on cruise control, bumping my speed up a tad with each successive undetectable PSA test, then—BAM!—out of the blue, I have a blowout. It takes a few moments to assess what happened, reconcile what needs to be done, and then regain control of the situation. After the adrenaline rush subsides, you’re zapped of all your energy.

Right now, I’m somewhere between reconciling and regaining control. I’ll get there.

Month 65 – PSA Debate

On By DanIn Prostate Cancer, Recurrence5 Comments

Well, with the jump in my PSA to 0.08 ng/ml that I reported a few days ago, I’ve been poring over some literature on the debate between the standard PSA test that’s been used for years and the newer ultrasensitve PSA test (which I’ll abbreviate uPSA) that my provider switched to in March 2015. Let’s review:

  • In January 2015 I had my last undetectable reading (<0.03 ng/ml) using the standard PSA assay.
  • My provider switched to the uPSA assay in March 2015.
  • My September 2015 uPSA reading came back at 0.05 ng/ml, sending me into full panic mode. Given the accuracy of the standard PSA test of +/- 0.03 ng/ml, it, too, should have been able to pick up the 0.05 ng/ml reading in September if it had been used.
  • We retested in December 2015 and my uPSA was 0.04 ng/ml. I would attribute the change from 0.05 to 0.04 to the daily variations that so many talk about and consider that to be insignificant. Still, the standard PSA test could have picked up the 0.04 reading had it been used.
  • And now in April 2016, my uPSA was 0.08 ng/ml.

Those against using the uPSA argue that we’re simply measuring noise and that anything under 0.1 ng/ml should not be used as a decision point to start salvage therapy. They also call into question the accuracy of PSA doubling times using the uPSA test given that it may be measuring more noise than actual changes.

Those embracing the new uPSA test argue that initial, small-scale studies show that uPSA can be a predictor of recurrence with readings as low as 0.03 ng/ml, and that it allows for earlier intervention with salvage therapy. More large-scale research is needed to confirm these early findings.

Some of the literature written against the use of uPSA goes back to 2000. Technology advances in sixteen years, and that would be my question to those opposed to the uPSA. At one point in time, I’m sure that doctors and scientists scoffed at the standard PSA test as being a newfangled, meaningless test that wouldn’t provide doctors or patients with actionable information, but it became widely accepted.

All I know and care about as a layperson is that there is upward movement on my PSA when there had been no movement for four years. Even if it’s just noise, 0.08 is getting awfully close to 0.1 and is halfway to 0.2—and it took just seven months for this to happen. That scares the crap out of me.

And, if I am destined to go down this path of recurrence, don’t even get me started on the whole conflicting and confusing guidance on salvage radiation and hormone therapy! I’ll save those discussions for future posts.

When you’re dealing with cancer, you really don’t want to wish for days to pass quickly, except when you’re waiting for test results and doctor appointments. April 19th can’t come quickly enough right now.

Day 1,977 – PSA Results

On By DanIn Emotional Aspects, Prostate Cancer, Recurrence9 Comments

Crap!!! (I used another four-letter word, but I would like to maintain a sense of decorum about this blog).

That little cancer cloud hanging over my head let loose a giant thunderbolt this week.

My PSA came back at 0.08 ng/ml, double what it was in December (0.04 ng/ml) and more than it was in September (0.05 ng/ml).

Did I say, “Crap!!!” ???

Even though it’s still below of the widely accepted 0.2 ng/ml definition of biochemical recurrence, I better start researching salvage treatments for recurrence because doubling in four months is not a desirable PSA velocity, at least in my pea-sized brain.

Did I say, “Crap!!!” ???

My appointment with the urologist is on 19 April, so I’ll have time to get prepared with tons of questions.

Crap!!!

PSA Trend

 

Day 1,861 – Meeting with Urologist

On By DanIn Prostate Cancer, Recurrence2 Comments

I met with my urologist this afternoon to review my now detectable PSA readings.

She was happy that the reading stayed essentially the same, and said that there’s no need for panic. However, she’s concerned enough that we’ll retest in four months and will probably continue to do that for the foreseeable future, just as I anticipated. This test-and-wait routine can go on for years.

One of the things that I need to work on is not putting my life on hold until the next test result. I found myself doing that between September and December, and that’s not a good thing. Time to just say to hell with this stupid cancer and move forward. If it comes back, it comes back and I’ll deal with it then.

Month 61 – Letter to the Newly Diagnosed

On By DanIn Diagnosis, Prostate Cancer, Recurrence8 Comments

A few weeks ago, one of my blog’s readers, a three-time cancer survivor, emailed me with a suggestion for a post topic: An open letter to the newly diagnosed, offering insights and support based on my own experience. I found the idea intriguing, so here goes…

Dear Newly Diagnosed Cancer Patient,

“You have cancer.” Three little words that will change the lives of you and your family forever. It’s terrifying. It’s bewildering. It’s overwhelming. It sucks.

Oregon Sunset 2Cry a little. Cry a lot. But strive to get through the initial shock and emotional reaction as quickly as you can. You’ve got work to do.

Don’t bother trying to answer the question, “Why?” You’ll spend too much energy to never get the answer. You’ll need to focus that energy on what’s ahead.

Don’t be ashamed that you have cancer. Have open and honest conversations about it with those around you; don’t bottle it up. Find a tidbit of humor in the situation and inject it into the conversation. When you do, people will feel more comfortable around you. Recognize, however, that some people will find being around cancer too difficult and will withdraw. Let them go, for their sake and yours. Most will return once they’ve had time to process what’s happening.

Relationships will be put to the test and may change. Remember that this isn’t all about you. It’s about those closest to you, too, and sometimes it can be more than they can bear. You’ll have to be the strong one for them. Don’t be surprised when some of your most casual acquaintances become your biggest supporters. Embrace them.

Become your own advocate. Research, research, and research some more. You may have the best medical team in the world, but question them. While they’re highly trained medical professionals, they’re still human. They may have their own self-interests in mind. If you ask a radiation oncologist what the best treatment option will be, he or she will likely say radiation. If you ask a surgeon, the answer will likely be surgery. You have to be comfortable with what’s right for you, knowing all the potential risks, side effects, and complications.

Seek out other patients who have had your cancer, whether a friend, a family member, or in a support group (or even through a blog). They can be the greatest resource available to you. They can tell you their first-hand experience and how the cancer and the treatment impacts their daily life. Recognize that each case is unique, so take their input with a grain of salt and realize you may not have the same result.

You can research and consult with your medical team until the cows come home, but at some point you’re going to have to make a decision. You. It’s your body and your life. You have to be comfortable that your research was thorough, and that you’ll make the best decision possible with the information at hand at that point in time. Then place your trust in your medical team to do the best they can.

You will be stressed. You’ll have “cancer” on the mind 24/7. Figure out ways to distract yourself from the cancer thoughts even for a few hours. Go to a movie, take a drive through the country, take a hike—whatever works for you. The stress can wear you down physically. Get plenty of rest after those sleepless nights; watch your nutrition. You’ve got to be as healthy as you can going into the challenges ahead.

All of this is far easier said than done. I know. Friends and family will offer assistance; take them up on their offers. They’re not there to pity you; they’re there to offer genuine help and support. Don’t let pride get in the way.

While we all hope for the best possible outcome, the harsh reality is that not everyone survives cancer. Make sure your affairs are in order, especially advanced medical directives, and that your family understands  and will honor your desires.

Being told you have cancer is not the end; it’s the beginning of a process.

In my case, I was diagnosed with Stage IIb prostate cancer, and the diagnosis was the beginning of my process to determine what treatment option was best for me. But even if you’re diagnosed with late Stage IV cancer and are considered to be terminal, it’s still the beginning of the process to figure out the best options for your remaining time.

Lastly, even if your cancer allows for successful treatment, cancer will always be in your thoughts long after the treatment ends. I’m five years out from my diagnosis and treatment, and a little “recurrence cloud” follows me around every day, as I wonder whether or not the cancer will return. Once you introduce cancer into your vocabulary, it’s there for good, whether the actual disease is there or not.

I wish you and your family all the best as you begin your own journey.

Dan

Day 1,852 – PSA Results

On By DanIn Prostate Cancer, Recurrence1 Comment

The results are in. My current PSA is 0.04 ng/ml. In September it was 0.05 ng/ml and prior to that it had been undetectable for four years.

So what does this all mean? Hell if I know. I’ll learn more from my urologist on 15 December. In the interim, here’s my take on it.

The PSA level is still well below the biochemical recurrence level of 0.2 ng/ml, so no need to panic.

I’m glad to see that it didn’t increase beyond 0.05 ng/ml. That means it’s consistent for now (why quibble over one one-hundredth of a nanogram) and perhaps the change in lab methodology to the ultra-sensitive PSA test is, in fact, what’s driving the elevated readings.

On the other hand, that may not make sense. The less sensitive PSA test (accurate to 0.03 ng/ml) would have been able to detect the 0.05 or 0.04 readings if my PSA was elevated prior to the conversion to the uPSA test. That tells me that my PSA has risen slightly in the last year.

I have to admit that I hoped for better news but am glad it’s not worse news. As I predicted a while back, I suspect we’ll continue to monitor my PSA on a more frequent basis (quarterly?) going forward for years to come.

I’ll share the urologist’s thoughts after the appointment on the 15th. Thanks for your kind thoughts and support along the way.

Day 1,844 – Unfazed & Unshaven

On By DanIn Emotional Aspects, Prostate Cancer, Recurrence2 Comments

I’ve been surprised by how unfazed I’ve been over my upcoming PSA test next week, the one that will confirm whether or not my post-surgery PSA is actually rising.

I’ve not let it get the better of me in my day-to-day life, which has been remarkably pleasant. That doesn’t mean that I’m not concerned about the results, though. We’ll cross that bridge when we get to it. No sense in spending a ton of energy worrying about the unknown.

I plan on having my blood drawn on Wednesday, but a potential hiccup at the clinic may alter that. The clinic is actually relocating down the block to a larger facility, and the move is supposed to be completed by Monday. With the luck, there won’t be any delay and the lab will be up and running to allow me to take the test as scheduled.

When this rising PSA fiasco began in September, I had the blood drawn on a Wednesday and saw my results online on Saturday. I’m assuming a similar timeline for this go around. I’ll keep you posted.

Oh. Come Tuesday, I’ll be delighted to lose my Movember beard and mustache. Good to highlight awareness, but they’re driving me nuts and it’s time for them to go. (Besides, given its almost pure white color, I don’t want to be confused with a jolly ol’ elf that will be making his rounds in four weeks!)