Month 61 – Letter to the Newly Diagnosed

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 1,844 – Unfazed & Unshaven

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!)

Five Years

It was five years ago today that my biopsy results were delivered: It’s prostate cancer.

Five years later, I’m back in the waiting-and-wondering mode as I wait as patiently as I can for my next PSA test to see if my September PSA reading of 0.05 ng/ml was a fluke (readings for the previous four years always came back undetectable), or if it’s the beginning of an upward trend and a trip to recurrence.

I plan to have my blood drawn on 2 December and should be able to get my results online 3-5 business days later. My appointment with my urologist is on 15 December.

On the whole, I’ve been doing pretty well emotionally. I’ve put this onto the back burner for now, but I’m finding that, as I get closer to the blood draw (it’s just three weeks away), I’m becoming a tad more moody. There are days where I’m doing quite well, and there are days where I simply think, “I really don’t want to go through this again.”  In the interim, I have been reading about recurrence and treatment options to get myself a little smarter about it all. With luck, I won’t have to put that research to use.

Let’s keep our fingers crossed…


On the general health front, I spent a good chunk of October fighting a cold. It went on for over 4 weeks and just wouldn’t relent. (Some coworkers suffered the same fate, and my doctor confirmed that it was just a cold–no pneumonia or bronchitis–and I just had to ride it out.)

With all of the coughing, I returned to my incontinence pads as insurance, and they were definitely needed some days. I will say, however, I’ve continued my weight loss program, and being 67 lbs. /30 kg lighter, has really helped decrease the severity of the stress incontinence.  It would have been far worse had I had this cold a year ago.


I attended my first prostate cancer support group last night at the San Diego LGBT Center. It’s something I’ve been meaning to do since September, but life kept throwing me curve balls. Even five years into this adventure, there definitely was value in hearing perspectives of other guys. I’m glad I attended.


Finally, you would have thought that after five years of blogging, I’d be better connected in the blogging community. Let’s just say that I’m apparently a slow learner and it’s only been in the last few months that I’ve discovered how to open doors to other bloggers.

A few weeks ago, I came across Mansacked: A Blog About Prostate Cancer written by a gentleman five months into his experience with prostate cancer.  He, too, has been very open in his discussion which, to me, is very important. Check it out.

 

Month 59 – Resigned

It’s been an interesting month, that’s for sure.

The emotional roller coaster ride of learning that my PSA moved upward has come to an end for now. In fact, I’ve pretty much resigned myself to the fact that it is what it is, and there’s little that I can do about it other than wait.

Have I resigned myself to the idea that the cancer is coming back? I don’t know. Perhaps. I certainly don’t want it to come back, but I’m coming to terms with the fact that it’s within the realm of possibility in a way that it hadn’t been before the increase in PSA. If I’ve resigned myself to anything, it’s that I’ll have plenty of PSA tests going forward, along with the associated anxiety that comes with each.

I remember my surgeon telling me there’s an 80% chance that I’ll be cancer-free at 10 years, so that means that there’s a 20% chance that it will be back. For some reason, my gut instincts are telling me that I’ll be in that 20%. I don’t know why. Perhaps it goes back to my first solo trip abroad.

I was flying from the United States to Japan as a midshipman going on my summer training cruise, and I was flying on a military charter that landed at Yokota Air Force Base. On arrival, they told us that 20% of us had been selected at random to go through a thorough customs inspection. I was one of the 20%. They dumped my duffle bag’s entire contents onto a nice stainless steel table, went through everything, and told me to repack it in less than 5 minutes. Just my luck.

I know. A silly comparison. Still, it’s how my luck runs sometimes. December will be an indicator as to whether that rule will apply or not.


I’ve been battling an early season cold for about two weeks now, and it just doesn’t seem to want to let go. The stress incontinence was remarkably good during the first week, but when the cold moved into my chest the second week, I went back into pads for protection as I coughed and coughed.

Perhaps the stress of the PSA results weakened my system a tad, but most likely, it’s just that I work in a museum where lots and lots of people–especially kids–come through.  Oh well.

DJTPC

Day 1,781 – Grappling with PSA Anxiety

Wow. This is going to be tougher than I thought.

Ever since that stupid PSA test crept upward from undetectable to detectable at 0.05 ng/ml, I can’t seem to get that fact out of my brain. Even when I can focus on something other than that, it’s still ever-present, lurking in the background ready to consume my thoughts at the first distraction.

Interestingly, I’m not sure it’s the possibility of the cancer returning that I fear, or even the side effects of potential salvage treatments (although some of those can be quite scary). It’s too early to think in those terms. My immediate concern is more about having to play this freakin’ waiting game and the possibility that I’ll be playing this waiting game every three to six months for years to come.

Yes, I’ve already suffered through PSA anxiety after the surgery, so you think I’d be used to it by now. But in a post-surgery world, each time the result came back undetectable, my confidence that I was one step farther away from cancer grew. Now the situation is reversed. With each test, it’s no longer an affirmation of the good news that I already knew (undetectable); now it’s a reason to worry about the unknown. “Did the PSA move upward? If so, how much and how quickly? How many ng/ml am I closer to recurrence?”

I know that each day is a gift and that we’re to live in the moment. Now, though, I feel as if I’m in a state of suspended animation, waiting for 2 December to roll around for the next needle prick. That can’t be. I need to be living for today in case tomorrow I cross the 0.2 ng/ml threshold.

Early in this adventure, I said that we can’t always control what happens to us, but we can control how we react to it. It’s time I followed my own advice–gain control over this PSA anxiety monster.

Wish me luck.

Stupid cancer.

Day 1,773 – Waiting Sucks

As you can tell from the title of this post, it’s going to be a long three months.

This morning, my mind was filled with thoughts of prostate cancer and it took considerable effort to get focused on the task at hand at work, but I eventually succeeded.  Some of the thoughts centered on the fear of the unknown and the long wait to get to the known, and others were more administrative in nature regarding this blog.

Sometimes I think pulling the plug on this blog would be just what the doctor ordered. By maintaining it, it forces prostate cancer to be in the forefront of my mind at least monthly.  But I also know that by not maintaining it, that isn’t going to make my current predicament go away, so I may as well blog about it.  I’ve learned things from others in the process of doing this, and I know that sharing my experience has helped at least a handful of people along the way.  Besides, when you’ve been doing something religiously for almost five years, it’s a tough habit to break.

Of course, it being Prostate Cancer Awareness Month keeps the topic in my news feeds, too, and I feel compelled to work to increase awareness, so I guess I’ll just keep reading the stories.

On the bright side of this, the initial panic and fear have subsided.  I’m down to rational thought on what I should be doing or researching next.

Okay.  It’s late. I’m rambling.  Thanks for letting me think aloud. I’ll get this under control and will work on my patience…  Really.

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Day 1,770 – Let the Waiting Begin

It’s amazing how people in southern California forget how to drive when a little liquid sunshine falls from the sky.  Focusing on the horrible traffic in the rain kept my mind off the discussion that I was about to have. As soon as I plopped into the chair in the waiting area, the anxiety level shot back up.

The good news is that I’m not an overreacting drama queen. The bad news is that the doctor shared my concern about the movement in the PSA, but with a significant caveat.

In March of this year (after my PSA test in January and before this one in September), the hospital switched over to using the new ultrasensitive PSA test, so comparing numbers from January to September may not be a direct apples-to-apples comparison. With the new test, some of her other patients are experiencing the same phenomenon–undetectable for years, and now coming in at 0.03 – 0.05 ng/ml with the new test.

She did say, however, that she was concerned enough that this “warrants watching” to try and figure out what’s really going on, and she wants me to return in three months. The September reading will, in essence, be a new baseline uPSA, and we’ll see what December’s has to offer.

Doing the test sooner (like this afternoon!) would be too early after the 2 September test. By waiting three months, we’ll get better insight into what’s happening and what the uPSA velocity may be if it continues upward. The faster the increase, the more urgent the need for subsequent treatment.

We did briefly discuss what would happen if there are signs of recurrence. One of the first things that may come into play is getting a bone scan to see if it has spread. We talked of salvage radiation therapy (SRT) and a little about hormone therapy as options when we get to that point. We didn’t go into a lot of detail on either, mainly because I didn’t press for a lot of detail at this point and virtually everything she said fell in line with the research that I had done. It’s far too early to be thinking in those terms because we don’t know what we’re dealing with yet.

I did mention the recent studies that indicated that a 0.03 ng/ml reading on a uPSA was showing itself as a predictor of biochemical recurrence, and she really didn’t offer any insights on that one way or the other.

It appears that I’m probably headed back to a quarterly testing schedule for a while until we figure out exactly what’s happened. Just a change in testing methodology? Rising PSA?  Full moon?

My next appointment is 15 December. Merry Christmas!

Let the waiting begin.

[We now return you to our regular blog posting schedule, or at least until I have my next freak-out.]

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200th post!!

Day 1,769 – Getting Prepared

It’s the day before my meeting with my urologist, and I’ve been scribbling down the questions that I’m going to ask tomorrow. The Boy Scout in me  is coming out: Be Prepared.

Emotionally, it’s been one of my better days in the last few days. Yesterday, I was mad as hell in the morning and sad by sunset.

One of the infuriating things about this whole adventure is that there’s just sooo much information that’s out there, and there are so many different approaches to the same issue, that it makes it extraordinarily difficult to sift through it all and make sense of what I should do next. Then, of course, there’s the inherent bias introduced by perspective. Talk to a urologist, get one opinion; talk to an oncologist, get another; talk to a surgeon, get a third. While they all care about their patients, let’s face the fact that they are running a business and that can influence recommendations.

A case in point is the fact that a few days ago, I read something that made me think I would be a good candidate for salvage radiation therapy based on my Gleason score and time to PSA increasing. The next day, I read that, because I had negative margins, SRT wouldn’t really be an option, as the cancer would be outside the prostatic bed. Maybe I was just too drained and misread one or the other, but it sure can be confusing.

With luck, I’ll have some answers by lunchtime tomorrow.  Look for an update in the afternoon where hopefully I’ve been proven to be an overreacting drama queen.

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Day 1,768 – More Research & More Questions

Even I thought I may have been overreacting to the change in my PSA, and that I may simply be embarrassing myself spouting off the way I have.  Still, it’s better to vent and look silly than ignore the potential problem.

Of course, I had to continue my research, and the more I dug, the more I learned, and the more I began to believe that I may not be overreacting at all.

In this instant Internet information age, it’s easy to find tons of material.  In my Month 58 – Welcome to PSA Anxiety post, I quoted a Dr. Chan from Johns Hopkins University:

On a technical level, in the laboratory, Chan trusts the sensitivity of assays down to 0. 1, or slightly less than that. “You cannot reliably detect such a small amount as 0.01,” he explains. “From day to day, the results could vary — it could be 0.03, or maybe even 0.05” — and these “analytical” variations may not mean a thing. “It’s important that we don’t assume anything or take action on a very low level of PSA. In routine practice, because of these analytical variations from day to day, if it’s less than 0. 1, we assume it’s the same as nondetectable, or zero.”

On closer examination and research, though, that quote came from early 2000, over 15 years ago. There have been advances in technology in 15 years.  Lesson learned: Even though the information came from a trusted source, it may not be the most current.  Read the dates!

There have been subsequent studies by UCLA and even Johns Hopkins that suggest that today’s ultrasensitive PSA tests (uPSA) are more reliable and can, in fact, be good predictors of biochemical recurrence (BCR).

From one article on the Prostate Cancer Infolink website:

Ultrasensitive PSA reliably predicts eventual biochemical recurrence (a UCLA study)

Researchers at the University of California, Los Angeles (UCLA) looked at available evidence that the uPSA test might afford radiation oncologists the opportunity to treat patients late enough that they are assured to be on a path to clinical recurrence, yet early enough that waiting for treatment does no oncological harm. Kang et al.conducted a retrospective analysis of data from 247 patients treated at UCLA between 1991 and 2013 who were found on post-op pathology to have aggressive disease characteristics — stage pT3-4 disease and/or positive surgical margins — and who received uPSA tests….

Kang et al. found that a uPSA ≥ 0.03 ng/ml was the optimal threshold value for predicting biochemical recurrence (BCR). Other findings included:

  • uPSA ≥ 0.03 ng/ml was the most important and reliable predictor of BCR. It predicted all relapses (no false negatives: no one was under-treated), and hardly ever predicted relapses incorrectly. Only 2 percent would be over-treated by waiting for this cut-off.
  • It was especially prognostic if found on the first uPSA test after surgery.
  • Even if the first uPSA test was undetectable, any subsequent test where uPSA ≥ 0.03 ng/ml predicted BCR.
  • Other lesser predictors of recurrence were pathologic Gleason grade, pathologic T stage, initial PSA before surgery, and surgical margin status.
  • At 5 years of follow-up, 46 percent of patients had a BCR using the “standard” PSA ≥ 0.2 definition, 76 percent using the PSA ≥ 0.03 definition.
  • Treating when an ultrasensitive PSA level reached 0.03 ng/ml gave a median lead time advantage of 18 months over waiting until PSA reached 0.2 ng/ml.
  • It was necessary to monitor PSA for at least 5 years post-op, and to test at least every 6 months.

That study used the histories of men with aggressive prostate cancer; mine was not.  I didn’t have positive margins and my tumor was classified T2c, so perhaps these findings are less applicable to me.  Still, the line:

Even if the first uPSA test was undetectable, any subsequent test where uPSA ≥ 0.03 ng/ml predicted BCR.

…is something that I definitely want to talk to the urologist about given that I’m at 0.05 ng/mL.  But I’m not going to get too worked up about it (I hope), because the Johns Hopkins study seemed to be broader in scope with less scary results.  However, both studies seem to indicate that the 0.03 ng/mL can be a threshold for predicting BCR.

On the other hand, Walsh writes:

Radiation also was not likely to help men who had negative surgical margins. “This is logical,” explains the Johns Hopkins radiation oncologist Danyy Y. Song, “because patients with negative margins whose PSA persists after surgery are more likely to have residual disease outside of the prostatic bed, as opposed to those whose margins were positive at surgery, where disease is likely to remain in the area.” (and thus can be targeted with radiation).

I had negative surgical margins, so this can take the discussion with the urologist in a entirely different direction.  Another question for the list.

I know that all this research in advance of the meeting with the urologist is a form of self-inflicted torture causing anxiety, frustration, and confusion. But I’d rather ensure that I’m knowledgeable than go into the meeting with my head in the sand. Knowledge is power.

The bottom line: I’m going to keep researching and learning (with a critical eye and more than a grain of salt).  If, in the end, I’m proven that I overreacted and had nothing to fear, then I’ll be happily embarrassed and a bit smarter about uPSAs and biochemical prostate cancer recurrence.

On the other hand, if God forbid, I do have to journey down the BCR path, I’ll be steps ahead of the game and can advocate for myself with my medical team.

Is it Tuesday yet???

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Month 58 – Welcome to PSA Anxiety

prostate-cancer-awareness-hero-806x307,0Blindsided.

That’s how I was this morning (I’m writing this on 5 September) when I hopped online to check on my PSA results.

Ever since my surgery in January 2011, my post-surgery PSAs always came back as <0.03 ng/mL; this time, it came back at 0.05 ng/mL. Shocked, stunned, heart-wrenched, panicked.  Yep, that was me, and then some.

Because my appointment with my urologist isn’t until 15 September, I immediately began searching for information online about increasing PSA levels after prostatectomies to learn what this meant.  Of course, I know the big picture: If PSAs go too high, “It’s baaack!” But what about from <0.03 to 0.05?? Is that significant?  If so, how so?

The Prostate Cancer Foundation and Johns Hopkins came to my rescue and calmed some of my frayed nerves.  I’m breathing again.

In the PCF article, “The Role of PSA,” they reminded me:

After prostatectomy, the PSA drops to “undetectable levels,” typically given as < 0.05 or < 0.1, depending on the lab. This is effectively 0, but by definition we can never be certain that there isn’t something there that we’re just not picking up.

It’s good to know that 0.05 ng/mL was still considered to be undetectable, and that recurrence was defined:

In the post-prostatectomy setting, the most widely accepted definition of a recurrence is a PSA > 0.2 ng/mL that is seen to be rising on at least two separate occasions at least two weeks apart and measured by the same lab.

There’s no need for me to be in full panic mode at the moment, but that doesn’t mean that I’m not concerned.  The most disconcerting thing for me is that there was movement in the PSA reading and that this may be the beginning of an upward trend.  Or it may simply be a blip in the readings. I’m doing my best to not let emotions overtake facts.

Johns Hopkins has a great article about the topic that also helped me calm down after reading it:

On a technical level, in the laboratory, Chan trusts the sensitivity of assays down to 0. 1, or slightly less than that. “You cannot reliably detect such a small amount as 0.01,” he explains. “From day to day, the results could vary — it could be 0.03, or maybe even 0.05” — and these “analytical” variations may not mean a thing. “It’s important that we don’t assume anything or take action on a very low level of PSA. In routine practice, because of these analytical variations from day to day, if it’s less than 0. 1, we assume it’s the same as nondetectable, or zero.”

I’m really anxious to talk with my urologist about the plan going forward, and waiting the ten days between now and then will be difficult.

I would hope–and push–for another PSA test in a month or so and then, depending on its results, stepped up frequency of testing if it’s at 0.05 ng/mL or higher.  That, of course, will open the door to the wonderful world of PSA Anxiety: Test, wait, worry; test, wait, worry; test, wait, worry.

I remember how anxious I was going in for my first PSA test after the surgery and, over the last 4 years and 8 months, that anxiety dwindled.  For this week’s test, it was just a matter of routine.  I was excited to be able to call myself “cancer-free” just shy of the five year mark. Now this happened, calling that five year milestone into question (at least in my mind; perhaps not in that of my urologist).  Silly me.

I was hoping that the cancer cloud hanging over my head at this point was withering away to a thin, wispy little cirrus cloud.  Instead, this morning, I got this:

448d4-t-storm

Once cancer is introduced into your vocabulary, it’s there for good.  Period.