Month 58 – Welcome to PSA Anxiety

On By DanIn Prostate Cancer1 Comment

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.

New Home

Please note there’s a new, simpler URL for this blog:

dansjourney.com

Hopefully, that makes it a tad easier to get to if you haven’t subscribed to receive email updates.  Don’t worry. The old URL, dansjourney2014.wordpress.com, will still work, too.

On By DanIn Prostate CancerLeave a comment

Prostate Cancer Awareness Month

On By DanIn Prostate Cancer1 Comment
prostate-cancer-awareness-hero-806x307,0
Image from cityofhope.org

It’s September and that means it’s Prostate Cancer Awareness Month. One in seven men will develop prostate cancer in their lives.

Please take time this month to understand and learn more about prostate cancer and to spread the word.  Awareness saves lives.

If you haven’t been checked recently (or ever), make an appointment with your doctor.  It was a screening during a long-overdue physical exam that caught my cancer, and here I am 4 years, 9 months, and 21 days since my diagnosis, still alive and advocating for prostate health.

The Prostate Cancer Foundation offers a great overview for those wanting to learn more.  Check it out here.

On a related note, I go for my next PSA test this week.  Results to follow in my next regularly scheduled post if I have them by then.

 

Month 57 – Overcoming Self-imposed Barriers

On By DanIn Prostate Cancer, Social AspectsLeave a comment

Before jumping into the meat of this month’s post, please remember that September is Prostate Cancer Awareness Month.  Spread the word.  Take time to learn about prostate cancer risks, diagnosis, and ever-differing treatment options from your physician or from other great resources.

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Where to begin?

Physically, things have been going pretty well for me, but for the last month or so, I’ve been struggling more and more with the social and emotional impact of my radical prostatectomy.

Most men who are old enough to be diagnosed with prostate cancer are already in a relationship and have been for years.  They’ve got a supportive partner who, hopefully, stands by their side long after the treatment has been given.  You sign up “for better or for worse,” and you stick it out.

But not me. I was single when I was diagnosed, and I’m still single today.

Before I get into why this has been bugging me so, a bit of context is in order.

If you’ve taken the time to read my biography in the About Me section, you already know that I’m gay. I was a late bloomer who put himself in circumstances that made it difficult to have a relationship as a gay man.

I spent 12 years as an officer in the United States Navy, long before “Don’t Ask, Don’t Tell” was enacted.  Having a relationship while on active duty just wasn’t going to happen. I was too afraid of losing my career if anyone ever discovered that  was gay.

When I left the service, I landed back in my home state of Illinois for my master’s degree, and then in a small town of 6,000 people in rural southeastern Indiana working in a manufacturing management role for 17 years.

Given the recent news about gay rights issues in Indiana, you can understand, too, why I remained closeted there. Too many of my coworkers–mostly management–expressed homophobic views that made me wary of being open about myself.  I perceived that there were real risks to my career if I came out.

After my prostatectomy, things at work were changing to the point where I dreaded getting out of bed and heading to the office.  Having been diagnosed with cancer, I realized tomorrow isn’t guaranteed, and if I wanted any shot of finding someone to share my life with, it wasn’t going to happen in Indiana.  It was time to act.

So in January 2012, a year after my surgery, I bought a house in the San Diego area (I had been stationed there in the Navy and fell in love with it); I quit my job in March; made the move in April; and sold my Indiana home in May (not exactly the normal sequence of events for such a major transition).  I had been given a second chance, and I was going to take full advantage of it.

My best-laid plans of finding Mr. Right hit a snag–a psychological snag.

In my mind, I threw up this impenetrable wall concerning sex after a prostatectomy.  I viewed myself as “damaged goods”–difficulty getting and maintaining an erection and dry orgasms–and simply didn’t know how to sell that to a potential partner.  True, sex is not everything in a relationship, but it can and should play an important part.

That concept of being damaged goods paralyzed my efforts to hit the dating scene.  “How do I tell them?  What do I tell them?  When do I tell them?”  In my mind, I couldn’t move forward until I had answers to those questions.

Thankfully, I have a dear friend who, I swear, knows me better than I know myself.  She gave me a cross-country slap upside the head from her home in Maryland that knocked some sense into me.

The only way that I’m going to get answers to those questions is through my own personal experience of getting out there and trying to date.  Each guy will respond uniquely and differently than every other guy, so there’s no sense trying to come up with a one-size-fits-all approach.  Some will want to know on the first date; should things progress so far, others may wish that I told them before taking things to physical intimacy (“Oops!  Surprise!”); and others will be thankful that I won’t be ejaculating all over their brand new 600-thread count Egyptian cotton sheets.

It’s time to break down the remainder of that psychological barrier and get out there and see what happens. I’m sure that there will be ups and downs with rejections happening more often than not, but that’s okay.  It’s time to move forward with that second chance I’ve been given.

Month 56 – Watchful Waiting Increases

On By DanIn Prostate Cancer, Research5 Comments

I was struggling with a topic for this month’s post.  You read in my 54-month update that things are going well for me, and I hate sounding like a broken record month after month.  But then this article appeared and I knew that I had to comment on it.

“Watchful Waiting” Becoming More Common for Prostate Cancer Patients

As a certified geek who likes numbers, I get the science and statistics behind moving to a watchful waiting or active surveillance model.  As a human being, putting “wait” in the same sentence with “cancer” is so counter-intuitive that it boggles my mind.  But, as a human being living with a mild version of the common side-effects of treatment (incontinence and impotence), it also makes me wonder if the watchful waiting approach could have been for me.  That conundrum is the infuriating part of being diagnosed with prostate cancer.

Treatment decisions are very personal.  If I was 65, 70, or 80 years old when I was diagnosed and I was a candidate for watchful waiting, I may have given it much greater consideration as an option.  But I wasn’t.  I was 52 years old when I was diagnosed, and in my mind I wanted to maximize my chances of getting to 65, 70, or 80 years old.  I wanted a Plan A (radical prostatectomy) and the option for a Plan B (radiation, chemo, hormone therapy, etc.) in case Plan A wasn’t effective.

Was I “over-treated,” as the article suggests so many prostate cancer patients are?  That’s one of those nagging but unanswerable questions.  I’m alive, and it is what it is at this point.  No going back.

So if you’re newly diagnosed, I’m sorry to say that you have some tough choices ahead of you.  Do your research; decide what’s important to you and what you can live with (or without) in a post-treatment world; and take as much time as you need to come to a decision that you can live with for the rest of your life.

Trends in Management for Patients With Localized Prostate Cancer, 1990-2013

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Life After Radical Prostatectomy: 54 Months Later

On By DanIn Incontinence, Life After Prostatectomy, Prostate Cancer, Sexual Function, Side Effects2 Comments

So it’s been four and a half years since my radical prostatectomy.  How am I doing?  (Remember, what follows is a graphic description, so proceed only if you want to read…)
Continue reading “Life After Radical Prostatectomy: 54 Months Later” →

Home Run Challenge, 15-21 June

On By DanIn Prostate CancerLeave a comment

The Prostate Cancer Foundation and Major League Baseball join forces next week to raise funds to help find a cure for prostate cancer with their annual Home Run Challenge.  Check it out.

Now if we could only get the National Football League to do something similar in September during Prostate Cancer Awareness Month before they start wearing pink in October for Breast Cancer Awareness Month…

 

Month 55 – Sick of Being Sick

On By DanIn Incontinence, Prostate CancerLeave a comment

I hate getting sick.

The week before Memorial Day weekend, I came down with a nasty end-of-spring head cold that kept me home from work a couple of days.  It also put me back into incontinence pads.

Heavy coughing certainly increased the likelihood that I would have stress incontinence episodes, so I started wearing pads as insurance.  I’m glad that I did, because several times they were definitely needed.  I will admit, however, that I did better than I expected in many cases, and I attribute that to my recent weight loss.

The one thing that I’ve had difficulty controlling is stress incontinence while I’m standing.  If I’m standing or walking when I sneeze or cough, there’s a much greater likelihood of leakage, no matter how hard I try to control my pelvic floor muscles.  That’s where the pads came in really handy.

The unfortunate thing with this head cold is that, even though the worst of it lasted only a couple of days, the nagging cough lingered for a good week and a half after.  Ugh.

The moral of this story: Keep pads on hand for those unexpected times when you may need them.

This recent Prostate Cancer Foundation article, Excess Weight Linked to Worse Prostate Cancer Diagnosis, reinforces my will to keep losing weight.  Sure, it may be a case of me closing the barn door after the horses have escaped, but getting to a healthy weight can only be a good thing in the long run for a whole host of reasons.

 

 

Month 54 – Walking for Better Outcomes

On By DanIn Incontinence, Prostate Cancer, Research, Sexual Function, Side EffectsLeave a comment

I came across this article, Walking Boosts Outcomes for Prostate Cancer Survivors, on the Prostate Cancer Foundation website a few weeks ago, and it struck a chord with me.

When I began my weight loss regimen back in December, I made a concerted effort to increase my physical activity, mainly in the form of walking.  I’m not close to the level of activity that is talked about in this article, but it has helped with losing weight and with mitigating some of the minor side effects I had been experiencing post-surgery.

I know it’s only anecdotal observation on my part, but I feel that the number of stress incontinence episodes are down and, when I do have them, they’re not as significant as they once were.  I’d like to say, too, that it’s improved my erectile dysfunction, but, if I’m being honest, I’m not so sure that it has.  If it has, it’s only been slightly.  At least things aren’t getting worse.

Month 53 – Cancer Sucks

On By DanIn Diagnosis, Prostate CancerLeave a comment

It’s not been a good month for my friends.

One learned that her husband was diagnosed with colon cancer and the other learned his mother was diagnosed with lymphoma.  Cancer sucks.

Another friend who’s been through her own cancer battle shared this article on her Facebook page, and it’s worth the read, even if you’re not newly diagnosed.

The Things I Wish I Were Told When I Was Diagnosed With Cancer

I wish my friends and their families well as they go through this new journey.

As far as my own journey is concerned, I’m living my new normal just fine every day.  Quality of life is good.

And that’s about it for this post.