Tag: Prostate Cancer

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 1,974 – PSA Blood Draw

On By DanIn Prostate CancerLeave a comment

It’s funny how time, distance, and distractions can take your mind off things. I’ve been so busy in my new job and personal life lately, that I haven’t had any time for another case of PSAnxiety leading up to this morning’s blood draw. The remainder of the week and weekend will be equally busy (and distracting), which is a good thing.

The other thing that’s different is my indifference. I guess I finally came to the conclusion that there’s absolutely no rational reason to get all worked up about something that I can’t control. What will be, will be, and there’s no sense wasting all that energy driving myself nuts with worry. Wait for the results, then go from there.

Experience is a good teacher after all. I’ll post the results when I have them (or in my regularly scheduled monthly post on the 11th).

Month 64 – Rethinking How Aggressively to Treat Cancer

On By DanIn Emotional Aspects, Research, Sexual Function, TreatmentLeave a comment

Scrolling through my Facebook feed, I came across this interesting article, Gentler attack on cancer may mean that we can live with it longer, about taking a less aggressive approach to treating cancer in order to live longer. The theory is that, if you try to kill every cancer cell with a very aggressive initial treatment, any remaining cancer cells become resistant to further treatment and can be more problematic. If you take a slower initial approach to just contain the existing cancer cells, you may be able to extend your life.

I also came across this article, ASCO Endorses Active Surveillance for Prostate Cancer, recommending active surveillance over immediate treatment for those with low-risk prostate cancer (low-risk being defined as a Gleason of 6 or less). There appear to be some common sense reality checks that allow for exceptions to their recommendation as well. It’s an interesting read.

On my own front, I’ve been doing well emotionally knowing that my next PSA test is coming up soon. My appointment with the urologist is on 19 April 2016, but I’ll probably get the blood drawn when I’m scheduled to be in the clinic for another meeting on 6 April (my weight-loss group—81 lbs./36.7 kg lost!). That means I can probably get my results online around the 9th or 10th and, with luck, they’ll still be in the 0.04–0.05 ng/ml range (or less).

Speaking of luck, my streak of bad luck in 2016 continued. On my way home from my new job on my second week there, I was cut off on the highway by some yahoo not paying attention, and I had to stand on the brakes to avoid hitting him. Sadly, the gal behind me didn’t react quickly enough and rear-ended me to the tune of $2,500 USD in damages. <Sigh> Thankfully, insurance is covering the entire cost, as it wasn’t my fault—my deductible was waived. Of course, the guy who caused the accident drove off into the sunset without stopping.

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Biology Ahead!

Wow. I haven’t used that little warning symbol in a long, long time, but there is something to report (I meant to put it in my Life After Prostatectomy–60 Months Later post, but forgot).

One of the potential side effects of a prostatectomy is penile shrinkage. I’d say that I had noticed the change, but interestingly, things seem to have returned to pre-surgery size in the last few months. That’s something to discuss with my urologist in April (not that I’m complaining—just to see if it’s common for that to happen, and if it really takes five years for it to happen).

Life After Radical Prostatectomy: 60 Months Later

On By DanIn Life After Prostatectomy2 Comments
Moonrise over Algondones Dunes near Brawley, California
Moonrise over Algodones Dunes near Brawley, California

So it’s been 60 months since my radical prostatectomy. How am I doing?

That’s a little more challenging to answer with this update, as there’s been some change since my last six month update.

Status

For four years, my PSA had remained undetectable, but in September, not long after my 54-month update, my PSA moved from undetectable (<0.03 ng/ml) to 0.05 ng/ml. Not a huge number and not close to the biochemical recurrence definition of 0.2 ng/ml, but concerning enough to both me and my urologist that we did a follow-up PSA test in December. Those results came in at 0.04 ng/ml. The urologist said there was no need to panic, but was also concerned enough to put me back onto a four month testing cycle again. This could likely go on for years.

Emotions

That unexpected movement in my PSA sent me on an emotional ride rivaling any looping theme park roller coaster, at least initially. As we get into the test, wait, test again, wait some more mode, I have to be wary of letting myself get trapped in a state of suspended animation. Between the initial test results in September and the follow-up test in December, I placed my life on hold for those three months. I can’t do that. I have to live between each test going forward, knowing that perhaps someday the reality will be that the cancer is back.

Incontinence

I continued with my weight loss program (75 lbs. / 34 kg), and that has certainly helped with my incontinence. But then I caught a cold in October that just wouldn’t relent, and during most of that time, I found myself back in pads as insurance when I coughed, sneezed, or blew my nose hard.

Since then, I’ve noticed there have been a few days where I may be more tired, and I may be prone to some very slow seepage that has been a little disconcerting.

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.

Support Group

You would have thought that I might have sought out help in the form of a support group earlier than five years into this journey, but I didn’t until now. I joined the Gay Men’s Prostate Cancer Support Group here, mainly to see if anyone had any insights into the social aspects of trying to date after a prostatectomy. I’ve only been to two meetings so far and it has been beneficial to hear what others continue to go through. I’ll keep at it for a while longer and be there to share my own experience with a couple of the newly diagnosed members.

Summary

Yes, I’m one of the 98% of men diagnosed with prostate cancer to hit the five year survival mark. But with an increased PSA over two readings three months apart, I have to admit that I am a bit more concerned about the notion of recurrence.

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 1,844 – 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!)

Five Years

On By DanIn Prostate Cancer2 Comments

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

On By DanIn Emotional Aspects, Incontinence, Prostate Cancer, RecurrenceLeave a comment

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

On By DanIn Emotional Aspects, Recurrence2 Comments

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

On By DanIn Emotional Aspects, Prostate Cancer, RecurrenceLeave a comment

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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