Author: 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 1,849 – Pricked

On By DanIn Prostate Cancer4 Comments

I arrived at the clinic right at the scheduled opening time, and nine people were already checked in ahead of me. After waiting 1 hour and 25 minutes, my arm was pricked and the blood was drawn for my PSA test.

Now the waiting begins. With the impending weekend, I’m not sure that I’ll have my results before Monday.

Day 1,848 – Blood Draw

On By DanIn Prostate CancerLeave a comment

Went to get my blood drawn at noon only to learn that the clinic lost the contract for two of its three lab technicians, so they cut back the lab’s hours to end at 11:30 a.m. No blood drawn today.

Needless to say, I’m pissed.

Now I either take off work tomorrow to get the blood drawn, or I wait a week until my next day off. Guess I’ll be late for work because, psychologically, I was geared up for everything to happen this week. Not sure I’m up for waiting another week to ten days.

More to follow.

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!)

CMS issues inappropriate proposal to “discourage the use of PSA-based screening”

On By DanIn Prostate CancerLeave a comment

Now the Centers for Medicare and Medicaid Services (CMS) are pushing to discourage PSA testing based on the USPSTF recommendations. You can provide input (by 20 November) by submitting a comment to CMS.

Sitemaster's avatarTHE "NEW" PROSTATE CANCER INFOLINK

Apparently our friends at the Centers for Medicare and Medicaid Services (CMS) have misunderstood the details of the D recommendation about PSA screening for prostate cancer issued by the U.S. Preventive Services Task Force (USPSTF) in 2012, and are now seeking input on a proposed mechanism ““to discourage the use of PSA-based screening in the general population of men,” on the grounds that, “A lower rate on this measure indicates better performance.”

The problem is that the actual proposal goes way beyond “discouraging PSA screening” because it would actually discourage any use of the PSA test in an otherwise healthy male. Even the USPSTF never went anywhere close to such a recommendation! The recommendation as written is, at best, strange and ill-advised — even if one thinks that mass, population-wide, PSA-based screening for risk of prostate cancer is not one of the world’s greatest ideas.

Prostate Cancer International is currently…

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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.

 

The “best” form of first-line treatment for clinically significant, localized prostate cancer

On By DanIn Prostate Cancer, ResearchLeave a comment

This is a compelling read for anyone newly diagnosed, highlighting why it’s so difficult to determine the best course of treatment. To me, the most telling statement in the article was:

The loser for the ensuing 35 or so years has been the patient. We really have no clear idea at all what “the best” way is to treat a man with clinically significant, localized prostate cancer who really does need early whole gland treatment, … and we haven’t known for decades.

If the experts can’t figure out the best treatment option, then how are we as laymen supposed to be able to figure it out?

Sitemaster's avatarTHE "NEW" PROSTATE CANCER INFOLINK

From the perspective of the disinterested observer, one of the very least edifying aspects of issues related to the management of prostate cancer has been the nearly 50-year-long “discussion” between the urology community and the radiation oncology community about the most appropriate way(s) to treat localized disease.

Prior to the initiation of the ongoing ProtecT trial in the UK, there had only ever been three, very small, “completed” trials that made any attempt to randomize patients with localized prostate cancer to radical prostatectomy or radiation therapy. These three trials were conducted by the Uro-Oncology Research Group between 1974 and 1978, and the results were reported by Paulson et al. between (if memory serves) 1979 and 1984. The trial results were based on data from small subsets of the patients, and for a summary of the list of problems said to be associated with at least one of these studies and…

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USPSTF to re-assess harms and benefits of PSA-based screening for risk of prostate cancer

On By DanIn Prostate Cancer, ResearchLeave a comment

This is a very important opportunity to let our voices be heard with respect to the recent USPSTF changes in PSA screening recommendations.

Sitemaster's avatarTHE "NEW" PROSTATE CANCER INFOLINK

Yesterday the U.S. Preventive Services Task Force (USPSTF) posted detailed information about a new draftresearch plan related to screening for prostate cancer.

The USPSTF is seeking public comment on this plan, which can be reviewed here, and public comment can be submitted from now through November 25, 2015.

Prostate Cancer International has already submitted detailed comments on this draft research plan to the USPSTF through the USPSTF web site. Doing this is not complex, but it can take a little time, and we would encourage those who are interested in making such comment to be thoughtful in so doing.

Here is a list of just a few of the comments submitted by Prostate Cancer International with respect to the plan:

  • It is unclear whether the plan and the related research questions were written before its authors were aware of the data published yesterday in the New England Journal…

View original post 875 more words

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.