Category: Prostate Cancer

Month 69 – On Reflection

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

It’s been a week since my last PSA results came in—it seems like eons ago—and I really have been able to just ignore them for pretty much the entire time. That’s good.

With the yo-yo movement in my PSA over the last 4 tests, I can’t conclude much of anything aside from the fact that there will be more PSA testing in my future.

PSA Trend 20160803

The engineer in me reflected on the last year of testing looking for some logical explanation.

I do remember that a year ago, just before the September test, I made the mistake of having an orgasm within 24 hours of the test. I thought that may have explained in the increase from undetectable to 0.05 ng/ml. But then the doctor threw in the possibility of the new ultra sensitive PSA test skewing the results. Two variables that weren’t present for the previous undetectable test.

For the December and April tests, I eliminated one variable by abstaining from orgasms for a nearly a week before the blood draw. The doctor asked me to abstain for two weeks for the August test, and I did.

If the next PSA test 3–4 months from now stays in the 0.05–0.08 range, I’ll be more inclined to think that this is a result in the change to the ultra sensitive test and nothing more. (Part of me wants to go to another lab for an independent test and see what it produces, but that will just introduce one more variable when we’re trying to eliminate them.)

At 0.05–0.08 ng/ml, I’m still well below the widely accepted biochemical recurrence threshold of 0.2 ng/ml. That generally makes me breathe a sigh of relief, and I think that I can come to terms with living with those numbers if that’s all it is.

But a UCLA study published in May 2015 showed that, under certain conditions, the ultra sensitive PSA threshold of 0.03 ng/ml was a good predictor of recurrence.  Yes, it was a small (247 patients) retrospective study, but that little fact has stuck in the back of my mind and gives me concern. (I wrote in more detail about it in my Day 1,768 post.)

There was also a Johns Hopkins study published in February 2016 that also indicated that low PSA levels measured by an ultra-sensitive PSA test were predictors of recurrence.

So I’m going to just wait until the doctor appointment on 23 August and see what she has to say about all this. It will be interesting—maybe even entertaining.

Day 2,093 – The Results

On By DanIn Emotional Aspects, Prostate Cancer, Recurrence13 Comments

PSA Trend 20160803The results are in: 0.05 ng/ml.

I simultaneously breathed a humongous sigh of relief and got pissed off. “Will you make up your freakin’ mind already!?!?” Yes, I’m elated that my PSA actually came down from 0.08 to 0.05, but I’m pissed that this raises more questions than it will answer, and that I’m going to have to keep riding this wild roller coaster for the foreseeable future.

This round was particularly tough, emotionally. I usually never get worked up in advance of the blood draw but, before heading off to the clinic Monday morning, I was so nervous that I ate one spoonful of yogurt and decided that, if I continued, I’d be seeing that yogurt again going in the opposite direction.

When I finally saw that the results had been uploaded to my provider’s website tonight, my hand on the mouse was shaking and I truly didn’t want to click on the link to get the news. Not good. (By the way, I learned that my provider only uploads the data once a day, around midnight Eastern Time. That sucks.)

It will be interesting to see what the urologist has to say on 23 August. I’m sure part of it will be, “Let’s retest in December.” Yippee. I’m still quite concerned that I have a detectable PSA (albeit a low value) where I didn’t have before. What’s up with that?

Well, I’m spent. It’s time to call it a night. Thanks to everyone for your kind words, thoughts, and prayers.

Day 2,091 – Off for the Blood Draw

On By DanIn Prostate Cancer, Recurrence8 Comments

So I’m off to get my blood drawn for the next PSA test. (Those 4 months went by faster than I expected.)

Anyone want to get a pool going on what the results will be? (Hey, you got to have some fun with this crap, right??) My money is on somewhere between 0.95 ng/ml and 0.12 ng/ml. It was 0.08 ng/ml in April. Of course, if it doubles like it did from December to April, that would put it at a scary 0.16 ng/ml.

My real desire is for it to be 0.08 or less, but in my mind, I’ve been preparing for it to be in that 0.95–0.12 range. Expect the worst; hope for the best; deal with the facts once they’re known.

I’ll keep you posted as I log into my health account every hour on the hour for the next three days searching for the result. The appointment with the urologist to go over the results and potential next steps is on 23 August.

Month 68 – Waiting for the Next PSA Test

On By DanIn Prostate Cancer, Research, Treatment5 Comments

This will be a short post this month—my brain has been prostate cancer-ed out after the last few months and needs a respite for a few weeks before I buckle in for the roller coaster ride that is the next PSA test.

Speaking of the next PSA test, I’m planning on going in for the blood draw right around 1-3 August 2016. We’ll have to see how my schedule looks that week.

My urologist has authorized me to get the blood draw as of 1 July, so I could go in tomorrow if I really wanted to, but I’m going to do my best to stick to the first week of August to preserve the even spacing of the last three tests—pretty close to exactly four months apart ( 3 December–6 April; 6 April–3 August).

If I lose my willpower and go early, I’ll let you know.

This week also offered up some major news on the prostate cancer front with a shift towards genetic testing to help determine how to best treat prostate cancer. You can read more about it in this Washington Post article, Leading researchers recommend major change in prostate cancer treatment.

Life After Radical Prostatectomy: 66 Months Later

On By DanIn Life After Prostatectomy, Prostate Cancer4 Comments

So it’s been 66 months since my radical prostatectomy. How am I doing?

Honestly? Scared. Afraid of the cancer coming back.

Status

Since my 60-month update in January, we learned that my PSA doubled from what it was in December 2015: 0.04 ng/ml to now 0.08 ng/ml in April 2016. That’s still below the recurrence threshold of 0.2 ng/ml, but obviously moving in the wrong direction. In four weeks, I’ll go for another PSA test and we’ll just have to wait and see what happens with it.

Emotions

Yep. There’s been plenty of emotions in the last six months.

When I saw the PSA at 0.08 in early April, it was as though I was knocked off a horse, fell to the ground, and had the wind completely knocked out of me. Dazed, confused, and not even sure that I wanted to try and get up. It took until early June before my emotional response subsided and I got back into a more normal mindset.

Incontinence

I continued with my weight loss program (90 lbs. / 40.8 kg), and that has certainly helped with my incontinence. Very rarely do I have any leakage at this point.

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.

Summary

Yes, I’m one of the 98% of men diagnosed with prostate cancer to hit the five year survival mark. But with elevated and apparently increasing PSA readings over the last 10 months, what’s in my future is uncertain. (With the exception of two certainties: 1) An unending series of PSA tests ahead and 2) the thought of cancer ever-present in my mind.)

Month 67 – Back to “Normal”

On By DanIn Emotional Aspects, Prostate Cancer, Recurrence1 Comment

What a two months it’s been.

I’m finally back into a more normal routine after getting knocked off my horse with my PSA increasing to 0.08 ng/ml in April. The raw emotions have subsided and have been replaced with a constant, low-grade concern as I wait for my next PSA test.

One ironic thing that won’t let me completely purge the notion of cancer from my mind is the fact that my office is in a hospital and, every morning on the way to my office, I walk down a long corridor that leads directly to the “Radiation/Oncology” suite. And every day, I’m reminded that radiation may be in my future.

The urologist set my next appointment for 23 August, but she put the blood draw order into the system for any time after 1 July. I won’t go that early.

The engineer in me wants to make sure that the PSA tests are evenly spaced for easier analysis (geek, I know). The last two tests were almost exactly 4 months apart (3 December 2015 & 6 April 2016), so I plan on going in for the blood draw on or about 3 August to keep things consistent. It might make calculating PSA doubling times easier.

Just as I was putting the finishing touches on this post, I came across this article: Is standardization of the PSA cut point for biochemical recurrence after surgery a good idea?

Yet another study offering conflicting and confusing guidance. <sigh>

When you introduce cancer into your vocabulary, it’s impossible not to think about the end of life at the same time. Sure, none of us want to jump the gun and rush things, but it’s a natural extension of the word cancer.

My father died peacefully in his sleep 19 years ago next week. My mother, on the other hand, went through a grueling end ten years ago as mesothelioma and emphysema took away her ability to breathe.

When it comes our time to go, most of us would opt to die as my father did—quietly and quickly. Sure, it was hell on those of us who remained behind because no one ever expected it to happen; he was just 69 years old. For him, however, there was no extended suffering or pain.

The California End of Life Option Act went into effect this week, and I’m thankful that I now live in a state where I can have a say in how my life ends if this cancer thing ultimately gets the better of me.

Yes, I’m getting waaaaaay ahead of myself. The only question is whether more courage is required to make that end-of-life decision or to suffer through cancer running its natural course.

Mom wasn’t afraid of dying, but her biggest fear was that of suffering at the end. Her fears came true. I know she would have jumped at the chance to make her own determination on how to avoid that suffering if the option was available to her.

Again, I hope that I don’t have to worry about this for a very, very long time. I’ll settle on worrying about the next PSA test results for now.

Day 2,019 – It’s Official

On By DanIn Prostate Cancer, Recurrence11 Comments

May is the month of the Kentucky Derby and the Preakness Stakes horse races, and you always have to wait a few moments before the unofficial results are declared official.

I just saw the doctor’s interpretation of my bone scan results online, and it’s official: No metastasis.

Now where’s my damned Garland of Roses?!?!?

Photo: Craiglduncan at English Wikipedia

 

Day 2,017 – Bone Scan

On By DanIn Emotional Aspects, Prostate Cancer, Recurrence11 Comments

Today was the big bone scan day and all went according to plan. Get juiced up at 10 a.m. and come back at 1 p.m. for the scan. Near the end, I asked the technician, “Do you see anything that warrants concern?”

“Nope. Clean as a whistle,” he replied. I breathed a giant sigh of relief.

Of course, the technician’s interpretation is not the official interpretation, but I’ll take it for now.

Interestingly, after getting injected with the radioactive glow juice and before the actual scan, I went down to the urology department to make an appointment with the urologist, and there was this 30-something pregnant woman filled with attitude and for whom empathy was a foreign concept. When I asked to make the appointment, she pulled up the calendar and saw that I was already scheduled for late August. “You don’t need an appointment. You’re already on the calendar.”

I tried explaining that waiting 3 months for the results of a test that I was taking today was NOT going to happen, especially considering those results could show possible metastasis (at least in my mind). She had none of my argument initially, but eventually went off in a huff to talk to the doctor about setting up an appointment earlier. It’s set for 2 June. It kind of pissed me off, but I chalked it up to the kid in her womb kicking her in the kidney. (Way to go, kid!)

But now that I know what the technician told me, I’m going to email the urologist and have her confirm the official results. If everything was clean, I’ll cancel the 2 June appointment and just go back into wait until the next PSA test mode.

After leaving Ms. Panties-in-a-Wad, I had three hours to kill, and I opted to walk a mile and a half to the University Towne Center shopping mall. I figured it would help calm me plus help distribute the glow juice through my body.

As I’m walking along the north side of La Jolla Village Drive, the sidewalk just stopped and a narrow dirt path was all that was left to walk on for a city block. I thought that it was odd that posh La Jolla couldn’t afford 600 feet of concrete for us poor pedestrians.

As I was walking that path with waist-high weeds on either side, I had a flashback to my childhood. A friend of mine and I would play in the “prairie,” which was nothing more than a couple of adjacent, overgrown vacant city lots. There were dirt paths and mounds for our bikes, and the same tall weeds. It was a place for a youngster’s imagination to run wild with adventures.

After lunch, I made it back to the hospital for the actual scan. I arrived about 25 minutes before the scheduled time, and the technician was standing right there when I checked in. “Let’s do this,” he said, and off we went. Fine by me.

As I reclined onto the table, I couldn’t help but notice this colorful butterfly painted on the ceiling directly above the scanner. For some crazy reason, the German word for butterfly, Schmetterling, popped into my head and just stayed there.

Once the scan began, I started emerging from the tube, and the only thing that I could see what that silly Schmetterling on the ceiling. I thought, “Hmm, a metamorphosis? Emerging from my tubular steel and plastic cocoon and turning into a butterfly?”

So that was my day. How was yours?

Day 2,015 – An Upbeat Day

On By DanIn Emotional Aspects, Prostate Cancer4 Comments

Finally. An upbeat day!

I don’t know exactly what caused the change in my attitude, but today was perhaps my first really upbeat day in the six weeks since learning my PSA crept up. I was happy all day and even able to bring a little silliness to the office. It felt good.

I hope it continues through the bone scan on Thursday and the wait for its results.