Tag: Cancer Recurrence

Life After Radical Prostatectomy: 72 Months Later

On By DanIn Life After Prostatectomy, Prostate Cancer6 Comments

So it’s been 72 months since my radical prostatectomy. How am I doing?

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Graphic Biology Ahead

Status

Since my 66-month update in July, we learned that my PSA continued to play yo-yo by dropping from 0.08 ng/ml in April to 0.05 in August and 0.06 in November. So I’m still hovering well below the 0.2 ng/ml widely accepted recurrence threshold. That’s good.

Emotions

The emotional roller coaster that I was on at the beginning of my elevated PSA trip has really subsided into the kiddie version of the ride. Sure, there are things to be concerned about, but the initial panic and fear over the possibility of recurrence are gone.

Incontinence

My weight loss of 100 lbs. / 45 kg at its best point certainly helped reducing my incontinence. (I’ve sadly put about 8 lbs. / 3.6 kg back on thanks to the stress of our stupid election and the holiday feasts at Thanksgiving and Christmas).

What I find is that when I’m physically active or when my body is tired is when I’m more inclined to have small episodes of incontinence. At the beginning of December, we had an event at work where I was on my feet for 12 hours and doing a lot of lifting at the end of the day cleaning up after the event. By the end of the night, my underwear were damp from seepage that I never really felt as it was happening. (I generally don’t wear pads because 99% of the time, I’m dry.)

Knowing that I already have some incontinence when active is a concern if we ever get to the point of salvage radiation therapy, as SRT tends to worsen incontinence.

Sexual Function

Really not much has changed in the sexual function department in the last year or so. With only one nerve bundle, I’m pretty pleased with the fact that I can achieve a decent erection 80-90% of the time, but it does require some effort. (And I’m not taking any ED drugs like Cialis or Viagra.)

Earlier I talked about penile shrinkage after the surgery, and I’m happy to say that things are back to where they were before the surgery. I’m not sure if that’s the norm, but I’ll take it (even though it took years to get back here).

Summary

As I was wheeled into the operating room six years ago today, I had to have a little fun with the surgical team. I stopped them and said, “I just need to know one thing before you start.” “What’s that?” my surgeon replied. “Are all of you over your New Year’s hangovers?” When they laughed and said, “Yes,” I said, “Good. Let’s do this.”

Here I am, six years out from the surgery, still kicking and getting along fine for the most part. Sure, this elevated PSA is a concern, but I’m not going to live my life from PSA test to PSA test. It’s just too draining to do that. As I said at the beginning of this journey, I’ll just do my best to take things one test result at a time and go from there.

I’ll continue to stay plugged into the prostate cancer community to keep abreast of the latest research so that, if and when my elevated PSA ever becomes more than a nuisance, I’m educated and ready to make decisions that are right for me and my desire for quality of life.

 

Immediate radiation when PSA levels spike after prostate cancer surgery helps reduce risk of recurrence

On By DanIn Prostate Cancer, Research3 Comments

It’s funny that just 24 hours after having a discussion with my doctor about this very topic, this article appears on one of my social media news feeds.

My medical team seems reluctant to embrace some of the newer studies like this, sticking to the 0.2 ng/ml definition of biochemical recurrence that’s been the standard for years and years. That makes me wonder how long it takes before the medical community accepts the newer data and studies, and shifts treatment regimens to the new guidance.

Don’t get me wrong. I’m not ready to hop on a table and get radiated just because of this paper (or the two others earlier in the year along the same lines), but it is something that I’ll be keeping an eye on going forward.

More than anything at this point, I’m just sharing an observation of how the medical research community and the medical community at large can sometimes be at odds with each other, knowing how conflicting and confusing it can be from a patient’s perspective. It just reinforces my belief that you have to do your own research, be your own advocate, and make decisions that YOU are comfortable with based on what you’ve learned.

—Dan

For men who have had prostate cancer surgery, radiation therapy at the first sign of a rising PSA level can reduce the chances of the cancer recurring.

Source: Immediate radiation when PSA levels spike after prostate cancer surgery helps reduce risk of recurrence

Day 2,241–Doctor’s Visit

On By DanIn Prostate Cancer7 Comments

My visit to the doctor this afternoon to review my latest PSA results (0.06 ng/ml) went just as I expected it would:

  1. There’s no definitive explanation for the elevated PSA yet.
  2. The elevated PSA seems to be stable, so no need to panic about recurrence.
  3. Retesting in four-month cycles will continue for the foreseeable future.

I’m okay with all of that. I seem to have turned the corner where I’ll always be concerned about my PSA, but I’m not going to let it control my life. It’s too consuming.

He reminded me of how slowly PSA can change and that we shouldn’t even begin to think about any intervention unless the PSA starts creeping up into the 0.15–0.18 range. That’s fine by me. If we get to that point, I’m going to be much more deliberate in selecting what, if any, salvage therapy would be appropriate given where I’m at in life and the potentially debilitating side effects that impact quality of life.

So I’ll call that visit a positive end to 2016. Let’s hope for a happy, healthy 2017!

Day 2,212 – PSA Results

On By DanIn Prostate Cancer11 Comments

My latest PSA test on 28 November came back at 0.06 ng/ml, up slightly from the 0.05 ng/ml back on 1 August.

That could just be the difference between a new moon and a full moon or simple instrument error. It’s a concern, but certainly nothing to panic over at the moment.

I’m glad to see that I’m consistently hovering in that 0.04–0.08 range, although, if I were to lay a trendline over the data, it would certainly be moving in an upward direction towards that recurrence threshold.

The one nagging thing that hangs over my head is those recent studies that showed PSA at 0.03 ng/ml can be predictive of recurrence. I’ll press the doctor on that again at my appointment on 29 December.

Lastly, I’ve accepted the fact that this will be my new reality: Testing, waiting, and wondering every four months. Not the path I hoped to be on six years out, but it is what it is.

Thanks to everyone for your thoughts, support, and prayers.

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Six Years

On By DanIn Prostate Cancer2 Comments

Six years ago today, I was told I had prostate cancer. Guess what? It’s six years later and I’m still alive and kickin’. Woo-hoo!

PSA Trend 20160803Of course, the cancer storm clouds may be brewing as I head into my next PSA test in a few weeks. Who knows what crazy result it will yield. Remember, in the last 15 months, we’ve gone from undetectable to 0.05 to 0.04 to 0.08 to 0.05. Any bets on the results this time around??

My schedule in early December is quite hectic, so I’ll likely go for the blood draw during the week of 28 November. As usual, I’ll wait three days to get the results online, and then my appointment with the urologist is on 29 December.

Stay tuned. In the meantime, here’s wishing everyone a Happy Thanksgiving with family and friends!

Day 2,113 – A Visit with the Urologist

On By DanIn Prostate Cancer, Recurrence4 Comments

Well that went just as I expected it would:

  • No explanation as to why my PSA is where it’s at and why it’s doing what it’s doing (yo-yo readings).
  • No willingness to state with any certainty whether I’ll experience biochemical recurrence (BCR) at some point in the future.
  • No meaningful discussion of next steps until we know what we’re dealing with.
  • Retest PSA in December.

So we go back into the wait, retest, and wait some more mode for the foreseeable future. I guess that’s okay, but I’m a pretty binary guy, so it really would be nice to know that, yes, the cancer is coming back or, no, it’s not. At least then you can work to come to terms with the answer even if it’s the one no one wants to hear.

We did talk some about using other imaging mechanisms to see if they can pick up on any micro-metastases if the December results are worse than where we’re at now. We also talked a little about salvage radiation therapy, hormone therapy, and the timing of each but, again, nothing that I didn’t already know from my own research.

We also discussed the recent papers that indicated BCR at 0.03 ng/ml and, while he was interested, he pretty much stuck to the standard 0.2 ng/ml definition of BCR and would be using it in the decision-making process.

I did mention that I’m in no rush to start anything (i.e., salvage treatments) until we know exactly what we’re dealing with, and that quality of life is high on my priority list if and when we get to that point.

So that’s that. No real surprises. No real revelations. Just keep on keepin’ on.

On that happy note, remember that September is Prostate Cancer Awareness month. (Hard to believe it’s only a week away! My time flies when you’re having fun…)

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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.

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.