Tag: Prostate Cancer

September is Prostate Cancer Awareness Month

On By DanIn Prostate Cancer4 Comments

September is National Prostate Cancer Awareness Month, reminding us that one in seven men will be affected by prostate cancer in their lifetimes. It’s also a good reminder to take a few moments to learn more about the disease, the ongoing debate concerning screening for prostate cancer, its symptoms (or lack thereof), and the myriad of treatment options should you happen to be that one in seven.

There are plenty of resources out there from which you can learn. Schedule an appointment with your physician and have an open, honest discussion about your risks and whether or not you should be screened. In the end, it’s important to remember: It’s your body, your choice.

Please share this important reminder with the men in your life.

Article: Radical revision of treatment for prostate cancer could extend life

On By DanIn Prostate Cancer, Research1 Comment

Here is a very interesting and perhaps controversial article about shifting how we approach the treatment of prostate cancer:

Radical revision of treatment for prostate cancer could extend life

Month 79 – Perspectives Gained through a Prostate Cancer Support Group

On By DanIn Prostate Cancer4 Comments

About a month ago, I joined the Prostate Cancer Support Group on Facebook just to check it out and see what sorts of things were being discussed there. It’s been interesting and educational.

Many of the posts are from those first diagnosed, struggling with the news, seeking some guidance on how to process it and where to begin. Others seek answers to treatment questions. Some just vent. A few offer up a few funny jokes or stories to lighten the mood of the group (and make us test our stress incontinence with hearty chuckles). And then there are, sadly, the one or two at the end of their journey who tell of their decision to stop treatment and just let nature run its course.

More than anything, being in the group reminds you in a very raw, unfiltered way of the physical and emotional toll that this insidious disease wreaks on the patient, his partner, and his family.

Of course, each case is unique to the individual patient, but it’s been interesting to note the differences in information being told by the physicians to the patients. For example—and because it’s of personal interest to me—you can see debates on what the definition of an “undetectable” post-surgery PSA reading is. Because the patients are being given these different numbers by their physicians, it just reinforces my frustration with the lack of consensus in the urology community.

Everyone in the group is very supportive of each other, and that’s good. There’s definitely value in sharing thoughts and experiences and just being able to scream out loud to others who can relate. However, some of the well-intentioned support can go to too far, with some of the comments bordering on misinformation or even medical advice. For the newly diagnosed and not yet educated (about prostate cancer), that can be a concern as they try to wrap their heads around all of this information before making treatment decisions.

I joined the group to see if there were any discussions about post-surgery salvage therapies should my PSA continue to rise, but it seems most of the discussions are with the newly diagnosed or those who are already in the advanced stages of the disease. For now, I’ll keep monitoring the conversations, gleaning what I can (and taking much of it with a grain of salt). If my August PSA shows another increase, I’ll start overtly asking questions and see what sort of responses I get.

Reading the posts of those in the advanced stages of prostate cancer has given me a new respect for what those patients are going through. It’s also made me question how I would want to approach the advancing cancer should it happen to me.

When I read the narratives about the side effects of hormone therapy I, frankly, get scared. So many of the men in the forum (or their wives) speak of how the therapy has had a significant impact on their ability to function. The fatigue, the moodiness, the hot flashes, and more. As I recall, one person spoke of how her husband was sleeping upwards of 20 hours per day.

It’s under those circumstances that I begin to ask myself—and I ask this without judgment of anyone else’s decision—Is it really worth going through all this if you’re going to sleep 18-20 hours a day? Is that really living? Why prolong life if you’re unable to function in your daily tasks? Is the “cure” worse than the actual disease?

I guess that’s just the pragmatic engineer of German ancestry coming out in me. If and when I get to that stage, I may change my tune. “Hell yes, it’s worth it!” But then I stumbled across this poignant article in the New York Times, At His Own Wake, Celebrating Life and the Gift of Death, that talks about medical assistance in dying, and it reinforced the desire that most of us have to be in control of our own fate for as long as we possibly can.

I hope that I won’t have to make any of these decisions for a very, very long time. In the mean time, I’ll continue to offer support where I can in the group, and learn more about salvage therapy from the experience of others.

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!

Month 71 – More Studies on Early Salvage Radiation Therapy

On By DanIn Prostate Cancer5 Comments

With the change in my PSA over the last year, you can bet that I’ve been seeking every bit of information as to what it means and what to do about it. One of my go-to resources for the latest information in the field has been The “New” Prostate Cancer Info Link.

On 21 September, they published the following blog post that really piqued my interest:

Very early salvage radiation has up to fourfold better outcomes and saves lives

It’s certainly a topic of discussion for my next urologist visit in December. By the study’s definition, I’m still in the “very early” group—the group with the best survival if salvage radiation therapy (SRT) is started while I’m still in that group.

If we have to go down that path, my biggest concern with starting SRT is knowing that we’re actually radiating where the cancer is located. That concern is amplified if imaging can’t show where the cancer’s actually at, and we just radiate the prostatic bed because that’s what makes the most sense. Why risk some long-term, potentially nasty side effects on something so uncertain? (Yes, I know nothing is certain dealing with cancer.)

Of course, this is just one study and making a decision on it alone would probably be unwise.

We’ll just have to wait for the December PSA readings to come back and go from there.

On a happier note, I took a little drive through the country last week to tackle a few things on my travel bucket list: October Odyssey: The Mountain West. Check it out if you want to see what it was all about.

img_1194
Cimarron Canyon State Park, New Mexico

Month 70 – Sharing Awareness

On By DanIn Prostate Cancer4 Comments

We’re about half-way through Prostate Cancer Awareness Month and it seems as there’s been some progress in getting the word out. More organizations seem to be helping to increase awareness than in the past, and that’s a good thing.

I’ll have to admit that my own approach to PCAM has changed slightly. I’m more inclined to tell people to educate themselves before making the decision to test.

Those of us who have been dealing with prostate cancer understand how complex, convoluted, conflicting, and confusing it can be. If you’ve never entertained the notion that you can get prostate cancer, you probably haven’t paid much attention to the raging debates in the field. DRE or no DRE? PSA test or no PSA test? Over-treatment versus under-treatment? Active surveillance versus treatment? That’s why it’s so important to educate yourself before being tested.

One of my former managers always said, “If you can’t stand the answer, don’t ask the question.” Your decision to get screened for prostate cancer is exactly that: your decision. You have to be comfortable with either path you take, and the best way to make that decision is by being educated. Please take a few moments this month—Prostate Cancer Awareness Month—to learn more about prostate cancer and how it can affect you. You can start with my Resources page.

I finally made my family and friends aware of my detectable PSA shortly after my visit with my urologist in August. There was concern from those who responded but, on the whole, the reaction was good. I knew that sitting on this for a year would cause some deserved criticism, too, but they seemed to understand my rationale.

It’s a relief to have it out in the open now. As one of my readers wrote on his own blog, “A burden shared is a burden halved.” Yep. It is. (Sorry, I can’t find the quote again to give credit where credit is due!)

On the whole, I’ve been able to push aside the emotions and thoughts that the cancer may be returning, and it feels good to be reengaged in the world. The next PSA test is in December.

Now if I can just get used to the fact that it’s dark when my alarm goes off in the morning… It wasn’t that long ago that the sun shining through my east-facing bedroom window woke me up and not the alarm. Autumn and shorter days are here! (In San Diego, shorter days are about the only indicator of it being autumn.)

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…)

prostate-cancer-awareness-hero-806x307,0

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.