Tag: Prostate Cancer

Day 2,596 – Doctor Visit

On By DanIn Prostate Cancer, Recurrence8 Comments

I met with my doctor this afternoon to review my increasing PSA results, and it went just about as expected. There’s increasing concern, but things are progressing slowly enough that we can continue on the four month test cycle for now. That means I’ll be doing this all over again in April.

There were a few reality check moments in the conversation, though. I’ll get to those in a moment.

One thing I need to learn to do is shut up—at least for the first part of the meeting with the doctor. I’m not very good at letting the doctor talk and offer up his thoughts and recommendations and then ask the questions that I have. I just launch into a barrage of questions based on the research that I’ve done and assault the poor guy. On a positive note, he really didn’t dispute anything that I told him nor did he tell me that I was completely out to lunch on certain issues.

We reviewed the success rate for SRT, with various studies showing it to be 35%-55% effective at being progression-free at 5 or 6 years. (Here’s one.) We also discussed the potential side effects of SRT, and he did seem to believe that the risks were lower than I thought they may be.

The conundrum of starting SRT early versus knowing where to radiate based on imaging came up as well. My sense was that he’d prefer to start SRT while the PSA is less that 0.2 ng/ml, and certainly before it reaches 0.5 ng/ml, assuming that the cancer remained in the prostate bed. Doing so, he said, offers the best chance for success. He suggested that, if we wait until it would be detectable on even the most sensitive imaging (which can’t detect anything reliably until the PSA hits the 1.5-2.0 range), that radiation would do little if any good at that point, as the cancer will likely have spread. Androgen deprivation therapy (ADT) would be the treatment option of choice at that point, and ADT is not curative. It only prolongs life (with substantial side effects impacting quality of life).

The reality check moment for me came with his comment about waiting too long to the point where SRT wouldn’t be effective, and that ADT would be my primary treatment option. That really was an, “Oh, shit,” moment for me. It’s very easy to sit here and speculate how I will act in hypotheticals, but at some point in the future, I am going to have to make real world decisions that affect my longevity and quality of life.

Based on my slow PSA doubling time (around 16 months), if my PSA progresses at its current rate, I’ll have 12 to 28 months to think about this and make my decision, based on whether I want to act if my PSA is around 0.15 or let it go all the way to 0.20. (See my “decision zone” in yellow below—yes, I had to geek out in my spreadsheet once again.) If I want to wait until it’s all the way to 0.5, I’ll have even more time.

Of course, one option is to do nothing. A study in 1999 showed that it took, on average, 8 years after PSA levels began to rise to reach metastasis, and another 5 years after metastasis to death.

The bottom line is that this is becoming increasingly real and that there will be some tough decisions in the next year or two. Of course, those decisions are mine and mine alone, and will be based on a variety of factors, not least of which will be my risk tolerance and any treatment’s impact to quality of life.

On that happy note, I wish you a Merry Christmas and a happy 2018! 🙂

Thanks, too, to those who took time to answer my questions in my salvage radiation therapy survey a few weeks ago. Your insights were quite helpful to me.

PCF Article: New Biomarker Predicts Metastatic Prostate Cancers

On By DanIn Prostate Cancer, ResearchLeave a comment

Here’s an interesting article from the Prostate Cancer Foundation about a potentially exciting development in the ability to determine which prostate cancer tumors are more likely to metastasize.

New Biomarker Predicts Metastatic Prostate Cancers

Month 82 – Reviewing PSA Results with Doctor

On By DanIn Prostate Cancer, Recurrence16 Comments

At this afternoon’s visit to the doctor to review my August PSA results, he asked, “How are you doing?” I replied, “I’m hoping you’re going to tell me.” “With a PSA of 0.09, you’re doing fine.”

I have to admit that I wasn’t quite psychologically prepared for that answer. Nor was I really prepared for the conversation that followed. But before getting into that, the bottom line was just as I expected: Continue to monitor PSA on a four-month cycle, which has me back in the lab in early December.

This was a new doctor that I hadn’t seen before and he was definitely more seasoned than the last one that I had. Still, all those years of experience could have taught him some better communication skills. He talked in broad generalities and in circles—even in response to my direct questions—and that was more than frustrating.

On the topic of recurrence, he didn’t think that I should be so quick to assume that an increasing PSA is indicative of recurrent cancer. He offered up the possibility that it could have been some benign prostate tissue left behind after the surgery and has grown enough where it’s detectable on the PSA test. Or, it could be cancer.

On the topic of PSA tests in general, he reminded me that the really old threshold for biochemical recurrence was 0.4 ng/ml before it was lowered to 0.2 ng/ml. It seemed that he valued the ultra-sensitive PSA test only as it related to the post-surgery pathology. If the pathology was bad, he seemed to put more stock in the ultra-sensitive PSA; but if the pathology was good, he seemed less inclined to put stock in it.

In other words, if you had a 4+3 Gleason score, positive margins, seminal vesicle involvement, or lymph node involvement—or some combination thereof—he would be more likely to consider acting on a 0.09 ng/ml PSA. But it my case with a 3+4 Gleason, negative margins, and no seminal vesicle or lymph involvement, my sense was that his response to my 0.09 PSA was a pretty nonplussed, “Meh.” Or, if my PSA gets to “around 0.13 ng/ml,” we might start exploring treatment options.

On the topic of doing additional testing such as scans to see if there is cancer anywhere, he said that nothing would show up on a scan or MRI with a PSA of 0.09. I want to dig into that some more.

On the topic of salvage treatments, he thought that, given my pathology, the first step would be “a little radiation.” (I’m not sure if sprawling out on the beach for 7 weeks qualifies for “a little radiation,” but it may be worth asking.) He wouldn’t do ADT (hormone therapy) in conjunction with the radiation, again, given my pathology.

Lastly, at one point during the conversation, he quite confidently made the bold prediction that I wouldn’t die from prostate cancer. You think I’d be jumping for joy. I’m not. Perhaps its my experience as a seasoned patient that’s telling me to withhold judgment on that one for the time being.

All in all, this is good news. My lack of enthusiastically embracing it, however, comes from the fact that, rather than eliminating variables to consider, I feel that this meeting introduced a few more, and that just muddied the waters. Emotionally, at this point, I just want this stupid disease to pick a path and stay on it. I may also check with the VA to see if there’s any way I can pick one doctor that I can build a relationship with rather than this new-doctor-a-quarter routine.

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.

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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.)