Here is a very interesting and perhaps controversial article about shifting how we approach the treatment of prostate cancer:
I’m not trying to get ahead of myself by posting this, but this article is something everyone should think about.
My mother had a really great outlook on death and dying, and was very open about her feelings (Item #3). I truly believe that her openness did, in fact, make it easier to come to terms with her death. She even created a little to-do list that started, “When I croak…” Seriously.
The hospice team was astonished by the level of openness in our conversations. There was no denial. We talked openly of end-of-life decisions, and my mom even had a hand in writing her own eulogy.
As the author said in Item #1, none of us are getting out of here alive, so planning for the end, especially if you have a disease like cancer, is important and shouldn’t be neglected.
According to an article from Kaiser Health News on the CNN web site today, “People with advanced cancer don’t know enough about their disease to make informed decisions about treatment or how they want to spend their remaining time.” This is notany sort of “new discovery”. However, it is something we commonly choose to avoid thinking about or dealing with.
We aren’t going to repeat all the information in this article. Rather, we encourage our readers to have a close look at this article for themselves. It contains information and facts that we all need to understand and be aware of.
Only a small percentage of all the men who get prostate cancer actually die from this disease, but all men who get diagnosed with prostate cancer live, for at least a short period of time, with the fear that it may kill them, and if they “don’t know…
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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.
I came across this interesting abstract of a study in Germany that suggests defining biochemical recurrence after radical prostatectomy at the 0.1 ng/ml level instead of the widely accepted 0.2 ng/ml.
The vast majority of patients with PSA ≥0.1 ng/ml after RP will progress to PSA ≥0.2 ng/ml. Additionally, early administration of SRT at post-RP PSA level <0.2 ng/ml might improve freedom from progression. Consequently, we suggest a PSA threshold of 0.1 ng/ml to define biochemical recurrence after RP.
You can read the full abstract here.
Of course, with my latest PSA at 0.08 ng/ml, that’s far closer to 0.1 than 0.2. I know it’s just one study, so I’m not going to get worked up over it for now. Something else to talk with the doctor about in September (gotta keep ’em on their toes!).
Another monthly post a few days ahead of schedule…
One thing about getting care through the Veterans Administration (VA)—I may see the same doctor only twice before a new one takes over my case. I think they’re on a six-month rotation and I’m on an four-month test cycle. Sometimes, I find the constant change in physicians annoying; other times, I like the idea of a second, third, or fourth opinion for differing perspectives.
This afternoon, I met with Doogie Howser, M.D. to review my PSA results from April. (Okay. He wasn’t actually Doogie. He’s a resident from University of California San Diego and didn’t appear to be much older than Doogie.) He was quite sharp and familiar with some of the more recent research and studies that have been done.
The meeting went pretty much exactly as I expected it to go:
- No real explanation for the yo-yo PSA readings.
- No need to panic yet; we’re not approaching the 0.2 ng/ml recurrence threshold.
- Slight concern about the last two consecutive readings increasing.
- Keep retesting on a four-month cycle.
And that was that.
I’ll go for my next blood draw in August with the follow-up appointment with Doogie (or his replacement) in September.
You may have noticed that I now have links to my Facebook and Google+ pages in the sidebar and footer in an ongoing effort to continue to raise awareness by sharing my story with a broader audience.
An excellent article about PSA and being able to determine the aggressiveness of prostate cancer.
I’m surprised by how much getting my PSA results 30 hours ago affected me yesterday and today. It’s been a real struggle.
Anger. That’s the word of the last 24 hours. I just want to scream, “Would you make up your fucking mind already?!?! Either come back and let’s battle this cancer shit head-on, or get the fuck out of my life once and for all!!” (Told you I’m pissed.) It’s the uncertainty that comes with each test result that’s getting to me. And the fact that this will happen every four months for the foreseeable future is growing really tiresome.
Logic tells the data-driven part of me that I’m okay—that I’m still considered to be cancer-free for now. It’s probably because I am so data-driven that I’m getting so angered and frustrated. Cancer doesn’t always follow a logical path; it doesn’t always fit neatly into cells in a spreadsheet. I need be better at accepting that fact. (You would have thought that I would have learned this after 6+ years of dealing with this.)
Sorry if I offended with my language, but when I started this blog, it was intended to be a raw sharing of thoughts and emotions, and it’s something that I needed to do today, otherwise my head would explode. Really.
And, no, I’m not wishing for the cancer to come back. I’m grateful that I’m still here and able to whine about it. Truly. I guess frayed nerves, anger, and frustration are small prices to pay for longevity.
The results are in. My latest PSA is 0.08 ng/ml, up from 0.06 ng/ml in December. That’s exactly where the trendline on my geeky spreadsheet graph told me it would be, so I’m not entirely surprised. Not pleased, but not surprised.
What does all of this mean? Who knows. On the good news side, I’m still well below the historically accepted 0.2 ng/ml cancer recurrence threshold. But I’m at the point now where I can no longer convince myself that these elevated PSA readings were just a byproduct of the change in PSA test methodology in March 2015. I’m sensing that something real is afoot here, and it doesn’t bode well.
My appointment with the doctor isn’t until 9 May 2017, so I’ll have plenty of time to think about this in advance and have a battery of questions ready for him. We’ll see if we’ll stick to the four-month test cycle or if he wants to increase the frequency. If we stick to the four-month cycle, my trendline would predict the next PSA to be between 0.09 and 0.1 ng/ml.
The last time we met, the doctor wasn’t willing to act until we got closer to the 0.2 ng/ml threshold. I’ll see if this result changes his opinion or if he’s been more accepting of some of the more recent research on prostate cancer recurrence. (You may recall from some of my earlier posts that several studies using the new ultra-sensitive PSA test showed that crossing the 0.03 ng/ml threshold was predictive of cancer recurrence and that intervention with salvage therapies sooner rather than later was more effective.)
I’m not going to pretend that this isn’t troublesome for me, because it is. But I also know that it’s still too early to go into full panic mode. If we stick to the four-month test schedule and August’s results come in at 0.07 or above, that will be one more data point to reinforce the notion that the cancer is, in fact, on its way back. At least in my mind. If it comes in less than that, I’ll be both happy and frustrated because of the continued uncertainty as to what’s really happening.
The journey—with its sometimes insufferable waiting—continues.
It’s that time again. Another four months have elapsed and I just had my blood drawn for the next lap on the PSA roller coaster.
Actually, the anxiety leading into this test has been pretty much non-existent. Not that there isn’t any concern; it’s just that I haven’t let it control me. Why get all worked up about something you don’t know the answer to, right?
I should have my results by my next monthly update on 11 April. Stay tuned.
I came across this article on one of my social media feeds and I thought it worthy of sharing. It’s a sorry indictment of where we stand in healthcare and pharmaceutical costs in the United States and the impact those high costs have on patients who are already struggling emotionally as they battle their cancer. (I’m afraid, of course, this will only get worse under Trumpcare if it’s enacted).