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.
4 thoughts on “Month 79 – Perspectives Gained through a Prostate Cancer Support Group”
I read Patrick Walsh’s book Surviving Prostate Cancer. I’m on hormones. Maybe you know this but there are two kinds of prostate cancer cells. Hormone-sensitive and Hormone-insensitive. So, it appears my PSA is going down from 67 to 7 when last checked, but the reality is that the Hormone-insensitive cells are having a party and continue to grow. And of course, over time even the hormone-sensitive cells will adapt. Ya, I hate these hormones with the tiredness, mood swings, foggy mind. I’ve only been on them for a month or two, but I’m thinking of quitting hormone. What’s the point. I’d rather live like a Klingon, “Today is a good day to die.” than slowly slip into foggy tiredness with female breasts!! Screw that.
Thanks for the comment, Eric. Yes, Walsh’s book is the first resource I typically go to when it comes to getting smarter about this cancer crap.
I have the second edition of Walsh, and when I was reading about ADT, there was a second learning point that centered around the timing of starting ADT. Walsh cites several studies and concludes, “There has been no convincing scientific evidence to prove that early hormonal therapy prolongs life.” He goes on, “Whether a man is treated with hormonal therapy immediately as soon as the diagnosis of advanced disease is made, or his doctor waits until the man has signs of progression and then begins treatment, we believe—and study after study proves—that survival is exactly the same. There is no compelling evidence that any kind of hormonal therapy works better earlier than later….” [p. 479].
That begs the question, if there’s no difference in the outcome, why go through months or years of ADT and its associated multiple side effects until you really have to?
For me, I know that I’m way ahead of the game—my PSA hasn’t even crossed the 0.2 ng/ml recurrence threshold yet. But I’m a researcher and a planner, and I like to be educated when I go in to see my medical team. It makes the conversations much more productive.
It’s a very tough and very personal decision for each of us, and I wish you all the best as you make yours.
LikeLiked by 1 person
Dan, you hit the nail right on the head. I delayed hormone therapy for as long as possible to avoid the side effects. Now it appears to be failing I will again delay the second round as I do not want to diminish my quality of life for no perceived benefit. Of course, just because it is right for me does not mean it is right for others. Good work spreading the info, and good luck. Cheers, Phil
Thanks, Phil. I can understand and respect your decisions completely. As you said, each of us has to find our own path on this journey and know that the only ones we have to satisfy are ourselves.