Treatment
Having advanced, metastatic disease gives me the mixed blessing of clarity. But, for those whose prostate cancers were contained, post-treatment doubts can become demons.
We know there are aggressive, life-threatening forms of this disease and there are indolent, slow-growing forms that will not affect a man’s longevity. We also now know there are 24 known sub-types of prostate cancer, but we still can not discern between those that are lethal and those that, for most purposes, are mostly a medical nuisance.
That’s the problem with this disease: there are many who are over-treated, many who do not get the treatment they need soon enough–more than 32,000 each year, and a big number of men in the middle. These poor men living in the gray area either live in fear that their treatment choices may not be aggressive enough or are left wondering if they might have acted too quickly, too drastically following their radical prostatectomies. It’s the reason we read articles like I Want My Prostate Back.
Yesterday, I received an e-mail from my recently-made cyber friend, Mark, in Canada. Having had his prostate removed shortly before mine, Mark was a terrific supporter during the time leading up to my procedure and throughout the recovery time. We are about the same age and both had radical prostatectomies. Here is where our stories diverge: Mark’s cancer was fully contained within the prostatic capsule; mine was metastatic.
With the mixed-blessing of knowing my cancer is an advanced one, I am still going full-steam ahead, driven by adrenaline to get in front of it and stop it in its tracks. But for Mark, who feels and hopes his journey is mostly behind him, the demons of second guessing are knocking on his door.
With his permission, I am sharing part of a highly personal and emotional e-mail from Mark:
“I’m playing basketball tonight as part of a work event, and joined a hockey league that starts tomorrow. A tear in a meniscus has limited my running, but I’m still running 3-4 miles a few times a week. So I should be happy, right? I feel like a whining baby boomer–an ingrate–a rogue who should be struck down in some way for not being sufficiently grateful for being spared (so far) worse news and further treatments–but somehow I’m having quite a hard time.
There is something about the end of the “cancer control” part of the journey that I’ve been blessed (as of now) to have reached that opens up the floodgates. Without worrying (for now) about a life-threatening illness and being resolute in fighting the battle, as I was in the earlier phase after diagnosis and during my recovery, I’m left to contemplate the “new normal.” I haven’t worn a single pad, but every so often I leak a single drop. No big deal-I get that-but still, a change.
In terms of erectile function. I’m now trying the daily low dose Cialis and most of the time I get a good response–I’d say that until the moment of climax it isn’t clear if it will be firm enough for penetration. I did not have to worry about this bodily function beforehand. When I double up the Cialis with an on demand dose of Viagra, and follow the instructions in terms of food and alcohol, it’s an even better response. But… I still feel a loss, as if I’ve been maimed. And since my pathology showed (thankfully) that the cancer hadn’t left the capsule, I’m left to wonder if it would have spread if I’d left it alone and refused treatment. Dammed it you do-dammed if you don’t.
I tried a support group here for PCa–it’s great for intake and having newly diagnosed men tell their stories, but there isn’t really anything to help us verbalize feelings around these changes and the new normal. As someone said last night at such a meeting, “I had ED before I had cancer so it wasn’t a big deal.” But now that we have all these newly-diagnosed men in their 50′s and 40′s, this is a bigger issue. I feel as if my life has ended in a way that I didn’t feel when I had my heart attack and cardiac arrest, an event that, on its face, was much more life threatening. I recognize that it takes time to recover emotionally and psychologically. In fact, I sought out some help then and I’m going back to the psychiatrist who helped me then to see what she might be able to do in terms of helping me adapt now.
But eight years after my heart attack, I ran a marathon. That made be feel accomplished and as if I possibly was better off than I would have been had I not had that health crisis. I can’t seem to come up with something analogous for PCa. It won’t be an appearance in a porn movie (although as one of my friends says, if I grow back my 70′s moustache I could fit a Burt Reynolds/Tom Sellick type part in soft core.) When I type this out, I laugh and I realize the silliness and borderline obscenity of what I’m saying, given my relative good fortune. But when I’m in a meeting with a bunch of other guys, I look around the table and think that all these other guys remain normal–and I’m not, and never will be again. I will have to work on thinking of this differently. Somehow the knowledge that it could be much worse, which I totally get, isn’t enough to get me though it…”
Now I understand why Mark fell off the radar lately. I had been thinking about him often in recent weeks.
I immediately replied to Mark saying that he should never think of himself as not being normal. In fact, he is as normal as the other 2.5 million American men and more than the estimated 16 million men and their families worldwide who are dealing with this disease. But that’s an intellectual response. It doesn’t do much for the emotional needs Mark has now.
Prostate cancer is at a defining moment. Because we now have identified the 24 sub-types of the disease, we will someday, sooner than later, be able to better diagnose and discern between these cancers and give men and the families better assurance about their treatments and decisions. This data will also give us the roadmap for understanding which treatments are best for which patients as we already know that “one size does not fit all” when it comes to fighting these cancers.
Not until this is done, will we eliminate the compounded pain of uncertainty and doubt that PCa can dole out for patients and families. For Mark and for all men, this why we can not let up on our efforts and dismiss the urgency of finding better diagnostics and cures.
PS. I spoke with in person with Mark for the first time today. It was a pleasure to finally make personal contact. His follow up e-mail indicates that for today, at least, things are looking up. “Meanwhile on the bright side, Mark wrote,” I joined an adult beginner level hockey league and my first game is tonight. And Kim is doing her first half marathon this Sunday and I just did a great playlist for her. So things are looking up!
We know there are aggressive, life-threatening forms of this disease and there are indolent, slow-growing forms that will not affect a man’s longevity. We also now know there are 24 known sub-types of prostate cancer, but we still can not discern between those that are lethal and those that, for most purposes, are mostly a medical nuisance.
That’s the problem with this disease: there are many who are over-treated, many who do not get the treatment they need soon enough–more than 32,000 each year, and a big number of men in the middle. These poor men living in the gray area either live in fear that their treatment choices may not be aggressive enough or are left wondering if they might have acted too quickly, too drastically following their radical prostatectomies. It’s the reason we read articles like I Want My Prostate Back.
Yesterday, I received an e-mail from my recently-made cyber friend, Mark, in Canada. Having had his prostate removed shortly before mine, Mark was a terrific supporter during the time leading up to my procedure and throughout the recovery time. We are about the same age and both had radical prostatectomies. Here is where our stories diverge: Mark’s cancer was fully contained within the prostatic capsule; mine was metastatic.
With the mixed-blessing of knowing my cancer is an advanced one, I am still going full-steam ahead, driven by adrenaline to get in front of it and stop it in its tracks. But for Mark, who feels and hopes his journey is mostly behind him, the demons of second guessing are knocking on his door.
With his permission, I am sharing part of a highly personal and emotional e-mail from Mark:
“I’m playing basketball tonight as part of a work event, and joined a hockey league that starts tomorrow. A tear in a meniscus has limited my running, but I’m still running 3-4 miles a few times a week. So I should be happy, right? I feel like a whining baby boomer–an ingrate–a rogue who should be struck down in some way for not being sufficiently grateful for being spared (so far) worse news and further treatments–but somehow I’m having quite a hard time.
There is something about the end of the “cancer control” part of the journey that I’ve been blessed (as of now) to have reached that opens up the floodgates. Without worrying (for now) about a life-threatening illness and being resolute in fighting the battle, as I was in the earlier phase after diagnosis and during my recovery, I’m left to contemplate the “new normal.” I haven’t worn a single pad, but every so often I leak a single drop. No big deal-I get that-but still, a change.
In terms of erectile function. I’m now trying the daily low dose Cialis and most of the time I get a good response–I’d say that until the moment of climax it isn’t clear if it will be firm enough for penetration. I did not have to worry about this bodily function beforehand. When I double up the Cialis with an on demand dose of Viagra, and follow the instructions in terms of food and alcohol, it’s an even better response. But… I still feel a loss, as if I’ve been maimed. And since my pathology showed (thankfully) that the cancer hadn’t left the capsule, I’m left to wonder if it would have spread if I’d left it alone and refused treatment. Dammed it you do-dammed if you don’t.
I tried a support group here for PCa–it’s great for intake and having newly diagnosed men tell their stories, but there isn’t really anything to help us verbalize feelings around these changes and the new normal. As someone said last night at such a meeting, “I had ED before I had cancer so it wasn’t a big deal.” But now that we have all these newly-diagnosed men in their 50′s and 40′s, this is a bigger issue. I feel as if my life has ended in a way that I didn’t feel when I had my heart attack and cardiac arrest, an event that, on its face, was much more life threatening. I recognize that it takes time to recover emotionally and psychologically. In fact, I sought out some help then and I’m going back to the psychiatrist who helped me then to see what she might be able to do in terms of helping me adapt now.
But eight years after my heart attack, I ran a marathon. That made be feel accomplished and as if I possibly was better off than I would have been had I not had that health crisis. I can’t seem to come up with something analogous for PCa. It won’t be an appearance in a porn movie (although as one of my friends says, if I grow back my 70′s moustache I could fit a Burt Reynolds/Tom Sellick type part in soft core.) When I type this out, I laugh and I realize the silliness and borderline obscenity of what I’m saying, given my relative good fortune. But when I’m in a meeting with a bunch of other guys, I look around the table and think that all these other guys remain normal–and I’m not, and never will be again. I will have to work on thinking of this differently. Somehow the knowledge that it could be much worse, which I totally get, isn’t enough to get me though it…”
Now I understand why Mark fell off the radar lately. I had been thinking about him often in recent weeks.
I immediately replied to Mark saying that he should never think of himself as not being normal. In fact, he is as normal as the other 2.5 million American men and more than the estimated 16 million men and their families worldwide who are dealing with this disease. But that’s an intellectual response. It doesn’t do much for the emotional needs Mark has now.
Prostate cancer is at a defining moment. Because we now have identified the 24 sub-types of the disease, we will someday, sooner than later, be able to better diagnose and discern between these cancers and give men and the families better assurance about their treatments and decisions. This data will also give us the roadmap for understanding which treatments are best for which patients as we already know that “one size does not fit all” when it comes to fighting these cancers.
Not until this is done, will we eliminate the compounded pain of uncertainty and doubt that PCa can dole out for patients and families. For Mark and for all men, this why we can not let up on our efforts and dismiss the urgency of finding better diagnostics and cures.
PS. I spoke with in person with Mark for the first time today. It was a pleasure to finally make personal contact. His follow up e-mail indicates that for today, at least, things are looking up. “Meanwhile on the bright side, Mark wrote,” I joined an adult beginner level hockey league and my first game is tonight. And Kim is doing her first half marathon this Sunday and I just did a great playlist for her. So things are looking up!