I don't know why the doctors continue to paint such rosy pictures for normalcy after prostate cancer. Each of the docs I went to said "The other therapies leave significant side effects, but not mine."
Then they would offer reassuring words, give me a handout with statistics to back up what they had said, and out the door I went.
Here is the sobering truth.
“I had surgery by a doctor who said 98 percent of my patients are perfectly fine,” said Mr. Nelson, now 51. “Of course, I wasn’t perfectly fine.”
The Side Effects? Well, There Is One...
Realistic expectations MUST be communicated. Otherwise you set men up for a double-whammy.
But I have a feeling that it once again comes down to money. Physicians don't follow the #1 rule of a great business - under promise and over deliver.
But then again, we don't have a lot of choice, do we?
Showing posts with label side effects. Show all posts
Showing posts with label side effects. Show all posts
Saturday, September 24, 2011
Wednesday, August 31, 2011
The Doc Visit And Pesticides
So my Doc visit two days ago was a non-event.
Quick physical check, a few questions about side-effects, and I was given two thumbs up and a 'right on schedule'.
That's good news. No, that's great news!
Doc was also ecstatic that the placement of the seeds were "spot on", and he estimated target coverage at 98%. That's also great news.
But it still astounds me that something that looms so large in my life is, in reality, just a blip in the machinery of modern medicine. Day procedures and follow-up visits. Honestly, when I had my gall bladder out back in the early '90s, (and yes, this was RIGHT before the laparoscopic procedure was developed), it was a much larger event than this prostate cancer.
It's not that I want to be in the hospital, or undergo a series of procedures or radiation - I am very, very fortunate on that front, but I don't know how to explain it - it all seems sort of anti-climactic.
Now we follow with blood tests every 3 months and watch the PSA levels.
The radiation will peak in another month and a half, then start a slow decline as the radiation from the seeds begin to diminish. So a few more weeks of intense side-effects and then a gradual decline.
That will be nice.
Of course I also understand that I'm not out of the woods just yet. That story will be told over the next 18 to 24 months as we watch the PSA. I'm not really concerned - I'm just going to assume that the radiation did the trick.
That's kind of the way I approach most things anymore: I can either dream and fantasize failure or victory. Cure or curse. Whatever I spend my time contemplating isn't going to change the outcome one iota, so why not think positively? Otherwise I'm thinking of all the horrible things that could happen, and doing that - and you'll have to trust me on this - robs you of today. That's no way to live.
So, now you are all caught up.
As I've said before there are a slew of reports that come out everyday concerning prostate cancer. My inbox is stuffed every morning with articles and new drug therapies and all the latest advances. Some are encouraging, some are not.
One that caught my attention is this one:
Pesticide - Prostate Cancer Link
Well pugnuts. Yes, I said pugnuts.
I grew up in a small town in eastern Washington until I was 9 years old. My family then moved to 'the coast'. Which, for anyone living in eastern WA meant everything west of the Cascades. Like most of the people I knew, our house was surrounded by apple orchards. And I mean surrounded. Huge orchards that stretched forever. The apple trees bordered my backyard - and continued across the dirt road in front of my house for another good stretch. Other huge tracts of fruit trees lined the two-lane highway that bisected our small town. I could almost chuck an apple from my front yard across the blacktop into the other orchard.
I guess looking back it was one huge orchard with a few houses clustered here and there.
I also remember the tractors pulling the big tanks with the huge fans on the back that drove between the trees flooding the orchard with pesticides. Sometimes it was my Dad driving. He would come home for lunch - his clothes literally dripping with the stuff - and the house would fill with the peppery/chemical/acrid odor of the spray.
But my family followed safety precautions. I wasn't allowed to go outside to play until the fog had settled, and I had to stay at least two orchard-rows away from where they were spraying. Then I had to be careful not to walk under the trees while they were wet and dripping but we were kids and didn't listen as we should.
I won't even get into how they kept the frost off the trees back then. Let me say that it involved hundreds of 'smudge-pots' lining the rows, filled with oil - coal oil I think - and set afire to keep the frost away. I always knew when the mornings were cold because the thick smokey fog permeated everything, seeping into the house like an unwelcome guest.
Now I realize just how horrible all of this sounds. But it really was a different time. My family had been working in and around orchards for years. It was just part of the job and not a big deal.
Now you tell me times haven't changed.
And for the better.
But still, I think back and wonder how many of my health problems originated in those orchards.
Probably more than I would ever want to know.
Quick physical check, a few questions about side-effects, and I was given two thumbs up and a 'right on schedule'.
That's good news. No, that's great news!
Doc was also ecstatic that the placement of the seeds were "spot on", and he estimated target coverage at 98%. That's also great news.
But it still astounds me that something that looms so large in my life is, in reality, just a blip in the machinery of modern medicine. Day procedures and follow-up visits. Honestly, when I had my gall bladder out back in the early '90s, (and yes, this was RIGHT before the laparoscopic procedure was developed), it was a much larger event than this prostate cancer.
It's not that I want to be in the hospital, or undergo a series of procedures or radiation - I am very, very fortunate on that front, but I don't know how to explain it - it all seems sort of anti-climactic.
Now we follow with blood tests every 3 months and watch the PSA levels.
The radiation will peak in another month and a half, then start a slow decline as the radiation from the seeds begin to diminish. So a few more weeks of intense side-effects and then a gradual decline.
That will be nice.
Of course I also understand that I'm not out of the woods just yet. That story will be told over the next 18 to 24 months as we watch the PSA. I'm not really concerned - I'm just going to assume that the radiation did the trick.
That's kind of the way I approach most things anymore: I can either dream and fantasize failure or victory. Cure or curse. Whatever I spend my time contemplating isn't going to change the outcome one iota, so why not think positively? Otherwise I'm thinking of all the horrible things that could happen, and doing that - and you'll have to trust me on this - robs you of today. That's no way to live.
So, now you are all caught up.
As I've said before there are a slew of reports that come out everyday concerning prostate cancer. My inbox is stuffed every morning with articles and new drug therapies and all the latest advances. Some are encouraging, some are not.
One that caught my attention is this one:
Pesticide - Prostate Cancer Link
Well pugnuts. Yes, I said pugnuts.
I grew up in a small town in eastern Washington until I was 9 years old. My family then moved to 'the coast'. Which, for anyone living in eastern WA meant everything west of the Cascades. Like most of the people I knew, our house was surrounded by apple orchards. And I mean surrounded. Huge orchards that stretched forever. The apple trees bordered my backyard - and continued across the dirt road in front of my house for another good stretch. Other huge tracts of fruit trees lined the two-lane highway that bisected our small town. I could almost chuck an apple from my front yard across the blacktop into the other orchard.
I guess looking back it was one huge orchard with a few houses clustered here and there.
I also remember the tractors pulling the big tanks with the huge fans on the back that drove between the trees flooding the orchard with pesticides. Sometimes it was my Dad driving. He would come home for lunch - his clothes literally dripping with the stuff - and the house would fill with the peppery/chemical/acrid odor of the spray.
But my family followed safety precautions. I wasn't allowed to go outside to play until the fog had settled, and I had to stay at least two orchard-rows away from where they were spraying. Then I had to be careful not to walk under the trees while they were wet and dripping but we were kids and didn't listen as we should.
I won't even get into how they kept the frost off the trees back then. Let me say that it involved hundreds of 'smudge-pots' lining the rows, filled with oil - coal oil I think - and set afire to keep the frost away. I always knew when the mornings were cold because the thick smokey fog permeated everything, seeping into the house like an unwelcome guest.
Now I realize just how horrible all of this sounds. But it really was a different time. My family had been working in and around orchards for years. It was just part of the job and not a big deal.
Now you tell me times haven't changed.
And for the better.
But still, I think back and wonder how many of my health problems originated in those orchards.
Probably more than I would ever want to know.
Monday, August 8, 2011
Damn Cancer. Always with the problems.
Well, the nausea and fatigue didn't really go away - it just changed patterns.
That should not be allowed by the rules.
I like my life like I likes me womenz: Strong, dark, and bitter.
No wait, that's not right. That's coffee. OH! I know! I like my life to be somewhat consistent.
Stop laughing.
Anyway, I'm still experiencing some secondary side-effects. They get worse, then they get a little better giving me some hope that I'm on the downhill side, and then they get worse again.
I can handle the discomfort. I can handle the pain. I can handle the nausea and fatigue.
What I can't handle is every time I go to the bathroom wondering if the next time I'll have to be cathed. Interesting, because I've become a tad phobic about being cathed. (You can't see me right now, but I gots me a case of the 'willy-shivers' going on.) And it's so stupid, because I've been cathed quite a few times and while uncomfortable, it really isn't that big of a deal.
So, this will be the pattern for the next few months to a year. Although, if I can make it a couple more weeks, the odds that I'll have to have 'the tube' drop significantly.
I think it's more the idea than the physical actuality.
But, that's a hell of a lot of life, isn't it? The reality is often much more benign than thoughts that precede. Stupid humans.
There have been a couple of times over the last few days when I wondered if I'd selected the right treatment. With surgery it would have been done. Over. On to recovery.
Now it's like pulling a splinter out of your finger ever so slowly.
Of course with surgery it would have been like amputating the finger to get the splinter.
Damn cancer. Always with the problems.
That should not be allowed by the rules.
I like my life like I likes me womenz: Strong, dark, and bitter.
No wait, that's not right. That's coffee. OH! I know! I like my life to be somewhat consistent.
Stop laughing.
Anyway, I'm still experiencing some secondary side-effects. They get worse, then they get a little better giving me some hope that I'm on the downhill side, and then they get worse again.
I can handle the discomfort. I can handle the pain. I can handle the nausea and fatigue.
What I can't handle is every time I go to the bathroom wondering if the next time I'll have to be cathed. Interesting, because I've become a tad phobic about being cathed. (You can't see me right now, but I gots me a case of the 'willy-shivers' going on.) And it's so stupid, because I've been cathed quite a few times and while uncomfortable, it really isn't that big of a deal.
So, this will be the pattern for the next few months to a year. Although, if I can make it a couple more weeks, the odds that I'll have to have 'the tube' drop significantly.
I think it's more the idea than the physical actuality.
But, that's a hell of a lot of life, isn't it? The reality is often much more benign than thoughts that precede. Stupid humans.
There have been a couple of times over the last few days when I wondered if I'd selected the right treatment. With surgery it would have been done. Over. On to recovery.
Now it's like pulling a splinter out of your finger ever so slowly.
Of course with surgery it would have been like amputating the finger to get the splinter.
Damn cancer. Always with the problems.
Tuesday, August 2, 2011
Two Weeks In
Two weeks ago today I had the procedure.
I suppose it was naive of me to think that I could skate through this unscathed. But that's human. We have to do what we need to do to get through the day.
It's not terrible, but I'm certainly feeling the effects of the radiation. I'm experiencing quite a bit of fatigue, especially in the early afternoon. I'm queasy as hell a good bit of the time. That's always a fun combination. And, unfortunately, I'm also experiencing some urinary problems.
I had a friend ask me what it felt like. I told him imagine sitting on a grapefruit. Now add a pretty good Urinary Tract Infection on top of that and you'll get the idea. Except that when you go to pee, you can't.
The hell of brachytherapy is that I haven't really hit the toxicity mark quite yet. I could have these side effects for the next 18 months, or they could go away tomorrow.
I vote for tomorrow. :)
I'm sure I'll feel better once I can get back in the water. I don't think it will happen this week as I still have a couple open wounds. Pool water and wounds. That's not a good combo.
I also had my first true 'cancer moment' this weekend.
We went to Spokane to see relatives. It probably was a little early for that much traveling, but both Suz and I needed the trip.
So, I'm sitting in Spokane in the parking lot of a supermarket with my brother-in-law, while Suz and her sister ran inside to get some ingredients for dinner when the nausea kicked into high gear. I fought it for as long as I could but the hand writing was on the wall. Had to have my bro (Thank you Jahn!!) drive me over to the edge of the black top. As sick as I was I was still being considerate. No one wants to watch a bald man yak in the middle of a Safeway parking lot.
The whole damn episode was just weird.
I'm crossing my fingers that those days are going to be behind me very soon.
I'm also in the 'whiny' stage of recovery. One of Suzanne's favorites. :)
That's where I am. I'll keep you posted.
I suppose it was naive of me to think that I could skate through this unscathed. But that's human. We have to do what we need to do to get through the day.
It's not terrible, but I'm certainly feeling the effects of the radiation. I'm experiencing quite a bit of fatigue, especially in the early afternoon. I'm queasy as hell a good bit of the time. That's always a fun combination. And, unfortunately, I'm also experiencing some urinary problems.
I had a friend ask me what it felt like. I told him imagine sitting on a grapefruit. Now add a pretty good Urinary Tract Infection on top of that and you'll get the idea. Except that when you go to pee, you can't.
The hell of brachytherapy is that I haven't really hit the toxicity mark quite yet. I could have these side effects for the next 18 months, or they could go away tomorrow.
I vote for tomorrow. :)
I'm sure I'll feel better once I can get back in the water. I don't think it will happen this week as I still have a couple open wounds. Pool water and wounds. That's not a good combo.
I also had my first true 'cancer moment' this weekend.
We went to Spokane to see relatives. It probably was a little early for that much traveling, but both Suz and I needed the trip.
So, I'm sitting in Spokane in the parking lot of a supermarket with my brother-in-law, while Suz and her sister ran inside to get some ingredients for dinner when the nausea kicked into high gear. I fought it for as long as I could but the hand writing was on the wall. Had to have my bro (Thank you Jahn!!) drive me over to the edge of the black top. As sick as I was I was still being considerate. No one wants to watch a bald man yak in the middle of a Safeway parking lot.
The whole damn episode was just weird.
I'm crossing my fingers that those days are going to be behind me very soon.
I'm also in the 'whiny' stage of recovery. One of Suzanne's favorites. :)
That's where I am. I'll keep you posted.
Wednesday, April 27, 2011
My Radiological Oncologist And A Possible New Therapy
I met with a Radiological Oncologist on Friday.
Which was . . . about as much fun as meeting with a Radiological Oncologist.
My first impression as I walked into the building was, "Whoa! That's a strong smell of (medical) marijuana floating around the entrance." Which, for some reason, made my cancer seem very, very real.
It's strange being young, (well - relatively young), with a disease that primarily effects older men. I was the baby in the waiting room. The other men in there were in their 70s and 80s, and not looking in the best of health. Hey, they have cancer. We can't all be beautiful.
The consultation with the oncologist was rather routine, although he was highly impressed with my upcoming swim in San Fransisco in the latter part of June. Here's what I'm swimming:
Escape from Alcatraz - Sharkfest 2011
He remarked a few times about how long, and how hard I've been training for this event and what a shame it would be to miss it. This made me feel a tad guilty. I swim a lot - but I don't really 'train', if you know what I mean. I just swim. It's the only way that I can keep semi-mobile. Open water swims are a side-note; something to do on the weekends with my buddies from the pool.
He then went on to explain why radiation was better than surgery, what to expect, etc. Nothing too surprising there. Cure rates between surgery and radiation are about the same. Risk of serious side effects almost the same - a 50-50 chance, yada yada yada. Although with surgery you know immediately how screwed you are, but with radiation it sometimes takes months - or years - for the damage to show.
If I were to choose radiation therapy I would have daily treatments for 8 to 9 weeks.
I was going to post a graph of the various side effects and risks for each of the therapies but I found it depressing. You can look it up if you're that interested.
Yay.
As I'm sure you'll agree these are both, what we professionals refer to as "suck ass" therapies.
But as I'm learning, you can't really complain about the effects. Why? Because people will yell at you and tell you to be thankful that 'you're alive'.
There is an interesting gender phenomena regarding that statement above, but more on that later.
There is another therapy available. Although neither my urologist nor radiological oncologist suggested this form of treatment.
Why? Well, let's see; the urologist specializes in radical prostatectomy. He has a robotic surgery suite that he paid hundreds of thousands of dollars for, and it's what he studied in school. The radiologist has an advanced machine that he's paid hundreds of thousands of dollars for, and it is what he studied in school.
Never forget that cancer is big business.
Proton Beam Therapy has the same cure rate as surgery or radiation. It has a lower recurrence rate. But the cool thing is, proton beam has very, very few side effects when compared to surgery or external radiation. Not completely gone, but so much less it's not even funny.
Say wha?????
Unfortunately, there are only 9 Proton Beam Therapy Centers in the US at this time. Seattle is building one, (Seattle Cancer Care Alliance), but it won't be open until 2013. I just can't wait that long. I suppose it's not easy to construct a cyclotron. The nearest center for me is Loma Linda University. It's where they developed the therapy 20 years ago. Plus, the therapy is EXPENSIVE. And, even if insurance will pay a portion of the cost, I would have to figure out how to relocate to California for 8 to 9 weeks with all of the housing/food costs that would occur.
I need to win the lotto. Or sell like 7000 bracelets.
But still, to come out with a good chance of no lasting side effects? Seems like a no-brainier to me. Here's a good article from CBS News talking about Proton Beam Therapy:
CBS News Proton Beam Therapy
So I'm in the process of gathering medical records, talking to insurance, etc. Even if I clear those hurdles I might not be eligible because of my hip replacement. We shall see.
It's hard to not get really excited. But I wan't to be realistic.
So that's where I am today. I'll keep you posted.
If anyone reading this has any experience with any of the therapies I would request that you share. Comments are always welcome.
Which was . . . about as much fun as meeting with a Radiological Oncologist.
My first impression as I walked into the building was, "Whoa! That's a strong smell of (medical) marijuana floating around the entrance." Which, for some reason, made my cancer seem very, very real.
It's strange being young, (well - relatively young), with a disease that primarily effects older men. I was the baby in the waiting room. The other men in there were in their 70s and 80s, and not looking in the best of health. Hey, they have cancer. We can't all be beautiful.
The consultation with the oncologist was rather routine, although he was highly impressed with my upcoming swim in San Fransisco in the latter part of June. Here's what I'm swimming:
Escape from Alcatraz - Sharkfest 2011
He remarked a few times about how long, and how hard I've been training for this event and what a shame it would be to miss it. This made me feel a tad guilty. I swim a lot - but I don't really 'train', if you know what I mean. I just swim. It's the only way that I can keep semi-mobile. Open water swims are a side-note; something to do on the weekends with my buddies from the pool.
He then went on to explain why radiation was better than surgery, what to expect, etc. Nothing too surprising there. Cure rates between surgery and radiation are about the same. Risk of serious side effects almost the same - a 50-50 chance, yada yada yada. Although with surgery you know immediately how screwed you are, but with radiation it sometimes takes months - or years - for the damage to show.
If I were to choose radiation therapy I would have daily treatments for 8 to 9 weeks.
I was going to post a graph of the various side effects and risks for each of the therapies but I found it depressing. You can look it up if you're that interested.
Yay.
As I'm sure you'll agree these are both, what we professionals refer to as "suck ass" therapies.
But as I'm learning, you can't really complain about the effects. Why? Because people will yell at you and tell you to be thankful that 'you're alive'.
There is an interesting gender phenomena regarding that statement above, but more on that later.
There is another therapy available. Although neither my urologist nor radiological oncologist suggested this form of treatment.
Why? Well, let's see; the urologist specializes in radical prostatectomy. He has a robotic surgery suite that he paid hundreds of thousands of dollars for, and it's what he studied in school. The radiologist has an advanced machine that he's paid hundreds of thousands of dollars for, and it is what he studied in school.
Never forget that cancer is big business.
Proton Beam Therapy has the same cure rate as surgery or radiation. It has a lower recurrence rate. But the cool thing is, proton beam has very, very few side effects when compared to surgery or external radiation. Not completely gone, but so much less it's not even funny.
Say wha?????
Unfortunately, there are only 9 Proton Beam Therapy Centers in the US at this time. Seattle is building one, (Seattle Cancer Care Alliance), but it won't be open until 2013. I just can't wait that long. I suppose it's not easy to construct a cyclotron. The nearest center for me is Loma Linda University. It's where they developed the therapy 20 years ago. Plus, the therapy is EXPENSIVE. And, even if insurance will pay a portion of the cost, I would have to figure out how to relocate to California for 8 to 9 weeks with all of the housing/food costs that would occur.
I need to win the lotto. Or sell like 7000 bracelets.
But still, to come out with a good chance of no lasting side effects? Seems like a no-brainier to me. Here's a good article from CBS News talking about Proton Beam Therapy:
CBS News Proton Beam Therapy
So I'm in the process of gathering medical records, talking to insurance, etc. Even if I clear those hurdles I might not be eligible because of my hip replacement. We shall see.
It's hard to not get really excited. But I wan't to be realistic.
So that's where I am today. I'll keep you posted.
If anyone reading this has any experience with any of the therapies I would request that you share. Comments are always welcome.
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