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Post by The Walk of the Penguin Mich on Oct 16, 2014 18:49:01 GMT -5
I have no idea, Bonny....just getting a diagnosis was a freaking clusterf*&^ in upstate NY.
One of the doctors told us that when most people are diagnosed with pancreatic cancer, the pain usually drives them to the doctor. My dad had no pain at all. His main symptom was a constricted bile duct. They went in with an ERCP expecting to find stones but there were no stones. They reopened the bile duct with a stent and everything returned to normal but a constricted duct is not normal, something caused it to constrict and they suspected pancreatic cancer. Biopsy #1 done during the ERCP came back normal cells. CT came back with no signs of any growth. We saw doctor 2, and then #3 in Albany. He thought that my dad's cancer was so small that they could go in and do a Whipple and get rid of it all successfully. However, dad has pulmonary fibrosis and likely his lungs could not withstand such a surgery. He was also unwilling to take a chance for something that the doctors *thought* that had, but no proof. The only thing that the doctors had was some sort of cancer marker, which was indicative but not proof because other things could raise the value (including his pulmonary fibrosis).
Off to doctor #4 and 5 in NYC. They did another CT scan and found a little something. They also did a needle biopsy and it came back positive. So early summer, 6 months after they *thought* he had cancer, he finally got a definitive diagnosis and treatment plan. He just finished up chemo and radiation and is on a maintenance dose of chemo weekly. Last CT scan came back clean. The marker that they were looking at was back to normal levels. He's doing well right now, but his pulmonary fibrosis is kicking his ass.
So stage wise, I guess he was caught in a very early stage. But I doubt he's got 5 years, and his doctors think that his PF is likely going to kill him, not the cancer.
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mollyanna58
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Post by mollyanna58 on Oct 16, 2014 19:06:52 GMT -5
True, there are no guarantees. But not everyone's brain turns to mush.
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Bonny
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Post by Bonny on Oct 16, 2014 19:34:05 GMT -5
I have no idea, Bonny....just getting a diagnosis was a freaking clusterf*&^ in upstate NY. One of the doctors told us that when most people are diagnosed with pancreatic cancer, the pain usually drives them to the doctor. My dad had no pain at all. His main symptom was a constricted bile duct. They went in with an ERCP expecting to find stones but there were no stones. They reopened the bile duct with a stent and everything returned to normal but a constricted duct is not normal, something caused it to constrict and they suspected pancreatic cancer. Biopsy #1 done during the ERCP came back normal cells. CT came back with no signs of any growth. We saw doctor 2, and then #3 in Albany. He thought that my dad's cancer was so small that they could go in and do a Whipple and get rid of it all successfully. However, dad has pulmonary fibrosis and likely his lungs could not withstand such a surgery. He was also unwilling to take a chance for something that the doctors *thought* that had, but no proof. The only thing that the doctors had was some sort of cancer marker, which was indicative but not proof because other things could raise the value (including his pulmonary fibrosis). Off to doctor #4 and 5 in NYC. They did another CT scan and found a little something. They also did a needle biopsy and it came back positive. So early summer, 6 months after they *thought* he had cancer, he finally got a definitive diagnosis and treatment plan. He just finished up chemo and radiation and is on a maintenance dose of chemo weekly. Last CT scan came back clean. The marker that they were looking at was back to normal levels. He's doing well right now, but his pulmonary fibrosis is kicking his ass. So stage wise, I guess he was caught in a very early stage. But I doubt he's got 5 years, and his doctors think that his PF is likely going to kill him, not the cancer. Wow, that's quite a journey. I'm glad they seemed to have caught it early but a shame about the PF. I looked it up on the Mayo website as I wasn't sure what it was. I don't want to hijack Milee's thread so I'll send you a PM.
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Post by Deleted on Oct 17, 2014 10:03:13 GMT -5
Well, I did it! I rented a Redbox movie and left the 12 year old in charge of his brother. I thought I was going to pass out a couple times but made it through. Unfortunately the tech told me since it was my first one I'm probably going to end up with a call back in a few days for additional scans...but don't panic. Yeah, right. I won't.
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Chocolate Lover
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Post by Chocolate Lover on Oct 17, 2014 10:22:24 GMT -5
Yay for getting it done MPL! And I assume both kids survived?
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NomoreDramaQ1015
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Post by NomoreDramaQ1015 on Oct 17, 2014 10:22:28 GMT -5
On the one hand part of me would want to fight for everyday with my kids. On the other I watched my grandfather waste away from brain cancer and saw how much pain it caused my father, I don't think I could stand to put my kids thru that if I could avoid it.
Part of the problem is you don't get a straight forward answer because there is no way to know. First doctor gave my grandpa 3 months. The next one gave him six. The third thought he could extend it to a year with an experimental treatment designed to ease symptoms and slow down the rapid pace of the type of cancer grandpa had.
The first doctor ended up being right and the last month wasn't very pleasant for anyone involved. I can't stomach the idea of my kids having to change my diaper, clip my nails and do everything I once could do for myself.
Then again my grandfather was diagnosed with this cancer 6 years ago. So that's a very long time for him to have lived with it and been in remission.
It would really depend. If I could get another 6 years of life I would do whatever it takes. If I am only going to have a couple months and those will be spent immobile with DH/my kids changing my diapers I think I'd opt for hospice care.
DH is the exact opposite of me. You do EVERYTHING no matter how remote the chance to extend your life because you owe it to everyone. Even if you end up spending your days as a vegetable. You do it because even if the chance is 0.000001% you'll ever snap out of it there is still that chance.
I warned him if it ever comes to that point I am not enduring and not making the kids watch him be a vegetable for some miniscule ass chance he might go back to normal. I said you'll be a vegetable so your opinion by that point is moot unless you get off your ass and make a living will. Which he won't because he knows what I am going to put in mine and doesn't "like to talk about it".
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Firebird
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Post by Firebird on Oct 17, 2014 10:29:39 GMT -5
DH is the exact opposite of me. You do EVERYTHING no matter how remote the chance to extend your life because you owe it to everyone. Even if you end up spending your days as a vegetable. You do it because even if the chance is 0.000001% you'll ever snap out of it there is still that chance.
I can't understand that at all. If I'm a vegetable, I'd rather let my organs go to people who do have a chance to live. And let my family have some closure. I can't even stand to think about DH being a vegetable for weeks on end, let alone years. It tears me up even more than the thought of him being dead.
It's the same reason I have even more sympathy for people whose kids disappear and never come back than I do for people whose kids die. Not that both aren't the stuff of horrifying nightmares forever, but the uncertainty of never knowing what happened or whether they might someday turn up on your doorstep, not being able to grieve properly because you don't even know for sure they're dead... it must be unbearable.
Dead is awful, but dead is also final. Sometimes death is kinder than living. It allows people who love you to let go.
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Post by The Walk of the Penguin Mich on Oct 17, 2014 10:29:49 GMT -5
Part of the problem is you don't get a straight forward answer because there is no way to know. First doctor gave my grandpa 3 months. The next one gave him six. The third thought he could extend it to a year with an experimental treatment designed to ease symptoms and slow down the rapid pace of the type of cancer grandpa had.
This is it exactly. Right now, the doctors will not give my dad a prognosis and it is driving my sister nuts. They don't know, and I get that. His cancer is rather unusual in his presentation and he has a confounding condition where it is entirely possible the condition will kill my dad before the cancer. And doctors won't give a prognosis for this either, because the range of survival without a lung transplant is from a month to a decade. He may as well throw a dart at a target filled with dates in the future, because that's about as good as it's going to get.
I just had to talk my sister down about this yesterday. She's pissed and there is nothing I can say to alleviate this because she's not listening to reason right now.
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Post by Deleted on Oct 17, 2014 10:34:11 GMT -5
Yay for getting it done MPL! And I assume both kids survived? Yep, I'm only 10 minutes from the hospital, so gone less than an hour. They hadn't moved from their places on the couch when I got back.
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milee
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Post by milee on Oct 17, 2014 10:34:29 GMT -5
Well, I did it! I rented a Redbox movie and left the 12 year old in charge of his brother. After a few days, see if you can get the little guy to spill the beans and let you know what they do when you're gone. I promise you whatever he tells you will be more scary than getting the mammogram.
We kind of have a don't ask, don't tell policy with our boys. They're good boys so nothing has ever been broken or anyone hurt, but I do think they take advantage of the time to do things they know we wouldn't like. A few months ago, the youngest got a very excited look on his face, totally beaming while he breathlessly told me that "when you're gone, we get to ride the scooters IN THE HOUSE!!!"
And just a few weeks ago, when I was getting ready to go out with DH and leave the boys at home, the youngest came to check on me. He asked, "so when are you guys leaving again?" While he was snapping on his helmet. Me, "um, we may not be going out at all. Why do you need a helmet?"
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Bonny
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Post by Bonny on Oct 17, 2014 10:42:46 GMT -5
DH is the exact opposite of me. You do EVERYTHING no matter how remote the chance to extend your life because you owe it to everyone. Even if you end up spending your days as a vegetable. You do it because even if the chance is 0.000001% you'll ever snap out of it there is still that chance.
I can't understand that at all. If I'm a vegetable, I'd rather let my organs go to people who do have a chance to live. And let my family have some closure. I can't even stand to think about DH being a vegetable for weeks on end, let alone years. It tears me up even more than the thought of him being dead. It's the same reason I have even more sympathy for people whose kids disappear and never come back than I do for people whose kids die. Not that both aren't the stuff of horrifying nightmares forever, but the uncertainty of never knowing what happened or whether they might someday turn up on your doorstep, not being able to grieve properly because you don't even know for sure they're dead... it must be unbearable. Dead is awful, but dead is also final. Sometimes death is kinder than living. It allows people who love you to let go. I understand and agree with most of what you say Angry Bird but wanted to point out that if you have cancer they don't want your organs.
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Baby Fawkes
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Post by Baby Fawkes on Oct 17, 2014 10:43:43 GMT -5
Well, I did it! I rented a Redbox movie and left the 12 year old in charge of his brother. After a few days, see if you can get the little guy to spill the beans and let you know what they do when you're gone. I promise you whatever he tells you will be more scary than getting the mammogram.
We kind of have a don't ask, don't tell policy with our boys. They're good boys so nothing has ever been broken or anyone hurt, but I do think they take advantage of the time to do things they know we wouldn't like. A few months ago, the youngest got a very excited look on his face, totally beaming while he breathlessly told me that "when you're gone, we get to ride the scooters IN THE HOUSE!!!"
And just a few weeks ago, when I was getting ready to go out with DH and leave the boys at home, the youngest came to check on me. He asked, "so when are you guys leaving again?" While he was snapping on his helmet. Me, "um, we may not be going out at all. Why do you need a helmet?"
You just have to take it as a positive that you've installed the helmet requirement in them well enough
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Baby Fawkes
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Post by Baby Fawkes on Oct 17, 2014 10:46:12 GMT -5
Well, I did it! I rented a Redbox movie and left the 12 year old in charge of his brother. I thought I was going to pass out a couple times but made it through. Unfortunately the tech told me since it was my first one I'm probably going to end up with a call back in a few days for additional scans...but don't panic. Yeah, right. I won't. Way to go MPL. Glad that you went to get that done. My mum was the same when I was younger, but after I went through cancer it gave her a different mindset and now she always goes regularly for stuff like that. I guess being with someone / seeing someone go through can send you one way or the other when it comes to fear of it all, but I think you've gone in the better direction now
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milee
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Post by milee on Oct 17, 2014 10:49:07 GMT -5
After a few days, see if you can get the little guy to spill the beans and let you know what they do when you're gone. I promise you whatever he tells you will be more scary than getting the mammogram.
We kind of have a don't ask, don't tell policy with our boys. They're good boys so nothing has ever been broken or anyone hurt, but I do think they take advantage of the time to do things they know we wouldn't like. A few months ago, the youngest got a very excited look on his face, totally beaming while he breathlessly told me that "when you're gone, we get to ride the scooters IN THE HOUSE!!!"
And just a few weeks ago, when I was getting ready to go out with DH and leave the boys at home, the youngest came to check on me. He asked, "so when are you guys leaving again?" While he was snapping on his helmet. Me, "um, we may not be going out at all. Why do you need a helmet?"
You just have to take it as a positive that you've installed the helmet requirement in them well enough That's what worries me. They both think the helmet is stupid and not really needed for standard things. So the idea that they were about to try something that required a helmet really freaked me out.
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Firebird
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Post by Firebird on Oct 17, 2014 11:00:12 GMT -5
That's what worries me. They both think the helmet is stupid and not really needed for standard things. So the idea that they were about to try something that required a helmet really freaked me out.
Ah, every kid has to bungee jump off the school roof once or twice. It's a time honored rite of passage.
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swamp
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Post by swamp on Oct 17, 2014 11:02:55 GMT -5
That's what worries me. They both think the helmet is stupid and not really needed for standard things. So the idea that they were about to try something that required a helmet really freaked me out.
Ah, every kid has to bungee jump off the school roof once or twice. It's a time honored rite of passage. I missed that one.
However, the swim coach used to let us jump off the observation balcony into the pool after swim practice. I'm sure he'd get fired for that now.
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milee
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Post by milee on Oct 17, 2014 11:04:56 GMT -5
Yeah, you get a few sad sack paralyzed kids and it's like everybody goes all party pooper on you. Lighten up, people!
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Firebird
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Post by Firebird on Oct 17, 2014 11:11:55 GMT -5
I was watching a show a few weeks ago called "When Vacations Attack" (vacations, sure - more like "When Stupid Attacks"). The first story was about this group of teenage boys who were jumping off a ~30 foot cliff into a lake. Okay, fine. Then one kid decided to up the ante by dousing a bush at the edge of the cliff in lighter fluid, lighting it up and leaping over it into the lake.
You can all see where this is going. He didn't exactly make it - he tripped over the bush and landed headfirst in a bunch of rocks about 20 feet down. It was pretty gruesome (one of the other boys was filming).
Miraculously, he not only survived but suffered no long term brain damage or paralysis. Proof that God (or whoever) protects fools and drunks, I guess.
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swamp
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Post by swamp on Oct 17, 2014 11:17:13 GMT -5
I was watching a show a few weeks ago called "When Vacations Attack" (vacations, sure - more like "When Stupid Attacks"). The first story was about this group of teenage boys who were jumping off a ~30 foot cliff into a lake. Okay, fine. Then one kid decided to up the ante by dousing a bush at the edge of the cliff in lighter fluid, lighting it up and leaping over it into the lake. You can all see where this is going. He didn't exactly make it - he tripped over the bush and landed headfirst in a bunch of rocks about 20 feet down. It was pretty gruesome (one of the other boys was filming). Miraculously, he not only survived but suffered no long term brain damage or paralysis. Proof that God (or whoever) protects fools and drunks, I guess. OK, that's just being a dumbass.
When I jump off stuff into water, I at least make sure it's clear, nothing in the water, nothing to hit on the way down, don't jump over stuff, etc.
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milee
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Post by milee on Oct 17, 2014 11:22:21 GMT -5
The first story was about this group of teenage boys who were jumping off a ~30 foot cliff into a lake. Okay, fine. Then one kid decided to up the ante by dousing a bush at the edge of the cliff in lighter fluid, lighting it up and leaping over it into the lake. Just so you know - this is the exact sort of thing I picture when I see my kid putting on a helmet. Pretty sure that's the level of activity that he'd think merited wearing a helmet.
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ohmomto2boys
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Post by ohmomto2boys on Oct 17, 2014 11:22:34 GMT -5
I would fight! Who knows what could happen in those few months with research. Also, I know of one case where my friends parent was diagnosed with cancer, given 3 mths to live without treatment or 6 - 9 mths with treatment. Well, they chose to fight and 5 yrs later he is still going strong. The treatments were worth it.
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Firebird
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Post by Firebird on Oct 17, 2014 11:30:36 GMT -5
Just so you know - this is the exact sort of thing I picture when I see my kid putting on a helmet. Pretty sure that's the level of activity that he'd think merited wearing a helmet.
A helmet would have definitely been an improvement. The kid in the show had a horrifying gash from his scalp to the bottom of his neck and was lying in a very large pool of blood by the time his friends got down to him. He was in the hospital forever. I'm sure a helmet would have mitigated the damage. So at least you know that your kid is not as dumb as this kid. I'm good at comforting, huh?
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