Was on a high until yesterday.
Comments
-
Chip,gfpiv said:Hang in there
Pam, you've gotten some good advice/perspective from folks already. It's very true about how everyone reacts differently, and who's to say you can't be in the percentage that is able to beat it? As you know, there are all sorts of treatment options, and more on the way.
I'm in a similar boat to you - "numerous" liver mets, excellent reaction to chemo, but no expectation of ever becoming resectable...so likely "chemo for life". And yes, cancer - and the associated treatments - really does suck at times, but I am still very much enjoying my life to the fullest extent I can, and counting my blessings daily.
One thing I found helpful in my case was installation of a hepatic pump (HAI), which delivers concentrated chemo to tumors in the liver. True, unlike some people's results, it hasn't shrunk my lesions to where they might be operable, and we don't expect it ever will. However, the monthly treatments themselves are MUCH easier to get through than systemic chemo (which I'm also doing bi-weekly). And I fully believe that HAI has been a major reason I've been able to buy myself disease stability over the past 11 months. Who knows, maybe if we stick it out long enough, that miracle cure will come around the bend for all of us?
Anyway, just wanted to throw HAI into the discussion in case that might be a viable possibility in your case. Best of luck in the battle, it sounds like you have a lot to live for, don't give up hope.
-Chip
Thanks for bringing up the HAI subject; I brought it up to my Onc and he did say it could be an option down the line depending on my numbers and how my cancer acts in the future. It's funny how when they tell you "chemo for life" it feels like you're the only one. After getting responses from everyone, I don't feel so alone in this anymore. Best wishes to you also in this battle; I'll be right here for as long as I'm allowed doing my best to enjoy the time I have with my girls! I'm hopeful for both of us.....ALL of us!
Pam0 -
Thanks Marie,herdizziness said:Oh Pam
Dear Pam,
Those words were said to me once upon a time. If I survived the 4 - 6 months by some miracle (it's been 1 year and 5 months now)that I would be on chemo for life, that I would never have surgery. I prepared my video will, wrote my letters, gave my precious things to those who I wanted to have them and felt happy that I had the chance to take care of things.
And here I sit 7 months after my surgery (the one I would never qualify for)and 4 weeks after my LAST chemo that I was told would never, ever end (well, for however long that lasts, which I hope is a long time) time is a good thing, things can change for the better.
So do not despair my dear, do not despair.
Love and hugs,
Winter Marie
I'm hoping there's a time for me too to be able to tell this tale to someone who has been shot down with the 'timeframe' speech. I've done the will, beneficiary deed, health directive POA, etc., etc. I can't give up that easily. I'm going to keep hoping thanks to people like you who have been kind enough to take time out of your day to give me that hope!
Love and hugs back,
Pam0 -
Thanks Kim!Annabelle41415 said:Hope
You need to continue to hope. Get a second opinion as there might be other options out there for you. If others have their tumors controlled and are here 7 years later than there should be that same plan for you.
Kim
I felt the same way with my CEA at 1.7...I just have to keep believing. Thanks for your encouragement..it means so much.
Pam0 -
Phil,PhillieG said:Hi Pam
To be honest, I'm not sure that I believe your oncologist. I just don't get how he can make these predictions. Does he have tomorrow's lottery numbers by any chance since he seems to be able to see into the future?
First, your tumor markers are down.
Second, your tumors are shrinking.
Third, how does that figure into 2-3 years?
Are the tumors in such bad areas that they can not be dealt with by a resection or by RFA?
I was diagnosed on Feb 25th, 2004 with stage IV colon cancer. My liver was a mess with tumors making me inoperable (at the time). My oncologist was still talking "cure" with me, we never had any discussions other than that. She certainly never took out the crystal ball that some oncologists seem to get. Maybe she stayed in class that day instead of getting a crystal ball? I really have very little "trust" in someone who would give me an expiration date unless I was one giant walking tumor.
True, after the liver was dealt with by a resection and an HAI pump, I had to deal with lung mets which I'm still dealing with, but after 3 operations (2005, 06, 07) I had just a few small nodes in my lung(s) that were (and still are) being dealt with by RFAs. I've also stayed on chemo (Erbitux) but that is more of a targeted type of chemo and while there are side effects, I am able to live a fairly normal life. My oncologist and I still talking "cure" too. So I'm here after about 7 1/2 years.
In the beginning of this whole thing I had no idea what to expect but I had a 10 yr old and 4 yr old at the time. Now they're 17 and 11. Have there been times when I didn't think I'd be writing 7+ years after my diagnosis? You betcha! (Ewwww) Are there times when I'm driving on the highway when some moron almost kills me? You betcha with that too. You never know.
I know that we are all different and respond to treatment differently. I can't say that if you do as I do you will have similar results. I'm also not saying that you won't either. For me, going for chemo once every 3 weeks is not a big deal. If I have to do this for another 10 years, I'll take it. Maybe nutrition is the way to go, others on this site have had great success with that method. There does not seem to be one size that fits all with cancer. If it were me, I'd seriously consider getting another opinion on your situation.
All the best
-phil
I know exactly what you're saying. I couldn't get my mind around it either. My CEA is at 1.6, my lesions have all been shrinking and the "typical" expectation is 2-3 years?!! I was shocked. All 3 of my girls were sitting there stunned. I thought things were looking up, not down. I will give this treatment its run and I should finish up around the first week of December. If my numbers continue to be good and the tumors continue to shrink, I will see what his outlook is at that time. If I still have an "expiration date" then I will definitely be looking at different options. I'm not about to give up; I read you and Clift's postings and have since coming here after my surgery and I hang on your advice and experience with this dreaded disease. I admire you for the fight you've put out and I aspire to fight just as hard. Thanks for the encouragement Phil and I will have you in my thoughts and prayers!
Hugs,
Pam0 -
Phil,PhillieG said:Hi Pam
To be honest, I'm not sure that I believe your oncologist. I just don't get how he can make these predictions. Does he have tomorrow's lottery numbers by any chance since he seems to be able to see into the future?
First, your tumor markers are down.
Second, your tumors are shrinking.
Third, how does that figure into 2-3 years?
Are the tumors in such bad areas that they can not be dealt with by a resection or by RFA?
I was diagnosed on Feb 25th, 2004 with stage IV colon cancer. My liver was a mess with tumors making me inoperable (at the time). My oncologist was still talking "cure" with me, we never had any discussions other than that. She certainly never took out the crystal ball that some oncologists seem to get. Maybe she stayed in class that day instead of getting a crystal ball? I really have very little "trust" in someone who would give me an expiration date unless I was one giant walking tumor.
True, after the liver was dealt with by a resection and an HAI pump, I had to deal with lung mets which I'm still dealing with, but after 3 operations (2005, 06, 07) I had just a few small nodes in my lung(s) that were (and still are) being dealt with by RFAs. I've also stayed on chemo (Erbitux) but that is more of a targeted type of chemo and while there are side effects, I am able to live a fairly normal life. My oncologist and I still talking "cure" too. So I'm here after about 7 1/2 years.
In the beginning of this whole thing I had no idea what to expect but I had a 10 yr old and 4 yr old at the time. Now they're 17 and 11. Have there been times when I didn't think I'd be writing 7+ years after my diagnosis? You betcha! (Ewwww) Are there times when I'm driving on the highway when some moron almost kills me? You betcha with that too. You never know.
I know that we are all different and respond to treatment differently. I can't say that if you do as I do you will have similar results. I'm also not saying that you won't either. For me, going for chemo once every 3 weeks is not a big deal. If I have to do this for another 10 years, I'll take it. Maybe nutrition is the way to go, others on this site have had great success with that method. There does not seem to be one size that fits all with cancer. If it were me, I'd seriously consider getting another opinion on your situation.
All the best
-phil
I know exactly what you're saying. I couldn't get my mind around it either. My CEA is at 1.6, my lesions have all been shrinking and the "typical" expectation is 2-3 years?!! I was shocked. All 3 of my girls were sitting there stunned. I thought things were looking up, not down. I will give this treatment its run and I should finish up around the first week of December. If my numbers continue to be good and the tumors continue to shrink, I will see what his outlook is at that time. If I still have an "expiration date" then I will definitely be looking at different options. I'm not about to give up; I read you and Clift's postings and have since coming here after my surgery and I hang on your advice and experience with this dreaded disease. I admire you for the fight you've put out and I aspire to fight just as hard. Thanks for the encouragement Phil and I will have you in my thoughts and prayers!
Hugs,
Pam0 -
Thanks Gail,tootsie1 said:Don't give up!
Hi, Pam.
You've had so many words of wisdom come your way, so I don't really have anything to add, except to say hang in there and see what another opinion might mean for you. Never hurts to see!
*hugs*
Gail
No way am I EVER giving up!
Hugs back,
Pam0 -
Pam
"when I look at people I work with and know they are healthy and have the luxury of planning for retirement or even a vacation next winter, and I'm not sure how much time I even have, it's so sad."
Hi Pam
Your post brought me back to a time about 4 years ago when I had these same thoughts as you talk about above. Just finishing up treatment for my 3rd recurrence in just 7-years, I don't think like that too much anymore.
But back then all my vacation time was used for sick time, so I got no "me time" while everyone was sailing away on their vacations, I was home "on vacation" so sick I could never think about tomorrow.
And it was funny to know that retirement was out when the guy next to you had just retired and others were planning around. There's always that sense of "Why them and not me?" You're no different than anyone - you, me, everybody just want what everybody else seems to have. It's just human nature - only we've had the mortality issue to wrestle with.
And people always tell you "we're not guaranteed tomorrow anyway." No kidding, what a revelation, you don't say? Know what the difference is between the normal person and a cancer person?
We know we are not guaranteed tomorrow, but the people that use that line are making plans for tomorrow, aren't they? That's because they figure to be here - and we're not exactly sure what's up for us, as you said before.
I've done the same thing with regards to looking at people we think are healthy. I've done it at work and just people watching. I think when we're sick and others are not, we say "Why them and not me?"
And when we're well and someone else is sick, we ask the same thing, "Why them and not me?"
A difficult question with very few answers I'm afraid.
I was told in Xmas 2007 that I would not see Xmas 2008 - they termed it "very unlikely." I had gone Stage IV and it was in my liver then and it did look bleak. But roll the calendar forward to the hot, hot summer of 2011 and guess what? I'm still here. This Xmas will make 4-years from the death sentence they gave me.
I just finished up these past 10-months doing my 2nd lung surgery, 30x radiation treatments with pump and 6-months of Folfiri with pump. We're back to a watch and wait state for the 3rd time - I've had cancer 3x and knocked it back down 3x.
So, just hang in there and fight on and see what happens. Good things can happen.
Take care for now.
-Craig0 -
Pam.....1 more thing.......tootsie1 said:Don't give up!
Hi, Pam.
You've had so many words of wisdom come your way, so I don't really have anything to add, except to say hang in there and see what another opinion might mean for you. Never hurts to see!
*hugs*
Gail
My cousin in Florida had breast cancer and it metastisized to the bone and spine.She was given 6 months to live. That was 14.5 years ago. Her success was 1 she was lucky (even though I don't believe in luck) 2 she was diligent in her treatment regimen (she didn't know that word quit. 3 she would travel anywhere she needed to to get whatever shot,chemo,pill,radiation etc that she needed. ( a luxury that all of us can't afford) but she is fine now although she is on maintenance chemo for the rest of her life she doesn't care. She beat it so far and is very happy with her life...so it can be done..Its a matter of a few things coming together....I think its way more doable than we think it is, but we have to take a lot of matters into our own hands to get there, but sweetheart, with the help of these people in here, our Drs and Oncologists and most certainly our buddy upstairs we will get there........love to you...buzz0 -
doctors are human, we all make mistakes
dear pam,
your onc says 2-3 years or maybe its 23 years.they dopn't know. on csn we have so many remarkable survivors here, it could be something about csn. hang around here, we bring out the best in each other most of the time.
the difference in the prognosis is just a dash, one way we miss out on our kids lives the other we probably see the grand kids.
if you are interested read the anticancer post i put up a few days ago about alternatives. i guess i can say that the alternatives are my cup of tea so to speak, but not everyones.
from what i have read i would give my body the best chance to beat crc and survive the chemo. to that means complementary therapies. from juicing to tcm.
i am glad the earlier replies have helped cheer you up, reading a book like anticancer will give you food for thought. it just offers options to enhance many traditional therapies.
i found it pretty positive.
hugs,
pete0 -
Pam -
Winter Marie is right on target. Use the oncologist's words
as the "wake up call" some of us require to get our act together.
The average time after CRC dx, is indeed 2-3 years. Sometimes
less, sometimes more. The statistics have not changed in nearly
40 years, regardless what you hear otherwise. The time between
diagnosis and death is longer now, only due to the ability to be
diagnosed earlier. That has been proven, and well documented.
"Chemo for life" is nothing to fear, and I'm sure Phil will back that
up. He has a fantastic team that's treating cancer as a "chronic disease",
and issuing the right chemical dosages at the right times.
It's one thing to hear the facts and deal with them, and doing the
opposite, by trying to bury one's head in the sand and think everything's
going to be just fine and dandy. Cancer is a terminal disease; it's
called that for a reason. To date, there is no known "cure" for it.
Winter Marie explained well, how she faced it, and took the
time and initiative to get everything in order for all those around her.
It is important to do that. There's a rough road ahead Pam, why
wait until you're wallowing in the mud? It's so much nicer to
know that all the "little things"; all the necessary paperwork, wills,
etc., are taken care of, so you can have a clear head that's needed
to fight for your life.
The problem is when we listen to all those that tell us that there's
nothing to worry about; that cancer is not terminal and can be cured,
that we become complacent and ignore the real facts.
There's a time for "feel good" comments, and a time to wake up
to the ugly reality. You may do very well; some of us have, so
why not you? There's no reason to "lose hope" just because you
are facing facts.
There's an old saying: Keep your friends close, and your enemies closer.
Knowing the enemy and it's real strengths, gives you the ability
to fight it properly.
Get another opinion from an oncologist that is not of the same
group or organization. You are entitled to that. And always
take someone with you to any/all appointments. In the flurry
of comments, we can become lost in our own thoughts and
miss important things the doctor is explaining; having a second
set of ears is a necessity. Take notes and ask for copies of
all reports and scans, etc.
Try your best, not to allow fear to guide you. Fear is terrible, and
can cause you to make errors in judgement. It's as bad as ignoring
facts! Sure, it's scary stuff that you're faced with, we all understand
that all too well. We are all here for the same reason; we all
have cancer. Some of us have been here for a lot longer that
our prognosis.......
I think you'll do fine, Pam. But please, don't run away from the
facts? Give yourself a chance to learn more about what's going
on, and to adjust to the new life of having to deal with this
dreaded disease.
My best to you,
John0 -
Stats
The thing with the "2-3 years" mantra is that, yes, out of everyone who is diagnosed, people may live 2-3 years. That means that the 95 year old man who's a chronic smoker and who is diagnosed with stage IV colon cancer may die in 6 months. So might the 89 year old woman who has heart disease and a wooden leg. Then, the 40 something person may life 15 years after DX and die of something else. When taken on an "average" the numbers may turn into a 2-3 year thing but remember that not everyone is in their 40s, or in generally good health.
That's why I REALLY dislike the whole numbers game, it's skewed and while it may make some sense on paper, in reality it's non-sense.
-p0 -
Things to ponder
Sure, if you are the "average" person, those stats just might apply to you. But there is no way to know. None of us has a crystal ball, including your oncologist. But it is a bit of a wake-up call to make sure you have things in order if you don't already. Just like I did starting into chemo, hope for the best, but prepare for the worst. Make sure you have a will and things laid out for your wishes with your kids - things we should all do anyway. None of us live forever, but most of us tend to avoid the topic of death.
I am on chemo for life. It has been almost 2 years since my dx, and I know for certain I had colon cancer for 2 years prior to my dx (was misdiagnosed for a long time). So I've been living with it for 4 years already, and don't think I'm going aywhere anytime soon. If your only metastasis is in your liver, you might shrink things enough to be a candidate for surgery or another procedure at some point. I will never be. Mine are distant lymph nodes only - chemo for life. The times I have had a short break or maintenance, I progressed quiickly. I have to stay on Iriontecan to keep it under control. So it is just like managing other chronic diseases with frequent labs, scans and chemo.
The reality is you could have something freak happen and be gone next month. Or you could keep the cancer under control for another 5 years, or you could shrink things down to a level where you do qualify for surgery or another procedure and maybe even become cancer free. No one knows. For now you take it one day at a time, and keep fighting for yourself and for your kids! Be realistic, but keep the hope!0 -
Well Craig....Sundanceh said:Pam
"when I look at people I work with and know they are healthy and have the luxury of planning for retirement or even a vacation next winter, and I'm not sure how much time I even have, it's so sad."
Hi Pam
Your post brought me back to a time about 4 years ago when I had these same thoughts as you talk about above. Just finishing up treatment for my 3rd recurrence in just 7-years, I don't think like that too much anymore.
But back then all my vacation time was used for sick time, so I got no "me time" while everyone was sailing away on their vacations, I was home "on vacation" so sick I could never think about tomorrow.
And it was funny to know that retirement was out when the guy next to you had just retired and others were planning around. There's always that sense of "Why them and not me?" You're no different than anyone - you, me, everybody just want what everybody else seems to have. It's just human nature - only we've had the mortality issue to wrestle with.
And people always tell you "we're not guaranteed tomorrow anyway." No kidding, what a revelation, you don't say? Know what the difference is between the normal person and a cancer person?
We know we are not guaranteed tomorrow, but the people that use that line are making plans for tomorrow, aren't they? That's because they figure to be here - and we're not exactly sure what's up for us, as you said before.
I've done the same thing with regards to looking at people we think are healthy. I've done it at work and just people watching. I think when we're sick and others are not, we say "Why them and not me?"
And when we're well and someone else is sick, we ask the same thing, "Why them and not me?"
A difficult question with very few answers I'm afraid.
I was told in Xmas 2007 that I would not see Xmas 2008 - they termed it "very unlikely." I had gone Stage IV and it was in my liver then and it did look bleak. But roll the calendar forward to the hot, hot summer of 2011 and guess what? I'm still here. This Xmas will make 4-years from the death sentence they gave me.
I just finished up these past 10-months doing my 2nd lung surgery, 30x radiation treatments with pump and 6-months of Folfiri with pump. We're back to a watch and wait state for the 3rd time - I've had cancer 3x and knocked it back down 3x.
So, just hang in there and fight on and see what happens. Good things can happen.
Take care for now.
-Craig
NOW I really feel like a whiner. I'm realizing the more people I talk to on the board that there IS hope as long as you're willing to fight and hang in there.....and THAT, I am! Like Clift said in his last post....I will travel wherever I have to, take as many pills, suffer thru the awful sick feelings as long as there is one more thing out there to keep me alive. Thanks for giving me support and cheering me on. I will believe that good things WILL happen.
Hugs,
Pam0 -
Again...Buzzard said:Pam.....1 more thing.......
My cousin in Florida had breast cancer and it metastisized to the bone and spine.She was given 6 months to live. That was 14.5 years ago. Her success was 1 she was lucky (even though I don't believe in luck) 2 she was diligent in her treatment regimen (she didn't know that word quit. 3 she would travel anywhere she needed to to get whatever shot,chemo,pill,radiation etc that she needed. ( a luxury that all of us can't afford) but she is fine now although she is on maintenance chemo for the rest of her life she doesn't care. She beat it so far and is very happy with her life...so it can be done..Its a matter of a few things coming together....I think its way more doable than we think it is, but we have to take a lot of matters into our own hands to get there, but sweetheart, with the help of these people in here, our Drs and Oncologists and most certainly our buddy upstairs we will get there........love to you...buzz
Whatever would I do without you? You so put things in perspective for me and give me the motivation to keep going. I have to believe I'm as worthy of another 14.5 years as your cousin. I'm keepin on, keepin on Buzz.............you do the same!
love,
Pam0 -
Thanks Pete for the words of encouragement,pete43lost_at_sea said:doctors are human, we all make mistakes
dear pam,
your onc says 2-3 years or maybe its 23 years.they dopn't know. on csn we have so many remarkable survivors here, it could be something about csn. hang around here, we bring out the best in each other most of the time.
the difference in the prognosis is just a dash, one way we miss out on our kids lives the other we probably see the grand kids.
if you are interested read the anticancer post i put up a few days ago about alternatives. i guess i can say that the alternatives are my cup of tea so to speak, but not everyones.
from what i have read i would give my body the best chance to beat crc and survive the chemo. to that means complementary therapies. from juicing to tcm.
i am glad the earlier replies have helped cheer you up, reading a book like anticancer will give you food for thought. it just offers options to enhance many traditional therapies.
i found it pretty positive.
hugs,
pete
I actually bought the Anticancer book about a month ago and haven't had time to sit down and read it yet. I'm on vacation next week so maybe it will be worth my time to take a look at it.
Pam0 -
Thanks Kathryn...Kathryn_in_MN said:Things to ponder
Sure, if you are the "average" person, those stats just might apply to you. But there is no way to know. None of us has a crystal ball, including your oncologist. But it is a bit of a wake-up call to make sure you have things in order if you don't already. Just like I did starting into chemo, hope for the best, but prepare for the worst. Make sure you have a will and things laid out for your wishes with your kids - things we should all do anyway. None of us live forever, but most of us tend to avoid the topic of death.
I am on chemo for life. It has been almost 2 years since my dx, and I know for certain I had colon cancer for 2 years prior to my dx (was misdiagnosed for a long time). So I've been living with it for 4 years already, and don't think I'm going aywhere anytime soon. If your only metastasis is in your liver, you might shrink things enough to be a candidate for surgery or another procedure at some point. I will never be. Mine are distant lymph nodes only - chemo for life. The times I have had a short break or maintenance, I progressed quiickly. I have to stay on Iriontecan to keep it under control. So it is just like managing other chronic diseases with frequent labs, scans and chemo.
The reality is you could have something freak happen and be gone next month. Or you could keep the cancer under control for another 5 years, or you could shrink things down to a level where you do qualify for surgery or another procedure and maybe even become cancer free. No one knows. For now you take it one day at a time, and keep fighting for yourself and for your kids! Be realistic, but keep the hope!
and you're absolutely right. I can only control what I can. I have a great friend who is an Estate Planning Attorney and she did my will, living will, POA Health Directives, Beneficiary Deed, etc for me at no cost. I made some bad choices on not choosing term life insurance in the last couple of years but who knows, like you said, I might get to a point where I can have surgery and might not have to be on chemo for life. I don't know but like you said, neither does my Onc really. I can only take one day at a time, make the best choices about my treatment that I can and hope for the best. Thanks for your input; I really do appreciate hearing from others who are going thru the same thing.
My best,
Pam0 -
John,John23 said:Pam -
Winter Marie is right on target. Use the oncologist's words
as the "wake up call" some of us require to get our act together.
The average time after CRC dx, is indeed 2-3 years. Sometimes
less, sometimes more. The statistics have not changed in nearly
40 years, regardless what you hear otherwise. The time between
diagnosis and death is longer now, only due to the ability to be
diagnosed earlier. That has been proven, and well documented.
"Chemo for life" is nothing to fear, and I'm sure Phil will back that
up. He has a fantastic team that's treating cancer as a "chronic disease",
and issuing the right chemical dosages at the right times.
It's one thing to hear the facts and deal with them, and doing the
opposite, by trying to bury one's head in the sand and think everything's
going to be just fine and dandy. Cancer is a terminal disease; it's
called that for a reason. To date, there is no known "cure" for it.
Winter Marie explained well, how she faced it, and took the
time and initiative to get everything in order for all those around her.
It is important to do that. There's a rough road ahead Pam, why
wait until you're wallowing in the mud? It's so much nicer to
know that all the "little things"; all the necessary paperwork, wills,
etc., are taken care of, so you can have a clear head that's needed
to fight for your life.
The problem is when we listen to all those that tell us that there's
nothing to worry about; that cancer is not terminal and can be cured,
that we become complacent and ignore the real facts.
There's a time for "feel good" comments, and a time to wake up
to the ugly reality. You may do very well; some of us have, so
why not you? There's no reason to "lose hope" just because you
are facing facts.
There's an old saying: Keep your friends close, and your enemies closer.
Knowing the enemy and it's real strengths, gives you the ability
to fight it properly.
Get another opinion from an oncologist that is not of the same
group or organization. You are entitled to that. And always
take someone with you to any/all appointments. In the flurry
of comments, we can become lost in our own thoughts and
miss important things the doctor is explaining; having a second
set of ears is a necessity. Take notes and ask for copies of
all reports and scans, etc.
Try your best, not to allow fear to guide you. Fear is terrible, and
can cause you to make errors in judgement. It's as bad as ignoring
facts! Sure, it's scary stuff that you're faced with, we all understand
that all too well. We are all here for the same reason; we all
have cancer. Some of us have been here for a lot longer that
our prognosis.......
I think you'll do fine, Pam. But please, don't run away from the
facts? Give yourself a chance to learn more about what's going
on, and to adjust to the new life of having to deal with this
dreaded disease.
My best to you,
John
Much of the attitude you express here I agree with, but I do want to challenge this statement:
"The average time after CRC dx, is indeed 2-3 years. Sometimes
less, sometimes more. The statistics have not changed in nearly
40 years, regardless what you hear otherwise. The time between
diagnosis and death is longer now, only due to the ability to be
diagnosed earlier. That has been proven, and well documented."
The timeline you reference is for Stage IV, and that diagnoses is, by definition, late. Stage IV disease cannot be "diagnosed earlier", and any increases in life expectancy (and there have been increases) are not due to earlier diagnoses.
The other issue is the use of the word average. None of the studies use a true statistical average, rather they all refer to "median" survival rate, which is, literally, the patient right in the middle. So, if there were 11 patients, and one died two weeks after dx, one six months, one 7 months, one 12 months, one 18 months, one two years, and five lived twenty years after diagnoses.
So, there would be a median survival time of 2 years (the patient in the middle), but the individual patient would have a 50% chance of living twenty years after being diagnosed.
It is a valid way of doing statistical analysis for large population groups, but one not well understood by laymen.0 -
Buckwirth -Buckwirth said:John,
Much of the attitude you express here I agree with, but I do want to challenge this statement:
"The average time after CRC dx, is indeed 2-3 years. Sometimes
less, sometimes more. The statistics have not changed in nearly
40 years, regardless what you hear otherwise. The time between
diagnosis and death is longer now, only due to the ability to be
diagnosed earlier. That has been proven, and well documented."
The timeline you reference is for Stage IV, and that diagnoses is, by definition, late. Stage IV disease cannot be "diagnosed earlier", and any increases in life expectancy (and there have been increases) are not due to earlier diagnoses.
The other issue is the use of the word average. None of the studies use a true statistical average, rather they all refer to "median" survival rate, which is, literally, the patient right in the middle. So, if there were 11 patients, and one died two weeks after dx, one six months, one 7 months, one 12 months, one 18 months, one two years, and five lived twenty years after diagnoses.
So, there would be a median survival time of 2 years (the patient in the middle), but the individual patient would have a 50% chance of living twenty years after being diagnosed.
It is a valid way of doing statistical analysis for large population groups, but one not well understood by laymen.
You are confusing the terminology, definition, and use of the
terms "median" and "averaging", regarding the data compiled and
formulated to provide a fairly accurate rate of cancer survival.
There is some information here: http://seer.cancer.gov
that may help you decipher the use of both terms and how it
relates to the determination of an accurate prognosis.
(A "median" is usually used in reference to the age of the patient,
while the "average" is usually used regarding "incidence" and
"life expectancy".)
A prognosis is made with the assumption that the conditions
of the advancement of one's cancer will remain the same.
When we change the conditions via diet, medical treatments, etc.,
the prognosis also changes (albeit, difficult to compute; much less
understand).
(My 2006 prognosis had me turning to dust within a year or two).
"Everything is relative" (especially at the reading of one's will)
Best of health,
John0 -
Consider yourself ...John23 said:Pam -
Winter Marie is right on target. Use the oncologist's words
as the "wake up call" some of us require to get our act together.
The average time after CRC dx, is indeed 2-3 years. Sometimes
less, sometimes more. The statistics have not changed in nearly
40 years, regardless what you hear otherwise. The time between
diagnosis and death is longer now, only due to the ability to be
diagnosed earlier. That has been proven, and well documented.
"Chemo for life" is nothing to fear, and I'm sure Phil will back that
up. He has a fantastic team that's treating cancer as a "chronic disease",
and issuing the right chemical dosages at the right times.
It's one thing to hear the facts and deal with them, and doing the
opposite, by trying to bury one's head in the sand and think everything's
going to be just fine and dandy. Cancer is a terminal disease; it's
called that for a reason. To date, there is no known "cure" for it.
Winter Marie explained well, how she faced it, and took the
time and initiative to get everything in order for all those around her.
It is important to do that. There's a rough road ahead Pam, why
wait until you're wallowing in the mud? It's so much nicer to
know that all the "little things"; all the necessary paperwork, wills,
etc., are taken care of, so you can have a clear head that's needed
to fight for your life.
The problem is when we listen to all those that tell us that there's
nothing to worry about; that cancer is not terminal and can be cured,
that we become complacent and ignore the real facts.
There's a time for "feel good" comments, and a time to wake up
to the ugly reality. You may do very well; some of us have, so
why not you? There's no reason to "lose hope" just because you
are facing facts.
There's an old saying: Keep your friends close, and your enemies closer.
Knowing the enemy and it's real strengths, gives you the ability
to fight it properly.
Get another opinion from an oncologist that is not of the same
group or organization. You are entitled to that. And always
take someone with you to any/all appointments. In the flurry
of comments, we can become lost in our own thoughts and
miss important things the doctor is explaining; having a second
set of ears is a necessity. Take notes and ask for copies of
all reports and scans, etc.
Try your best, not to allow fear to guide you. Fear is terrible, and
can cause you to make errors in judgement. It's as bad as ignoring
facts! Sure, it's scary stuff that you're faced with, we all understand
that all too well. We are all here for the same reason; we all
have cancer. Some of us have been here for a lot longer that
our prognosis.......
I think you'll do fine, Pam. But please, don't run away from the
facts? Give yourself a chance to learn more about what's going
on, and to adjust to the new life of having to deal with this
dreaded disease.
My best to you,
John
John23, consider yourself a major BUZZ Kill ... your stats about survival time are NOT accurate specially since you state them with regard to CRC (colorectal) in general. Cancer is an individual disease and for your information, NOT all cancers are TERMINAL.
I suggest you take a long look at yourself and pause before you jump on here and start dashing people's hope with your inaccurate stats.
Just think that you've survived a lot longer (than 2-3 yrs) on Chinese herbs.0 -
MedianJohn23 said:Buckwirth -
You are confusing the terminology, definition, and use of the
terms "median" and "averaging", regarding the data compiled and
formulated to provide a fairly accurate rate of cancer survival.
There is some information here: http://seer.cancer.gov
that may help you decipher the use of both terms and how it
relates to the determination of an accurate prognosis.
(A "median" is usually used in reference to the age of the patient,
while the "average" is usually used regarding "incidence" and
"life expectancy".)
A prognosis is made with the assumption that the conditions
of the advancement of one's cancer will remain the same.
When we change the conditions via diet, medical treatments, etc.,
the prognosis also changes (albeit, difficult to compute; much less
understand).
(My 2006 prognosis had me turning to dust within a year or two).
"Everything is relative" (especially at the reading of one's will)
Best of health,
John
Read any of the studies John, they will say "median time to progression" or "median survival"
Median means what I posted above, and it is not restricted to age. The SEER definitions page was using age as an example to explain the term median.
EDIT: adding a comment regarding SEER
The SEER data is NOT specific to mCRC, it only drills down to the general diagnoses of CRC.
Lastly, here is a quote from a paper co-authored by Dr. Lenz of USC Norris in 2008:
"The treatment of metastatic colorectal cancer has substantially evolved during the past decade. Cetuximab and bevacizumab have proven their efficacy in the clinical setting, resulting in a doubling of survival time for mCRC patients."
Best of health to you as well,
Blake0
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