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life expectancy

cathyK
cathyK Member Posts: 93
edited March 2014 in Uterine Cancer #1
well while talking to one of the many doctors from u of m, about my abdomen pain, going to a phisical therapist as now they think it is suture pain,
I asked a simple question , just curious, what are their stats on life expectancy for stage 4B endometrial cancer,
she said , more than 2 years 10 % 5 years 0% , no one lived past 5 years at u of m,
very disapointing,
so the question about getting blood tests a little more often than every 3 months was answered
is seems that it is not important if the cancer will guaranteed take my life,
have not found any one with stage 4b endometrial cancer that have lived more than 5 years, yet,
so off to sell off all the books I was going to read eventually some time, and give away all the clothes I was going to try to fit into when I eventyally lose weight, eventually is probably not going to happen
also getting on that living will my first doctor kept shoving in front of my face to fill out.
cathy
«1

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  • cleo
    cleo Member Posts: 144
    unknown said:

    This comment has been removed by the Moderator

    Stats
    Cathy...note the above! I also looked at the web...saw the stats and it's the last time I bothered. Stats are just that and I don't intend to be one!! Talking with a surgeon recently who's wife had the same rare aggressive/invasive nusiance as I have...he researched and could find very little so where do these stats come from?? His wife is fit and well after many years. I am two years, no scan change and intend to stay that way.
    Positive is the way to go.
  • unknown said:

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  • cleo
    cleo Member Posts: 144
    unknown said:

    This comment has been removed by the Moderator

    Past issues
    Patricia...I am fortunate, loved child of great parents, comfortable life now, family/career that I wouldn't have missed so I guess that I do not have regrets and this helps to face life and colours the attitude that you bring to it. I admire your strength for facing up to past wrongs, am sure that you will take the hard step tomorrow and hope that it eases your mind and way forward. Clean slate for 2010. Cathy.....I hope that your life is blessed and positive.
  • lindaprocopio
    lindaprocopio Member Posts: 1,980
    cleo said:

    Past issues
    Patricia...I am fortunate, loved child of great parents, comfortable life now, family/career that I wouldn't have missed so I guess that I do not have regrets and this helps to face life and colours the attitude that you bring to it. I admire your strength for facing up to past wrongs, am sure that you will take the hard step tomorrow and hope that it eases your mind and way forward. Clean slate for 2010. Cathy.....I hope that your life is blessed and positive.

    How can 'adjuvant chemo' kill hidden cancer cells ??
    I don't really understand why the adjuvant chemo they give you after the debulking surgery of an INITIAL cancer diagnosis is supposed to be able to kill any hiding stray cancer cells,...and yet when you have a recurrance or distant metastisis, you are told that the second attempt at chemo has no chance of killing all of the hiding stray cancer cells any more. Why not? If chemo can kill all of these sneaky cells early on, why does that hope disapppear when you get chemo after a recurrance? Doesn't it seem logical that you could get really (REALLY!) lucky, and with the second go-round, you'd kill every one of those stray cancer cells and go into an endlesss remission (i.e. CURE !) ?

    I'm not expecting this 'cure' for myself, but I'm just saying: where is the logic in this?? Or am I missing something? Is it a matter of oncologists 'managing' patient expectations at different stages of the disease? Naturally it is at least based on their personal experiences over the years, and on statistical evidence. But logic opens up the small window of hope that it is never too late to fight and win.

    And, Patricia, this logic offers the comfort that there seems to be no 'right and wrong' to personal treatments decisions. You cannot second-guess yourself or blame yourself, regardless of what happens down the road with any disease progression. So much of the decision (for the patient AND the oncologist) seems to be based on what you need psychologically to get you through the upcoming months. I don't want to sound cynical, because I am not a cynic. I'm just saying, we all make our best decision based on the flawed information and limited options available. No right or wrong, just our best guess. Please don't be hard on yourself! I look back, and I know I would have still done all I did, treatment-wise, even though in retrospect it looks like I might have been better off without all the unsuccessful adjuvant chemo and radiation. Because I continue to travel down the same path of taking the most aggressive therapy my weakened body can handle while still maintaining an acceptable quality of life. And because I do 'fight on', the tiny flame of hope never really goes out. And so, even if your battle uses alternative strategies, 'fight on' in the way that best allows you to greet each day with joy and hope and deternination and peace.

    And don't give away those books and 'skinny clothes'!! One of the great luxuries of chemo is the hours to READ, and I am enjoying that tremendously! (Pre-cancer I only got to read for pleasure on my vacations!) And this time, due to the low-residue diet, I'm not even gaining weight on my chemo and may yet again squeeze into those slinky black skinny pants!
  • daisy366
    daisy366 Member Posts: 1,458

    How can 'adjuvant chemo' kill hidden cancer cells ??
    I don't really understand why the adjuvant chemo they give you after the debulking surgery of an INITIAL cancer diagnosis is supposed to be able to kill any hiding stray cancer cells,...and yet when you have a recurrance or distant metastisis, you are told that the second attempt at chemo has no chance of killing all of the hiding stray cancer cells any more. Why not? If chemo can kill all of these sneaky cells early on, why does that hope disapppear when you get chemo after a recurrance? Doesn't it seem logical that you could get really (REALLY!) lucky, and with the second go-round, you'd kill every one of those stray cancer cells and go into an endlesss remission (i.e. CURE !) ?

    I'm not expecting this 'cure' for myself, but I'm just saying: where is the logic in this?? Or am I missing something? Is it a matter of oncologists 'managing' patient expectations at different stages of the disease? Naturally it is at least based on their personal experiences over the years, and on statistical evidence. But logic opens up the small window of hope that it is never too late to fight and win.

    And, Patricia, this logic offers the comfort that there seems to be no 'right and wrong' to personal treatments decisions. You cannot second-guess yourself or blame yourself, regardless of what happens down the road with any disease progression. So much of the decision (for the patient AND the oncologist) seems to be based on what you need psychologically to get you through the upcoming months. I don't want to sound cynical, because I am not a cynic. I'm just saying, we all make our best decision based on the flawed information and limited options available. No right or wrong, just our best guess. Please don't be hard on yourself! I look back, and I know I would have still done all I did, treatment-wise, even though in retrospect it looks like I might have been better off without all the unsuccessful adjuvant chemo and radiation. Because I continue to travel down the same path of taking the most aggressive therapy my weakened body can handle while still maintaining an acceptable quality of life. And because I do 'fight on', the tiny flame of hope never really goes out. And so, even if your battle uses alternative strategies, 'fight on' in the way that best allows you to greet each day with joy and hope and deternination and peace.

    And don't give away those books and 'skinny clothes'!! One of the great luxuries of chemo is the hours to READ, and I am enjoying that tremendously! (Pre-cancer I only got to read for pleasure on my vacations!) And this time, due to the low-residue diet, I'm not even gaining weight on my chemo and may yet again squeeze into those slinky black skinny pants!

    Linda,
    I've read about cancer's ability to mutate when threatened. My crap shoot theory states that treatment does the best it possibly can, but there are unknown factors that our docs can't reliably predict and definitely not control.

    The "bell curve" is the norm. Our cancer is already off that bell curve. Maybe the cancer cells mutate during treatment and become immune to the assault they are given. They want to live and so they take off into other parts of the body or develop a protective shield against the chemo and radiation and take hold as soon as the assault is over.

    That darned ca125 is unpredictable and unreliable. Perhaps we get a false sense of security with those low numbers. Every since my doc told me it's only reliable when HIGH, I really have little comfort in the low numbers I've had and fear the high numbers. I'm also in the process of asking for additional markers - the HE3, HK6, and C-RP - plus the ca125. I hope this will give more info.

    I think that harnessing the mind to help the body is an added thing we CAN do to compliment our medical treatment. Let me know if you want any more info about this.

    Blessings and peace to you. Love, Mary Ann
  • daisy366
    daisy366 Member Posts: 1,458
    daisy366 said:

    Linda,
    I've read about cancer's ability to mutate when threatened. My crap shoot theory states that treatment does the best it possibly can, but there are unknown factors that our docs can't reliably predict and definitely not control.

    The "bell curve" is the norm. Our cancer is already off that bell curve. Maybe the cancer cells mutate during treatment and become immune to the assault they are given. They want to live and so they take off into other parts of the body or develop a protective shield against the chemo and radiation and take hold as soon as the assault is over.

    That darned ca125 is unpredictable and unreliable. Perhaps we get a false sense of security with those low numbers. Every since my doc told me it's only reliable when HIGH, I really have little comfort in the low numbers I've had and fear the high numbers. I'm also in the process of asking for additional markers - the HE3, HK6, and C-RP - plus the ca125. I hope this will give more info.

    I think that harnessing the mind to help the body is an added thing we CAN do to compliment our medical treatment. Let me know if you want any more info about this.

    Blessings and peace to you. Love, Mary Ann

    Patricia,
    I applaud your decision to be heard and make your perpetrator accountable. This will not only help you but hopefully will benefit other women in the future.

    You are brave and strong. Perhaps cancer helps us in this - we all need to be to fight on.

    May the FORCE be with you, woman. You are a warrior.

    Blessings and courage and strength to you. Mary Ann
  • daisy366
    daisy366 Member Posts: 1,458
    daisy366 said:

    Patricia,
    I applaud your decision to be heard and make your perpetrator accountable. This will not only help you but hopefully will benefit other women in the future.

    You are brave and strong. Perhaps cancer helps us in this - we all need to be to fight on.

    May the FORCE be with you, woman. You are a warrior.

    Blessings and courage and strength to you. Mary Ann

    Cathy,
    Wow, what a hard thing to hear. And how brave you are for even asking this question!!!!! I think preparing for the inevitable is a good thing and I am doing this right along with you.

    But...I think we all need HOPE and please don't lose yours. Harness your imagination and visualize your immune system strong and eliminating the cancer invaders.

    Blessings and peace to you. Mary Ann
  • california_artist
    california_artist Member Posts: 816

    How can 'adjuvant chemo' kill hidden cancer cells ??
    I don't really understand why the adjuvant chemo they give you after the debulking surgery of an INITIAL cancer diagnosis is supposed to be able to kill any hiding stray cancer cells,...and yet when you have a recurrance or distant metastisis, you are told that the second attempt at chemo has no chance of killing all of the hiding stray cancer cells any more. Why not? If chemo can kill all of these sneaky cells early on, why does that hope disapppear when you get chemo after a recurrance? Doesn't it seem logical that you could get really (REALLY!) lucky, and with the second go-round, you'd kill every one of those stray cancer cells and go into an endlesss remission (i.e. CURE !) ?

    I'm not expecting this 'cure' for myself, but I'm just saying: where is the logic in this?? Or am I missing something? Is it a matter of oncologists 'managing' patient expectations at different stages of the disease? Naturally it is at least based on their personal experiences over the years, and on statistical evidence. But logic opens up the small window of hope that it is never too late to fight and win.

    And, Patricia, this logic offers the comfort that there seems to be no 'right and wrong' to personal treatments decisions. You cannot second-guess yourself or blame yourself, regardless of what happens down the road with any disease progression. So much of the decision (for the patient AND the oncologist) seems to be based on what you need psychologically to get you through the upcoming months. I don't want to sound cynical, because I am not a cynic. I'm just saying, we all make our best decision based on the flawed information and limited options available. No right or wrong, just our best guess. Please don't be hard on yourself! I look back, and I know I would have still done all I did, treatment-wise, even though in retrospect it looks like I might have been better off without all the unsuccessful adjuvant chemo and radiation. Because I continue to travel down the same path of taking the most aggressive therapy my weakened body can handle while still maintaining an acceptable quality of life. And because I do 'fight on', the tiny flame of hope never really goes out. And so, even if your battle uses alternative strategies, 'fight on' in the way that best allows you to greet each day with joy and hope and deternination and peace.

    And don't give away those books and 'skinny clothes'!! One of the great luxuries of chemo is the hours to READ, and I am enjoying that tremendously! (Pre-cancer I only got to read for pleasure on my vacations!) And this time, due to the low-residue diet, I'm not even gaining weight on my chemo and may yet again squeeze into those slinky black skinny pants!

    Linda, the simple answer to the question
    is, it can't kill them all, not even the first time. Taxol, according to something I read yesterday is effective for ER-/PR- "only modestly to the odds of survival." UPSC for the most part is ER/PR-. Endometrial-adenocarcinoma is usually positive for both those markers.

    I am putting this url out there without having been there. This way I can't make a filtering decision on your behalf. It may be anything. aduvantonline.com It is said to be a risk assessment and prognostic tool used by many oncologist to determine best worst case scenario. The article also refers to Adriamycin as having been nicknamed "the red death". I don't know why, but it doesn't sound too good.

    The reason I didn't initially treat my cancer with chemo was wholly an intuitive reason. I went searching for the reason after the decision.

    In the readings one thing I came across on occasion was that cancer stepped up its production and spread when it "felt" under-attack. I didn't know this in the beginning. so, how I interpret that is that, the more you fight your cancer with chemical warfare, the more your cancer cells step up their abilities to hide or cloak, reproduce and the faster they spread to new areas.

    They also change what they are. Your initial cancer, evolves into something else. Just as bacteria evolve in response to antibiotics, your cancer cells evolve in response to both chemical and radiation attacks. It's the reason why when it returns, your cancer cells should be reevaluated as to their response to any treatment. Unfortunately, most of the women who get treatment never even have gotten the initial evaluation of their cancer's response to the choice of treatment. Truth is that often the likelihood the usual chemo will work is minimal, something, but minimal. If, no, as more women become aware that chemo may not work as well as their doctors are saying, and that it may in fact cause their cancer to grow faster, metastasise faster and become resistant to treatment, there is reason to be hopeful they will insist on having assays, and offered alternative and complementary therapy.

    If women refused chemo without their doctors taking these basic steps, it would be the beginning of doctors being forced to search harder for answers. Did any of us actually have a truthful informed consent???? Did any of your doctors actually tell you before chemo that the likelihood of a cure or even long term remission was minimal. Didn't they all, like mine say they didn't know? didn't have any statistics. That's one of the things my doctor told me that made me forgo treatment. If he didn't know if his treatment was effective or not, first how concerned was he really with my survival and second what kind of a man was he if he didn't care whether what he was doing was working or not, and he continued to "treat women, knowingly causing them to suffer hugely.He told me if I didn't get chemo I would be dead in about a year and a half. I went to the first chemo talk, was scheduled for port insertion, was informed about a bunch of things about what to do but no one ever said what the side effects or long term effects would be. I know I was not informed. The doctor's office called me for months afterward trying to get me to come back in for treatment. Refused to give me either a PET or CT. Never mind. Just remembering.

    The world is about motivation. Refuse treatment if you have been given no reasonable base for accepting it, take away a doctor's income-they get reimbursed from the drug companies for the drugs they give you, sometimes there are extra bonuses if they prescribe more of a particular drug in a particular period--take away their income, take away their motivation, change their behavior.

    Without incentive to change, there is little change. Most of us are not giving them this incentive. These drugs have been around for decades, they don't work any better now than they used to. They do tend to work better with nutritionally based adjuvant therapy. There are foods that make radiation less toxic and more useful. the same is true of chemo. And there is a lot to be said for those things that make our minds and bodies feel less stressed. Hopelessness is known shortener of life. Fight.

    The status quo-status sucks.

    Maybe a slew of women with signs that say - not sure what yet, but I may just use my artistic talents to make myself a sign. Take stand. Make a sign. Be all you can be--become a real pain in the proverbial butt.

    NEVERTHELESS--NOBODY GIVE UP JUST YET.
    WOULD YOU PLEASE, PLEASE, PLEASE TRY USING SOME OF THE OTHER WAYS TO FIGHT YOUR CANCER TIL YOU CAN FIGURE OUT SOMETHING ELSE.

    I do think though if your doctors are handing out end of life signs that you qualify for all experimental treatments, that's all the stuff that's in trial right now.
    My mother, whom I've recently discussed this situation with, is mad as hell. Told me I'd really upset her, which I feel really badly about, but she suggested we contact our congressmen and governors regarding the cancer situation and how we are being used without being informed of our prospects.

    She may be 90 or wait almost 90, but she's very, very savvy. I'm thinking about contacting my congress woman and here in Michigan we have a woman governor, which my mother also mentioned.


    Cathy, I beg you not to give up. The world if full of people who were told they were going to be dead soon. Don't believe everything you hear. Make a plan. A plan to fight. Not a plan to give away all your stuff,, what kind of a plan is that??? I can certainly understand if you're depressed, especially more so since there was hope and then there was non. I understand that is particularly common when you've been given reason to hopeful, you've done all you should and then hope is taken. You can ride your horse over here. Don't know where he'd stay, but you could come here. I could make you tea. We could do puzzles and eat weird things and laugh at old comedies.

    Claudia

    Matter of fact, if everyone showed up here it would be swell. I have notebooks and notebooks and files upon files of ways to get out of this not quite so dead as they tend to predict. I don't have a sofa, but I could get something to sit on, I know with you guys here, things would not be dull. WE COULD MAKE A PLAN. Or we could go where it's warmer. Maybe camp out for a bit. I'm going to start another crop of wheatgrass. NUmmy.
  • daisy366
    daisy366 Member Posts: 1,458

    Linda, the simple answer to the question
    is, it can't kill them all, not even the first time. Taxol, according to something I read yesterday is effective for ER-/PR- "only modestly to the odds of survival." UPSC for the most part is ER/PR-. Endometrial-adenocarcinoma is usually positive for both those markers.

    I am putting this url out there without having been there. This way I can't make a filtering decision on your behalf. It may be anything. aduvantonline.com It is said to be a risk assessment and prognostic tool used by many oncologist to determine best worst case scenario. The article also refers to Adriamycin as having been nicknamed "the red death". I don't know why, but it doesn't sound too good.

    The reason I didn't initially treat my cancer with chemo was wholly an intuitive reason. I went searching for the reason after the decision.

    In the readings one thing I came across on occasion was that cancer stepped up its production and spread when it "felt" under-attack. I didn't know this in the beginning. so, how I interpret that is that, the more you fight your cancer with chemical warfare, the more your cancer cells step up their abilities to hide or cloak, reproduce and the faster they spread to new areas.

    They also change what they are. Your initial cancer, evolves into something else. Just as bacteria evolve in response to antibiotics, your cancer cells evolve in response to both chemical and radiation attacks. It's the reason why when it returns, your cancer cells should be reevaluated as to their response to any treatment. Unfortunately, most of the women who get treatment never even have gotten the initial evaluation of their cancer's response to the choice of treatment. Truth is that often the likelihood the usual chemo will work is minimal, something, but minimal. If, no, as more women become aware that chemo may not work as well as their doctors are saying, and that it may in fact cause their cancer to grow faster, metastasise faster and become resistant to treatment, there is reason to be hopeful they will insist on having assays, and offered alternative and complementary therapy.

    If women refused chemo without their doctors taking these basic steps, it would be the beginning of doctors being forced to search harder for answers. Did any of us actually have a truthful informed consent???? Did any of your doctors actually tell you before chemo that the likelihood of a cure or even long term remission was minimal. Didn't they all, like mine say they didn't know? didn't have any statistics. That's one of the things my doctor told me that made me forgo treatment. If he didn't know if his treatment was effective or not, first how concerned was he really with my survival and second what kind of a man was he if he didn't care whether what he was doing was working or not, and he continued to "treat women, knowingly causing them to suffer hugely.He told me if I didn't get chemo I would be dead in about a year and a half. I went to the first chemo talk, was scheduled for port insertion, was informed about a bunch of things about what to do but no one ever said what the side effects or long term effects would be. I know I was not informed. The doctor's office called me for months afterward trying to get me to come back in for treatment. Refused to give me either a PET or CT. Never mind. Just remembering.

    The world is about motivation. Refuse treatment if you have been given no reasonable base for accepting it, take away a doctor's income-they get reimbursed from the drug companies for the drugs they give you, sometimes there are extra bonuses if they prescribe more of a particular drug in a particular period--take away their income, take away their motivation, change their behavior.

    Without incentive to change, there is little change. Most of us are not giving them this incentive. These drugs have been around for decades, they don't work any better now than they used to. They do tend to work better with nutritionally based adjuvant therapy. There are foods that make radiation less toxic and more useful. the same is true of chemo. And there is a lot to be said for those things that make our minds and bodies feel less stressed. Hopelessness is known shortener of life. Fight.

    The status quo-status sucks.

    Maybe a slew of women with signs that say - not sure what yet, but I may just use my artistic talents to make myself a sign. Take stand. Make a sign. Be all you can be--become a real pain in the proverbial butt.

    NEVERTHELESS--NOBODY GIVE UP JUST YET.
    WOULD YOU PLEASE, PLEASE, PLEASE TRY USING SOME OF THE OTHER WAYS TO FIGHT YOUR CANCER TIL YOU CAN FIGURE OUT SOMETHING ELSE.

    I do think though if your doctors are handing out end of life signs that you qualify for all experimental treatments, that's all the stuff that's in trial right now.
    My mother, whom I've recently discussed this situation with, is mad as hell. Told me I'd really upset her, which I feel really badly about, but she suggested we contact our congressmen and governors regarding the cancer situation and how we are being used without being informed of our prospects.

    She may be 90 or wait almost 90, but she's very, very savvy. I'm thinking about contacting my congress woman and here in Michigan we have a woman governor, which my mother also mentioned.


    Cathy, I beg you not to give up. The world if full of people who were told they were going to be dead soon. Don't believe everything you hear. Make a plan. A plan to fight. Not a plan to give away all your stuff,, what kind of a plan is that??? I can certainly understand if you're depressed, especially more so since there was hope and then there was non. I understand that is particularly common when you've been given reason to hopeful, you've done all you should and then hope is taken. You can ride your horse over here. Don't know where he'd stay, but you could come here. I could make you tea. We could do puzzles and eat weird things and laugh at old comedies.

    Claudia

    Matter of fact, if everyone showed up here it would be swell. I have notebooks and notebooks and files upon files of ways to get out of this not quite so dead as they tend to predict. I don't have a sofa, but I could get something to sit on, I know with you guys here, things would not be dull. WE COULD MAKE A PLAN. Or we could go where it's warmer. Maybe camp out for a bit. I'm going to start another crop of wheatgrass. NUmmy.

    Claudia
    I don't think all docs are motivated by greed. There are protocols set up - e.g. the NCCN guidelines - which most docs utilize.

    I think alternative therapies should be used alongside western medicine. Or perhaps given a chance to work before western protocols are used.

    Do you know if there's any research that compares results of alternative versus western medicine for treatment of aggressive cancers?
  • Ro10
    Ro10 Member Posts: 1,561
    Cathy sorry to hear your news
    I know how hard it would be to hear that news. But as others have said you are not a statistic. I hope you will keep all those books and those clothes and continue to fight. Show those doctors that you are not a statistic. When I was diagnosed with Stage III-C UPSC last January, I read a lot on the internet about UPSC. Everything I read was so dismal, that I quit reading. Then my daughter found this site. It has so much hopeful and encouraging information from ladies who are going through or completing treatment.
    I know you have to be depressed right now, which is totally understandable. Hang in there and take one day at a time. None of us know what our outcomes will be. Determine what is important to you and enjoy those things. I hope your physical therapy is helping your abdominal pain. In peace and caring.
  • Songflower
    Songflower Member Posts: 608

    How can 'adjuvant chemo' kill hidden cancer cells ??
    I don't really understand why the adjuvant chemo they give you after the debulking surgery of an INITIAL cancer diagnosis is supposed to be able to kill any hiding stray cancer cells,...and yet when you have a recurrance or distant metastisis, you are told that the second attempt at chemo has no chance of killing all of the hiding stray cancer cells any more. Why not? If chemo can kill all of these sneaky cells early on, why does that hope disapppear when you get chemo after a recurrance? Doesn't it seem logical that you could get really (REALLY!) lucky, and with the second go-round, you'd kill every one of those stray cancer cells and go into an endlesss remission (i.e. CURE !) ?

    I'm not expecting this 'cure' for myself, but I'm just saying: where is the logic in this?? Or am I missing something? Is it a matter of oncologists 'managing' patient expectations at different stages of the disease? Naturally it is at least based on their personal experiences over the years, and on statistical evidence. But logic opens up the small window of hope that it is never too late to fight and win.

    And, Patricia, this logic offers the comfort that there seems to be no 'right and wrong' to personal treatments decisions. You cannot second-guess yourself or blame yourself, regardless of what happens down the road with any disease progression. So much of the decision (for the patient AND the oncologist) seems to be based on what you need psychologically to get you through the upcoming months. I don't want to sound cynical, because I am not a cynic. I'm just saying, we all make our best decision based on the flawed information and limited options available. No right or wrong, just our best guess. Please don't be hard on yourself! I look back, and I know I would have still done all I did, treatment-wise, even though in retrospect it looks like I might have been better off without all the unsuccessful adjuvant chemo and radiation. Because I continue to travel down the same path of taking the most aggressive therapy my weakened body can handle while still maintaining an acceptable quality of life. And because I do 'fight on', the tiny flame of hope never really goes out. And so, even if your battle uses alternative strategies, 'fight on' in the way that best allows you to greet each day with joy and hope and deternination and peace.

    And don't give away those books and 'skinny clothes'!! One of the great luxuries of chemo is the hours to READ, and I am enjoying that tremendously! (Pre-cancer I only got to read for pleasure on my vacations!) And this time, due to the low-residue diet, I'm not even gaining weight on my chemo and may yet again squeeze into those slinky black skinny pants!

    I wonder about the chemo too
    I wonder about the same thing Linda. I also wonder why everyone gets 6 chemo treatments regardless of stages. It would seem to me that a stage 1a would need less chemo then a 3a? If it works the first time around, why wouldn't it work the second time around? I know I've heard serous goes dormant. I am not sure what that means and I think we need more research to figure it out. If it was dormant during first round of chemo then would it possibly not be dormant during another round for recurrance? Why wouldn't the chemo work then? I sometimes feel we are giving up too early.

    I've had breast cancer and the chemo did work for this. So I know progress has been made. We need more work on EC cancers.
  • Songflower
    Songflower Member Posts: 608
    Prognosis
    Dear Kathy,

    Mary Ann turned me on to guided imagery,I used Belleruth when I had breast and am using her now. Mary Ann likes Simonton and I am trying him now. He has some amazing stories of people who beat the odds. They gave my father two years for colon cancer and he lived over five. We don't know how much time we all have with this cancer but we have choices to hit it with healthy behaviors. Meditation has been found to help. Give it a try. While I was in chemo I saw by a a woman who had lung cancer (beat it) and now was doing well with ovarian cancer after they had removed a tumor the size of a dinner plate.

    The statistics are just statistics. I love to hear stories of stage IV patients who have exceeded everyone's expectations.

    Diane
  • Outlaw_Josie
    Outlaw_Josie Member Posts: 41

    Prognosis
    Dear Kathy,

    Mary Ann turned me on to guided imagery,I used Belleruth when I had breast and am using her now. Mary Ann likes Simonton and I am trying him now. He has some amazing stories of people who beat the odds. They gave my father two years for colon cancer and he lived over five. We don't know how much time we all have with this cancer but we have choices to hit it with healthy behaviors. Meditation has been found to help. Give it a try. While I was in chemo I saw by a a woman who had lung cancer (beat it) and now was doing well with ovarian cancer after they had removed a tumor the size of a dinner plate.

    The statistics are just statistics. I love to hear stories of stage IV patients who have exceeded everyone's expectations.

    Diane

    Statistics
    "The statistics are just statistics. I love to hear stories of stage IV patients who have exceeded everyone's expectations."

    Exactly.

    My onc/doc and I are in agreement about the crap shoot theory. He says one day they will find out why some Stage 4's live and some Stage 1's die and that will be the beginning of a real cure for this festering toad that tries to take us over. We'll all be able to stand up and say "take that you bloody beast."

    In the meanwhile, what we can do is live life with the most passion we can give it while we can still give it. Personally, I'm going out kicking and screaming...no "quietly into that good night" for me. Death will have to fight for my body.
  • livenow09
    livenow09 Member Posts: 60

    Statistics
    "The statistics are just statistics. I love to hear stories of stage IV patients who have exceeded everyone's expectations."

    Exactly.

    My onc/doc and I are in agreement about the crap shoot theory. He says one day they will find out why some Stage 4's live and some Stage 1's die and that will be the beginning of a real cure for this festering toad that tries to take us over. We'll all be able to stand up and say "take that you bloody beast."

    In the meanwhile, what we can do is live life with the most passion we can give it while we can still give it. Personally, I'm going out kicking and screaming...no "quietly into that good night" for me. Death will have to fight for my body.

    Well Said Out Law
    Aloha All,
    Stats are an average...some live, some don't; Again the recurrence rate overall is 43% which means 57% don't recur; no one knows; the cancer mutates that why when it comes back, it's harder to knock back; UPSC "seeds" itself MICROSCOPICALLY in all parts of the body; the chemo has the best chance of SYSTEMICALLY killing off all the cells that have "seeded" elsewhere; my onco encouraged me to have 2 extra doses (total 8) of Carbo/Taxol because he had a "suspicion, a gut feeling there are still some bugs in there" because the CA 125 kept dropping in a straight line instead of leveling out during the last 2 cycles (5&6); it is a crap shoot; so is life...it's the human condition;
    please remember "healing" is more an ART than a science; there are so many variables to our situation, so many loose threads still untied;
    So in the meantime...live without regret...we all make the best decision we can make at the time...let go of the woulda, coulda, shoulda...it's just a waste of energy; do you grief work; for indeed there is much to grieve...BUT WE AIN'T DEAD YET!!!!!!
    learn to dance in the rain; make lemonade out of lemons; paint, love, eat laugh; this is hard to hear when emotionally you feel down...but it's true none the less...
    love you all
    Marie
    ps we ALL have to die eventually; we have the "advantage" of knowing how but no one knows when....so make use of your time
  • Rewriter
    Rewriter Member Posts: 493
    livenow09 said:

    Well Said Out Law
    Aloha All,
    Stats are an average...some live, some don't; Again the recurrence rate overall is 43% which means 57% don't recur; no one knows; the cancer mutates that why when it comes back, it's harder to knock back; UPSC "seeds" itself MICROSCOPICALLY in all parts of the body; the chemo has the best chance of SYSTEMICALLY killing off all the cells that have "seeded" elsewhere; my onco encouraged me to have 2 extra doses (total 8) of Carbo/Taxol because he had a "suspicion, a gut feeling there are still some bugs in there" because the CA 125 kept dropping in a straight line instead of leveling out during the last 2 cycles (5&6); it is a crap shoot; so is life...it's the human condition;
    please remember "healing" is more an ART than a science; there are so many variables to our situation, so many loose threads still untied;
    So in the meantime...live without regret...we all make the best decision we can make at the time...let go of the woulda, coulda, shoulda...it's just a waste of energy; do you grief work; for indeed there is much to grieve...BUT WE AIN'T DEAD YET!!!!!!
    learn to dance in the rain; make lemonade out of lemons; paint, love, eat laugh; this is hard to hear when emotionally you feel down...but it's true none the less...
    love you all
    Marie
    ps we ALL have to die eventually; we have the "advantage" of knowing how but no one knows when....so make use of your time

    Do I really know "HOW" I am going to die
    Marie, you say that we have the advantage of knowing how we are going to die. Personally, I plan on living to my 90s and dying in my sleep. I think that's a possibility for many of us, no matter what the doctors say.
  • susie1143
    susie1143 Member Posts: 105
    Rewriter said:

    Do I really know "HOW" I am going to die
    Marie, you say that we have the advantage of knowing how we are going to die. Personally, I plan on living to my 90s and dying in my sleep. I think that's a possibility for many of us, no matter what the doctors say.

    Lfe Expectancy
    I agree that I plan on living into my 90's. I'm soon to be a grandmother and plan on being there for my great grandchildren. I always told my aunt and my mom during their cancer struggle to never, never, never give up.
  • cathyK
    cathyK Member Posts: 93

    Statistics
    "The statistics are just statistics. I love to hear stories of stage IV patients who have exceeded everyone's expectations."

    Exactly.

    My onc/doc and I are in agreement about the crap shoot theory. He says one day they will find out why some Stage 4's live and some Stage 1's die and that will be the beginning of a real cure for this festering toad that tries to take us over. We'll all be able to stand up and say "take that you bloody beast."

    In the meanwhile, what we can do is live life with the most passion we can give it while we can still give it. Personally, I'm going out kicking and screaming...no "quietly into that good night" for me. Death will have to fight for my body.

    statistics
    hello Josie,
    well you say you love to hear stories of stage IV patients who have exceeded everyones expectations,
    I have found 3 so far, who have made it to 1 year and 2 more who died at 2 years where are you finding these stories?
    I have ben through the ringer going to an awful oncologist for most of my treatment, and then one for one day and then one for after care which gets me mutiple people responding to my phone call questions, never my "in office oncologist" and 1 of them told me the stats at U of M that is why I now am disapointed ,

    cathy
  • california_artist
    california_artist Member Posts: 816
    daisy366 said:

    Claudia
    I don't think all docs are motivated by greed. There are protocols set up - e.g. the NCCN guidelines - which most docs utilize.

    I think alternative therapies should be used alongside western medicine. Or perhaps given a chance to work before western protocols are used.

    Do you know if there's any research that compares results of alternative versus western medicine for treatment of aggressive cancers?

    Mary Ann
    Hey, in response to your post on Jan 1, I absolutley believe western and alternative approaches should be used together, and agree they are truly complementary therapies.

    It is imperitive that there be accurate testing of tissue done prior to all treatment. If more doctors were well versed on the advantage of using the two together, there would be advice given to take turmeric and countless other inhancing therapies, and how much, with what other foods etc, as even the government has done studies showing that for those taking taxol as a chemo drug, or having radiation therapy, turmeric improves the outcome in both situations, by a large margin.

    I am not anti chemo, I'm simply more cautious and questioing of the treatment, vs the benefit vs the quality of life. I really think much more information should be given to most patients than they're getting now on the all their choices.

    Why is it women who have stratight enometrial cancer and not the higher risk ones are, for the most, part not being tested for hormone receptivity. Most of those tumors are hormone receptive and would respond to hormnal treatment with or without chemo. When I asked my surgeon, prior to surgery to test for hormone receptors, he refused, saying he only did that for breast cancer patients. And yet, when I finally was able to get my tissue tested, one year after the surgery, the adenocarcinoma part of my tumor was 60% ER and 40% PR positive. I would have benefitted that first year from hormone therapy. Women who still have the option of having children ARE offered hormone therapy in some cases, in lieu of chemo and radiation, probably because they might be more likely to ask more questions and even to refuse removal of the uterus. In those cases, wonder if they are accompanied by husbands who want to become fathers and are in their with their wives/girlfriends etc, asking for more options. In that case the doctor has to offer something other than chemo, that something is observation and hormone therapy.

    Basically, what I'm saying is most people need motivation to change and we're just not providing that motivation. I have considered writing to the administrative board at the hospital where I was treated and proposing that they look into other options. Because the treatment options I received were inflexible, they lost me as a patient. If they had offered complementary therapy of a sort I would have gone it and participated in that. And they would have also benfefitted financially, which they are obligated to do as all corporations are similarly obligated.

    Wouldn't it be a better world if in addition to the therapy that's now standard, wouldn't it just be loverly if we were offered, a true cancer fighting diet guideline, instruction in guided imagery, information of how the act of exercising ramps up the immune system, how massage therapy also helps to stimulate the immune system, and there's deep breathing. Would n't it be a better world if women with cancer were embraced, and treated as a valuable worth saving community. What if we were offered somewhere to gather and be proactive, to encourage one another. There is here and here is wonderful, but a friendly face and conversation on things to do, that would be stellar. don't you think you would feel more hopeful being in a group of people like yourselves all gung ho to assist yourself in you the fight of your lives.

    Did you know that the great artists were almost all members of artistic groups who encouraged and challenged each other to do better, were inspired by other's success and new visions. Were no doubt admired by their peers?sp. Degas used to paint on Mary Cassatts canvases, personally, that would have ticked me off, but it worked for them.

    I will be writing that letter. Might even volunteer to provide suggestions on how it could operate. Would get me out of the house and interacting with others, which is where I truly shine and blosssom. The hippie in me will, apparently, never die. People's Park!

    Wouldn't it just be a dream come true. Josie, methinks I may benefit from your help on this one.

    Your friend in the struggle to be an old lady, really, really old, like my mom, who survived breast cancer (no treatment either) and she's ninety now. Fifteen year survivor, that's encouraging,

    Claudia

    I need coffee. Waiting for the internet to go, just thought I'd chime in here. I do think you all are doing a fantastic job of loving and offering support and advice to one another. I did look for help for Patricia, but couldn't find any info that might help. Were it not for my family, I would most likely be on the street now myself. I find my anxiety is such that I am unable to hold gainful employment. Doesn't seem to stop me from having a million thoughts.

    My greatest love and admiration to all of you, you are each a treasure and a joy, even in these trying times.
  • california_artist
    california_artist Member Posts: 816
    cathyK said:

    statistics
    hello Josie,
    well you say you love to hear stories of stage IV patients who have exceeded everyones expectations,
    I have found 3 so far, who have made it to 1 year and 2 more who died at 2 years where are you finding these stories?
    I have ben through the ringer going to an awful oncologist for most of my treatment, and then one for one day and then one for after care which gets me mutiple people responding to my phone call questions, never my "in office oncologist" and 1 of them told me the stats at U of M that is why I now am disapointed ,

    cathy

    Stats
    Cathy, you are not the statistical average.
    How are you feeling health wise. I know you have cancer, but how do you feel? Are you in any pain now? Do you see changes in symptoms? What is your day like? Are you resting? Sleeping how many hours at night? Headaches? What's going on?? Friends close by? Things to do that you enjoy. Or is it all too overwhelming??? Is there no light at the end of the tunnel, is that what's wrong?

    Hope is something you just can't find?

    What if you have faith and work on the adage, God helps those who help themselves, what are you doing to help yourself in order that your God can help you????

    Show your faith,
    do something,
    today,
    now,
    He's waiting.
  • livealot
    livealot Member Posts: 19
    livenow09 said:

    Well Said Out Law
    Aloha All,
    Stats are an average...some live, some don't; Again the recurrence rate overall is 43% which means 57% don't recur; no one knows; the cancer mutates that why when it comes back, it's harder to knock back; UPSC "seeds" itself MICROSCOPICALLY in all parts of the body; the chemo has the best chance of SYSTEMICALLY killing off all the cells that have "seeded" elsewhere; my onco encouraged me to have 2 extra doses (total 8) of Carbo/Taxol because he had a "suspicion, a gut feeling there are still some bugs in there" because the CA 125 kept dropping in a straight line instead of leveling out during the last 2 cycles (5&6); it is a crap shoot; so is life...it's the human condition;
    please remember "healing" is more an ART than a science; there are so many variables to our situation, so many loose threads still untied;
    So in the meantime...live without regret...we all make the best decision we can make at the time...let go of the woulda, coulda, shoulda...it's just a waste of energy; do you grief work; for indeed there is much to grieve...BUT WE AIN'T DEAD YET!!!!!!
    learn to dance in the rain; make lemonade out of lemons; paint, love, eat laugh; this is hard to hear when emotionally you feel down...but it's true none the less...
    love you all
    Marie
    ps we ALL have to die eventually; we have the "advantage" of knowing how but no one knows when....so make use of your time

    I'm new to this site as of today...
    I've finally figured out what UPSC was after reading several entries. That's what I have too- stage 4. When i was first diagnosed in April, I read some stuff on the internet and then decided not to- since it all seemed pretty bad. good decision on my part I think. I have a wonderful surgeon (gyn/onc) and a wonderful oncologist, not to mention an amazing husband, 3 great kids 22,20,18, incredible siblings and incredibly supportive friends. I had my opt. debulking surgery April 29, 2009 and finished chmo (carboplatnium/taxol) treatment sept. 14, 2009. I know why there are "only" 6- the 7th would have killed me! after transfusions for lack of RBCs and prednisone for lack of platelets, I am feeling great and am very excited about life. My onc. stresses and I believe that we are ALL INDIVIDUALS. stats don't really matter. we have a policy of don't ask, don't tell. I like that because I can truly LIVE my life. My first art class (I've always wanted to take art) is on Sat. and I just can't wait! I'm having a great time with my family, cooking healthily and truly loving life. None of us really knows how or when we are going to die. I really hope I don't die soon, but I will have no regrets when it happens.

    I really would love to hear some good survivor stories or others who have UPSC and are doing well.

    Good wishes to all... elizabeth
  • Kris Ann
    Kris Ann Member Posts: 26
    livealot said:

    I'm new to this site as of today...
    I've finally figured out what UPSC was after reading several entries. That's what I have too- stage 4. When i was first diagnosed in April, I read some stuff on the internet and then decided not to- since it all seemed pretty bad. good decision on my part I think. I have a wonderful surgeon (gyn/onc) and a wonderful oncologist, not to mention an amazing husband, 3 great kids 22,20,18, incredible siblings and incredibly supportive friends. I had my opt. debulking surgery April 29, 2009 and finished chmo (carboplatnium/taxol) treatment sept. 14, 2009. I know why there are "only" 6- the 7th would have killed me! after transfusions for lack of RBCs and prednisone for lack of platelets, I am feeling great and am very excited about life. My onc. stresses and I believe that we are ALL INDIVIDUALS. stats don't really matter. we have a policy of don't ask, don't tell. I like that because I can truly LIVE my life. My first art class (I've always wanted to take art) is on Sat. and I just can't wait! I'm having a great time with my family, cooking healthily and truly loving life. None of us really knows how or when we are going to die. I really hope I don't die soon, but I will have no regrets when it happens.

    I really would love to hear some good survivor stories or others who have UPSC and are doing well.

    Good wishes to all... elizabeth

    Hope for stage 4
    Hi Elizabeth. My mom has stage 4 and is fine. She was diagnosed March 8th 2008. And yes stage 4 uspc/clear cell. She had that same treatment as the others chemo wise.. actually had 4 rounds of chemo. had 33 whole abdominal radiation treatments and 4 brachies. I just took her for her check up the week of thanksgiving and her dr. said she was doing great.. She is finally putting on weight again etc.. So there is def. hope for sure!

    Kristin
  • culka
    culka Member Posts: 149

    Stats
    Cathy, you are not the statistical average.
    How are you feeling health wise. I know you have cancer, but how do you feel? Are you in any pain now? Do you see changes in symptoms? What is your day like? Are you resting? Sleeping how many hours at night? Headaches? What's going on?? Friends close by? Things to do that you enjoy. Or is it all too overwhelming??? Is there no light at the end of the tunnel, is that what's wrong?

    Hope is something you just can't find?

    What if you have faith and work on the adage, God helps those who help themselves, what are you doing to help yourself in order that your God can help you????

    Show your faith,
    do something,
    today,
    now,
    He's waiting.

    Cathy
    You can find these stage 4 people on Gerson therapy, in Anticancer book, on web page campaign for truth in medicine (or something like that), just start looking. Claudia wrote it nicely to you. I would be asking for your address to shake you up. You have to believe.

    Yesterday, when I was reading that anticancer book I almost stopped breathing. Last year I was doing everything by book without book. And this week one lady told me that I look like 35. She cut 10 years off.

    If you have questions ask us. At least Claudia will find answer for you. But do something. It is tons of advices on this web, just follow.

    I am sending you virtual hug, can you feel it?
  • janmac35
    janmac35 Member Posts: 6
    I have survived for 4 years and feel pretty good.
    Do not give up! Prepare but do not give up hope. I have survived 4 years and still enjoy life and expect to continue to live 1 year at a time. However, I am prepared with all the tedious papers, a living trust, etc. I, too, gave away all my tight clothes many 20 years old, figuring I deserve new ones if I ever get back to size 8 or 10. I am giving away collectibles, family treasures and as much as possible to those I know want them and will enjoy them. I get the joy of giving and know they are going to those I want to have them. Am I planning on dying this year? Definitely not! But I want to have some control over the rest of my life. I walk, take part in many activities that do not revolve around cancer, enjoy several circles of friends and worship and praise God every day. No one knows what tomorrow will bring, so we must all live our lives as if tomorrow may be the last or the first of many days we will be able to celebrate.
  • cleo
    cleo Member Posts: 144
    janmac35 said:

    I have survived for 4 years and feel pretty good.
    Do not give up! Prepare but do not give up hope. I have survived 4 years and still enjoy life and expect to continue to live 1 year at a time. However, I am prepared with all the tedious papers, a living trust, etc. I, too, gave away all my tight clothes many 20 years old, figuring I deserve new ones if I ever get back to size 8 or 10. I am giving away collectibles, family treasures and as much as possible to those I know want them and will enjoy them. I get the joy of giving and know they are going to those I want to have them. Am I planning on dying this year? Definitely not! But I want to have some control over the rest of my life. I walk, take part in many activities that do not revolve around cancer, enjoy several circles of friends and worship and praise God every day. No one knows what tomorrow will bring, so we must all live our lives as if tomorrow may be the last or the first of many days we will be able to celebrate.

    Onward and upward!
    Cathy I think that you will find that there are a fair number of us with Stage 4 who are going well after 2 years + and intend to remain that way. Lack of stress and having a positive outlook have a lot to do with it and you are not helping yourself. I also don't research, put my total faith in my oncology team, but gain a great deal from this site and the positive posts from up beat ladies.
    I also have everything sorted...living will, also my quick nil-fuss funeral service on computer!! I think that this 'hiccup' makes you look ahead, and that previous peace of mind
    doesn't return..even though I try hard...but I will be around for a long time yet.
  • deanna14
    deanna14 Member Posts: 732
    janmac35 said:

    I have survived for 4 years and feel pretty good.
    Do not give up! Prepare but do not give up hope. I have survived 4 years and still enjoy life and expect to continue to live 1 year at a time. However, I am prepared with all the tedious papers, a living trust, etc. I, too, gave away all my tight clothes many 20 years old, figuring I deserve new ones if I ever get back to size 8 or 10. I am giving away collectibles, family treasures and as much as possible to those I know want them and will enjoy them. I get the joy of giving and know they are going to those I want to have them. Am I planning on dying this year? Definitely not! But I want to have some control over the rest of my life. I walk, take part in many activities that do not revolve around cancer, enjoy several circles of friends and worship and praise God every day. No one knows what tomorrow will bring, so we must all live our lives as if tomorrow may be the last or the first of many days we will be able to celebrate.

    janmac and karma
    Were you diagnosed UPSC? What stage? Congratulations! 4 years is awesome!! Here's to many more!
  • livenow09
    livenow09 Member Posts: 60
    Rewriter said:

    Do I really know "HOW" I am going to die
    Marie, you say that we have the advantage of knowing how we are going to die. Personally, I plan on living to my 90s and dying in my sleep. I think that's a possibility for many of us, no matter what the doctors say.

    advantage of knowing
    Aloha Rewriter,
    I was being factious when I said we know "how" we will die; if cancer recurs, then we'll die from the cancer...increased weakness; bizarre blood counts; wasting syndrome, organ failure any and all variations; this is how most people die anyway; BUT WE AIN"T DEAD YET SO DANCE, SING AND LOVE AS MUCH AS YOU CAN

    Marie
  • A1pena
    A1pena Member Posts: 92
    Kris Ann said:

    Hope for stage 4
    Hi Elizabeth. My mom has stage 4 and is fine. She was diagnosed March 8th 2008. And yes stage 4 uspc/clear cell. She had that same treatment as the others chemo wise.. actually had 4 rounds of chemo. had 33 whole abdominal radiation treatments and 4 brachies. I just took her for her check up the week of thanksgiving and her dr. said she was doing great.. She is finally putting on weight again etc.. So there is def. hope for sure!

    Kristin

    Thank you Kris Ann!
    Thank you for posting your story! I hope to hear more positive ones like this in the near future...

    Best wishes for you and your mom,

    Amanda
  • Caradavin
    Caradavin Member Posts: 42
    Only one person knows how
    Only one person knows how long you will live. They only know stats for their hospital right? Be the exception.