I'm soooo MAD!!!

Options
butterfly23
butterfly23 Member Posts: 256
edited March 2014 in Colorectal Cancer #1
Hi everyone, I am 39 yrs old. I have stage 4 colon cancer, mets to the lymph nodes, 16 rounds of 5fu so far, and had surgery to remove tumor from colon in Oct. Here's my problem, a rep. from the american cancer society came by last week while I was getting chemo, she asked if I would be interested in sending out info to me, I said sure, why not? You have to understand I have been EXTREMELY POSITIVE, throughtout my illness, everyone always tells me how strong I am, and how I am keeping everyone else so strong, my answer is always, you do what you have to do, I don't want the alternative!
I received the info in the mail, it was very interesting, all about colon cancer. Some things I did not know. I turned to the last page, and they had written statistics, this is something I CHOSE NOT TO KNOW! If I wanted to know this, I would have easily asked my dr. or gone on the internet! Not everyone wants to know this! I let my nurses know about it today, they called my onc. he said it is true in my case,VERY HONEST, WHICH I LOVE ABOUT HIM! However,to believe I AM the positive percentage, he is very upset as the nurses too, they are having a meeting with the rep. from the cancer society to let they know how wrong it was to put that in the info, To me it was such a punch in the stomache! I did not want to know this info,and there it was in my face! My onc. is very upset for me, because he knows how positive I have been throught this disease, and he hopes I don't let statistice overcome me. I HAVE to believe I am the lower percent and I will beat this,I have a wonderful husband, who I am not telling about this, it would crush him, I did tell my mother and sister, so I do have someone to talk to. I HATE CANCER! I'm sorry for babbling, but I needed you all for support, that's why we are all here! I love you all and pray every night for a cure for all of us!
God Bless
Karyn

Comments

  • dianetavegia
    dianetavegia Member Posts: 1,942 Member
    Options
    Gonna pray for you!
    HI Karyn,
    I avoid all those 'Coping' magazines piled high at my doctor's office / chemo room and read the dumb magazines I'd never purchase otherwise.

    Man's numbers are not God's numbers! Let's lean on HIM!

    Also, the Dana Farber Cancer Institute has done studies with Stage III colon cancer w/ local lymph involvement and found that regular exercise increases survival rates by 55%. Take those 'death' numbers and multiply by 55% and add to your 'good' numbers. I found this off About.com

    A study is NOW underway on Stage IV to see how those numbers go up. Positive thinking. High Fiber/ low fat diet. Exercise. PRAYER! You've got the right idea already and should just be angry enough to prove them wrong! You GO girl!

    I'm adding YOU to my prayer list and expect only good reports in the future. Our God is an AWESOME God and still in the miracle business!

    In HIS love,
    Diane Tavegia
  • butterfly23
    butterfly23 Member Posts: 256
    Options

    Gonna pray for you!
    HI Karyn,
    I avoid all those 'Coping' magazines piled high at my doctor's office / chemo room and read the dumb magazines I'd never purchase otherwise.

    Man's numbers are not God's numbers! Let's lean on HIM!

    Also, the Dana Farber Cancer Institute has done studies with Stage III colon cancer w/ local lymph involvement and found that regular exercise increases survival rates by 55%. Take those 'death' numbers and multiply by 55% and add to your 'good' numbers. I found this off About.com

    A study is NOW underway on Stage IV to see how those numbers go up. Positive thinking. High Fiber/ low fat diet. Exercise. PRAYER! You've got the right idea already and should just be angry enough to prove them wrong! You GO girl!

    I'm adding YOU to my prayer list and expect only good reports in the future. Our God is an AWESOME God and still in the miracle business!

    In HIS love,
    Diane Tavegia

    Thank-You
    Thank-you Diane, everything you said is so true. I am NOT an exercise person, but I just got a new dog and have been walking her 3-4 times a day, it's a start to exercise... Thank-you for you information! Keep the prayers coming! I pray for everyone, everynight!
    God Bless,
    Karyn
  • mom_2_3
    mom_2_3 Member Posts: 953 Member
    Options
    A friend of ours
    Karyn,

    I want to tell you about a friend of ours. Six years ago he was diagnosed with cancer to all the lymph nodes in his neck and chest area. Doctors could not figure out the origin of the tumors even after 2 colonoscopies. The dr told him he should arrange an autospy at his death to provide his children with more information. He did get verification that the lymph nodes were cancerous via PET and a biopsy done on one of them. They were ready to give him Taxol as a chemo treatment as they couldn't figure it out.

    He went to MSK and they figured out it was colon cancer. Turns out the tumors were in the cecum and the 2 colonscopies didn't go that far.
    Well, he started on FOLFOX and every scan the lymph nodes kept shrinking. At the 9 month mark they declared that he was operable on the colon tumor. Six more months of chemo followed.

    He just had his 5 year scan and he has been NED this whole time. Remember that drs gave him a very bad prognosis and he's here today. We actually had lunch with him this past weekend and he looks FANTASTIC!

    As a stage IV person myself I don't read statistics anymore. I know everyone is different and I believe I will be healed. It's the only thing I can believe.
  • butterfly23
    butterfly23 Member Posts: 256
    Options
    mom_2_3 said:

    A friend of ours
    Karyn,

    I want to tell you about a friend of ours. Six years ago he was diagnosed with cancer to all the lymph nodes in his neck and chest area. Doctors could not figure out the origin of the tumors even after 2 colonoscopies. The dr told him he should arrange an autospy at his death to provide his children with more information. He did get verification that the lymph nodes were cancerous via PET and a biopsy done on one of them. They were ready to give him Taxol as a chemo treatment as they couldn't figure it out.

    He went to MSK and they figured out it was colon cancer. Turns out the tumors were in the cecum and the 2 colonscopies didn't go that far.
    Well, he started on FOLFOX and every scan the lymph nodes kept shrinking. At the 9 month mark they declared that he was operable on the colon tumor. Six more months of chemo followed.

    He just had his 5 year scan and he has been NED this whole time. Remember that drs gave him a very bad prognosis and he's here today. We actually had lunch with him this past weekend and he looks FANTASTIC!

    As a stage IV person myself I don't read statistics anymore. I know everyone is different and I believe I will be healed. It's the only thing I can believe.

    Hi
    THANK-YOU.
    Karyn
  • slamb58
    slamb58 Member Posts: 31
    Options
    Similar situation happened to me
    Hi Karyn, I
    I know how upsetting that can be. I had went to my liver surgeon last week for a follow-up after having a pet scan a couple of weeks ago. Well to my disappointment, he was sick and I had to see his partner. They looked at the scan, and he remarked that everything looked good, however I am at a high risk that the cancer will return. I couldn't believe it. I know that I am a high risk, since I was a stage IV, duh, but I am now finished with treatment, and working on getting my life back. I also am thinking positive in that I can beat this. When the dr said this to me, I was just so surprised. I then said "well that is true, but there is also a chance that it won't, isn't this correct"? He answers "yes". I'm thinking well why did you tell me this then. It just ruined my day. It really put me in a funk. By that evening I really felt my time here on earth was coming to an end. I mean it really got me down. I just don't understand why he would say that to me. My scan was clear, and my CEA is 1.1. I have since come to the conclusion that they don't really know who will beat it and who won't. So I have shook it off, and will continue to live my life like I will be here for years to come. After all there is only one person that knows my fate, and I have put my faith in him to see me through this.
  • mom_2_3
    mom_2_3 Member Posts: 953 Member
    Options
    slamb58 said:

    Similar situation happened to me
    Hi Karyn, I
    I know how upsetting that can be. I had went to my liver surgeon last week for a follow-up after having a pet scan a couple of weeks ago. Well to my disappointment, he was sick and I had to see his partner. They looked at the scan, and he remarked that everything looked good, however I am at a high risk that the cancer will return. I couldn't believe it. I know that I am a high risk, since I was a stage IV, duh, but I am now finished with treatment, and working on getting my life back. I also am thinking positive in that I can beat this. When the dr said this to me, I was just so surprised. I then said "well that is true, but there is also a chance that it won't, isn't this correct"? He answers "yes". I'm thinking well why did you tell me this then. It just ruined my day. It really put me in a funk. By that evening I really felt my time here on earth was coming to an end. I mean it really got me down. I just don't understand why he would say that to me. My scan was clear, and my CEA is 1.1. I have since come to the conclusion that they don't really know who will beat it and who won't. So I have shook it off, and will continue to live my life like I will be here for years to come. After all there is only one person that knows my fate, and I have put my faith in him to see me through this.

    Let you know...
    I wanted to let you know that I also just had my liver resection and a recent clear CT scan. I was told cure rates at MSK are 40%-50% for Stage IV liver involvement. My oncologist said I could increase my odds of survival in 2 ways...through watching my weight (I am at my target weight already) and by exercise. Take that and run with it!
  • Annabelle41415
    Annabelle41415 Member Posts: 6,742 Member
    Options
    I'm So Sorry
    I'm so sorry that you had to experience that. It was not right for the ACS to give you that information and include that info in it. We are all individuals with different circumstances and should not by anyway be lumped into a category by any means. I pray that you keep your positive attitude and continue your road to recovery and don't read any more statistics because we are all unique.

    Kim
  • butterfly23
    butterfly23 Member Posts: 256
    Options
    slamb58 said:

    Similar situation happened to me
    Hi Karyn, I
    I know how upsetting that can be. I had went to my liver surgeon last week for a follow-up after having a pet scan a couple of weeks ago. Well to my disappointment, he was sick and I had to see his partner. They looked at the scan, and he remarked that everything looked good, however I am at a high risk that the cancer will return. I couldn't believe it. I know that I am a high risk, since I was a stage IV, duh, but I am now finished with treatment, and working on getting my life back. I also am thinking positive in that I can beat this. When the dr said this to me, I was just so surprised. I then said "well that is true, but there is also a chance that it won't, isn't this correct"? He answers "yes". I'm thinking well why did you tell me this then. It just ruined my day. It really put me in a funk. By that evening I really felt my time here on earth was coming to an end. I mean it really got me down. I just don't understand why he would say that to me. My scan was clear, and my CEA is 1.1. I have since come to the conclusion that they don't really know who will beat it and who won't. So I have shook it off, and will continue to live my life like I will be here for years to come. After all there is only one person that knows my fate, and I have put my faith in him to see me through this.

    Hi
    Thank-you for your comments! It's true, I was in a funk for a few days, now I am mad and getting back to my positive thoughts! I love this website, all of you know what we're going through, emotions and all. I thank-you for writing me! I will continue to stay positive and you are right only one person knows our fate, and I truly believe in the power of prayer!
    Prayers to you!
    Karyn
  • butterfly23
    butterfly23 Member Posts: 256
    Options
    mom_2_3 said:

    Let you know...
    I wanted to let you know that I also just had my liver resection and a recent clear CT scan. I was told cure rates at MSK are 40%-50% for Stage IV liver involvement. My oncologist said I could increase my odds of survival in 2 ways...through watching my weight (I am at my target weight already) and by exercise. Take that and run with it!

    Hi
    Thank-you for writing, as I said I am not into exercise, but I am walking my new dog 3-4 times a day now, it's a start, and my weight is good!
    Prayers coming your way!
    Karyn
  • butterfly23
    butterfly23 Member Posts: 256
    Options

    I'm So Sorry
    I'm so sorry that you had to experience that. It was not right for the ACS to give you that information and include that info in it. We are all individuals with different circumstances and should not by anyway be lumped into a category by any means. I pray that you keep your positive attitude and continue your road to recovery and don't read any more statistics because we are all unique.

    Kim

    Hi
    Thank-you Kim, I knew I could count on all of you for such support, and I agree it should NOT have been put in that info, we are all individuals! I need to hear some positive stories!
    Prayers to you!
    Karyn
  • tootsie1
    tootsie1 Member Posts: 5,044 Member
    Options
    praying for you, too!
    Karyn,

    I'm way behind in telling you that I think you look beautiful in your picture. And I think you're going to be around to let us see many, many updates on that picture!

    I'll be praying for you, especially that you can keep your positive attitude.

    *hugs*
    Gail
  • usakat
    usakat Member Posts: 610 Member
    Options
    Helping Hands-Helping Hearts....sometimes they miss...
    Hello Karyn,

    Sorry you had to go through what you have. I think what first comes to my mind is to say to you, YOU are NOT a statistic. You are a single unique person, with a single and unique cancer, so applying a general statistic directly to your case or to you personally is a bit irrelevant. Besides, ACS and all other survival statistics are usually five year survival rates and are sometimes even outdated (look at the publication date on the brochure). If they are five year survival rates then it means the patient population included in the statistics were diagnosed more than five years ago. Cancer treatment has come a long way since then.

    Seems to me you are on the right track with ignoring statistics and getting on with your treatment with a keen eye on the future. And truly, we cannot know what the future holds for us, we can only move forward with faith and enjoy every day...every moment...for the true gifts that they are. I believe if we worry for what tomorrow may bring we lose the gift of today...regardless of circumstances, statistics, and more...

    Another thing that comes to my mind is how we as cancer patients/survivors deal with those who, with nothing but good intentions, try to help or comfort us. Sometimes with the best of intentions they may inadvertently stumble or blunder. Please know that ACS and hospital volunteers are wonderful people who dedicate their time, their energy and their resources to try and make a difference. I know most of us have come across a friend, a neighbor, or acquaintance who not knowing what to say, says something like, "my uncle...aunt...friend...cousin....my so-and-so...died of cancer. It was really bad." And we're left to think how uplifting that is to hear while we're in the midst of the fight.

    The truth is, unless someone has had cancer they really can't relate to what it's like to confront something so scary. Even so though, we need to understand that sometimes folks just won't get it right, but we should be grateful for those who at least try rather than steer clear of us. I know while I was battling cancer there were people who just ignored me (even some of my own relatives). I guess what I'm getting at is this - I'm sure the person from ACS who gave you their literature did not mean to cause you any harm, discomfort and anger, and I bet if they hear that is how you felt, they would be very sorry. ACS volunteers are among the best.

    Here is something we can all relate to:
    What not to say to someone with cancer.....a video created by a wonderful ovarian cancer survivor, Holly...she is one of my cancer heroes. She has been fighting hard for years and is amazingly strong, beautiful, with a fearless faith. She inspires me, perhaps she may inspire you too.

    http://www.youtube.com/watch?v=YLqHirQi_rs&feature=related

    My hope for you now Karyn, is that you can let go of the anger, grasp onto that positive attitude that has carried you this far, and move forward with that spirit that will carry you through the rest of your life...even well beyond cancer.

    Many blessings for comfort, healing and restored health...and much happiness.
    Katie
  • polarprincess
    polarprincess Member Posts: 202 Member
    Options
    hi
    the fact is that at your age the statistics for getting colon cancer in the first place are like 6% or less, so i like to look at that as a fact that you have already proven you can beat the odds..
  • cherylcrow
    cherylcrow Member Posts: 1
    Options

    Thank-You
    Thank-you Diane, everything you said is so true. I am NOT an exercise person, but I just got a new dog and have been walking her 3-4 times a day, it's a start to exercise... Thank-you for you information! Keep the prayers coming! I pray for everyone, everynight!
    God Bless,
    Karyn

    HELP
    My name is Cheryl. I am hoping too talk to someone that is going through what I am. I am having a very hard time. Please help me. I am only 44.
  • kimby
    kimby Member Posts: 797
    Options

    hi
    the fact is that at your age the statistics for getting colon cancer in the first place are like 6% or less, so i like to look at that as a fact that you have already proven you can beat the odds..

    Polarprincess
    EXACTLY!! This is my motto exactly. Maybe it's time to buy lottery tickets...hmmmm

    Kimby
  • kmygil
    kmygil Member Posts: 876 Member
    Options
    Numbers, Schmumbers
    Dear Karyn,

    Like Diane says, those are man's numbers, not God's. For one thing, the stats are always behind the times; sometimes as much as 6-10 years! They have not had enough time to look at long-term survival rates with the options we have today. Further, you are not a number, you are a person fighting very hard. In my book, the will to fight and a positive attitude boost your survival rate enormously! My chemo nurses agreed with me on that. Keep fighting and keep your positive outlook!

    Hugs and prayers,
    Kirsten
  • kmygil
    kmygil Member Posts: 876 Member
    Options

    HELP
    My name is Cheryl. I am hoping too talk to someone that is going through what I am. I am having a very hard time. Please help me. I am only 44.

    Go ahead!
    Dear Cheryl,

    Please go ahead & talk. This forum helped me keep my sanity. Eveyone is wonderful here. Just post whatever questions, rants or anything and we will respond to your needs as best we can. I was 49 at diagnosis, and we have had very, very young people in this group. You are not alone.

    Hugs and prayers,
    Kirsten
  • butterfly23
    butterfly23 Member Posts: 256
    Options
    usakat said:

    Helping Hands-Helping Hearts....sometimes they miss...
    Hello Karyn,

    Sorry you had to go through what you have. I think what first comes to my mind is to say to you, YOU are NOT a statistic. You are a single unique person, with a single and unique cancer, so applying a general statistic directly to your case or to you personally is a bit irrelevant. Besides, ACS and all other survival statistics are usually five year survival rates and are sometimes even outdated (look at the publication date on the brochure). If they are five year survival rates then it means the patient population included in the statistics were diagnosed more than five years ago. Cancer treatment has come a long way since then.

    Seems to me you are on the right track with ignoring statistics and getting on with your treatment with a keen eye on the future. And truly, we cannot know what the future holds for us, we can only move forward with faith and enjoy every day...every moment...for the true gifts that they are. I believe if we worry for what tomorrow may bring we lose the gift of today...regardless of circumstances, statistics, and more...

    Another thing that comes to my mind is how we as cancer patients/survivors deal with those who, with nothing but good intentions, try to help or comfort us. Sometimes with the best of intentions they may inadvertently stumble or blunder. Please know that ACS and hospital volunteers are wonderful people who dedicate their time, their energy and their resources to try and make a difference. I know most of us have come across a friend, a neighbor, or acquaintance who not knowing what to say, says something like, "my uncle...aunt...friend...cousin....my so-and-so...died of cancer. It was really bad." And we're left to think how uplifting that is to hear while we're in the midst of the fight.

    The truth is, unless someone has had cancer they really can't relate to what it's like to confront something so scary. Even so though, we need to understand that sometimes folks just won't get it right, but we should be grateful for those who at least try rather than steer clear of us. I know while I was battling cancer there were people who just ignored me (even some of my own relatives). I guess what I'm getting at is this - I'm sure the person from ACS who gave you their literature did not mean to cause you any harm, discomfort and anger, and I bet if they hear that is how you felt, they would be very sorry. ACS volunteers are among the best.

    Here is something we can all relate to:
    What not to say to someone with cancer.....a video created by a wonderful ovarian cancer survivor, Holly...she is one of my cancer heroes. She has been fighting hard for years and is amazingly strong, beautiful, with a fearless faith. She inspires me, perhaps she may inspire you too.

    http://www.youtube.com/watch?v=YLqHirQi_rs&feature=related

    My hope for you now Karyn, is that you can let go of the anger, grasp onto that positive attitude that has carried you this far, and move forward with that spirit that will carry you through the rest of your life...even well beyond cancer.

    Many blessings for comfort, healing and restored health...and much happiness.
    Katie

    Thank-You
    Hi Katie,
    I hope I didn't come across as being negative of the ACS. They do such a wonderful job, especially all the hard working volunteers! I was just upset about the brochure. If it wasn't for the ACS I would not be chatting with such wonderful people on this website, only you all know what we are going through, it truly has been a blessing meeting all of you! I will continue to stay positive! Thank-you for writing me!
    Blessings!
    Karyn
  • dianetavegia
    dianetavegia Member Posts: 1,942 Member
    Options
    kmygil said:

    Numbers, Schmumbers
    Dear Karyn,

    Like Diane says, those are man's numbers, not God's. For one thing, the stats are always behind the times; sometimes as much as 6-10 years! They have not had enough time to look at long-term survival rates with the options we have today. Further, you are not a number, you are a person fighting very hard. In my book, the will to fight and a positive attitude boost your survival rate enormously! My chemo nurses agreed with me on that. Keep fighting and keep your positive outlook!

    Hugs and prayers,
    Kirsten

    Exactly!
    My oncologist had poked in some stats before meeting me or reading my health history. He had me down as in 'fair' health while, in fact, I've been in perfect health and never needed any medications for health concerns, etc., good weight, diet, etc.

    He showed me a paper that says '48- 50% of all colon cancer (even with lymph involvement) that has not spread to other organs) is cured by surgery alone'. Another 20% is cured by chemo. 3% of people my age would die from something else during the next 5 years. 71 -74%, he tells me. Next visit, they've upped me to around 80% because of correcting some basic info.

    Now, add in all that I'm doing to keep myself free from any cancer growth, i.e. diet, exercise, positive thinking, PRAYER, FAITH.... and I feel sure, with God's mighty hand, I can win this battle and use my time left on earth to tell others what God has done for me!

    Numbers, Schmubers, is right! God says we're given 70 years, 80 if we're strong. My mother is almost 77 and had breast cancer at age 50. It had spread to her lymph nodes. 50% chance. She had NO chemo. Mastectomy was done. She couldn't afford Tamoxifin after the first year so stopped taking it. She's never been sick again. She's leaving in a few months for Italy, Switzerland, Bavaria, Germany, and England. Over 30 days each year, she roams the world. Some doctor told her 27 years ago she was going to die....