wrong about ct results

kapper48
kapper48 Member Posts: 85
edited March 2014 in Colorectal Cancer #1
First of all thank you so much for greeting my wife Carrie to this site. She is and always will be my rock, I don't know what I would do without her. I posted the other day that my ct scans came back good, Well thats what my Onc, nurse told me on the phone. Today I went to see my Onc. to find out what approuch we were going to take for the bladder cancer. While I am sitting there she tells me that she is pretty sure the cancer has also spread to my kidneys and my small bowels, she then tells me that we have tried everything she has except 1 drug I will have to get back with you with the name of it Carrie has the paper with her and she is not home right now. We have tried the flofuri and the 5 fu with all the other drugs that come with them. She then tells me that she really dosen't think this other drug will do me any good and that maybe I should go home and think about what I want to do. She then told me that I should think about quality of life. that is what I should think about right now. I asked her how much time she thought I might have and she said well I'm not god but from past exsperence I would say less than a year. Man what a blow that was to here that. I just don't understand I feel pretty good for the most part and I feel like she is just giving up on me and I don't know why. Carrie and I are going to take all 5 girls to florida in about 2 weeks, I need this vacation really bad right now. I just want to get away from all the Dr's nurses and everything and have fun with my family. When we get back were going to look for a new Dr. and hopefully someone who half **** cares. Right now I am so scared and really don't know what to do or where to go.
Pat
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Comments

  • Nana b
    Nana b Member Posts: 3,030
    Oh, that is a tough one!!
    Oh, that is a tough one!! So sorry! Please do get second opinion! Try and enjoy your vacation. one day at a time.
  • Sundanceh
    Sundanceh Member Posts: 4,392 Member
    Whoa, Hold the Phone
    Wow, Pat

    That's a real 180! This kind of news is very unsettling when you hear it in person - your brain just begins to race around.

    It sounds like you have either done the Folfiri or the Folfox, both have 5fu and Leucavorin in them...Folfiri contains Ironetecan, which goes by Camptosar or CPT-11. Folfox contains Elotaxin, fondly known as Oxaliplatin. That one's got the bad neuropathy and cold sensations in it.

    I had to calm down myself - after reading this my heart was racing and my blood pumping, and my brain was thinking faster than I could type.

    Better now, so here are a couple of points to hang onto:

    1. It is TIME to begin your search for a 2nd opinion on a new onc, perhaps at the facility
    you are currently going to or perhaps another facility. It sounds like she has reached the
    end of her "expertise" in the war against Cancer. There are many, many options out there
    for treatment. And she did not even offer to help you find a clinical trial, or if you
    would qualify. Forgive me, but staying with her will probably get you to those stats she
    mentions...what you need to hear right now is the word HOPE and we can try something ELSE.
    Her not feeling that there is hope will not help inspire you and you need to BELIEVE that
    whatever you are doing will only give you hope with the outcome of cure. If she does not
    believe that, then you must find someone who has. True victory and success will come from
    this approach.

    2. She should not have told you what her "prediction" is for your outcome. As many have said,
    I have not found one doctor who can "accurately" predict when a person checks out of this
    world - that's for Bigger Minds than ours to make this assertion.

    I had a team of doctors tell me in Dec07 at Christmas that I probably would not see next year's Christmas - guess what, Pat? I saw Dec08 and just finished Dec09 - 2 years by my count. And they were all so SURE that within ONE YEAR, the cancer would return to my liver. They were almost gleeful in their "prediction" of that. Guess what, Pat? Proved them wrong again - I just love proving doctors wrong.

    I respect the medical community, but you have to watch them - take what they say, but don't buy it hook, line, and sinker - be your own advocate and do your homework, and show them that you are a PROACTIVE member of your cancer team and you're not going to take this lying down, No sir, no way!!!

    I believe in Quality of Life and I'd like to think that at any given point, I would know when to throw in the towel - BUT not before a good fight!!! And I just love a good fight!

    And let me tell you this and I know this - my friend Pat/Kapper48 is a fighter - he's not gonna' quit - he's gonna bloody Cancer's nose - and he's gonna' hit Cancer square in the jaw, just to let Cancer know that good ol'Pat is still here - and still with US here on this board.

    I've come in a short time to really like you Pat - you seem like a very gentle man and a good family man, great husband and all of that. Thanks for sharing your thoughts with us, it really helps to get to know someone like this.

    And because, I like you, I am passionate in this post, 'cause your onc just lit my fuse today and it's hard to get me upset anymore.

    Now, I need a favor from YOU - I want you to get MAD...get angry...and tell the Cancer, "You want some - you got some!" I said you were Nice, but you've got to get MEAN now in this stage of your journey - just be MEAN to the Cancer and let it know, "In for a Penny, In for a Pound."

    And I'll close with my favorite Cancer Battle Cry: (Say it with me, Pat)

    "Cancer does not define me, but HOW I live and fight Cancer DOES define me."

    And by my definition, Pat is a fighter and big time warrior!

    And on a lighter note, your wife Carrie, was lovely, so nice to meet her.

    Pat, I'm pulling for you very, very hard now....go get that vacation you need, it's a good time. And when you come back, "Your Mind Will Be Right to Fight."

    BTW...I'm 48 too, Pat :)

    Your Friend
    -Craig
  • geotina
    geotina Member Posts: 2,111
    Yikes
    Never expected you to be posting this news. I thought the bladder cancer was bad but, ok, you can deal with that one but this new stuff, yikes. I don't know where you live but if you let us know I'm sure the board will let you know the cutting edge places to get a second opinion rather quickly and maybe even the name of some doctors. If you can get a jump on this before you leave for vacation then you will be prepared to get the ball rolling when you return. A NCI (?) facility is probably what you need.

    Here in Michigan, that would be the University of Michigan, Ann Arbor, Michigan. Heard they do some wild stuff, think outside the box, stuff there.

    I am so sorry for this news. I keep searching for words of comfort for you and your family but nothing seems appropriate. I, as well as others, care very deeply when one of our own receives bad news. Tina
  • KathiM
    KathiM Member Posts: 8,028
    Get thee to another doctor!!!!
    It's second opinion time!!!

    In the meantime, enjoy the vacation!!!

    Hugs, Kathi
  • kapper48
    kapper48 Member Posts: 85
    Sundanceh said:

    Whoa, Hold the Phone
    Wow, Pat

    That's a real 180! This kind of news is very unsettling when you hear it in person - your brain just begins to race around.

    It sounds like you have either done the Folfiri or the Folfox, both have 5fu and Leucavorin in them...Folfiri contains Ironetecan, which goes by Camptosar or CPT-11. Folfox contains Elotaxin, fondly known as Oxaliplatin. That one's got the bad neuropathy and cold sensations in it.

    I had to calm down myself - after reading this my heart was racing and my blood pumping, and my brain was thinking faster than I could type.

    Better now, so here are a couple of points to hang onto:

    1. It is TIME to begin your search for a 2nd opinion on a new onc, perhaps at the facility
    you are currently going to or perhaps another facility. It sounds like she has reached the
    end of her "expertise" in the war against Cancer. There are many, many options out there
    for treatment. And she did not even offer to help you find a clinical trial, or if you
    would qualify. Forgive me, but staying with her will probably get you to those stats she
    mentions...what you need to hear right now is the word HOPE and we can try something ELSE.
    Her not feeling that there is hope will not help inspire you and you need to BELIEVE that
    whatever you are doing will only give you hope with the outcome of cure. If she does not
    believe that, then you must find someone who has. True victory and success will come from
    this approach.

    2. She should not have told you what her "prediction" is for your outcome. As many have said,
    I have not found one doctor who can "accurately" predict when a person checks out of this
    world - that's for Bigger Minds than ours to make this assertion.

    I had a team of doctors tell me in Dec07 at Christmas that I probably would not see next year's Christmas - guess what, Pat? I saw Dec08 and just finished Dec09 - 2 years by my count. And they were all so SURE that within ONE YEAR, the cancer would return to my liver. They were almost gleeful in their "prediction" of that. Guess what, Pat? Proved them wrong again - I just love proving doctors wrong.

    I respect the medical community, but you have to watch them - take what they say, but don't buy it hook, line, and sinker - be your own advocate and do your homework, and show them that you are a PROACTIVE member of your cancer team and you're not going to take this lying down, No sir, no way!!!

    I believe in Quality of Life and I'd like to think that at any given point, I would know when to throw in the towel - BUT not before a good fight!!! And I just love a good fight!

    And let me tell you this and I know this - my friend Pat/Kapper48 is a fighter - he's not gonna' quit - he's gonna bloody Cancer's nose - and he's gonna' hit Cancer square in the jaw, just to let Cancer know that good ol'Pat is still here - and still with US here on this board.

    I've come in a short time to really like you Pat - you seem like a very gentle man and a good family man, great husband and all of that. Thanks for sharing your thoughts with us, it really helps to get to know someone like this.

    And because, I like you, I am passionate in this post, 'cause your onc just lit my fuse today and it's hard to get me upset anymore.

    Now, I need a favor from YOU - I want you to get MAD...get angry...and tell the Cancer, "You want some - you got some!" I said you were Nice, but you've got to get MEAN now in this stage of your journey - just be MEAN to the Cancer and let it know, "In for a Penny, In for a Pound."

    And I'll close with my favorite Cancer Battle Cry: (Say it with me, Pat)

    "Cancer does not define me, but HOW I live and fight Cancer DOES define me."

    And by my definition, Pat is a fighter and big time warrior!

    And on a lighter note, your wife Carrie, was lovely, so nice to meet her.

    Pat, I'm pulling for you very, very hard now....go get that vacation you need, it's a good time. And when you come back, "Your Mind Will Be Right to Fight."

    BTW...I'm 48 too, Pat :)

    Your Friend
    -Craig

    Craig, thank you so much,
    Craig, thank you so much, You just lit the fuse on this stick of dinamite. You are so right of what I need to do. I will fight this cancer with everything I have and I will beat this monster into the ground. Again Craig thanks I needed that comment from someone and I'm glad it was you.
    Pt
  • maglets
    maglets Member Posts: 2,576
    KathiM said:

    Get thee to another doctor!!!!
    It's second opinion time!!!

    In the meantime, enjoy the vacation!!!

    Hugs, Kathi

    oh Pat
    well Pat that news just stinks! I feel so badly for you that you learned about all this in the way you did.

    I agree with the others....do start to explore another doc and ooooh a Florida vacation...do it

    hugs, mags
  • kapper48
    kapper48 Member Posts: 85
    geotina said:

    Yikes
    Never expected you to be posting this news. I thought the bladder cancer was bad but, ok, you can deal with that one but this new stuff, yikes. I don't know where you live but if you let us know I'm sure the board will let you know the cutting edge places to get a second opinion rather quickly and maybe even the name of some doctors. If you can get a jump on this before you leave for vacation then you will be prepared to get the ball rolling when you return. A NCI (?) facility is probably what you need.

    Here in Michigan, that would be the University of Michigan, Ann Arbor, Michigan. Heard they do some wild stuff, think outside the box, stuff there.

    I am so sorry for this news. I keep searching for words of comfort for you and your family but nothing seems appropriate. I, as well as others, care very deeply when one of our own receives bad news. Tina

    Hi Tina, Thanks for
    Hi Tina, Thanks for replying, I live in st louis missouri and go to siteman cancer center its one of the biggest cancer centers in town. Thought I was in the right place. If you or anybody else has any idea's where I could go let me know, Will travel anywhere I have to I mean anywhere this country or another if need be.
    Pat
  • AnneCan
    AnneCan Member Posts: 3,673
    Pat, I am so sorry that you
    Pat, I am so sorry that you had this news today. I think Craig & Tina gave you some great advice. I agree with Tina about starting the search for a 2nd opinion now, rather than after your vacation. Sometimes it takes a little time to set up appointments; maybe if you start now you can have something lined up for when you return from that lovely vacation. I don't like the term "pretty sure" when it comes to cancer, we need to know what we are dealing with & so do the doctors; however "pretty sure" leaves the chance it hasn't spread to those organs. Craig gave some great "fightin' words" & what he said about you is true; the fact that you are a wonderful family man comes through in all of your posts. I think it is awesome you are going to Florida with your family; I hope you have a wonderful time. We are all rooting for you & for you to get a 2nd opinion from a great doctor.
  • geotina said:

    Yikes
    Never expected you to be posting this news. I thought the bladder cancer was bad but, ok, you can deal with that one but this new stuff, yikes. I don't know where you live but if you let us know I'm sure the board will let you know the cutting edge places to get a second opinion rather quickly and maybe even the name of some doctors. If you can get a jump on this before you leave for vacation then you will be prepared to get the ball rolling when you return. A NCI (?) facility is probably what you need.

    Here in Michigan, that would be the University of Michigan, Ann Arbor, Michigan. Heard they do some wild stuff, think outside the box, stuff there.

    I am so sorry for this news. I keep searching for words of comfort for you and your family but nothing seems appropriate. I, as well as others, care very deeply when one of our own receives bad news. Tina

    This comment has been removed by the Moderator
  • Lovekitties
    Lovekitties Member Posts: 3,364 Member
    Hang in there!
    Hi Pat…I am new here and also new to Cancer…but from your post and the replies I have seen, it seems like you are a fighter.

    You said you are scared and unsure of what to do or where to go…here is my advice for what it is worth
    Take a deep breath or two or three to help calm yourself
    Remind yourself that none of us on the planet know when we will die, so your doc is more likely wrong than right. Heck, we don’t even know that cancer will be our cause of death. All that is up to a higher authority than any of us.
    It sounds like you have a wonderful family who is worth fighting to be with. Don’t let the doc’s gloom and doom take away that fighting spirit.
    Get in touch with those you trust to find another doc, a clinical trial, alternative treatments. Doing something proactive will help with the feeling of being scared.
    Being unable to be in control of cancer is one of the things which is the scariest…so take back control of what you can in your life…enjoying your family…making that search for someone who believes your fighting spirit makes you a candidate for additional, yet untried, treatments.

    We each have to do what is best for our personal situation when it relates to doctors and treatments, but we all have one thing we must do…continue to get the best out of every day we are here.
  • lisa42
    lisa42 Member Posts: 3,625
    sending you a PM
    Pat,

    I'm sorry to hear the original ct scan news wasn't accurate. I am sending you a private message- please look for it- I have some info I want to share with you.

    Lisa
  • Annabelle41415
    Annabelle41415 Member Posts: 6,715 Member
    Awful
    That is terrible news, but I agree with the others, please seek another opinion. Your doctor shouldn't be giving up on you so easily. Not sure why the oncologists nurse gave you false or inaccurate information. Maybe she needs to stay away from that. Glad you are getting away, it will be good for you. Enjoy the time with your family.

    Kim
  • linandtom
    linandtom Member Posts: 67
    kapper48 said:

    Craig, thank you so much,
    Craig, thank you so much, You just lit the fuse on this stick of dinamite. You are so right of what I need to do. I will fight this cancer with everything I have and I will beat this monster into the ground. Again Craig thanks I needed that comment from someone and I'm glad it was you.
    Pt

    Go Kick Butt
    I hate to hear anytime a doctor or nurse tells someone you have blank amount of time. Who gave her the power to know this! None of us may make it home tonight - no one knows if they will have a tomorrow! Cancer pts or no cancer! You live today - you enjoy your family - you find a new doctor to give you new hope. Hang in there and please keep the fight!
  • robinvan
    robinvan Member Posts: 1,012
    Hi Pat,
    I am so sorry to hear about your ct results and awful oncologist appointment. I totally support your plan to find a new doctor!

    Have a great trip to Florida. My folks overwinter in St. Augustine Beach and I've made many trips there over the past 10 years or so. Have a blast!

    Peace and blessings... Rob; in Vancouver

    “Life is short,and we do not have much time to gladden the hearts of those who travel the way with us. So let us be swift to love, and let us make haste to show kindness.”
    Henri Amiel
  • just4Brooks
    just4Brooks Member Posts: 980
    Vacation for now... Then the fight is on!!
    Hi Pat, First of all Doctors dont know S%&T!! I've worked hospice for many years and know many people who would be long gone if they listened to there doctors. Dude, I know a guy named Mark who they said "You got 1 year" and is still loving life 10 YEARS later. He told me he laughed in his doctors face and said "We'll just see about that".

    You go on that vacation with your kids and have the time of your life, Go catch a fish for me!! Then when you get home you put on your fighting hat and fight like you have never have before. If your hands get too tired to punch then you kick, when your legs get tired you bite, if you teeth fall out then you scratch. You fight till you cant fight anymore.. You fight for your kids, you fight for your wife, and you fight because you can!!

    That's all I have to say for now. Call your doctor and tell her "We'll just see about that"

    Life is funny sometimes

    Brooks
  • dianetavegia
    dianetavegia Member Posts: 1,942
    Pat
    I've read this thread several times over the last two hours and it just irks the crap out of me! Yeah.... what Craig said!

    She thinks? She's pretty sure? ACK! It sounds like your onc IS giving up and homey don't play that! We're not quitters and neither are you! We'll show her!
  • Shayenne
    Shayenne Member Posts: 2,342

    Pat
    I've read this thread several times over the last two hours and it just irks the crap out of me! Yeah.... what Craig said!

    She thinks? She's pretty sure? ACK! It sounds like your onc IS giving up and homey don't play that! We're not quitters and neither are you! We'll show her!

    Awww Pat;l!
    That sucks, cancer sucks! but I agree with everyone else, I'd go to Sloane-Kettering or MD Anderson hospitals, they are the number one hospital with Sloane being second! If I had the funds, I would go there. I don't believe in doctors predictions of how long anyone has to live either, only God knows, we're all in his hands, and it was great of your wife to join us, she's so sweet! You have a blast on your vacation with your family, and don't give this cancer another thought while on it, just be you, and don't let it take you over. There are so many miracles that happen on this earth, and never lose the hope or faith! We love you, my brother!

    Hugsss!
    ~Donna
  • Kathleen808
    Kathleen808 Member Posts: 2,342
    Pat
    Pat,
    So sorry to hear about this news. I agree with the group, get a second opinion. It is good to hear that you and your family are going to get away together. I will pray that you can enjoy your beautiful family and have some time when you are not thinking about this horrid disease.

    My prayers are with you.

    Aloha,
    Kathleen
  • Patteee
    Patteee Member Posts: 945
    ya know, really, your
    ya know, really, your ex-oncologist was really just telling you, "I can't help you anymore, if you stay with me, you have a year, so time to move on!" So I vote with everyone else, time to move on Pat! Her "expertise" and usefulness in dealing with your cancer has reached an end. I will say this, direct your anger toward the cancer, reserve your energy for the fight ahead- don't waste any more oxygen on ex-doctors!

    Have a wonderful Florida vacation!
  • lcarper2
    lcarper2 Member Posts: 635
    Patteee said:

    ya know, really, your
    ya know, really, your ex-oncologist was really just telling you, "I can't help you anymore, if you stay with me, you have a year, so time to move on!" So I vote with everyone else, time to move on Pat! Her "expertise" and usefulness in dealing with your cancer has reached an end. I will say this, direct your anger toward the cancer, reserve your energy for the fight ahead- don't waste any more oxygen on ex-doctors!

    Have a wonderful Florida vacation!

    time for the healing
    PLEASE join me in a healing prayer for Pat set your watches for 1 hour from now and at that time come to the computer and bring up this post and say a healing prayer for Pat. I have had this done for me and I claimed the healing God had for me and in about a month I know I am going to her you are still cancer free...see you in an hour.