New Member Lexern

dianetavegia
dianetavegia Member Posts: 1,942 Member
edited March 2014 in Colorectal Cancer #1
You said:
Lymph node not attached to lung
Hi John 23, I wonder what you have heard about distant mastisis in lymph nodes only, I have a few in abdomin and left side of neck found with PET/CTscan. All organs are clear including lungs and liver. I need a permanant colostomy but my oncologist says I have no shot at living so no need for surgery. I have no symptoms, found with 50yr old routine colonoscopy, I work out and play golf and was just enjoying life until 2 weeks ago. What facts or positive stories have you heard for people like me, anything would be appreciated.
I'm afraid this would be overlooked because you put it at the bottom of an old post. :-)

A member who has since died had a met in the side of her neck. You might do a search for butterfly23, Karyn, and read about her treatments.

No shot at living? You've got a shot of living many years! Find a New SURGEON today! Yes, having mets in diverse places is very bad news but your surgeon is not God and chemo can work wonders.

Diane

Comments

  • geotina
    geotina Member Posts: 2,111 Member
    #2
    Lexern
    Your doctor actually said you have no shot at living. That is so wrong. My hubby is Stage IV with lung and liver involvement and yes, he has a shot at living, our doctor is nothing but encouraging. Maybe time for that second opinion. Chemo can work wonders. If you click on someones name you can read their bio. Take a deep breath, others will be on to reply to your post. I'd like to strangle your doctor.

    Diane, thanks for bumping this up.

    Take care - Tina
  • Kerry S
    Kerry S Member Posts: 606 Member
    #3
    LEXERN
    You have a hell of a good shot at living. WE ALL DO. I tell you this gets me mad as hell. When we bought our homes we did not go to the realtor and say “buy me a house”. We all looked at a bunch before buying. We should do the same with doctors. Our lives are worth more then a damn house.

    Get your **** in gear and find a new doc. One that does not play to loose, but fights to win the $#%$@! Battle.

    Dito on thanks to Diane Love ya Darlin
  • lcarper2
    lcarper2 Member Posts: 635 Member
    #4
    Kerry S said:

    LEXERN
    You have a hell of a good shot at living. WE ALL DO. I tell you this gets me mad as hell. When we bought our homes we did not go to the realtor and say “buy me a house”. We all looked at a bunch before buying. We should do the same with doctors. Our lives are worth more then a damn house.

    Get your **** in gear and find a new doc. One that does not play to loose, but fights to win the $#%$@! Battle.

    Dito on thanks to Diane Love ya Darlin

    Lexern
    Was the doctor wearing sandels!!!! God is the only one that can say that...I would seek another opion ASAP never would I step foot in his office ever...the last thing anyone should hear is something that stupid get another doctor....
  • PamPam2
    PamPam2 Member Posts: 370 Member
    #5
    Lexern
    Lexern
    Run! Don't walk-find another doctor ASAP. There are many folks on here, including me that were diagnosed stage 4 with spread and we are still here. You say you are in good health otherwise, until 2 weeks ago, you have a very good chance of fighting this disease. I am your age and it is 5 1/2 years since my diagnosis and I'm doing good. If you let us know where you are located people on here will have suggestions about good doctors and treatment centers in your area. Let us know.
    Pam
  • mom_2_3
    mom_2_3 Member Posts: 953 Member
    #6
    Lexern
    One of our best friend's father was diagnosed 6 1/2 years ago with colon cancer Stage IV. In his scan this man lit up like a literal Christmas tree with nodes in the abdominal, chest and neck areas. One of the nodes in his neck was biopsied and colon cancer was confirmed. When he was diagnosed the doctor told him to to worry about the colon surgery as "it wouldn't matter" and told him to plan his funeral. Nevertheless he did 6 months of FOLFOX and Avastin. After six months of that treatment his nodes were clean. He had the colon surgery. He will soon be celebrating his 6 year NED.

    So get another opinion, get into treatment and don't give up.
  • dianetavegia
    dianetavegia Member Posts: 1,942 Member
    #7
    mom_2_3 said:

    Lexern
    One of our best friend's father was diagnosed 6 1/2 years ago with colon cancer Stage IV. In his scan this man lit up like a literal Christmas tree with nodes in the abdominal, chest and neck areas. One of the nodes in his neck was biopsied and colon cancer was confirmed. When he was diagnosed the doctor told him to to worry about the colon surgery as "it wouldn't matter" and told him to plan his funeral. Nevertheless he did 6 months of FOLFOX and Avastin. After six months of that treatment his nodes were clean. He had the colon surgery. He will soon be celebrating his 6 year NED.

    So get another opinion, get into treatment and don't give up.

    Now that's exciting!
    Hope Lexern will check in and read these.
  • John23
    John23 Member Posts: 2,122 Member
    #8
    Below is the link to the original thread. It gets confusing when the
    same discussion gets discussed on more than one thread!

    Here: One Distant Lymph Node
  • dianetavegia
    dianetavegia Member Posts: 1,942 Member
    #9
    John23 said:

    Below is the link to the original thread. It gets confusing when the
    same discussion gets discussed on more than one thread!

    Here: One Distant Lymph Node

    John
    The other thread was not started by Lexern. Emily Rose started that one so replies should go to her. :-)

    I was appalled by the onc's remarks to Lexern and didn't want you to overlook his/her questions!
  • John23
    John23 Member Posts: 2,122 Member
    #10
    dianetavegia said:

    John
    The other thread was not started by Lexern. Emily Rose started that one so replies should go to her. :-)

    I was appalled by the onc's remarks to Lexern and didn't want you to overlook his/her questions!

    Appalled
    Appalled

    Appalled is an understatement. I expressed my personal outrage
    a lil' less eloquently on that other thread!

    There seems to be more bad physicians than good ones lately,
    and I'm starting to wonder if it's just a sign of the times.... We refer
    to it as "the dumbing down of intelligent beings"..

    I was being rolled back to the ICU from the ER when a surgeon
    stopped me in the hallway, in front of strangers, and told me I had
    cancer that was going to kill within hours, if I didn't consent to
    him operating. They had to roll me back to the scan room, and
    on the second trip back, the same surgeon told me again, in front
    of a hallway full of people, that I was going to die if I didn't sign.
    (I got different surgeons to do it)

    When I was in the ICU, a "hospital councilor" asked me if I decided
    on a hospice yet, and proceeded handing me brochures to read and
    papers to sign.....

    Isn't life grand? I love health care professionals that are like that.

    Egads. I am at a loss for obscenities to use...



    John


    (For the curious, the other thread is here.
  • lisa42
    lisa42 Member Posts: 3,625 Member
    #11
    I can't believe it!
    That doctor should be brought up for sanction before the medical review board- I'm serious! To tell a patient he has no shot at living, so don't bother with the surgery... that is beyond belief. The patient doesn't even have tumors in other organs, so I'm assuming it's stage III. Heck, we all know here that there are even many stage IV patients who are living a long time with the cancer and several that have even gotten to NED (no evidence of disease). For sure there are many, many stage III patients who have been cancer free for many, many years.
    That's actually the worst incompetent and horrible bedside manner doctor story I've heard of anyone with cancer! (John- yours was too- wow- unbelievable!)

    I've fortunately even as a stage IV patient with mets to liver and "too many to count" tumors in my lungs upon diagnosis 2-1/2 yrs ago, have NEVER been told I was going to die or that my case was hopeless. Any new doctor I meet with, I tell them up front that I never want to hear that- I can read and I know that stage IV is pretty bad and is considered "terminal" according to the guidelines that qualify me for permanent disability now- BUT, if I were ever to be told I was "terminal" by a doctor, it would completely knock the fight and hope out of me. EVERY cancer patient needs hope to keep going and to fight it. Why would a doctor ever think it's acceptable to be that blunt even if he/she were right, which they have no way of knowing that anyhow.
    I hate it when doctors try to play God! At the beginning, I was told by the GI dr. who did my first ultrasound colonoscopy that I would "definitely need a permanent colostomy". I saw the colorectal surgeon the next day who completely contradicted that. The GI doc spoke completely out of turn.
    My onc says he never gives his patients a "timeline" unless they specifically ask for it. Even then, he qualifies it with "but everyone is different and we doctors aren't God, and are usually wrong when we give a timeline".


    I strongly echo everyone else's sentiments- never go back to that doctor and find one who is positive and wants to fight for your life!

    Lisa
  • mom_2_3
    mom_2_3 Member Posts: 953 Member
    #12
    lisa42 said:

    I can't believe it!
    That doctor should be brought up for sanction before the medical review board- I'm serious! To tell a patient he has no shot at living, so don't bother with the surgery... that is beyond belief. The patient doesn't even have tumors in other organs, so I'm assuming it's stage III. Heck, we all know here that there are even many stage IV patients who are living a long time with the cancer and several that have even gotten to NED (no evidence of disease). For sure there are many, many stage III patients who have been cancer free for many, many years.
    That's actually the worst incompetent and horrible bedside manner doctor story I've heard of anyone with cancer! (John- yours was too- wow- unbelievable!)

    I've fortunately even as a stage IV patient with mets to liver and "too many to count" tumors in my lungs upon diagnosis 2-1/2 yrs ago, have NEVER been told I was going to die or that my case was hopeless. Any new doctor I meet with, I tell them up front that I never want to hear that- I can read and I know that stage IV is pretty bad and is considered "terminal" according to the guidelines that qualify me for permanent disability now- BUT, if I were ever to be told I was "terminal" by a doctor, it would completely knock the fight and hope out of me. EVERY cancer patient needs hope to keep going and to fight it. Why would a doctor ever think it's acceptable to be that blunt even if he/she were right, which they have no way of knowing that anyhow.
    I hate it when doctors try to play God! At the beginning, I was told by the GI dr. who did my first ultrasound colonoscopy that I would "definitely need a permanent colostomy". I saw the colorectal surgeon the next day who completely contradicted that. The GI doc spoke completely out of turn.
    My onc says he never gives his patients a "timeline" unless they specifically ask for it. Even then, he qualifies it with "but everyone is different and we doctors aren't God, and are usually wrong when we give a timeline".


    I strongly echo everyone else's sentiments- never go back to that doctor and find one who is positive and wants to fight for your life!

    Lisa

    Distant lymph nodes
    Lisa,

    Lymph node involvement distant from the original tumor is considered Stage IV. That's how our friend was staged.

    Hope all is well!
    Amy
  • RickMurtagh
    RickMurtagh Member Posts: 587 Member
    #13
    mom_2_3 said:

    Distant lymph nodes
    Lisa,

    Lymph node involvement distant from the original tumor is considered Stage IV. That's how our friend was staged.

    Hope all is well!
    Amy

    apparently
    anyone can be brain challenged, even doctors. If I recall we have even had a few presidents that where brain challenged.

    I hope you get some hope from your NEXT doctor. That one is patient challenged as well as brain challenged,

Discussion Boards