KATE58 UPDATE

KATE58
KATE58 Member Posts: 299
edited March 2014 in Colorectal Cancer #1
WELL,if you read my last discussion from about 3 weeks ago,
"2010 NOT STARTING GOOD" You know about the tumour in the main bile duct
that was removed during the ERCP biopsy.
My surgeon wanted to do a major surgery called a 'whipple' which is bad news.
worse news-- according to a new pet /ct done 2 weeks ago ,the tumour is not only back,but it is larger than before.
the chemo i have been on has been working great on shrinking the tumor in my abdomen,
but apparently has no effect on the bile duct tumor,so we have to come up with a new formula.
when i had the appt with the surgeon about the surgery,i was quite upset,as i had already researched the whipple surgery and i had a really bad feeling about it.
when i got home i called and gave my onc an earful.she said she would speak with the surgeon and let me know what was going on.
According to my onc 5 doctors had quite a heated discission about my case.
my onc and my GI guy were against the surgery as they thought it too drastic to put me through,when i was asymptomatic and the cancer was a secondary cancr (colon,as opposed to pancreatic or bile duct cancer ,which the operation is normally used for)
their plan was to try a diff chemo and see how i respond.they are hoping since they placed a stent in the bile duct,that would keep it open.( if it gets blocked it could mean liver failure)She also said there was acouple things she would try first,but did not elaborate.
My onc says that if i start to show symptoms,all plans may change quickly.
she said she had no idea when i would begin to show symptoms ,could be 3 months ,6 months , could be a year,but when it begins ,i could become critical fast.
So ,my onc and GI guy won this battle ( I AM GLAD) and when Bonnie ,my main care giver heard this she cried with relief,telling me she had researched the surgery herself and did not want me to do it.My onc said she has never seen anyone come out of this surgery without a serious complication.It may prolong your life by a year or so ,but at what cost?
anyhoooo,i had chemo on tuesday and in a couple weeks we should have a new plan.
sorry to be so long winded,but if i can't vent here,where else??
I just wish I knew a way to make my 80 yr old aunt not be so upset,she is really the only family i have ,and i try to sugarcoat things so as not to upset her ,but she's a smart cookie and I can't get away with anything.
well I guess i'll shut up now,and update in acouple weeks when i have more news.
thanks for the shoulder
kATE

Comments

  • melissaincali
    melissaincali Member Posts: 34
    I am glad too
    I hope they come up with a new plan and hope that it does not involve the whipple. I am glad the oncologist and GI guy won that battle. My husband, who was a physician himself, always told me he was DNR, DNI, and DNW....do not resuscitate, do not intubate, do not whipple. I don't want to scare you if that is the treatment decision that is ultimately decided upon, but as a physician my husband also did not see many people come out of that surgery without complications. Sounds like you have a great oncologist who is a wonderful advocate for you. Wishing you better news soon~
    Melissa
  • JDuke
    JDuke Member Posts: 438

    I am glad too
    I hope they come up with a new plan and hope that it does not involve the whipple. I am glad the oncologist and GI guy won that battle. My husband, who was a physician himself, always told me he was DNR, DNI, and DNW....do not resuscitate, do not intubate, do not whipple. I don't want to scare you if that is the treatment decision that is ultimately decided upon, but as a physician my husband also did not see many people come out of that surgery without complications. Sounds like you have a great oncologist who is a wonderful advocate for you. Wishing you better news soon~
    Melissa

    Kate
    I am so sorry that 2010 has gotten off to such a rough start for you. I am glad though that you are so pro-active in your treatment and that your oncologist is really there for you. Take care and know that you are in my prayers.
    Joanne
  • KATE58
    KATE58 Member Posts: 299

    I am glad too
    I hope they come up with a new plan and hope that it does not involve the whipple. I am glad the oncologist and GI guy won that battle. My husband, who was a physician himself, always told me he was DNR, DNI, and DNW....do not resuscitate, do not intubate, do not whipple. I don't want to scare you if that is the treatment decision that is ultimately decided upon, but as a physician my husband also did not see many people come out of that surgery without complications. Sounds like you have a great oncologist who is a wonderful advocate for you. Wishing you better news soon~
    Melissa

    Thanks for that
    Thanks for that Melissa.
    that made me feel a whole lot better.
    I had pretty much decided not to do the surgery,
    but not being a doctor I could only go on my reasearch (and that was not good.)
    and was really unsure about it.
    but was dreading argueing with the surgeon and glad my onc
    and GI doc agreed with me and
    did it for me.
  • Fight for my love
    Fight for my love Member Posts: 1,522 Member
    Hi Kate,I am glad to know
    Hi Kate,I am glad to know you have very good doctors and they are really responsible for you.I wish the best for you.Good luck with the chemo.Take care.
  • Kathryn_in_MN
    Kathryn_in_MN Member Posts: 1,252 Member
    KATE58 said:

    Thanks for that
    Thanks for that Melissa.
    that made me feel a whole lot better.
    I had pretty much decided not to do the surgery,
    but not being a doctor I could only go on my reasearch (and that was not good.)
    and was really unsure about it.
    but was dreading argueing with the surgeon and glad my onc
    and GI doc agreed with me and
    did it for me.

    Taking charge!
    I'm glad you did the research and were pro-active on this. It is good that you can try different chemo first if the whipple is so awful (I'm ignorant on that procedure - didn't know how bad it is).

    It is nice the doctors duked it out and you didn't have to get in a big battle yourself. I hope the new plan works well and no one will need to bring up the whipple again.
  • tootsie1
    tootsie1 Member Posts: 5,044 Member
    Good!
    Kate,

    I'm glad you stood up for yourself and got a new plan! I pray everything will go well for you!

    *Hugs*
    Gail