For the Newbies particularly dx IV

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hopefulone
hopefulone Member Posts: 1,043 Member
edited March 2014 in Colorectal Cancer #1
You old timers are also welcome to read, but most of you know our story. I truly believe it's important to reiterate if it helps just ONE person and inspires one person to keep the hope alive.


Hubby dx stage IV in Dec 06 3 days before xmas after a routine colonoscopy. Our life changed dramatically that day as yours probabaly has. Colon resection 2 weeks later and PET confirmed multiple mets to liver. Started chemo in March and basically told unresectable and probably would not be ever and 2 year "prognosis" at best with chemo. We refused to just accept that. I researched...A LOT, found this site, got much needed support and asked a ton of questions ) . Oncologist convinced liver would never would be resectable and no other options possible either .) No end in site for chemo. Fast forward.. contacted numerous docs, emailed, teaching hospitals, etc. etc. you name it . Insisted on seeing liver surgeon again persistant that something could be done. treatments completed, and long story shortened(ok not so short!) in October deemed resectable, had the liver surgery and pronounced NED. 6 weeks later, ct showed "advanced progression" . We were devastated. We couldn't believe it after 6 weeks?, a ct, mri and finally a PET scan later, confirmed that there was NO uptake and considered NED (no evidence of disease). Believe now it's scar tissue and benign or dead spots.

I'm sorry to make this so long, but want you to understand that several times we were given very dismal results and prognosis during the last year and 1/2 . Today, 6 mos after liver surgery, and results yesterday,hubby is still currently considered NED .... Telling you this because it's IMPORTANT that you do not give up hope, that you research and be your own advocate , that you ask every question you can think of and that you never give up, that you get several or many opinions, that you believe anything is possible with God's help. We don't know what tomorrow will bring,but then nobody does. I found a card my mom had sent me years ago when I was going through another anxious time that said "Don't worry about tomorrow God is already there". It's hard with this disease, but you have to keep the faith. Faith makes things possible..not easy. Keeping you ALL in my prayers.
God Bless,
Diane

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  • pamness
    pamness Member Posts: 524 Member
    #2
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    I am a relative newbie - stage 3A - cancer free now but going for 6 mos. scan in may. Can I ask where you - your husband are being treated? I am in Boston - medical capital of the country - but in case something happens (I am currently at MGH) would like to know where else you looked.

    Pam
  • Faith4Cure
    Faith4Cure Member Posts: 405 Member
    #3
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    Diane,
    I have heard your story before, but I never tire of it! It is such a great story and provides so much hope for so many. You've both come a long way!

    Faith
  • renee2u
    renee2u Member Posts: 27
    #4
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    What great news hopefulone!

    I was dxed stage 4 Squamous Cell Carcinoma...

    http://www.mycrcconnections.com/

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