Not results I wanted to hear

Julie 44
Julie 44 Member Posts: 476 Member
edited March 2014 in Colorectal Cancer #1
Well I went to oncologist and got the results back from my CAT scan..Not what I was hoping for...I have 6 lesions on my liver. Ranging from 4.2-10...What is SUV value of lesions??.They said the overall uptake of the liver is that of a diffused heterogeneity. Does anyone know what this means???? Also I have a paraaortic lymph node 1.1cm..What does that mean??? The oncologist said the only thing he can offer me is chemo...I should go back to Memorial Sloan Kittering Cancer Center in NYC again..They an offer more there for me..He said I will never be cancer free that the best we can do is keep it under control...That I am now stage 4...I NEVER expected this at all...I am devestated by this news...My family is all in shock right now...I will call Sloan on monday and take it from there.....Unreal........JULIE

Comments

  • mommyof2kds
    mommyof2kds Member Posts: 519
    #2
    HI Julie, sorry to hear that
    HI Julie, sorry to hear that you got that news. But try and stay positive, I am sure there is a treatment plan out there that is perfect for you. Hang in there. Petrina
  • idlehunters
    idlehunters Member Posts: 1,787 Member
    #3
    mommyof2kds said:

    HI Julie, sorry to hear that
    HI Julie, sorry to hear that you got that news. But try and stay positive, I am sure there is a treatment plan out there that is perfect for you. Hang in there. Petrina

    Know How U Feel
    Julie..... I know you are feeling overwhelmed right now. It sucks to hear that " you will NEVER be healed" stuff. I refused to believe anyone who said that... NO! I have hope, strenght, endurance, FAITH and a strong will NOT to give in to the beast. My family needs me too much. I was consumed with the crap too.... colon, abdomin wall, liver, lungs... and many were very large. All mets non-operative. I thought my life was over. I too was devastated. You are doing the right thing by going to Sloan or any place you need to go to get your CURE. It made me so sad...and mad when doctors kept insisting how terminal I was. NO! They cannot tell me that. GOD only knows that. YOU KEEP THE FAITH!!!! It was what got me thru all my stuff and finally NED last wednesday! Do not believe the doctors that want to give up on you...and only treat you. I have read so many articles saying that is what a lot of doctors aim for.... they make a killing off our chemo treatments! As do the drug companies. Find you a doctor that has your "HEALING" at heart... not your TREATMENT. I will keep you in my prayers as I know that is what got me my miracle. PLEASE...PLEASE.... Tell yourself..and your family... NO! I am not accepting this! Wipe those tears and put that smile back on your face and move on. You will get through this.

    Peace.... Jennie

    Jennie
  • christinecarl
    christinecarl Member Posts: 543 Member
    #4
    I am very sorry
    I pray that there is a way for you to beat this.
  • johnnybegood
    johnnybegood Member Posts: 1,117 Member
    #5
    christinecarl said:

    I am very sorry
    I pray that there is a way for you to beat this.

    julie
    you have been here about as long as me and i know this is what we all fear.i was dx in sept 08 as stage 3.i will be getting my cat scan done the 25th of jan and am in fear of it coming back.i guess all we can do is live our lives one day and one breath at a time.i am scared for you but just remember you fought hard once now you need to fight harder you are in my prayers..Godbless...johnnybegood
  • Sundanceh
    Sundanceh Member Posts: 4,392 Member
    #6
    Julie :)
    I'm sorry to hear this from you, Julie - it saddens me.

    I tried to do some research on the diffused heterogen - but it's deep and I could not give you enough quickly without looking at this some more - lots of technical terms to decipher.

    I can answer the one about SUV - it's the "Uptake Value" that is shown in our PET scans that light up on those spots that have indication of cancer - the higher the value, the more likely that cancer is present.

    Please consider getting a 2nd opinion - it does let you weigh what you here and gives you a choice and some empowerment on your own care - I believe that cancer is a "business" too as Jennie eluded to - many people are making a living on Cancer.

    I'm beginning to think that there are so many doctors willing to treat and just keep alive as "cash cows" and not really trying to cure us. The biggest reason that I left my Cancer Center after 5 years - they were just milking me for $$$.

    At my teaching hopsital, the doctors are paid salary and not by "patient." So consider a teaching hospital as an alternative - they study there and stay up on the latest - I had the latest robot surgical system at my hospital - due to its cost many facilitires can't afford.

    So, absorb the news and then resolve to move on - I've read so many people doing different things and succeeding...and our Jennie from Death's Door to NED in less than 5-months - some pretty good stuff.

    I'm thinking of you and praying for peace and calm for the holidays.

    -Craig
  • Unknown
    Unknown
    #7
    This comment has been removed by the Moderator
  • dianetavegia
    dianetavegia Member Posts: 1,942 Member
    #8
    Oh Julie
    Julie, I am so very, very sorry to hear this. I had prayed for good news.

    PLEASE seek other opinions and make sure they explain every term to you. I looked up a word or two and got some very strange 'answers'.
  • thready
    thready Member Posts: 474
    #9
    Diffuse hetergeneity
    Julie,
    This just basically means you have a multiple scattered lesions in your liver.
    I am so glad you are going to contact Sloan Kittering.
    Best wishes
    Jan
  • Annabelle41415
    Annabelle41415 Member Posts: 6,742 Member
    #10
    I'm so sorry
    I'm sorry you didn't get the news you were hoping for and I was so hoping that things were different. Please don't give up on being an advocate for some other place to be seen or other options. I just don't know what to say, but I am thinking and praying for you.

    Kim
  • mom_2_3
    mom_2_3 Member Posts: 953 Member
    #11
    Assistance
    Julie,

    If there is anything I can do to assist you in getting a second opinion at MSK, please let me know. it is a fantastic treatment facility. You won't be sorry to go there.
  • Kathleen808
    Kathleen808 Member Posts: 2,342 Member
    #12
    Julie
    Julie,
    I am so very sorry that you got such hard news. I know it will take a while to regroup. You have a great plan with SKCC. Warm and healing thoughts to you and your family.

    Aloha,
    Kathleen
  • sfmarie
    sfmarie Member Posts: 602
    #13
    UNREAL
    Is right. I have followed your posts and am saddened by your news. I have heard great things about Sloan, and there are many things that can be done to treat the liver. Check our www.beatlivertumors.org. You are in my prayers. Marie

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