Pushing For MY Life & Not Waiting

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mojogirl67
mojogirl67 Member Posts: 306
in Colorectal Cancer #1

After crying a while and thinking of all the what if's, I picked up the phone and called MUSC where I had my liver and colon surgery. My liver surgeon's nurse called me back, heard me out and gave me something I needed...a plan and HOPE without waiting. The tumor board meets every Tuesday to go over cases and make plans of treatments for patients. The nurse told me to get the last two CT scans to her and she would give them to my liver surgeon who acted so quickly and got me to surgery for the liver and colon. He wasn't in today but she was getting a message to him and said she would see that he presented my case to the tumor board this Tuesday. My oncologist here was talking waiting to get the mutation panel which could take 4 weeks, so he could send it with the referral. I signed papers to donate my tumor to the tumor bank at MUSC. Why would it take another 4-6 weeks for my oncologist to send out for a test for something that should be on file at MUSC anyway? When I asked, he said sometimes others don't do a full panel which makes no sense to me either. Wouldn't you make a phone call and check first???? Hey, it's nothing but MY LIFE we're talking about right? I realize I am not the only patient being seen but small amounts of time and choices determine huge outcomes. Making a simple phone call and taking a step could make the differenc in so many patients' lives, including my own. It frustrates me beyond expression. So, tomorrow I will get the CT scans on their way to Charleston myself (something my doctor should have done) and hope for the best. I am praying for other options besides chemo. It just seems like there are way too many simple steps skipped on patients dealing with life or death that could make a world of difference in the agony of waiting for, going thru, or planning treatment against a disease that brings so much suffering and misery to patients and families.  Love and light to all of you...hugs, M

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  • Trubrit
    Trubrit Member Posts: 5,796 Member
    #2
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    It is good to be proactive

    I am so glad that you are on the ball, and didn't wait until your Oncologist remembers to do what he is supposed to do.  You hit the nail on the head, you are not his only patient, and sometimes people slip through the cracks. By doing it yourself, you get to save him from doing it, or maybe even getting too busy to get right on it. 

    Onward and upward, Mo.  I hope you can meditate and get to a place of peace while you are waiting. 

    Tru

  • Kazenmax
    Kazenmax Member Posts: 463 Member
    #3
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    You have to advocate for your

    You have to advocate for your health. I'm not saying doctors care, they just have a lot on their plate. You have to take this on for you. No one else will. 

    I also believe the best way to beat this thing is to get it the **** out of your body! I am hoping your find a great surgeon. Keeping fingers crossed...

    K

  • SandiaBuddy
    SandiaBuddy Member Posts: 1,381 Member
    #4
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    Self-advocacy

    You sound so much better, now that you are in action.  If we did not advocate for ourselves, I hate to imagine the result.  Good for you.  And good luck!

  • feckcancer
    feckcancer Member Posts: 189 Member
    #5
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    You go girlfriend. x

    You go girlfriend. x

  • SnapDragon2
    SnapDragon2 Member Posts: 717 Member
    #6
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    You have been on my mind and

    You have been on my mind and I love seeing that you found the answer within yourself!

  • AnneO1965
    AnneO1965 Member Posts: 182 Member
    #7
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    You go girl!!!

    This disease can make you feel so helpless. I'm proud to see that you are going to kick butt and take names! As long as you are fighting, you can feel good no matter what the results turn out to be.

    Keeping you in my thoughts and prayers,

    Anne

  • BigE
    BigE Member Posts: 2
    edited December 2019 #8
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    Keep fighting

    Keep fightingg it's ok to be sad once in Anjelica but your mind is the most I,portent thing you need to move you forward. Going thru a simililiar experience. Have had 6 folios treatments. Will have surgery on my liver and colon to remove cancer in early February at MSK in Ny.Y.

  • beaumontdave
    beaumontdave Member Posts: 1,280 Member
    #9
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    I knew you'd come up swinging

    I knew you'd come up swinging, at some point. You go M, get what you need, find the best treatments and people for this fight,  and in this season of love and faith, get a good helping of that too...................................Dave

  • myAZmountain
    myAZmountain Member Posts: 417 Member
    #10
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    Now thats more like it!

    Hope you can see a lung surgeon that specialises in cancer--they are the best at reading scans and tracking nodules IMO. I got so many inconsistent readings of my over half dozen lung CT scans--the size of the nodules vary from scan to scan becasue of where the Ct machine "slices" the reading, if you are lying on the table lopsided, if you are not holding breath etc--Radiologists are not the best at really seeing malignancy on a scan, and you do have to have a series of scans to see the progression or regression to really determine if cancer if nodules too small to PET scan. And the majority of nodules are benign statistically. If all your spots are contained in one lobe and the rest is clean you may be able to have lobectomy, if the larger nodule is in an accessible area of lung possibly a VATS if the others look benign--theres are so many scenarios for you IMO. I am just so surprised they have not been including your chest in your followup scans???The tissue slides from your original tumor should still be accessible, not sure what the 4 week hold up is--but I think getting to a larger more urban hospital is a very smart move! Hugs and love!

  • Annabelle41415
    Annabelle41415 Member Posts: 6,742 Member
    #11
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    Being Your Own Spokes Person

    Sometimes you have to be the advocate on things, especially when doctors see case after case.  It's a good thing that you are calling to get the ball rolling on this as they would just move on to another patient.  Sometimes being the squeaky wheel does get you the oil you need to get things done.  Keep doing what you are doing, you will feel better about the direction of your treatment.

    Kim

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