Update - It was something

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CarrieN
CarrieN Member Posts: 11
in Esophageal Cancer #1

I had an open thoracotomy last Thursday where they removed a portion of my lung for biopsy. Unfortunately, the results show metastatic disease. I am now stage 4. The frustrating thing is that the nodules they tested are the ones that were there last November,  so I have techinally been stage 4 all along. After my chemo and radiation, they just did a Pet, and  not a ct scan, so any potential growth of the nodules weren't seen bc they are too small to light up in a pet scan. I am so frustrated with myself for missing this. I could have been on a more effective treatment this whole time.  But, I know I need to move past this so I  will.

Now what? MDA wants me to enter into a clinical trial. My husband and I decided that we want to get 2 more opinions from other hospitals here in the Houston medical center so we can lay out all of my options.  

This has been so hard on my husband and he has been great through all of this. I wish I knew how to be more supportive of HIM.  I really think this is harder on our caregivers than it is us. 

Mostly,  I am so upset about having to let my 8 year old daughter know the cancer has come back. She didn't handle it very well when I was going through it last time.  There were so many nights when I would lay with her as she cried herself to sleep because she was so scared I was going to "leave her." How in the world do I tell her it has come back? How do I do this to her again?

On a good note, my swallowing is finally better!!! It took 5 dilations before it stayed open. I now have been able to swallow solid foods for over 2 weeks! We decided to keep my feeding tube in in case I need it with upcoming treatment.  

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  • paul61
    paul61 Member Posts: 1,391 Member
    #2
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    I am so sorry to hear your cancer has returned

    Fighting cancer once is difficult enough, but to have to deal with it again must be particularly frustrating. I am so sorry that you have to tell your daughter that your cancer has returned. When I was being treated for cancer one of the things that upset me the most was the effect my cancer had on my wife and our lifestyle. We were very active retired folks and the effects of recovery from surgery and chemotherapy keep me at home most of the time for almost six months.

    There are a number of Stage 4 survivors here who seem to be doing fairly well with their treatment. I would definitely get at least one additional opinion on the best way forward. Sending positive thoughts for an effective treatment program.

    Best Regards,

    Paul Adams

    McCormick, South Carolina

     

    DX 10/2009 T2N1M0  Stage IIB - Ivor Lewis Surgery  12/3/2009
    Post Surgery Chemotherapy 2/2009 – 6/2009 Cisplatin, Epirubicin, 5 FU
    Seven Year Survivor

     

  • Deathorglory
    Deathorglory Member Posts: 364 Member
    edited August 2017 #3
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    Sorry to Hear Your News

    Hello Carrie,

    I'm so sorry to hear that your cancer is back and in your lung.  That's what happened to me.  In 2008 I was stage III and had chemo/radiation, surgery then bonus chemo.  I tested clean and thought I was done with it.  Then in 2011 a nodule in my lung started growing and it turned out to be metastatic EC.  I was HER2+ and was put on herceptin along with folfox.  I was initially offered a clinical trial, but when the HER2 testing came back, herceptin replaced the trial.  What are they going to do as far as treating you?  Have they given you a prognosis?  I know I didn't like mine, so I went to Hopkins for a 2nd opinion.  Turned out that Hopkins said my doctor was recommending the best possible treatment and that I should stay with her, but at least I tried.

    My wife was with me that time when we got the news, so I didn't have to break it to her, like I did the first time.  That was very difficult, and we don't have kids.  I can't imagine how hard it'll be to tell your little girl.  I hope you can find the strength somewhere inside yourself.

    Wishing you the Best,

    Ed 

  • CarrieN
    CarrieN Member Posts: 11
    #4
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    Thank you

    Thank you both for your support.  I will stay positive and push my way through this. I don't have a choice!! 

    MDA has recommended a clinical study that will have me in 1 of 3 groups. One group will be on a combination of nivolumab plus ipilimumab (types of immunotherapy), group 2 will be on nivolumab and standard chemo (either XELOX or FOLFOX), and group 3 will be on just standard chemo. They said that these immunotherapy drugs have been FDA approved for other cancers, but not esophageal cancer. We didn't even discuss my prognosis.  

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