Esophageal Cancer - colon cancer - now maybe peritoneal carcinomatosis

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Jules11
Jules11 Member Posts: 8
edited March 2014 in Esophageal Cancer #1
I don't know if anyone else has experienced this but I am at wits end! This is long and I apoligize but I hope someone responds.
My husband (53 years old) had his entire esophagus removed 2 1/2 years ago - as well 30 lymph nodes - a couple of the lymph nodes did have cancer also. He had chemo and radiation for about 6 months. He was okay until April 23 when he started throwing up everything and had pain in his stomach (he had not been feeling really himself for quite some time - he had gone back to work and was so exhausted when he got home) I took him to the same hospital (ER) where his previous surgery was done. They said he had a blockage in his small intestine. Of course my first thought was is it a tumor? They said it was probably scar tissue - they wanted to treat it non-surgically first - they said that was the procedure. They didn't want to do surgery if they didn't have to since it might cause more scar tissue. After 4 weeks of no apparent change in my husband they decided to operate - again after the surgery I asked was there a tumor - the answer was no. A few days later I got a call that I was to come to the hospital for a family meeting - well I knew what that meant. We were told the piece they removed from his colon was a cancerous tumor - the same cancer cells that was in his esophagus. SHOCK!! They sent him home the next day. By the way, they didn't give him any nutrients the first couple of weeks he was in the hospital - he was losing so much weight - they finally inserted a pic line after I called his primary care doctor to say how bad my husband looked.
So a couple of weeks ago my husband had a pet scan to see if the cancer had spread elsewhere - my hunch was yes - where had this cancer been for the past 2 years??
The pet scan shows something but they are not sure - it may be peritoneal carcinomatosis. I asked his onc how do we find out if it is cancer - he said well we wouldn't want to do surgery - it would cause scar tissue - I thought I WOULD SCREAM! Let's see - operate and find out if he has peritoneal carcinomatosis or give him the chance of getting scar tissue. I think I would settle for the scar tissue. So now what I have found out about peritoneal carcinomatosis is that it can be caused when surgery is done on the colon and there is cancer in the colon - when the colon is cut the cancer seeds into the abdominal cavity. Not sure if there is a way for a surgeon to prevent that from happening. Chemo is not effective for this type of cancer because it can not reach this cancer. My husband is in pain everyday, not gaining weight - some days he can barely move. The onc was baffled and told my husband to come back in 2 weeks that he wanted to talk to some other docs and the radiologist - don't you think he should have done that before my husband's appointment?? So the onc called me friday and said now he wants to see my husband sooner - guess after talking it over he realized how serious this can be. I think we need to be told all the facts no matter how bad - my husband is in denial, which I can't blame him. We have decided to get a second opinion after meeting with his onc on thursday. Has anyone had this type of cancer after having Esophageal Cancer??
Thanks
Jules
jucocap@hotmail.com

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  • Unknown
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  • Jules11
    Jules11 Member Posts: 8
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    unknown said:

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    Thank you
    Thank you for your reply. It does help! We live in Boston, MA - my husband has been a patient at BU Medical but we are going to go to a Cancer Center (Dana Farber) for a second opinion.
    Thanks again
    Jules
  • Tina Blondek
    Tina Blondek Member Posts: 1,500 Member
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    Jules11 said:

    Thank you
    Thank you for your reply. It does help! We live in Boston, MA - my husband has been a patient at BU Medical but we are going to go to a Cancer Center (Dana Farber) for a second opinion.
    Thanks again
    Jules

    Welcome
    Hi Jules
    Welcome to our discussion board. You will find that it is most helpful in many ways. I was a caregiver for my dad. He passed away in March after a 16 month battle with esophageal cancer which metasisized to his liver in December. So sorry you and your husband are having to go through all of this. You are right in wanting a second opinion. I totally agree with you. Any dr who says he wants to wait and see what happens, does not know what he is talking about, or how serious your husbands situation is! I also agree that I would live with the scar tissue after surgery to remove the tumor! Best of luck to both of you. Keep us updated when you can. We will be thinking of you and praying for you daily.
    Tina
  • Grandma Jo
    Grandma Jo Member Posts: 36
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    peritoneal carcinomatosis
    Dear Jules I saw your letter today and I can so relate to you and your husband. My daughter has esophageal cancer being diagnosed in June of 2009. She had radiation and chemo at once for a month. She then had surgery to remove 2/3s of her stomach and 2/3s of her esophagus.Now in June she was diagnosed with peritoneal carcinomatosis . She started chemo yesterday with oxaliplatin, fluoruracil,and leucovan calcium. Today she is on her way to the oncologists office to have the pump removed and more meds added. She began throwing up when they first began the treatment and has been throwing up since yesterday. Has anyone had similiar reaction with the vomiting? She can not eat or drink much at all.Help please with any ideas Grandma Jo
  • Tina Blondek
    Tina Blondek Member Posts: 1,500 Member
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    peritoneal carcinomatosis
    Dear Jules I saw your letter today and I can so relate to you and your husband. My daughter has esophageal cancer being diagnosed in June of 2009. She had radiation and chemo at once for a month. She then had surgery to remove 2/3s of her stomach and 2/3s of her esophagus.Now in June she was diagnosed with peritoneal carcinomatosis . She started chemo yesterday with oxaliplatin, fluoruracil,and leucovan calcium. Today she is on her way to the oncologists office to have the pump removed and more meds added. She began throwing up when they first began the treatment and has been throwing up since yesterday. Has anyone had similiar reaction with the vomiting? She can not eat or drink much at all.Help please with any ideas Grandma Jo

    Hi Grandma Jo
    So sorry you

    Hi Grandma Jo
    So sorry you and your daughter are going through such a rough time with this. Just when you thought you were out of the woods. Hmmm....I am thinking she could be having a reaction to the new meds, or she might just have to get her nutrition from a feeding tube. I think she needs to be put on an iv for hydration as well. Best of luck to both of you. Let us know how she makes out.
    Tina
  • tammylouhay
    tammylouhay Member Posts: 11
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    Hi Jules,
    I am so sorry that

    Hi Jules,

    I am so sorry that your husband is struggling, and that you are both having to go through this right now. I can only imagine your frustration as time is ticking by, and so baffled that doctors who deal with these situations day in and day out, have not understood how urgent every second is when you are waiting for "news" or waiting to get started on the next stage of your treatment.

    I am so glad you are seeking a second opinion as it sounds as though your doctor wasn't immediately sure what to do.

    You are doing all the right things. Seeking support, information, and helping to navigate your husband through this horrible process.

    I wish you both the greatest success and comfort with your next appointment.

    My thoughts and prayers are with you both!

    Tammy