My Mystery Cancer - should I test for gene mutation therapy?

SisterSledge Member Posts: 332 Member
edited February 2011 in Rare and Other Cancers #1
After more than five years suffering under a diagnosis of IBS and then serious weight loss and low energy set in a year ago, I got a new doc who didn't think it was IBS and got me feeling well enough for a colonoscopy. Rather than IBS, I had a huge colon tumor (13 centimeters). I had surgery to remove the colon tumor in Sept/2010 with a resection of colon...tumor tested benign and all looked good for me...after a few months it was like having a new life!

However, a car accident this January/2011 caused some pain that made me seek a checkup. Found pain was caused by swollen liver and CT scan revealed two big masses in liver (liver and other organs were clear when checked back in 7/2010 before colon surgery)...except a "node" seen on lung. Doc says he's pretty sure it is colon cancer mets to liver. Biopsy to largest liver mass positive adenocarcenoma. Going back in a few days to discuss treatment.

Okay, back from doc and he says NOT colon cancer but isn't sure what sort of cancer it is yet...thinking likely bile duct cancer or pancreas cancer....says there are a few spots on lungs but doesn't think it's lung cancer. The masses at liver are mets from somewhere, so it's stageIV for me and he says treatment is the same for any type cancer I'm likely to have. He said that there isn't much chance for me...1-2 months if I do nothing, perhaps 6-12 months with chemo...who knows after that. I'm starting Gemcitabine and Cisplatin on 2/17.

Age 50, feeling generally healthy. No symptoms or other problems and I don't have any of the known issues that usually lead to bile duct cancer.

Wondering about gene mutation testing to improve treatment choices...Anyone have any info or suggestions for me?


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  • SisterSledge
    SisterSledge Member Posts: 332 Member
    unknown said:

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    Thank you Rose
    Yes, I will get a second opinion...I didn't like the doc at all. Can you believe he had to yawn twice during the time he was telling me about my cancer and treatment??? He didn't seem engaged or interested in possibilities or much hopefulness :(

    The thing he said about treating them all the same is that most likely my cancer is bile duct origin but if pancreatic or gall bladder or lung it would be the same treatment for them as well. My main worry is that the masses on my liver grew so most likely did the benign tumor I had in my colon.

    The state I'm in is stageIV something...feeling scared and sad. I have pain in my liver area but generally feeling great - good appetite and energy levels are pretty good. I'm 5' tall and weigh 109 so there's not much of me to work with.