It came back

racjaa
racjaa Member Posts: 1
in Rare and Other Cancers #1

I am new to this site and wondering if there may be others out there like me. I was diagnosed with extrahepatic bile duct cancer and had it surgically removed with chemo after for 6 months (gemzar and cisplatin).  I thought I had beat it but two years later, cancer marker went up and it looks like a small spot in a lymph node.  I had a biopsy done and sure enough there were cancer cells.  My appt. with the oncologist is next week.  I had really started to research this but I am so confused with the number of articles and theories and opinions out there.   How do I kill this thing.  This cancer is so rare and I had no risk factors for it.  I had no big problems with whipple or aftermath or with chemo.  I want this gone.  Are there others like me out there?  I would be interested in what you choose to do at this point.  I am scared but ready to fight but I don't know how.  I can barely keep the chemo drugs straight much less the theories out there. I have tried to look through new research but with a rare cancer there is not a lot out there.  I am 65 so I am not ready to give up yet  Strange thing is that the spot actually got smaller from CT scan to Pet scan (about 6 weeks).  Maybe my own immune system might be helping.  So much going into research and yet we haven't gotten very far in curing this dreaded disease.

Comments

  • terabee
    terabee Member Posts: 3
    #2
    Dad in similar situation

    Hi there,

    So I've recently become the primary caregiver for my father who was initially diagnosed with cholangiocarcinoma in February 2014. I'm forgetting all the terms and what exactly what was removed, but a large part of his liver and along the areas where it could be removed along the bile ducts, his gallbladder, etc. He went through 16 weeks of chemo (gemcitabine and cisplatin), and 5 weeks of radiation. All seemed clear.

    In June 2016, he had another major surgery because, it is believed, the radiation affected his stomach. His small intestine was re-routed to another part of his stomach, he was placed on a limited diet, etc. 

    And then, March 31 of this year (2017), the surgical oncologist went into his abdomen on an exploratory search to find out if there was a blockage somewhere due to what they hoped was scar tissue (even though his tumor markers were up) from his various surgeries, radiation, etc., and my father ended up waking up to a colostomy bag and news that the cancer had become metastatic in spots on his intestine and rectum. He is 63, about to turn 64 in October. We just met with the oncologist Tuesday, May 2, and he will be starting more rounds of chemo on June 13th, with the same combo of gemcitabine and cisplatin, with follow-up CT scans. If that doesn't work in shrinking/containing the spotty "studs" of cancerous cells, he will be put on a different combo of chemo, and, in the meantime, is having his biopsies sent to a genetic lab to determine whether or not the cells have mutated to be able to have clinical trials performed with other therapies... in other words, we were given several options for attempting to slow down the process of metasticizing. 

    I don't know if any of these explanations help, but there are definitely options out there, most likely. He's been beaten down pretty bad, and he's not the most optimistic of folk, but my mom and I are trying to root him on. OH, and he's being treated at The James Cancer Center at The Ohio State University...

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,486 Member
    #3
    racjaa and terabee, I can't

    racjaa and terabee, I can't comment on your type of cancer, but I wanted to add how sorry I am to hear your situation.  "Rare" cancers are truly ORPHAN cancers.  racjaa - you have the right attitude so go and get it!  terabee - your father has raised a wonderful daughter, and please know, none of us fight alone.  We couldn't go through any of this until without the love and support of famiy.

  • TMACA
    TMACA Member Posts: 3
    #4
    Risk Factors

    Risk factors mean nothing where cancer itself, or any other problem, is concerned.  All they are are statistics which identify that one person has a greater chance of getting some disease than does another.  They don't mean you will or will not get something.  They have no meaning concerning how bad it will be if you do get whatever it is.  For example, the greatest risk factor for lung cancer is smoking.  Yet lots of smokers never get it, and many who never smoked do get it.  All risk factors are good for, really, is to tell you, if you have them for some disorder, that you should pay more attention watching for signs of that disorder than others should.

    And once you have some disease, your risk factors become completely meaningless.  Having the risk factors or not having them has nothing to do with your treatment, prognosis, or survival.

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