Hi from St. Louis, Missouri

Discussion Board Forums Introductions! Hi from St. Louis, Missouri

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    Hi Lsteffen,

    Welcome to our community.  I hope you have found the many resources for patients on the Cholangiocarcinoma Foundation website.

    I found myself in a similar situation after surgery then adjuvant chemo plus radiation.  Due to vascular invasion, tumor size, and poor differentiation, I was also considered at high risk of recurrence.  Not nice news to hear.  In my case, I am now – gratefully- 30 months past surgery without recurrence so far, but realistically, I still face considerable risk of recurrence.

    I am not a doctor, so am not someone who can dispense medical advice.  But here are some ways I found to deal with the risk of recurrence:

    Be sure your doctors have a good surveillance plan.  A typical surveillance plan is four scans (chest-abdomen-pelvis) each year during years 1-2 post surgery, two scans per year during years 3-5, and once per year thereafter.  Blood tests are usually taken at the same time, but you may want to consider asking for more frequent CA 19-9 testing if the marker has tracked well for you – namely, was it elevated upon diagnosis then lower after treatment.  I pushed for monthly CA 19-9s my first two years (probably overkill) and now every two months.  This post-resection surveillance approach reflects what many patients have reported on this discussion board, and is described in some (not all) medical guidelines.  See for example the ESMO (European) Clinical Practice Guidelines for Biliary Cancer, which you can find via search engine.

    Get exercise.  There are some studies showing for other cancers that patients who get regular exercise have lower rates of recurrence than those who don’t.  To my knowledge, no similar study has been done for our rare cancer, but exercise is generally good for people so why not try this?

    Live your life.  It can be hard sometimes to shake worries about recurrence, but I try to focus on better things like doing things with my family.

    Others on the board may have additional suggestions for you to consider.

    Take care, regards, Mary




    Lsteffen, welcome to the club no one applies for, thank you for sharing your story with our community, You are seeking common answers, here are a few…whoever did your resection has a tumor sample frozen for future analysis, so don’t panic I believe you can request your sample to be profiled with the help of your oncologist. Eat healthy, avoid greasy,oily, fatty foods, limit or stop alcohol intake, consider a cannabis product if available in your area, We all feel uneasy ‘waiting for a recurrence ‘ as you put it. Live your life, start today, do everything you always hoped to do , take that vacation, buy that grown up toy, have fun every chance you get, and most of all, don’t just sit on the couch and wait for something you don’t want. There is ten out of 100 that skate clean on the old statistics they are citing, things are changing and I was there, there are some researchers that are very excited about some of the breakthroughs made in the past year. There were  some hopeful presentations in Salt lake this year and I recommend you go next year (imagine being in a room with more than 100 cholangiocarcinoma patients) There is reason to be hopeful not worried if you can. The stage is set for you to live with a curative surgery so get going ! My best,  Pat


    I was diagnosed in September 2017 and had resection with gall bladder removal.  Margins were clear but there was vascular invasion so I am considered Stage IIa NO/MO.  I started Xeloda in December and will be finished in 12 days.  Yeah!  I’ve been watching the videos from the conference in February is learned there is a 90% chance of reoccurrence due to vascular invasion.  I am wondering if anyone else has a similar set of circumstances and if, after chemo, you did anything of a proactive nature beyond what the doctors’ recommended?  My tumor was not tested genetically because there was no metastasis.  I hate to just wait for reoccurrence, but perhaps I am being overly worrisome?  Thanks to anyone for advice.

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