cldunn5's Journey with Bile Duct (Cholangiocarcinoma) Cancer

Patient: Bile Duct (Cholangiocarcinoma) Cancer

Patient Info: Currently in active treatment (initial surgery, receiving chemo rounds/radiation), Diagnosed: over 5 years ago, Female, Age: 55

  1. 1
    • cldunn5
    • Experience with Bile Duct (Cholangioca...
    about 5 years ago
    cldunn5's Avatar

    Diagnosed

    Oh No

    On September 21, 2011, I developed left sided pain and a low grade fever. I work for a group of colon and rectal surgeons and suspected that I had diverticulitis based on my symptoms. I spoke to one of my surgeons and he sent me for a CT scan. The CT scan showed I did have diverticulits but it also found an unrelated tumor on my bile ducts. I was shocked. I had no symptoms from the cancer. From what I've been told, it was a very lucky case of diverticulitis. Often with this type of cancer, it doesn't get caught until there are symptoms and sometimes by the time there are symptoms, its too late for a resection. Someone wished me a luckier year in 2012. I had to say that 2011 was a lucky year because at least it was found and it gives me a better chance of a longer life.

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  2. 2
    • cldunn5
    • Experience with Bile Duct (Cholangioca...
    about 5 years ago
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    Surgery

    Procedure or Surgery

    First I went to a gastroenterologis who performed an endoscopic ultrasound with biopsy. This showed the tumor to be malignant. I then underwent a liver resection with removal of my gallbladder and bile ducts. I was in the hospital 10 days. It took over six weeks to recover. It was a very difficult surgery. I am luckier than most because I have an awesome family and work for incredible doctors and administration. They were there for me every step of the way. Arranging tests, or appointments with physicians, doing research, sitting with me in the hospital, etc. I never felt alone in this. After I was discharged, the doctors, their wives my boss and my staff came to my home and made sure all was well. I felt very cared for

    Went as Expected: Not Specified
    Minimal Recovery: Not Specified
    Minimal Side Effects: Not Specified
    Minimal Impact to Daily Life: Not Specified
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  3. 3
    • cldunn5
    • Experience with Bile Duct (Cholangioca...
    about 5 years ago
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    Chemotherapy

    Drug or Chemo Therapy

    Had F5U for 6 weeks with radiation. Fatigue and nausea about the only side effects although this may be due to the radiation.

    Easy to Do: Not Specified
    Minimal Side Effects: Not Specified
    Minimal Impact to Daily Life: Not Specified
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  4. 4
    • cldunn5
    • Experience with Bile Duct (Cholangioca...
    about 5 years ago
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    External radiation

    Radiation

    Radiation M-F for six weeks. Everyone very nice but it really takes its toll. Felt more fatigued every week. Did have a couple of mild burns. Very happy when last day of radiation came!

    Painless Experience: Not Specified
    Minimal Side Effects: Not Specified
    Minimal Impact to Daily Life: Not Specified
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  5. 5
    • cldunn5
    • Experience with Bile Duct (Cholangioca...
    over 4 years ago
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    Chemotherapy

    Drug or Chemo Therapy

    I had 12 weeks of Cisplatin and Gemcitabine. Side effects were managable. Toward the end I got very sick and was having awful stomach and esophageal spasms. After some tests they determined I had radiation damage to my stomach. After several upper endoscopy and laser procedures along with a ton of medication, I'm doing much better. I've been off of all chemo for almost 90 days. I feel amost like my old self. I go for scans every nine weeks. Its difficult to not worry but I'm determined to remain positive. The last scan showed no signs of recurrence. My next one is next week. Keeping my fingers crossed!

    Easy to Do: Not Specified
    Minimal Side Effects: Not Specified
    Minimal Impact to Daily Life: Not Specified
    1 Comment
  6. 6
    • cldunn5
    • Experience with Bile Duct (Cholangioca...
    about 4 years ago
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    Remission

    Celebration

    I've passed my one year since my surgery. The follow up scans since treatment concluded (4/2/2012) have shown no recurrence!!

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  7. 7
    • cldunn5
    • Experience with Bile Duct (Cholangioca...
    over 2 years ago
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    Cancer is back/Recurred

    Oh No

    Received the news that my cancer has returned. I saw a surgical oncologist at IU Hospital. She advised my only long term option was a liver transplant.

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  8. 8
    • cldunn5
    • Experience with Bile Duct (Cholangioca...
    over 2 years ago
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    Procedure or Surgery

    Surgical Oncologist scheduled me for a laparoscopy. Once she started the surgery, she felt if she opened me up (laparotomy) she could ablate most of the tumor to buy me more time. She also had them place a bile duct stent to help prevent my frequent cholengitis. I'm healing but its taking much longer than I anticipated because of the change in procedure

    Went as Expected: Disagree
    Minimal Recovery: Disagree
    Minimal Side Effects: Disagree
    Minimal Impact to Daily Life: Disagree
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