kcirucci's Journey with Bile Duct (Cholangiocarcinoma) Cancer

Patient: Bile Duct (Cholangiocarcinoma) Cancer

Patient Info: Living with cancer as a chronic illness (undergoing adjuvant therapy), Diagnosed: over 7 years ago, Female, Age: 52

  1. 1
    • kcirucci
    • Experience with Bile Duct (Cholangioc...
    about 5 years ago
    kcirucci's Avatar

    Surgery

    Procedure or Surgery

    I am a 47-year-old single mother of two beautiful daughters who, after many years, decided to return to school to obtain a nursing degree. As a single mother, running a small medical transcription business and attending school, this was not an easy task. But possessing a strong will and much determination, I managed to maintain a 4.0 average throughout my four year journey. With only two semesters of nursing school remaining, I was quickly approaching the day I would graduate and be able to live my dream of helping others as a hospice nurse. After all, as a young child, only three years of age, losing my best friend and sister, who was just shy of her fifth birthday, to leukemia, and later my father at the age of 59 to cancer, as well as many other family members to such a horrific disease, being able to make a difference in the lives of those in need was something I felt compelled to do. However, my dream, something I had worked so hard for, came to an abrupt halt when in December of 2009, I diagnosed myself with liver cancer. My friends and family thought I was crazy, as did my doctor, until the diagnosis was confirmed on 1/14/10, my daughter’s 15th birthday. Instead of singing happy birthday and watching my daughter blow out her candles, I was sitting in a hospital preparing to undergo a liver biopsy. The funny thing is, as difficult as the whole ordeal was and with so many emotions running through my mind, I was never shocked by the news, nor did I ever feel a sense of impending doom. I knew I would face my fears with my eyes wide open and fight with everything ounce of power I had. The final diagnosis was made….I had cholangiocarcinoma, a very rare type of cancer involving the bile duct. A 10 cm malignant tumor encompassed the entire left lobe of my liver. After months of chemotherapy, as I had suspected, the treatment failed. The tumor was growing and time was running out. Once again, in my quest to sustain my life, I picked up the speed and began to fight even more vigorously. I sought the expertise of extensive well-renown oncologists and surgeons, but to no avail. I was told over and over by each physician that my tumor was inoperable and there was no treatment of choice to either shrink the tumor or, more importantly, to cure my disease. Refusing to believe this, I marched on with bravery and persistence that was driven by something deep within me. With each visit, I left every doctor’s office with a new sense of power. I didn’t have a choice. For the first time in my life, I was actually fighting for my life. After much persistence, I found a brilliant and courageous surgeon willing to attempt removal of my tumor, and who succeeded at doing just that. The doctor’s name was Tomoaki Kato. In July of 2010, one week after submitting all of my reports to Dr. Kato, I received a telephone call personally from the doctor. Within minutes of our conversation, Dr. Kato advised me that he wanted me to come to New York for a consultation because he felt that he could resect my tumor. I remained on the phone in disbelief. After being told by so many that my tumor was inoperable, I thought could it be true that this doctor thinks he can remove my tumor. I traveled to New York and found myself sitting face-to-face with this amazing surgeon who looked at me at said “you are not inoperable….well at least not to me”. Those words were like a symphony to my ears. He described the surgery (ex vivo – “outside the body”) he would perform. He is a pioneer in this type of surgery, and the only surgeon in the U.S. to perform ex vivo surgeries, having only done five of these operations in the past. I would be number six. At the end of our meeting, and after describing the extensive surgery I would undergo, which could take up to thirty hours, Dr. Kato asked “So what do you want to do”? Holding back the tears, I replied “Let’s do it”. He then responded with “Ok, then we do it”. On 7/28/10, I became Dr. Kato’s sixth patient to undergo ex vivo surgery. The tumor was removed in its entirety, along with ¾ of my liver and right jugular vein in order to replace the vena cava that was invaded by the cancer. Much reconstruction and “bionic parts” were also required in order to allow my body to function properly. The recovery period was brutal, but after approximately 5 months, I was able to eat somewhat normally again and began to gain my strength and return to life as a mom. I enjoyed 10 months of cancer freedom, until yet again, in May of 2011, the cancer returned to my liver. This time, at least 15 tumors grew back. In Sept. of 2011, I underwent Y90 radiation therapy. So far, my recent PET Scan revealed that 3 out of the 15 tumors are showing mild activity, while the other 12 are dormant. Repeat scans in March & April will determine the next course of action.

    Went as Expected: Agree
    Minimal Recovery: Strongly Disagree
    Minimal Side Effects: Strongly Disagree
    Minimal Impact to Daily Life: Strongly Disagree
    1 Comment
  2. 2
    • kcirucci
    • Experience with Bile Duct (Cholangioc...
    about 5 years ago
    kcirucci's Avatar

    Chemotherapy

    Drug or Chemo Therapy

    I underwent 4 months of Gemzar and Cisplatin prior to surgery. Although the side-effects were somewhat minimal, this treatment did not work for me. In fact, at the cellular level, my cancer cells had doubled while on this treatment.

    Easy to Do: Agree
    Minimal Side Effects: Agree
    Minimal Impact to Daily Life: Agree
    0 Comments
  3. 3
    • kcirucci
    • Experience with Bile Duct (Cholangioc...
    about 5 years ago
    kcirucci's Avatar

    Internal radiation

    Radiation

    I underwent one round of Y90 radiation, in which pellets of radiation were injected into my femoral artery that went straight into my liver.

    Painless Experience: Disagree
    Minimal Side Effects: Agree
    Minimal Impact to Daily Life: Agree
    0 Comments