Introduction – Husband Newly Diagnosed
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Hi Piper,
Welcome to our group, although I wish you and your husband did not have to find us. Cholangiocarcinoma is often symptomless until the cancer is advanced, and it can be difficult to diagnose. Having two primary cancers makes your situation all the more complicated. It sounds, however, like the doctors are on top of things and have a good treatment plan for your husband.
There is a lot of good information for caregivers and patients on the Cholangiocarcinoma Foundation website, as well as resources such as a mentoring program that can give you someone to talk to who knows what it is like to deal with this cancer. There is a tool to help you locate experienced medical providers. Our cancer is complex and it is important to be treated by doctors who know this rare cancer well. The website also has information on genomic (molecular) testing, which can open the door to treatments targeted to specific mutations. If your husband has not had this testing, I would recommend you take a look. Having two primaries which is unusual made me wonder if possibly a genomic defect or mutation is present (there are a bunch of them associated with cholangiocarcinoma).
This cancer can be a tough one, and there will be good moments and difficult ones as your husband pursues his treatments. We are here for you to answer questions and listen to your concerns. Take care and please stay in touch.
Regards, Mary
My husband was diagnosed with metastatic adenocarcenoma on May 19th. Over the past 5 weeks he has had tests and procedures to determine the origin and although our oncologist is still not certain, he believes it is cholangiocarcinoma, with a possible second primary renal cancer. It is stage IV, with masses in his liver and kidney, nodules in his lungs, lesions in his bones, and slightly enlarged lymph nodes. He is 58 years old and had no symptoms at all until the first week of May when he experienced a debilitating pain in his right rib. At the emergency room we thought the CT scan would reveal a fractured rib, but instead we received the stunning cancer diagnosis. My husband began chemotherapy last week (Gemzar and cisplatin with Zometa) and so far the side effects have been difficult. In addition, we met with a urologist this week to discuss removing the kidney in order to address the second primary cancer. Needless to say, our life together has been upended. I am looking for support and advice from those who are experiencing this cancer, and those who are caregivers. I can’t even imagine how hard this journey is going to be and am heartbroken about my beloved husband.
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