Getting diagnosed with cholangiocarcinoma is a shock. Thinking clearly and making good decisions early can be very important. The Cholangiocarcinoma Foundation offers this helpful list of first steps to consider if you are diagnosed. On this page, experienced patients and caregivers offer their tips and "wish I knew that earlier!" advice for the recently diagnosed.
Second Opinions[]
It can be difficult to get a second opinion. You might feel like you are insulting your doctor if you seek other advice. Try to fight this natural feeling! First, your doctor will probably be very understanding. Cancer is very serious, and the fact that you want a second opinion makes perfect sense to most doctors. If your doctor gets offended, you might want to consider another doctor. At the end of the day, isn't the goal getting the best possible care? Second, the simple truth is that cholangiocarcinoma is a very rare cancer. Few oncologists are experienced in the treatment of CC. To get the best possible care as early as possible, advice from a surgeon or oncologist experienced with CC is crucial.
The Cholangiocarcinoma Foundation has a list of Major cancer centers
Getting Organized[]
To get a second opinion, the new doctor or institution need your medical records. Getting one hospital to provide all the needed records to another hospital can be a frustrating and time consuming process. Many bottlenecks can be short-circuited if you have and can provide a copy of your records.
There are two types of records that I have mainly dealt with. Written reports (scan reports, blood test results, etc) and scan images. Images are probably the most important, and the more difficult to deal with. When you have a scan, you have (in the US) the right to request a copy of the scan images on a CD. Usually the first copy is free, and extra copies have a cost.
As you start accumulating reports and image CDs, it is very important to keep these records in some sort of system that allows you to get the information to other institutions for second (3rd, 4th, etc.) opinions.
Visit the Getting Organized page for tips to help get your records organized.
First-line therapy[]
First-line therapy refers to the first approach used to treat your CC. First-line therapy is becoming more standardized for CC patients, but there are a few wrinkles. Visit the First-line therapy page to view and offer tips for the recently diagnosed.
Patient Experiences and Suggestions[]
Treatement roadmap contributed by PCL1029 from The CCF Forums
- The following steps that I learned may be of help if interested:
Diagnosis of CCA- Usually start with oncologist, but ask them to refer you for a surgical consult too.
- 1. Surgery consult first if possible by a liver surgeon
- (A)-----Resectable: then surgery and follow with chemoradiation, adjuvant chemotherapy or Targeted agents treatment, CT or PET ( oncologist choice).
- (B)-----Unresectable: then
- 2. a. consult with interventional radiologist(IR) --( for RFA, microwave ablation, IRE, chemoembo ,radioembo or cryoablation,) and/or
b. consult with oncologist radiologists (radiation as SBRT,IMRT or PDT etc)
- 3.GI specialist to put in stents if needed to relieve symptoms of jaundice, itching, ascites etc.
- 4. Medical oncology consult with an oncologist,both for resectable (usually after 2-3 month of the surgery) and for unresectable CCA for cancer chemotherapy to extend the life of the patient.
When current treatment plans exhausted ( either too much side effects or the therapy don't work ); ask oncologist to recommend a clinical trial that may fit your situation the best. Or you can contact the clinical trial coordinator.
- 5. for planning future treatments, consider a "next-generation sequencing" (NGS) genomic profile which offer by the large teaching hospitals in the States.
- 6. other palliative treatment or hospice as advised by medical professionals at the end of the journey.
- 7. DO not forget "No treatment "is another option too for "quality of life" rather than "quantity of life" in treating this disease.