Topic: Just of Concern About the Ways to Find Treatment.
Knowing that ourselves or our love ones have Dx of CCA is worse; but trying to do or obtain the same treatment that someone just mentioned on this message board that may fit our situations are of concern if not concur with our oncologists or 2nd opinions. and the results may be worsen than before.
Please remember, nothing come easy if we do not gain knowledge thru studying this disease, even so,it dose not guarantee we will find a cure soon.
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 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.
Since recently , cancers treatment by the top cancer centers are using "2nd generation sequencing genomic profile" as the tool to help oncologists to provide a more custom fit and personalized treatment for the specific patient. And more and more of the clinical trial agents are based on " targeted gene mutation or over expressions". It may be of benefit to get one done as a road map for future Treatment.
Yes, patients can join any clinical trials they are qualified. But if you know or your oncologist know which one is a better trial for you, than you will save time and prolong your quality of life much better.
In short , I hope the above steps and comment helps; and as always,consult your doctor before change any treatment plans.
If you want all the above, the best way is to get a multidisciplinary team approach consult for CCA, thru Mass General,Mayo Clinic, UCSF, USC, or MD Anderson at Houston, Washington University in St. Louise ,Columbia Presbyterian in New York,others like John Hopkins, Sloan-Kettering , Emory in Atlanta,can do the same if asked.