Delayed diagnosis and treatment

[Wojo]

76 year old female diagnosed Dec. 2018 with stage 4 cholangiocarcinoma inoperable and incurable. Can't understand how cancer so advanced when I see doctor regularly, probably avg of every 3 months with blood work. Went to large cancer facility connected with college and the took about 3 months for 1st appt. First CT scans revealed no lung, stomach or heart involvement but their slow interaction resulted in involvement in all 3 areas. Due to huge tumor & no treatment I switched to another college connected liver cancer Center in anothe state who immediately started chemo. Scheduled for CT scans in November to check status.

[spazure Caregiver]

"Can't understand how cancer so advanced when I see doctor regularly."

Ugh, that is SUCH a familiar thing to hear around here. Doctors miss this stuff all the time because you can only seem to find it when it's super advanced, or if you are EXPLICITLY looking for it. I'm sorry you're going through this.. I remember the look on my father's face when he was screaming almost the exact same thing at his doctors. It's not a mental state I'd wish on anybody.

[andersoncathl Caregiver]

I am very sorry to hear you are going through this! I think the problem is that some of these cancers are so very aggressive. My husband didn't have the same thing. He had hepatocellular carcinoma but they told him that it doubled every 6 weeks so it likely wasn't something he had for very long. I'm glad you are switching to a more responsive hospital/doctors. Having to wait 3 months is inexcusable. I hope you respond well to the chemo. Please keep us posted.

[AndreaWilson_Founder Partner Editor Caregiver]

Hello Wojo,

For advanced cholangiocarcinoma (CCA), your best bet is a clinical trial ASAP--before your body suffers from chemo. You can look on our clinical trial finder, which pulls trials from clinicaltrials.gov. Change the default Hepatocellular Carcinoma to Cholangiocarcinoma.

bluefaery.org/clinical-trials/

Additionally, I'm happy to put you in touch with someone at the Cholangiocarcinoma Foundation. CCA often responds better to certain immunotherapies than HCC, which is what Blue Faery specializes in. Feel free to email me directly: [e-mail]

~Andrea

P.S. Our livers do not have pain receptors which is why liver cancer (of any type) is often not diagnosed until the late stages.