Early Detection

Hello Bob,  I am sorry about your brother in law’s late diagnosis, too often symptoms that even start testing come late. I recently went back to see my old oncologist at the cleveland clinic and I am very disappointed with my recent visit. I went for a few reasons. I wanted a copy of my surgical and pathology report, which I did recieve, making the visit at least not a total waste of time. Secondly, I wanted to point out the fact that my pathology report indicated “Either primary or secondary schlerosing cholangitis ” present in bile duct. None of my doctors ever even pointed this out and never explained the long term effects of this condition on my liver. It puts me at elevated risk of re-developing cholangiocarcinoma ( he told me if cc showed up in my body again it would not be a re occurrence it would be the manifestation of a new cancer, likely with a different genetic mutation. My first tumor elevated my ca19-9 to 25 and after surgery it dropped to 10 and stayed there for years (it is now 6 ) my insurance will not cover the ca19-9 marker test as they say it is not a accurate way to watch for the cancer’s return.So I pay for the test out of pocket. Third I wanted to inquire about a medical marijuana card for ohio cancer patients, and with PSC or SSC I have a scarred up,  inflamed bile duct that is fertile ground for a new tumor to pop up, I have used cannabis since surgery for appetite, pain, and I believe it interrupts the step from scar tissue to cancer. I am not a doctor or biologist, however between the anti inflammatory drug (meloxicam) and the cannabis, it keeps the bile duct open and flowing and not an issue this far.He said his employer, the cleveland clinic, will not permit their doctors to recommend cannabis to their patients, so now what? I was hoping to get a card so I can possess this compound I have used for nearly 12 years with about as good success as a cholangiocarcinoma survivor with PSC. could hope for. The Ohio medical cannabis program was set up by law enforcement leaders in Ohio, not doctors or pharmacists so of course it is just a public relations scam. I am disappointed in all of them.   Patrick

• This reply was modified 7 years, 2 months ago by hercules.

Hi Bob,

I am sorry to hear about your brother-in-law’s diagnosis at such a late stage.  I hope you and your family have found your way through the medical maze and have been able to identify treatment options.

Thank you for posting such a fundamental question.  Your brother’s experience is sadly all too common with CCA, namely that it can be symptomless in its early stages and many patients have zero risk factors.  In my own case, just months before my quite large intrahepatic tumor was discovered accidentally, I had gone through a very comprehensive physical including liver function tests and exams with my GP and my gastroenterologist.  Nothing had turned up.  My cancer was subsequently found via a scan my GP ordered investigating a shoulder injury.

Earlier detection for CCA is a topic of concern within the research community.  The Cholangiocarcinoma Foundation raises funding for research, including related to better early detection – for example, looking for new biomarkers.  Other research will also help earlier detection via collecting and studying genomic features of cholangiocarcinoma.  The Foundation has also supported creation of a hepatobiliary tissue bank – a resource that can facilitate the search for better means of early detection.  I invite you to take a look at the research the Foundation supports which is described in the link below, which also provides some information on developments on the horizon.  Your point regarding the need for research in this area is an important one which I will pass along.

Here is the link for Cholangiocarcinoma Foundation support for research:  https://cholangiocarcinoma.org/professionals/our-grants/

Regards, Mary