Newly Diagnosed

Hi Shshaw,

Thank you for your note.  Radiation is used in some cases with our cancer, so no one should be generically negative about it.  It would take an opinion from a radiologist experienced with cholangiocarcinoma, however, to determine if it is an appropriate treatment for your case, either now or in the future.  Whether or not it can be used depends on factors such as the location and size of tumors.

Regards, Mary

Hi Shshaw,

It is good to hear from you and that your doctors have treatment plans in mind.

My understanding is that the patient outcomes from chemotherapy delivered via a hepatic arterial infusion (HAI) pump generally have been positive when compared to other chemo options.  As you mention, one benefit is lighter side effects given that the chemo goes straight to the liver.  There are two cholangiocarcinoma patient blogs I am aware of by patients who were treated using the pump.  Both patients reported a positive experience having chemo delivered via HAI.  Here are the links:

https://becauseicansir.com/  (Look at the posting for April 7, 2018).

http://nowwithouthesitation.blogspot.com/2016/09/me-and-my-pump.html (Look at postings around September 2016)  Sadly, the author of this blog passed away earlier this year.

I hope this is helpful.  If you have any additional questions or concerns, please send them our way.

Regards, Mary

Hi Shshaw,

Welcome to our community, but I am sorry that your diagnosis brought you here.

I am a patient myself, not a medical person, but can provide some general information in response to your questions.  The gem-cis chemo treatment you are receiving is standard of care for our cancer when surgery is not possible.  You raise a good question about radiation.  Radiation is used with our cancer, but it is used with care to avoid harming the liver.  A principal goal of treatment is to preserve good liver function.  The geography of a patient’s tumors is an important consideration for treatment recommendations.  If tumors are too large, too numerous, or near major veins, or if the radiation would have to also affect nearby organs in a risky way to get at your tumor, then it would not be recommended.  Sometimes doctors try chemo first because in many patients it will shrink the tumors or eliminate small ones, and this can open the door to surgery or ablation or radiation.

Also, the liver-directed therapies tend to be used in patients whose cancer is confined to the liver.  If there is suspicion cancer is moving beyond the liver, systemic therapies are more commonly used.  This is not always the case, so again, good medical advice should be sought to identify the best possible treatment approach.

It is imperative with cholangiocarcinoma to be seen by experienced doctors, which generally means in major cancer centers.  The Cholangiocarcinoma Foundation website has a tool – a specialist map – posted on its website for finding doctors, which is based on insurance data showing which doctors are treating a lot of our patients.  This tool (link provided below) can help you locate doctors who are specialized in cholangiocarcinoma.

Generally the major cancer centers will have a team of doctors of the different relevant specialties (“tumor board”) review cholangiocarcinoma cases, to determine which treatments (you listed several of them) are the best options.  You may wish to consider seeking an opinion from an experienced radiologist about whether you are a candidate for some of the treatments you are interested in.

Please take a look at the many resources for newly diagnosed patients on the Cholangiocarcinoma Foundation website.  I hope you will stay in touch, and send any questions our way.  Patient stories posted on the discussion board are a valuable source of information to others who will walk our path in the future.

Take care, regards, Mary

Specialist Map