Locally advanced non-resectable cholangiocarcinoma, seeking multiple opinions?

Hi Cameron,

Welcome to the discussion board.  Your father is so blessed to have such strong family support as he pursues treatment.

Many patients pursue second opinions.  There are several ways I know of to go about this.  First, you can raise the idea with your current doctor, and enlist his or her help.  A second opinion is a common practice, particularly with a complex diagnosis, so your doctor should be supportive.  Or you could ask around to find another cholangiocarcinoma expert, and approach that doctor’s office directly.  Or, on the websites for many of the major cancer hospital centers, you can find instructions for requesting a remote second opinion, where you would send all the medical records and scans, and the hospital will organize a review for you.  Be sure it is a hospital with expertise with this rare cancer, not all hospitals have this.

Please check your insurance coverage beforehand.  For example, my understanding is that some insurers may not cover remote second opinions.  (I see you are in Canada where this aspect may work differently.)

Some reasons patients on this board have pursued second opinions include:  to confirm the initial diagnosis, to be certain there are no options for surgery or transplant when the cancer is locally confined, and to investigate if there are other treatment options.

For many of us, the initial diagnosis is made via a hospital tumor board, which includes a group of doctors in different specialties, so there have already been multiple experts involved.  Cholangiocarcinoma, however, can be hard to diagnose.  My case, which was fairly straightforward, entailed having the scans read by two sets of radiologists, and then multiple tries with various stains to figure out a biopsy sample.

As you read through the patient stories on this board, you will see the common thread of families experiencing an unexpected diagnosis of a cancer we have never heard of.  You will also see there is much hope, with the numbers of treatments expanding every year.

Your family picture is lovely.

Please keep us posted on your father’s progress, and be sure to look through the many resources on the Foundation’s website.

Regards, Mary