January 12, 2018 at 11:48 pm #96451bglassModerator
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, MaryJanuary 12, 2018 at 11:48 am #96442karendParticipant
Hello Family38! Welcome to our discussion board! I am sorry that you have had to find us, but am glad that you are here.
Here is some information that you may find useful:
With a diagnosis of Cholangiocarcinoma, a team approach is absolutely necessary. Wherever care is received (and yes, seeking multiple opinions is warranted), there should be a care team; this may include a medical oncologist, surgical oncologist, radiation oncologist, gastroenterologists, interventional radiologists, social workers to help with insurance claims/etc., palliative care practitioners to manage distressing symptoms, nurse navigators to assist with the plan of care, etc.
Additionally, seeking care at a major center who sees cholangio patients routinely is extremely important. I believe I see that you tagged Sunnybrook for your post. This is in Canada, correct? Have you sought a visit with Princess Margaret?
I did read another one of your posts re: Paclitaxel + Gemzar/Cisplatin. This drug combination is considered “chemotherapy” as these drugs interfere with the functioning of the cancer cells (i.e. interrupting cellular mitosis). Here is an article you might find helpful:
The standard of care currently is a combination of the drugs Gemcitabine (Gemzar), and Cisplatin. This regimen may allow for the tumor to shrink enough to where it is deemed operable. However, genetic testing of the tumor is important as well as this will allow the physicians to potentially match current drugs or even clinical trial drugs to the tumor. There are many posts on this board (and current members) who are well versed in tumor sequencing and will be so helpful as you seek information to help your father.
I hope this information has helped you a bit!
Member, Nursing Advisory Board, The Cholangiocarcinoma Foundation
January 11, 2018 at 2:17 pm #96421Family38Participant
- This reply was modified 2 years, 1 month ago by karend.
My father was diagnosed with locally advanced non-resectable cholangiocarcinoma. As it is a hard diagnosis to digest, we were wondering if anyone else in this situation has sought second/third opinions from different cancer centers. How did you approach this situation and did it yield any positive results?
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