Diagnosed but still awaiting treatment in NS

Dear Allison, very GOOD choice. You definitely do NOT want to be where there is no experience with CC. Princess Margaret is a good decision. We are our best and own advocates. I always feel, go with your gut and do it quickly, you will not be sorry. Best of luck with your plan!!!!!

I can attest to the value of searching out expert opinions. Recently I requested opinions from 6 different physicians treating a high volume of CCA patients. Though there was some overlap in their answers, the variances of their responses came as no surprise to me. We know that specialists disagree with their approaches, hence patients must be vigilant in their pursuit of obtaining answers to their questions.
Hugs,
Marion

Allison,

Welcome to our wonderful site. I’m glad it has been helpful to you and I hope you will continue to use us for information, support, etc.

Many of our patients have endured long waiting times for diagnosis, and consequently, treatment-usually because this cancer is notoriously difficult to diagnose. In your relative’s case, it sounds as though the medical provider is not very familiar with cc, and is attempting to figure it out, but not very effectively. My first suggestion would be to get a second opinion or two from expert centers and then try to get treated by a medical center that has a lot of experience and uses a multidisciplinary approach. They should be able to guide you on first choice of treatment for the particular situation, followed by second line as backup.

Secondly, I know it can be frustrating and worrisome to have time elapsing with no treatment. You are right that time does matter, as this cancer tends to progress quickly. However, it is no use thinking about lost time. What does matter is finding experts that can help you plan and implement the best treatment. I have learned that cc behaves differently in different people. For some it advances at lightening speed, for others, it moves more slowly. I hope your loved one has the type that moves more slowly . You haven’t mentioned how they are feeling, so I’m assuming they are feeling reasonably well ( not hospitalized with infection, etc.). That sounds encouraging to me.
P.s. For what it’s worth, it took our first doctors 9 weeks to diagnose my husband and 5 months to perform his first (aborted) surgery. We were concerned about too much time passing and losing treatment opportunity as well. He finally has a very successful resection 11 months after he first had symptoms.

Debbie

Hi Allison,
Sorry you and your family had to find this site but you have come to the greatest place for resources and support. If you look back at my posts you will see our story started in June, 2016. My husband has had an ultrasound, many CT scans, MRI, 3 ERCPs, and lots of bloodwork. He continues to have no tissue dx….this is difficult to get on some patients with small intrahepatic strictures we understand ( there have been attempts with results being inconclusive or benign tissue). Stents placed up into hepatic left and right ducts have provided great symptom relief for now and no other treatment has started as of yet. While we were initially told this was inoperable we have consulted further and are awaiting this opinion.
Read as much as you can about cholangiocarcinoma as that will help you ask great questions and advocate for the tx and care you decide upon.
We continue to be surprised at the # from NS here…are our rates higher or we just seek out these great resources more often. Reading the questions and responses, the newest research posts, and the site info here have really helped us. All the best and hope to hear some good news for your family.