Diagnosed but still awaiting treatment in NS

Discussion Board Forums Introductions! Diagnosed but still awaiting treatment in NS

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  • #93330
    marions
    Moderator

    Allison….is your the current physician affiliated with the Nova Scotia Cancer Center?

    #93331
    lainy
    Spectator

    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!!!!!

    #93332
    allison
    Spectator

    Hi everyone,
    Thanks for all the advice and suggestions. Next week we should hopefully know if it is going to be SBRT or chemo. I think my next move may be getting a second opinion as far as a treatment plan as many of you have suggested. As I have said earlier the oncologist that we are seeing has no experience treating cc so I feel by reaching out for advice from a center that has more experience treating cc seems like the logical thing to do. I may talk to the oncologist on perhaps reading out to Princess Margaret in Toronto. Thanks again!

    Allison

    #93333
    marions
    Moderator

    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

    #93334

    Hi Allison,

    I get that the passing of time is needed in certain cases for some hospitals to come up with a treatment plan. But, if so, you can use that time, which is critical, more productively to get an important second opinion (even remotely) at a reasonable cost. As pointed out by this fabulous website, CC presents itself in many different forms. Therefore, by nature, it makes sense to seek out other opinions.

    As Billy mentioned Columbia University as a possibility above, I would second that since Dr. Emond and Dr. Kato and the multi-disciplinary team there saved my life. If not them, choose a hospital with a multi-disciplinary team, especially additional Transplantation expertise, because that may be needed if there is vascular obstruction like I had.

    Wishing you the best,
    Barry

    #93335
    debnorcal
    Moderator

    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

    #93336
    vtkb
    Spectator

    Allison,

    Have you sought out secondary surgical opinions? Im not sure how Canada’s system works, but if your family member has the means to travel to the US, some surgeons here may have a different opinion on inoperable or not. Kathy also has a suspected lymph nodes involved but we met some surgeons who are willing to operate on her after her chemo and rescan if it hasnt worsened. It will however depend also on how much liver is involved, and which blood vessels are involved also. In NYC Kathy is comfortable with Dr. Schwartz at Mt Sinai so we are going to use him for surgery, but I’ve also heard good things about Dr. Kato at Columbia University, to mention 2 names. I’m sure there are surgeons in Boston or someplace closer to Nova Scotia that may offer a second opinion.

    -Billy

    #93337
    rwpavocat
    Member

    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.

    #12789
    allison
    Spectator

    I am new to this site and hopeful on getting some answers for a family member who was diagnosed with stage IV cc( some vascular invasion and one enlarged node). They were diagnosed Sept.23 after an incidental finding from an ultrasound in August. The frustrating part is that no treatment has been started yet. There have been numerous delays/mix-ups with appt’s, MRI’s read incorrectly etc that is making this even more difficult. They are now having to re-do imaging tests because they are not sure how much the tumor has grown which I feel is compromising the treatment options available. We do know they are not a candidate for surgery. Right now they are trying to figure out if SBRT is possible or whether it will be chemo(gem/cis).
    Just wondering if anyone else had this much of a delay from time of diagnosis to when treatment actually started? I know there are some other people on here from Nova Scotia and I am wondering if they had a similar situation? Thanks

Viewing 9 posts - 1 through 9 (of 9 total)
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