Introduction: 41-yr-old Stage IV Extrahepatic CC
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Thank you all for your kind remarks and support. It’s such a gift to have a resource like this! I guess I forgot to mention that during his lap. surgery to stage him, they discovered mets in his abdomen. The pathology reports said it was in his lymph nodes, too, I think. His liver and pancreas are all fine, and his tumor is in his distal bile duct (the lower end).
Hi Sweetgreen,
I just wanted to welcome you to the site and let you know that you are not alone. Someone is always ready and willing to give you an answer to any question and everybody is here to offer support. I hope to hear from you in the future and I just wanted to wish you and your husband much luck in the future. God bless.
-Pam
Hello Sweetgreen and welcome to our extraordinary family but sorry you had to find us. I think you are told contradictory things because unfortunately the attack game for CC is still in the hunt and peck stages. What works for one may not work for another, what works the first time may not work the second time. The best attack is to get other opinions (which you have) and to research as much as you can, knowledge is the best tool for fighting CC. Hope and attitude are so important and they really do play a positive part in treatment. It sounds like you are doing all the right things and will just have to hang in and be strong for now. Please keep us updated as we truly care!
Hi,
Extrahepatic CC METASTASED to where if I may ask.BTW, I have intrahepatic CC for 34 months ,it is quite a long journey.
I know Gavin’dad and Lainy’s husband and many others on the board had extrahepatic stage 3-4. Mainly stents changing and bile flow and ascites are the main problems. IBRT ,PDT or cyberknife are radiation treatment options besides systemic chemotherapy.
If the tumor inside or around the bile duct is growing it will show as a stricture in the bile duct and it will show on the scans or MRCP. Changing the stents every other month to improve the bile flow is a common practice to keep the bile from backing up in the digestive system.
Palliative chemotherapy or adjuvant chemo treatment is no guaranteed for cure or prolonging the life of most CCA patients but as you may notice from this web site,there are CCA patients who live beyond 5 or even the 10 or 15 years mark.
Keep in touch,
God bless.Hi Everyone, My husband (41 years old) was diagnosed in January with metastatic extrahepatic CC (what a moutful!). He is midway through his first round of cisplatin/gemzar and will be switching to carboplatin/gemzar next round in hopes of reducing nausea. Except for pain in his gallbladder, which started after his metal stent was placed, he’s in pretty good health. I haven’t seen many people posting on here at this age with extrahepatic stage 4, so hoping my post will bring you out of the woodwork. It would be nice to have a community to talk to. We are reading a couple of books: “Healing Words” and “The Anatomy of Hope.” We’ve been told contradictory things about his future which range from “get your affairs in order” to “with chemo the tumor in your bile duct could one day be resected.” We have consulted with other oncologists by email, some in person, and even switched oncologists, and they all have recommended the same initial treatment. I’m wondering how they’ll know if the chemo is successful since you can’t see the tumor on the CT scan? Do they have to remove his stent to do a spyglass of his bile duct again? Or, for this stage, do they just assume that if you’re still alive it must be working? Thanks everyone. I appreciate the opportunity to have this community available.
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