Rick from Canada introduction
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Just get it taken out. Let them figure out if it’s cancer afterwards. Don’t get hung up on details.
Joe
Thanks Scott for sharing your local experience.
Update:
The spyglass biopsy came back stating tissue is benign. Gastroenterologist seeing it during procedure thought it looked like a cholangio. CT showed little change from a few months ago. Have a consult with Princess Margaret Toronto surgeon in just over a week to talk about surgical possibilities (surgery not an option in our tertiary care center). 2 new #10 french stents in place and feeling ok.
Wondering about accuracy of spyglass…we kind of expected either inconclusive or positive but not a statement that the tissue was benign normal bile duct tissue. Experience out there?
Continue to benefit from the experiential expertise of this group. Happy weekend everyone.They diagnosed me last September. I have done everything in Kentville, I only go to Halifax for PET scans.
I started with a round of gem/cis, but it didn’t do anything. I’m on ironotecan/5fu and it worked really well, but it is very harsh.
The Tumor Board is a mash up of onocologists, radiologists, surgeons. They help diagnose the caner you have.Yes it is sad to see there are others with cc in NS but nice to have this forum to share. We started our journey in June, 2016. I think i read you were sending your test results off to Mayo clinic…how has that gone? You mentioned a tumor board…what is this? What Drs are you working with? Have you been treated in Halifax only?
Hi Rick, I live a few hours up the 101 from you in Kentville. For such a rare cancer, we have quite a few cases here in NS.
Rick,
My mother had a similar diagnosistic experience, but not as ongoing as yours. The first ercp she had the GI doctor said it was cancer before the results came back. A few days later a PA told us that the test was negative, which made everyone feel great.
I spoke with the GI the next day, and he was unaware of what the PA told us, he was angry at the PA and told me to ignore the test results. That he knew he was correct about it being cancer. Which put me in a shitty position, the first of many actually.
The GI referred us to a bigger hospital that had more tools. They did another ercp and he was confirmed correct.
Unfortunately, my experience suggests you should trust their take.
Joe
Rick, I would also like to welcome you. I’m sorry you needed to seek us out, but so glad you did. I’m so glad this board has been helpful to you. CC is notoriously difficult to diagnose, and I know how very frustrating tHat can be. Hopefully, your appointment at Princess Margaret and your spyglass procedure will provide more answers.
I’m so glad you’re feeling well and enjoying your usual activities. (You sound like a fairly active guy!). Please continue to keep us updated on your progress. Wishing you all the best.
Debbie
Rick….a warm welcome to the club no one wants to belong to, but is happy to have found.
Brushings are inconclusive in about 65% of cases, biopsies – minus a few exceptions – nearly always are warranted.
Stents can and will clog with debris, hence you would want to make sure to check your temperature and carry with you – at all times – the biliary emergency card.
Here is the explanation and link to download: http://cholangiocarcinoma.org/biliary-emergency-information-card/Princess Margaret has an exception team of physicians focused on this cancer. Hoping you will receive an appointment real soon. When speaking with the oncologist, you will be able to receive information on a Keytruda clinical trial, but as far as I know, prior chemotherapy had to be administered. Balloon therapy, are you wondering whether it is a better option than stent insertion? We have seen it rarely as stents (most often) are inserted directly through the tumorous issue.
I am with you on hoping the diagnosis will be that of a different disease, but know that treatment for cholangiocarcinoma have increased drastically, as have the positive outcomes.
In the meantime, dear Rick, stay positive, much has yet to be confirmed, continue to enjoy your activities and know that you have a global group of patients and caregivers by your side.I am looking forward to others joining in to share their personal thoughts with you.
Hugs,
MarionHi everyone,
This has been a great site and I am finally introducing myself 5 months into a very difficult and challenging diagnostic and decision making process. In June following bloodwork, ultrasound, and CT was diagnosed with intrahepatic cholangiocarcinoma …with additional lung lesion believed to be cancer). Since then jaundice worsened, feeling of fullness increased, as did weight loss (170 to 139 in 6 months) so in July had 2 attempts at stents and the second attempt worked with 2 stents-left and right hepatic ducts placed. Told not a surgical or radiation candidate as too close to vessels and possible mets. Attempt at biopsy was aborted as could not be seen by radiiologist. Brushings inconclusisve. PET scan not conclusive and did not show any mets to bowel or other area. CT of lung repeated after 3 months and lesion did not grow so repeat to be done this week after another 3 months. Am healthy 57 year old male on no medications. Am going for stent replacement this week after 3 months and they are going to use Spyglass to try and get a biopsy (in Halifax NS). The only treatment offered so far has been chemotherapy but I have opted to wait as feel really well with stents in place and can play all my sports etc. I have a wife and 2 adult boys in university and want to get the best possible treatment to give me time. Have asked for a referral to the Princess Margaret in Toronto hoping for a more confirmed diagnosis and treatment options (including possible surgical). Curious about others experience at the Princess Margaret Hospital? The Keytruda trials look very promising…any word on when or how this might be available? Are you better off having balloon therapy for the ducts or stents? Have others experienced this diagnostic issue…no tissue confirmation so leaving you wondering if it may be primary sclerosing cholangitis or cholangiocarcinoma. Thanks so much for all the posts before me and the moderators as the research and experience shared has already been very helpful.Rick
Nova Scotia
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