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Husband recently diagnosed with Cholangiocarcinoma and had no symptoms
My husband was recently diagnosed with Cholangiocarcinoma. We were referred to Mayo and have our first appointment in a week. What I don't understand is why blood tests taken the end of Sept were all normal range. Lesion was found on the liver by accident otherwise no symptoms. They say it's about 8cm which is quite large. We don't know what to expect and it's scaring me. I'm assuming the size would mean it's more advanced. Can anyone share their experience if it's similar?
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Thinking of you and praying all goes well today.
Thinking of you also. Good luck with ct scan and bloodwork. Praying you gets answers to move forward quickly ❤️
Hope everything was ok today. Pet scan was ok not great news but not the worst. We shall see. It’s in God’s and the doctor’s hands now
Things went well today. Got some answers to our questions. He is having a PET scan right now. Depending on how the scan goes today, the plan will probably be surgery and then chemo. Or maybe chemo first. So like you said, not great news but not the worst. Praying for you.
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1 ReactionPraying for you all also
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1 Reaction@mscluppy, sounds like you are getting some answers and a clearer path forward for treatment. You and @astemko may also appreciate these discussions related to cholangiocarcinoma:
- Diagnosed with cholangiocarcinoma, can this be treated? https://connect.mayoclinic.org/discussion/diagnosed-with-cholangiocarcinoma-can-this-be-treated/
- Cholangiocarcinoma - Mayo Clinic Rochester. Are there other patients https://connect.mayoclinic.org/discussion/cholangiocarcinoma-mayo-clinic-rochester-are-there-other-patients/
- Cholangiocarcinoma Bile Duct Cancer: Want to share experiences?
https://connect.mayoclinic.org/discussion/cholangiocarcinoma-bile-duct-cancer/
See all: https://connect.mayoclinic.org/group/liver-cancer/?search=Cholangiocarcinoma%20&index=discussions
@mscluppy and @astemko, you both mention the emotional impact that this is having on your husbands. I'm sure it is having an emotional impact on you too, but you are putting that aside to help them. Two questions: What helps you help them? Who is supporting you?
I’m in healthcare so it has really impacted me due to the fact that some of the reports were given to me verbally from a radiologist that is a close friend and also through the portal. When you know what you are reading it is devastating and to have to verbalize it to the person that you love is crushing. I have a lot of emotional support from friends and colleagues but my husband is quiet and to himself. He doesn’t know how to open up. I just tell him that we are in this together and I’m his advocate until the end. I will go to the ends of the earth for the best care for him.
For me, I keep doing research and asking questions (more than my husband does). The more we know what to expect the better we both feel. The unknown is hard. I also have friends who are in the medical and herbal medicine field and they have been a lot of help.
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2 ReactionsDiagnosed July 2024 cholangiocarcinoma no symptoms, Sept 6, had liver
resection removed left lobe over 5 cm and gallbladder plus 10 lymph nodes
all pathology afterwards were negative as pet scan negative pre-surgery.
no treatment for a month then tried capecitibine pill for 6 months is recomended for microcellular possibilties. Fourteen days on and 7 days off and side affects are really bad for me although this may be because I have other issues. Keep in touch - I am in Florida now with different oncologist and off pills after 3 doses of the regimen
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1 ReactionHow are things going? We have a virtual appointment with the surgeon on the 21st and until then we wait. Sounds like surgery is the plan (before chemo). Not sure when it will happen and we have so many questions on the recovery time. Hope all is going well with your husband. I continue to pray for you both.