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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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We had our virtual call with the surgeon today. Looks like we are in the same boat as you and your husband. They want to do chemo (and probably immunotherapy) for 2 months and then do surgery. They hope the chemo will clean up his lymph nodes and (fingers crossed) shrink the tumor. So now we wait to get in to an oncologist. Right now we have an appointment scheduled for Feb 6 but the doctor is going to try and get us in sooner just because we have been waiting so long. So hopefully we will know more soon. I will probably be asking you more questions as things go on. It appears your husband is a few sessions/meetings ahead of us. Did they say he would have surgery eventually?
Well, that is the hope but none of the oncologists would even consider it until chemo because of the lymph nodes. Which is frustrating on so many levels. I’m not frustrated with the doctors I’m frustrated with this stupid disease that showed no symptoms and now here we are at stage 3! And no clear road to surgery. But I guess it’s just a waiting game now to see if he responds. I’m sure they will want your husband to get genome and genetic testing. Ours are still pending. We only got 2 test results back as of now. This first week of chemo was ok for my husband though. No side effects. Thank God. My prayers are with you and your husband. Keep me posted. I’ll answer any questions that I can!
I completely understand your frustration. This disease has put a hold on our life and is keeping us from doing things we had planned like trips and such. We want to get the best care and leave everything in the hands of the doctors isnt a problem but not having even some control is so hard. Time just seems to stand still. How often is your husband getting chemo? Did they put in a port?
Yes he has a port and he goes once a week. First week is chemo and immunotherapy second week just chemo. Third week off
Where did they put his port? Sorry for the questions. Just want to know what to expect.
His upper right chest. It was a small procedure he was bothered by it at all. And now they can draw blood from it also and when CT scan comes they can inject through it also. Just need to keep an eye on it so it doesn’t get infected. But it looks good so far. Ask as many questions as you need! I’m here to help
That should say that he wasn’t bothered by it