Topic: I was diagnosed with cholangiocarcinoma Jan. 14, 2008

Hello:

I was diagnosed with cholangiocarcinoma Jan. 14, 2008. Finished radiation & chemotherapy given at same time May 1. I did very well with very few of the side effects that some people experience. To have a C-scan to see just where I stand now June 12. Was told that sometimes they cannot see everything with a C-scan. I am hoping & praying that I am in remission. I could not have the whipple. The tumor is where the common bile duct & pancreatic duct enter the duodenum & involves the duodenum also.

Am trying not to dwell on this anymore than I can help & have a very positive attitude. The pain that I am experiencing usually happens soon after I eat "anything". Can't help but find myself wondering what will happen next & when. I really think this is normal. I have had 2 temporary stents placed in the ducts that really helped but was told they couldn't stay there all the time & each one has been removed. This is when the pain really started back. Do any of you know if it is possible to put a metal stent in that could be left there so the digestive juices could flow freely & possibly relieve me of some of this pain?

This is the first time I have posted anywhere & would appreciate any feedback any of you could give me. If you have questions that would help you in helping me I will be glad to answer them.

I am sorry for any of you that are going through this & for your family & caregivers too. The hardest thing for me to do was to tell my family & to see the hurt in their eyes now. I have a wonderful, loving husband that really looks after me & my every need, even some I haven't even thought about. I know the Lord has blessed me with him. I really feel sorry for anyone with this cancer or any of the others that do not have the love & support that I am receiving from my husband, my son, grandchildren, extended family & close friends. It helps more than anything in this world except for my love of God & the love I know he has for me. Thank heavens I am not afraid at all. It is really strange almost the calmness & peace that I feel. It even amazes everyone including my Pastor, the doctors, etc.

Thank you for any comments that you think might help me. So glad I found this website today. This cancer is so rare it is hard to find a lot about it.

Take care & have a wonderful week.

Ellen

Re: I was diagnosed with cholangiocarcinoma Jan. 14, 2008

Welcome to the website, Ellen.  This is the best place on the web to get the support and information you need.
I had a lot of pain at first too, because I was unable to digest my food because of the blockage in my bile ducts.  The stents really helped, although I was in and out of the hosptial due to infections.  My stents were plastic.  I don't know much about the metal ones.
I am glad that you too have faith.  It is times like these when the rubber meets the road and our faith is tested. We all need something or Some One bigger than ourselves to draw strength from.  I don't have a husband, but I do have wonderful parents and children that help me get through the day.

3 (edited by marions Mon, 02 Jun 2008 02:14:31)

Re: I was diagnosed with cholangiocarcinoma Jan. 14, 2008

Ellen,
so nice for you to be posting here especially, since this is the very first time for you doing so.
Digestion issues are commong even post surgery.  Stool softener became part of the daily routine for my husband, and it helped tremendously.   Also, have you mentioned to the physician the discomfort you are experiencing? And what was the reason for the removal of the stents?  When do you have pain?  Is it always associated with the digestion?  I am sure for others to have some suggestions for you.
Marions

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: I was diagnosed with cholangiocarcinoma Jan. 14, 2008

I dont have any knowledge on metal stents, but just wanted to say welcome and you are in the right place. I hope your scans show you nothing  but excellent news.

Kris

Cancer is a word, not a sentence.

36 year old patient with buckets of hope

Re: I was diagnosed with cholangiocarcinoma Jan. 14, 2008

Thank you Lisa, Marions & Kris for your great replies. The stents I had were plastic. The 1st one was removed via ERCP & May 5th I had another ERCP to have the 2nd one removed & the doctors couldn't find it. It had come out by itself & probably had passed through me. The reason I was given that they couldn't be left in was if they stayed in too long there was risk of infection. I do know I feel like a different person when I have a stent in.

Marions stool softener has become part of my regular routine also. I use one with a laxative & still use glycerin suppositories at times. I have pain at anytime but it seems to always happen after I eat. My ducts are blocked also when the stents are not in. Will call the doctor today to see if it is possible for me to get a stent that can at least stay in a while. I tell all the doctors about my pain when I speak to them. So far I was told to just take pain meds which help but I hate the way they make me feel. I think I am going to have to take them but it sure does go against my grain.

Lisa the "Rubber sure has hit the road" around here. Loved this one! I am so glad you do have wonderful parents & children that help you get through the day. Did you have the Whipple procedure? I couldn't have it but from all I have read about people that did I don't know if this is a good thing or a bad thing.

I can't tell you how much I appreciate all 3 of you responding. This is the first time I have talked to anyone who knows anything about this type cancer & I can see already that it sure does help tons!!!!!

Hope you all have a great day & thanks again,
Ellen

Re: I was diagnosed with cholangiocarcinoma Jan. 14, 2008

I wanted to add that to me my case has been very confusing. I was diagnosed at UVA/Charlottesville, VA. The gastroenterologist/oncology called the cancer Cholangiocarcinoma. The surgeon that decided I couldn't have surgery called it Ampullary Carcinoma. A # of others have called it Pancreatic Cancer. If I ask a doctor what it is I usually get a different answer. The doctor in charge that diagnosed the problem & the doctor in charge of chemotherapy call it Cholangiocarcinoma. This is the only one that more than 1 doctor uses. Has anyone else run into this? The only thing I know is I wish it wasn't any of them!

I will stay in charge of the cancer. The cancer will never be in charge of me!

Re: I was diagnosed with cholangiocarcinoma Jan. 14, 2008

The saying goes that "cancer is a word, not a sentence."

I did not have the Whipple procedure.  The tumor had shrunk so much that the surgeon believed that he could get it all out.  It was very disappointing to wake up and find out that they could not remove it.

So the fight continues.  Surrender is not an option!