Posting my husbands battle with CC as there is HOPE!
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Brenda I am sorry to hear of your sisters diagnosis. I know how shocking it can be. It just plucks seemingly normal healthly people from obscurity and throws them in a battle for their life. I will pray that your sister is able to receive surgery as that is the best case scenario right now….
Hi Patty, sorry to hear about your cc. I hope you are taking advantage of everything being offered to you. I am unsure of the size of his tumour but will look for it this week. You take care and keep us posted on your treatments….
)))))Hi Brenda,
Welcome to the site. Sorry that you had to find us all and I’m sorry to hear of your sister. But I’m glad that you have joined us all here as you will get a ton of support and help from all of us. And please, if you have any questions then ask away and we will all help if we can.
I know what you mean about being in shock right now. Hearing a diagnosis like this of a loved one is so very hard to hear, and when we were told of my dads CC it felt like I was hit in the head with a bat. His CC was deemed inoperable from diagnosis and that was hard to hear.
I know that right now your head will be spinning with all of this. Taking in the diagonsis and hearing about test results and having to hear stuff that you will never have heard of before is so hard to do. But we are all here for you and know what you are going through right now. Marion is so right about knowledge being power here and the more you learn the better informed you will be. Also, taking notes at meetings and having prepared questions to ask is also excellent advice. Many times I took my dad to meetings with his specialist and it is very easy to forget information that you receive or questions that you wanted to ask.
Hopefully now that your sister has a stent placed then this will allow the bile to start flowing as it should again and I know that this will help her feel so much better, and it should also help with relieving the itching. My dad had the dreaded itching as well and he felt so much better once his stent started working and the bile wa draining again.
I hope that your sisters meeting with the surgeon goes well and that she gets some good news here. Please let us know how she gets on and remember that we are all here for you and we care.
Best wishes,
Gavin
Hello Brenda…I would like to follow Nancy and welcome you to our site. Receiving the diagnoses of Cholangiocarcinoma always is difficult to swallow, but with it comes an enormous amount of strength and determination to beat this cancer. Any cancer diagnoses is shocking to the receiver however, this one has the added layer of isolation of a rarely occurring disease. But we are in this together and that in itself is the one gift we can give to each other.
You will have much more information coming your way via the visits with the physicians. Therefore, using a note pad or a recorder will aid you in recalling the information at a later time. It also helps to pre-pare some questions beforehand. With time you will gain much knowledge about this disease. Knowledge is power and this knowledge will aid your sister in making educated decisions.
You are a great sister by supporting her in the way that you do.
Good luck with the upcoming office visit and please, keep us posted.
All my best wishes
MarionHi Brenda, I certainly understand the shock you are feeling. It was a complete shock to our family when my very active husband was diagnosed with stage 4 cancer last October.
I am sending positive thoughts that your sister’s cancer has not spread from the bile duct. It sounds like they did a good job finding that growth right away. Cholangiocarcinoma is not always that easy to diagnose.
We are here for you.
Oh, you posted on a existing thread. You may want to repost under introductions and hit “post new topic” on the top right as you may get missed here. Takes a bit to learn how to navigate the site but it gets easy. Best wishes. NancyHello,
My name is Brenda and I live in New Zealand. I have found this site due to my sister’s recent hospitalisation. She is 52 and has been told following abnormal liver function tests, jaundice, itchiness, abdo discomfort/pain, an USS, ERCP that they have found a ‘growth’ which they suspect is cancerous in her bile duct. They did place a stent to allow bile to flow through the duct. Last week she had a CT and this afternoon we are off to support her at an appt to see the surgeon to find out if the cancer has spread, and options for treatment etc. She has also been told that she will require an MRI and Endoscopic Ultrasound. I am hoping that they have made a mistake and ‘got it wrong’. I am reassured that there is support from you all on this site. Our family are pretty much in shock but i will be glad to find out more so we can figure out what to do and where to go from here.Deanna, I am so very happy things are going so well, I have joyful buckets of tears. What a wonderful Granddaughter you must have. I am sure that her Grandpa is now her hero!!! Keep up the good news!
Hi Deanna~
Welcome to the BEST site for info and support Can I ask how big your husbands tumor was? I hope he recovers fully and HUGS to you as his caregiver. I am stage IV with CC and my tumor is 10 cm X 10 cm. No luck with a surgeon taking my tumor out at this point.
Patty in IllinoisThanks everyone for your kind words. I posted our story because when George was first diagnosed a read alot of postings on here. And i cried alot when I read them as it was too late for so many. For the newly diagnosed i wanted them to know to do everything possible to get the surgery. George’s liver enzymes were better this week so he started back on chemo today and I noticed there is a little more bounce in his step, the not knowing what was going on was very stressful for him. I truly believe that Dr. Hanna was right – they both had angels with them that day – he has never had anyone survive surgery with that infection. It was a first! So pray alot and be grateful for all we have. Cancer is so mean, it took my father at exactly the same age as my husband is now – its like a curse! But we have to fight back. Our 10 year old grandaughter is walking in the Terry Fox Run Against Cancer on September 18th to help raise funds to find a cure for this terribel disease….she has raised $57.00 so far – you go girl!
Hi Deanna, Thanks for sharing your story! I am so glad you guys fell into the hands of a wonderful surgeon! Sending lots of healing thoughts and wishes for a speedy recovery. Keep in touch. My husband Doug is fighting cc and we are in Revelstoke BC. Nancy
Deanna
Thanks for sharing your brave fight with CC. I’m so pleased you found an experienced surgeon to operate – George is a true survivor. let’s hope the good news continues.Gerry
Dear Deanna & George, welcome to our wonderful family but sorry you had to join us. Congratulations to George for his recovery from a huge surgery and he is now a CC Survivor! I hope that George continues on his path of recovery without any hiccups! How wonderful that you found the right doctor and that the surgery went well with God working through the Surgeon’s hands. It is a long, long recovery but little by little George will add more activites to his daily life. I wish you both the best and please keep us posted.
Deanna and George: Welcome to the site that no one really wants to join, myself included.
My husband Tom has been KICKIN’ this cancer for 3 1/2 years now. He was given 6 months to live after a successful left lobe resection. Actually they removed part of the right lobe of the liver too. About 80 %. He did quite well for 18 months, then presented with Jaundice. His then oncologist told him to go home, radiation and chemo would not help.
We didn’t just go home and make plans. We came out KICKIN’ and got more opinoins and went with 28 rounds of radiation, then oral chemo (xleoda) then some iv chemo (Gemzar and Cisplatin).
Currently Tom is now KICKIN’ to regain some of the weight he has lost by boosting up his caloric intake. We are fortunate to have a entire clan of people who pray for him daily. We never take no for an answer, we ask questions, we seek other options. All of that has given him over 20+ months from the day that his ‘then’ oncologist told him to go home an prepare to die, nothing would help him.
So you and George start KICKIN’ right along with us. We are here for you. Please feel free to ask your new ‘family’ anything you need to ask. Someone will have the answer I’m sure. We have all been through so much. And remember Deanna, take time out for the caregiver as well. Even if it’s only an hour. I take 20 min in the morning and 20 min in the evening to walk. Otherwise I work at home and am with Tom 24/7. And as a result of my ‘walks’ I’ve lost over 60 lbs now and am more healthy so I have more energy to take care of Tom!
We just got a baby monitor, cause sleeping in bed is hard for Tom, and our bedroom is at the other end of the house. Now I can hear him yell for me when he needs help! Before I couldn’t hear him. He also has a whistle that he can blow if he needs immediate help. Keep all this in mind.
Go with God and KEEP KICKIN’ THAT cancer.
Hugs to you both and welcome to our family.
Margaret
Hi Deanna….I would like to follow Gavin and Cathy and welcome you to our site. I echo their comments in that everything has worked in your husband’s favor beginning with the surgeon and the excellent care received. My fingers are crossed for a quick resolve to the current, elevated liver enzymes. Again, thanks for joining in and know that tons of good wishes are coming your way.
MarionDeanna-Welcome and sorry you had to find us. Thanks for posting. Your posting shows us how important the right doctor is, it is litrally the difference between life and death. I am a CC survivor and give all the credit to God and Dr. Chapman. I know that if my own doctor hadn’t been on vacation I would probably not be posting. My own doctor would not have had the knowledge or expierence with CC and the false negative would be accepted and we would have a done a wait and see. Time is not our friend!!
Lots of prayers_Cathy
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