Elevated CA 19-9 in setting of PSC
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Hi Rick,
Hope you received my reply to your e-mail request.
24/7/365 here anytime you need to discuss CC, and just about anything else.
Raye
Rick;
Just wanted to know how you are doing? When are you going to be at Mayo? Have you found out anymore on a diagnosis?
Take care and God Bless,
JamieHi Rick,
My spouse’s CC presented itself at the junction of the cystic duct and the hepatic duct. It squeezed the cystic duct causing the GB to expand and the pain of that stretched bladder triggered GB laparoscopic surgery. In the prior two weeks, Mary had 4 ERCPs at two different hospitals with two different doctors, stents were placed BUT the ERCP path reports were negative. The presumptive diagnosis was CC but there was no justification for further work. Then, the GB pain became so great something had to be done. The pain went from feeling fine to level 10 in about eight hours.
The path report from the GB removal was negative in the GB and the cystic duct. However, one of the several lymph nodes presented cancerous material so a liver trisegmentectomy was scheduled. On May 11, they removed 80% of her liver and did a Roux en Y to connect her stomach, remaining liver and intestines together. That path report confirmed CC throughout the liver and also reported inadequate margins for the CC. As of this week, she is completing her six weeks of chemo and radiation therapy. Then she gets a break and we decide on further chemo at the end of September.
The bottom line is simple. The external tests never confirmed the presence of CC. The GB and cystic duct were clean. It was the lymph node from the GB resection that confirmed the cancer.
Feel free to peruse her story on our website. http://www.lamey-hughes.com
Hi Rick good luck with your diagnosis and treatments whatever they turn out to be.It must be very worrying for you with the young family
kind regards JanetHi Rick;
Sorry I don’t have any info for you on cystic duct cc but I also am going to Mayo, have been since Oct 07. If there is anything I can do just let me know. It is a really good sign that they have found whatever type it is early. I am going to pray that it is not cc. You have 2 very good reasons and soon a third to fight whatever this is. As others have said attitude it really important. You have much to live for. Just remember to always keep hope alive and a fighting attitude. Just my opinion. Again let me know if I can help in anyway.
Take care and God Bless,
JamieHello Rick and I’m sorry for what you’re going through. I’ve heard great things about Gores and Mayo. While I can’t address your question, I just wanted to welcome you to the site and send wishes of strength right back at you. I’m sure you’ll get more feedback to this thread in the near future.
Tess
Rick,
Welcome to the site. I don’t have the answers for you, but you have come to the right place and I am sure someone will be here soon that can give you some good advice. I am so sorry that you have a need to be here, but this is the best place to be for advice & support concerning this awful, relatively rare type of cancer. There are a lot of wonderful people here all willing to help when & where they can.
Please let us know how things are going for you. I can only suggest being cautiously optimistic. As one of the great people on here always says, “attitude is everything”. You have so much to live for.
I will be hoping for the best for you & your family.
Darla
Welcome, Rick, to the best little club in the world that no one wishes to join. You are at one of the best hospitals with the best doctors. Not sure about the Cystic Duct. My husbands was in the bile duct valve and he had a Whipple 4 years ago this month. He is now 77 and doing very well. It is always so scary when the diagnosis is first given. After all who has ever heard of this? Please try to read up on this as much as you can as to be fore warned is to be for armed. We have a search engine at the top of the page.Honestly, soon the fright will turn to fight and then you become your own best advocate. Everybody is different with this monster so no one really knows for sure that they may only have months to live. Don’t think that. Instead try to program your mind to have HOPE and your spirit to have ATTITUDE. Please let us know what the doctors say and feel free to visit here often to ask, vent or advise.
I just spend the last 4 days at Mayo/Rochester after a local bloodwork showing CA 19-9 of 5632. Tests at Mayo included MRCP, abdominal ultrasound, Endoscopic Ultrasound, and ERCP. All results are in except for the FISH staining from ERCP. They have not been able to establish the diagnosis yet but strongly believe it is present. I was sent home for the weekend and will be getting called back by Dr. Gores next week to discuss course of action.
There is some blockage of cystic duct as it did not fill on the ERCP, but nothing showed up here that was significant on MRCP, US, or EUS. This is where they think the cancer is. I haven’t been able to find any information on how to treat CCA in the cystic duct and in the setting of PSC. Any suggestions or recommended reading out there?
Both Dr. Lindor and Dr. Gores at Mayo believe that this is an early cancer, but aren’t sure how to proceed. Dr. Gores has mentioned both Whipple and Transplant protocol – but has not decided on the course of action yet. I think he is waiting on pathology from FISH/ERCP. I’m terrified of this – I have a 2 year old daughter and a wife that is 7 months pregnant. I can’t bear the thought of dying on them!
If anyone has experience with cystic duct CCA and treatment options, I would appreciate your feedback. I wish you all a great deal of strength to battle this horrible, horrible cancer.
Rick
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