Topic: New member - choledochal cysts

Hello Everyone,

I hope I am not intruding here, but at this time I am sort of without a place.

The short version of why I am here:
I am 52 years old and May 29 it was inadvertently discovered that I have Choledochal Cysts (Type IVa). I had gone to the doctor for a mild and constant lower left pelvis pain and when a GYN ultrasound didn’t show anything abnormal on the left side, my GP ordered an abdominal CT scan and the discovery of the cysts was made. They still do not know what is causing the pain on the lower left but at this point, I’m looking at it as a blessing. They did find that I do have a 4 cm right adnexal cyst that is being “watched” - I have a 60-year old sister who has breast cancer and had a mastectomy on May 20th and the evening I found out about my cysts (May 29th), one of my brothers died from brain cancer- Glioblastoma Multiforme.  I do not care for the word “watch”.

August 19th I will be having resection of the left lobe of my liver, gallbladder which is also “abnormal” and Roux-en-y Hepaticojejunostomy. Since the medical consensus is complete resection of the cysts I have not had a biopsy yet. We will find out if the cysts have turned cancerous with the surgery. I will be having my surgery at Kaiser Hospital in San Francisco – I don’t live in SF but it is the closest hospital with qualified surgeons. I joke with my husband about him being such a great guy I’m going to take him to SF for vacation.

As you all know better than me, it is a very scary time for me. I found this site in May shortly after I was told about the cysts and how they can progress and have been a lurker and last month registered as a user, but think now it is the time for me to take the step to say hello and ask for guidance.

I was wondering if anyone here had choledochal cysts. Since they are usually discovered in childhood, I have not been able to find much information on adult diagnosis.

Any insight to what to expect from the procedures I’m having done would be greatly appreciated. This is definitely unchartered territory for me. I have been told that the surgery will last 8 – 10 hours and that I will be in the hospital for 7 – 10 days but have no clue what to expect during my recovery.

Again, since I have not been diagnosed with bile duct cancer, I hope this is not an intrusion.

Prayers for you all -

Re: New member - choledochal cysts

Dear Cali,

Welcome to the forum and for taking the brave step and posting.   I can't answer your questions personally but I am in no doubt that someone here can.  There are certainly several who can talk you through the resection and recovery.

Clare

In the stars now . . . .

Re: New member - choledochal cysts

Hi,

The link below indicates the "may be risk factors "of cholangiocarcinoma.

http://www.cholangiocarcinoma.org/punbb … 121#p57121

Choledochal cysts is one of them.

God bless.

Please know that my personal opinion is not intended nor implied to be a substitute for professional medical advice. If  provided, information are for educational purposes.Consult doctor is a MUST for changing of treatment plans.

Re: New member - choledochal cysts

Dear Cali, welcome to the Best place to be for CC, but sorry you had to join us. I am so sorry about your family, my goodness, ENOUGH! You have all really been through it and then some. So glad you came forward and are no more a lurker. I don't know much about your surgery as my husband had a Whipple but I would like to take this time to remind all Members facing abdominal surgery to request an Epidural. I had one for my surgery and I tell you it does not hurt and you will have 24 - 48 hours of much less discomfort after surgery. It came to me just before they put me under and I asked the Anesthesiologist if I could have one and he said, SURE. With that said, I wish you the best of luck and will pray for God to come through the surgeon's hands!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: New member - choledochal cysts

Cali....hi and welcome to our site.  I don't recall anyone on this site reporting Cholangiocarcinoma due to the choledochal cyst and that may possible be related to the low risk factor of only 2 %.   Hence, I hope that you will belong to the benign group as well. In regards to your operation, it is the same resection (in most regard) to what others have posted on this site.  Therefore, you have company and hopefully plenty of advice coming your way in re: to what to expect and the recovery period.  Most likely they will have you up and moving within a day or two.  Make sure to insist on a pillow for coughing. By pressing it  lightly against your abdomen you will experience less discomfort.  Although, these types of surgeries are rather invasive, they are however performed frequently and have become somewhat of a routine for a select group of surgeons. 
I wish for the best, dear Cali, and for your recovery to be smooth and speedy. Please continue to put out questions; we are here to help.
Hugs,
Marion

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: New member - choledochal cysts

Hello again and thank you for the welcome!

Lainy, my surgeon did tell me that I will have an epidural so I guess that is good news for me! He said that they will start me with that and then do their best to stay ahead of the pain. He was very forthcoming about the amount of pain but I don't know if it will be from the liver resection or the common bile duct reconstuction - guess it might be from both.

Marion, from what I have been told the low risk factor of 2% for becoming Cholangiocarcinoma is after complete excision of choledochal cysts. The risk is much higher if the cysts remain and the risk increases with age which is why I decided to have the complete resection now. I am healthy so am expecting to hear benign!! I will hopefully remember what you said about the pillow - I didn't even think about if I have to cough.

Thank you all again for the good wishes and prayers!

Re: New member - choledochal cysts

Hello Group! My husband, age 66,  was diagnosed with Cholangiocarcinoma in May 2013 after a very short illness. Thankfully, our family doctor and our oncologist made a very rapid accurate diagnosis and he was referred to a wonderful specialist at University of Washington St. Louis, Dr. Chapman. My husband underwent a liver resection June 10, 2013. The surgery was a success, only a small portion of the left lobe was removed and the bile duct was repaired. The biopsy showed the lymph nodes were clear but there were some  cancer cells. My husband did not recover well from the surgery, in fact the next ten weeks were very painful, and recovery was slow, he lost 60 lbs, during recovery and it was weeks before he was able to walk on his own. His oncologist didn't think he was a candidate for chemo because of his weakened condition. Now he is recovering better, gaining some strength back, his oncologist wants to remove his port but my husband is afraid there will be a recurring tumor and he may need the port. What do you think, keep the port or remove it???? Any ideas?

Re: New member - choledochal cysts

VRSmith, Welcome to the best little club in the world that no one wishes to join! Congratulations on your husband's Surgery, we are a group that loves the word Surgery. I am so sorry he has had a rough recovery but I hope he is now walking the road and not climbing the Mountain. By the way you are with one of our top Docs. My husband never had Chemo but I would talk with the ONC and ask him what he feels about removing it. Say, are you anywhere near KCMO? I was born and raised there. Wishing you the very best and I know you will get comments on your question. Please keep us in your loop on updates as we truly care.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.