Recurrent Cholangiocarcinoma

Hi heartdoc,

My situation unfortunately parallels yours.
My mom had a partial hepatectomy in July 2010, a year ago, with a Roux en Y repair, and she had complications of biliary peritonitis, sepsis and massive intraperitoneal fibrosis which require a second adhesion removal surgery in August 2010. she was finally strong enough to go through 2 months of xeloda and gemzar iv before she started getting episodes of recurrent cholangitis. The horrible part for us has been to watch her suffering.
Last night she went in for what was supposed to be a bile duct repair due to the recurrent cholangitis, and they found a recurrence; a 2 by 2 cm tumour which wasn’t seen on any of her pet CT scans, or her CT or her ultrasounds. Her tumour markers were very low to start with and were coming even lower as they treated her with iv pip tazo and then moved onto imipenem since she developed resistance to the pip tazo. We are in Canada, doing some hybridized care between the US and here. Her oncologist is at the Seattle Cancer Care Center, because that’s where she chooses to be, even though we took her to NYC last fall to memorial Sloan Kettering with Dr Goodman who was great. She offered my mom targeted radiation therapy at that time and stated there is a crucial three month window post resection where you should do something if you’re going to do anything at all. My mom refused at that time, we struggled as a family of physicians, my husband is a radiologist, Dad is a doc, Sis is a doc, and myself albeit we are in different specialties, it truly has been a nightmare for us because as we help our own patients beat and maintain their chronic diseases on a daily basis, we endure the physical and deeply emotional suffering of my mom. Her fighting spirit has deteriorated, and she is post op right now, and doesn’t even know that the so called bile duct stricture as seen on HIDA scan and cholangiogram is actually a 2 cm tumour.

I am awake at 4 am on this forum because this is a site which has been an invaluable resource to myself and my family. My husband keeps asking why they never did any MRIs on her over the last 6 months; she’s had multiple CT scans but he says that MRIs are more sensitive a specific, and can highlight the biliary tree very well. We live thousands of kilometers away from my family, that also makes it hard. I try to keep the hope for my mom, and try to ask her to treat it like a chronic disease, diabetes, asthma, etc. But she has trouble understanding this approach and has a huge amount of comorbid depression, understandably. She has been seein a counsellor and a neuropschiatrist with mixed results.

All she can tell me is ” when I get better, I won’t be depressed anymore.” It is painful and heartbreaking for all of us, but especially her. They say half the battle is psychological, I wish she would take on a more positive and fighting spirit. We all need to be strong and band together for our loved ones.

Goodluck with her progress, I agree you should always seek a second opinion.

Hi Heartdoc,

Welcome to the site. Sorry that you had to find us all and I am sorry also to hear about your mum. I can’t really add anything to what the others have said to you but I just wanted to come here and welcome you here.

You are not alone here and we know what you are going through. I came here back in 2008 when my dad was diagnosed with inoperable CC and everyone here was such great support to me, and I know that everyone will also be of great support to you as well. My dad chose not to have chemo at first as he wanted to have a good quality of life for the time that he had left, so he had PDT as his first treatment with the possibility of chemo to follow. But as things turned out he couldn’t do the chemo. But he made the most of the good time that he had and he evn learned to ride a horse. I too hope that your mum will make the most of this time and enjoy life as best she can, and I am sure also that you and her grandkids will indeed make many happy memories for your mum.

I do hope that you will keep coming back here as we do know how you feel and what you are going through right now and we care.

My best wishes to you and your mum,

Gavin

Hi HeartDoc,

I understand what you are feeling. I am a Cytologist and was the one that diagnosed my Mom. I can’t tell you the range of emotions that passed through me when I saw those cells under my microscope. I’d seen CC once in the 30 years I’d been in cytology.

My Mom was treated at Duke and she was Stage IV with mets to the lungs when diagnosed. She was 76 and still working full time (by choice) and walking 5 or 6 miles a day. She had a bout of pleurisy and the cancer was found when doing a CT scan to r/o a blood clot.

Please make all the memories you can. My Mom lived almost exactly one year from diagnosis to her death. She danced at her only Granddaughter’s wedding and saw the birth of her second great grandchild. She was an amazing woman and I miss her every day.

You will get through this and you will be an advocate and a legacy for your Mom. Come here often….we are knowledgeable and caring.

I’m sending hugs and prayers for strenght,

Pam

Dear Heartdoc, welcome to our wonderful family. I cannot even imagine how tough it would be to be in the medical profession and still try to be positive and strong about your Mother. We have a saying around here and that is we try to be realistically optimistic. This is strange to ask a doctor but have you sought out an other opinion? We have had some good success stories here because of 2nd opinions. Also where is your Mother being treated? Please don’t listen to statistics, we seem to make our own. You have come to the right place to ask, vent or advise with the most caring, loving and knowledgable people. Please keep us posted on your Mother.