Newly diagnosed ICC patient seeks other going through treatment

Kat hi,

Welcome to the boards.

I am also an ICC patient, diagnosed stage T2B in Feb 2014, and was forunate to have a resection a month later. In Nov, 2015 scans showed that the cancer was back with another small tumor in an operable location in the liver. That was followed a month later by another resection (smaller deal) than the first one. It has been over two years since my diagnosis and while the cancer has returned once, it was a long time out and the oncologist and surgeon at Mayo are hopeful that the second tumor was a stray cell from the first surgery. ONly time will tell. Meanwhile , I am trying to live life and enjoy my family, son, DIL, two little grandsons and husband. I have to admit that I do obsess about the cancer, that it may come back again, but for now, I”m trying to live my life as normally as possible….not just for me but for the sake of my family. But, it’s not easy for sure. Time has helped some and I know that being okayed to have surgery and having that be successful so far has helped considerably dealing with the diagnosis over time.

Julie T.

Dear Kathi,

So many of us never heard of cholangiocarcinoma until they or a loved one was diagnosed.
My mother is the patient and has never joined the board, but there are so many patients here as well as caregivers. And, there are many who have formed bonds and continue to communicate not only here on the board, but through phone calls or we see patients who live nearby each other getting together. Unlike other types of caner with large support groups, we are rare, but I am always so amazed by the compassion and caring of our members.

One note- my mother was also inoperable due to vena cava proximity- she was diagnosed in Oct 2013 and is doing great. Please tell your friend there is hope.

Take care,
Catherine

Hi,
My mom was diagnosed in late November with CC and when she went to the surgeon he said he couldn’t do the surgery because her tumor was too large and wrapped around her vena cava. So, he sent her to an Oncologist who started her on a cycle of Gemzar/Cisplatin-6 treatments but then 2 more added and then had PET and CAT scans. Her scans showed anything that was lit up on earlier PET was gone and that her tumor shrunk 30% from 11 x 9 cm to 8 cm x 6 cm. The surgeon said that she has made good progress but it needed to shrink more as it was part in the right lobe and part in the left lobe. So, she started on her 2nd cycle of 6 chemo treatments and will be having her last two next week and the week after and then repeat PET and CAT last week in April. We are hoping that the tumor shrunk the way the surgeon is hoping to the left or right but I have been doing a lot of research since her diagnosis on other surgeons as I don’t want to have just one opinion.

I found many doctors one doctor who was in NY, Dr. Yuman Fong is now in CA at the City of Hope. When I emailed him directly he emailed me back and told me to call him. He said he would be able to do the surgery and there is so much more for this cancer now then ever before. I never sent him my moms scans as she was refusing to go to CA as we are in Philadelphia, PA and she was set on her surgeon. However, Dr. Fong knows the surgeon that my mom is seeing and said that he is more pancreatic than liver-he may specialize in it but not the way liver surgeons specialize in it. So, in reading about Dr. Fong I came upon an article in which he did a complicated surgery while in NY with a couple other doctors and researched them. The doctor I was impressed with was Dr. Tomoaki Kato from NY. I emailed him, he replied back and I sent my mom’s scans to him. He said he can do the resection and this was based on scans from after her first round of chemo not the new ones. So, this gives me hope. I think I have finally convinced my mom that she needs to go elsewhere and you always need to get a second opinion.

She is like your friend she thought when she was going to see the surgeon she would be scheduled for surgery that following week-no her hopes went down. Then she did the chemo and she thought that after that cycle she would get surgery and nope not yet. So, since that time she is depressed, nervous, upset, etc..

I hope this information helps it has been a long 5 months as this came out of the blue but we hope that she will be able to have surgery.

I actually have under the Introductions page Doctor in Philadelphia area and Marion replied with a web presentation actually given by Dr. Kato. See if you can find it.

Hope your friend can find hope and cure.