willow

So sorry for all you are going through to get the best care for your husband. Just want to mention that UCSF is a good place for CC too.
As an example, my good friend said complicated heart surgeries get referred outside the the Kaiser system to Mercy hospital in Sacramemto all the time because they have a great heart surgery program there. She is a cardiac surgery ICU nurse. I imagine there might be a way to get referred to a top liver surgery center outside the Kaiser system if Kaiser doesn’t handle a lot of CC-related resections. I really don’t know though. Its a full time job managing the insurance sometimes.
Sincerely,
Willow

Adam,
You have been a wonderful son and advocate for your father. This situation/stage is really intense. I was in a similar situation with my father less than a year ago. My feeling is that I didn’t want to subject my father to more procedures to prolong his life when he was already suffering and there was no chance for a full recovery. Each procedure, while treating one problem, can add new problems. My thoughts are with you and your family during this difficult time.
Willow

Nikki,
I would bring your questions/reservations about your Dad’s diagnosis to the doctors. The following are just my opinions based on other discussions and research.
It is my understanding that Cholangiocarcinoma is considered a primary liver cancer, even tough it doesn’t arise from hepatocytes (liver cells). CC is less common than hepatocellular carcinoma (the primary liver cancer that DOES arise from hepatocytes). Then, incidentally, there are cases which appear to be a mix of these types, like my sister’s case. When they say CC “metastasized to the liver, they mean it spread from the bile duct tissue to one or more locations in the regular tissue of the liver. Because bile ducts/bile production are located in the organ we call “the liver”, I think that’s why CC is considered a primary liver cancer. The ducts exit the liver at the common bile duct. Because of their unique tumor biology, symptoms and disease progression, we know that there are completely different and distinct cancers that fall under the name CC. Their names depending on where in the biliary tree the original tumor is thought to originate. Getting the correct diagnosis affects treatment decisions. That said, I learned recently that invasive diagnostic procedures (that could spread the cancer) should be done only after evaluation by a tumor board at a major cancer center known for treating large number of cholangiocarcinoma cases.
Lastly, it is also my understanding that the ca 19-9 isn’t definitive for diagnosis and that’s why they only look at its trends but not for specific numbers. It can also be influenced by factors other than cancer.
Willow

That is fabulous news! Thank you for sharing this, Marion!

Lainey, what a day! Fabulous suggestion by the surgeon to check things out further. Praying his hunch is correct that you are cancer free!
Willow

Lainey,
What a blow! I am so sorry about this awful development. So glad you have loving family nearby to help you through. Hang in there dear Lainey.
Willow

Kris,
This is wonderful. Your oncologist sounds like a go getter. My sister saw a new onc today at UCSF who is the first to suggest she get genetic testing of most recent biopsy sample. She said Foundation 1 would do it and it would cost $2,000 (assume ins won’t pay at all). She is considering it. She has other biopsy from 1.5 years ago too but I’m wondering if the samples are prepared and stored right for this kind of testing. I mean, they were taken for a different diagnostic purpose so I am curious if they are in the right condition/format/prep for the genetic testing.
BTW, that song chokes me up too… Keep on singing Kris!
Willow

Kristin,

I feel like you do. Never have taken anything for anxiety or depression in my life (I’m turning 50 in June), but am wondering if I too might need something one of these days. As busy as you are, you may wonder how you will find time to care for yourself physically and mentally as well as finding more time to be with your Dad. As Randi said, many schools have counseling services for free or can refer you to the right place. It is completely to be expected that you are sad, stressed and anxious. You may also be experiencing anticipatory grief. Adequate rest, time for reflection, exercise, therapy and time to be with your Dad are hard to fit into your current busy life. You may find that something has to “give” for a while.
Your situation reminds me of a personal story: When my sister-in-law was in her 20’s, working full-time by day and in law school at night, she was living with and caring for her 51 year old mom with advanced breast cancer. After her mom (my MIL passed), my sis-in-law’s grief finally caught up with her. She started to do really poorly in her classes and not showing up sometimes. She simply couldn’t stay focused. The school put her on academic probation and they could have kicked her out but instead, they asked her about her situation and then they let her make up the work. My point is, it is better to be proactive and let them know your situation before you get into hot water. Taking a leave is certainly something to consider either sooner (to care for your Dad) or later, if you feel you can not focus enough to succeed and need time to grieve. All my best to you, Kristin. Willow