jz

Carl,

You mentioned the difficulty of doing genetic sequencing given the lack of biopsy sample. In researching different genetic sequencing options for my Dad, I came across a company that’s doing sequencing using blood samples. The researchers came out of Stanford and are working in collaboration with several large hospitals, including UCSF. It can be worth a try. https://www.guardanthealth.com/patients.html

Best of luck to you and Lynn, I’m sending you my best wishes.

Julie

Hi,

I am not a doctor but from talking to my dad’s doctors on the issues you raised, here are some thoughts for you and questions for your doctors.

1) Pathology result of tissue is the most reliable indicator of what a tumor is (benign or malignant, and type of malignancy). While some diagnostic radiologists can tell what a tumor is from looking at scans (CT/MRI/PET CT etc.), even they will say it usually is not with 100% certainty until confirmed by pathology work. Having said that, since you already have multiple scans, and a MRCP coming up, you could get copies of those scans and ask for second opinoions from multiple radiologists, especially ones familiar with liver tumors, to see what they say. You would want to know if the tumor is i) benign vs. malignant, and ii) if malignant, with how much certainty is it cholangiocarcinoma or hepatucellluar, or something else.

2) Seeding is a concern in biopsy, but multiple doctors have told me that the likelihood of it is very small. You’d want as experienced a doctor to do it as possible so getting it done at a major hospital is worth it and likely decreases the chance of seeding happening. The percentages quoted on the internet are averages that don’t take into account the quality of care of different institutions so the numbers can be misleading.

And as a personal anecdote, my dad’s tumor was ~5cm when it was diagnosed and his surgeon at UCLA (Dr. Busuttil) recommended resection right away without a pre-operative biopsy. I don’t know if that is conventional or not, but the diagnostic radiologist felt strongly the tumor wasn’t benign so from the surgeon’s perspective, given the size, it made sense to remove it sooner rather than later, and biopsy with pathology results afterwards, which indicated it was intrahepatic cholangiocarcinoma.

Hope this helps.

Gavin, I concur with Willow’s comment – thank you SO much for all the research you do to keep us updated. I learn a lot from the links you post, so thank you for all the time and work you put into it.

Have a fabulous holidays!

Percy and Marion,

Thanks to you both for the replies. I will await for your update Marion.

Julie

Pattimelt – my Dad’s surgeon at UCLA was Dr. Busuttil and his oncologist is Dr. Finn. Both are experienced with cc.

If I may suggest, having dealt with insurance on getting approvals to see doctors etc, please do go see Dr. Chandler. If he’s not the right person because of his area of focus or expertise, ask him to refer you to the right surgeons and oncologists at the Pfleger Liver Institute at UCLA which is where the liver specialists reside. His referral could get you to the right place within UCLA faster than trying to argue with insurance.

Best of luck.

Bob and Nancy,

I’m truly sorry for your loss. I’ve followed Jeff’s journey since joining this forum, and have always been inspired by his bravery and spirit. From your posts, it’s not hard to see you’ve also been incredible parents.

Many hugs.

Julie

Hi,

I just wanted to add a point about stress though not directly related to cellular memory. I’m reading a very good book called “Why Zebras don’t get Ulcers” by Dr. Sapolsky at Stanford which is a fun and informative read on what stress is, how it impacts our bodies and our well being. It’s well researched and scientific, not pseudo science. And what I’ve gathered so far is that stress not necessarily a direct reason for diseases, but if a person is in an extended state of stress, the impact on us physically and mentally can be very debilitating, to the point where it alters the way our body defends itself and significantly affect how effective our immune system performs etc.

Another way to think about it is – during a football game, the performance related stress can turn the body into a heightened state that leads to an athlete’s optimal results, but if your body is in that state for an extended period of time (say, as a result something very emotionally absorbing like a difficult divorce or terrible boss that hovers over you all day long) then those stressors eventually tire your body out and make it more susceptible. And when our bodies are susceptible, diseases are more likely to manifest.

I hope this helps, one layman to another.

Julie