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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.
Regards to second opinions, I think it’s a good idea to pursue because this disease is quite complex and doctors have varying degrees of experience with it.
In addition to what surfer recommended above, in Los Angeles area, UCLA is another good option. My dad had his surgery with Dr. Busuttil at UCLA. He’s a very good surgeon who sees lots of cases on cholangiocarcinoma. Also, within CA, you can reach out to UCSF and Stanford in NorCal.
For out of state second opinions, my dad has managed care as well, which restricts where you can go. So I looked for places that were willing to do second opinions over the phone. The surgeons that were willing to review my dad’s files included Dr. Tomoaki Kato at NY Presby, Dr. Chapman at Barnes.
Best of luck.
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.
Carl and Toongirl,
Thanks for reviving this thread, I too would love to hear more of your experiences in nutrition. We have been doing more research on this topic since my Dad was diagnosed with the disease, and it would be great to share the info. I will post more later (holiday cooking a priority right now!) on our experience, but I’m really looking forward to sharing experiences and learning from you.
JulieDecember 23, 2013 at 4:37 pm in reply to: Occult Hepatitis B Virus Infection in Chinese Cryptogenic Intrahepatic #78085
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!
I am by no means an expert on scans so speaking from experience of being my Dad’s advocate.
From my understanding, scans are generally 2-dimensional whereas tumors are 3-dimensional, so depending on which angle the radiologist is looking from, the measurement of the tumor(s) can differ even if the tumor’s size did not necessarily change.
Also, different radiologists looking at the same scan could also spot differences, one radiologist told me that sometimes, looking at scans is not just a science, but also a bit of an art (in which case experience does matter).
I would absolutely recommend you talk to the doctor about your question on the scans, but more likely than not, the radiologist would be able to give you a more clear answer than the oncologist. Hope this helps.
Thanks Percy, your advice is always appreciated, I was secretly hoping you’d respond to the post!
Just to tap your knowledge a bit further – can you share your understanding of the effectiveness of RFA if the disease has spread?
The oncologist my Dad has been seeing at UCLA says there is no role for RFA when the disease has spread beyond the liver.
Thank you!November 18, 2013 at 4:14 pm in reply to: Body’s natural defence carries early warning system for recurring canc #77255
Thanks Gavin and Jason.
This link worked for me!
Percy and Marion,
Thanks to you both for the replies. I will await for your update Marion.
I wanted to follow up on this thread and see if any others have done genetic testing by FoundationOne?
Would love to hear of your experience with it.
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.
My Dad was diagnosed with intrahepatic cholangiocarcinoma after his resection at UCLA. The scans couldn’t discern what type of tumor it was before the surgery, but the surgeon at UCLA decided it was best to remove the tumor regardless given the size of ~6cm. Since your insurance has contracted with UCLA, it could be another place for you to get a second opinion. The Pfleger Liver institute is the place you will want to contact. The surgeon my Dad had was Dr. Busuttil, and his oncologist right now is Dr. Finn. They are experienced with CC patients, but UCLA does tend to be more conservative and I do agree with Mark that USC’s Dr. Selby is the person you’d want to talk to, especially if others say no.
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.
I am so happy to hear that the CT scan was clear, hoping that the CA 199 will go down from here.
Keeping you in my thoughts. Big hugs!
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.