My Wife has CC

Victoria.

We were told they always save and freeze extra tissue when they preform a biopsy; I would think/hope they do the same during surgery. With Mom, they had not saved enough tissue during the biopsy, so her ONC took a blood sample and sent it to a company which does the testing through blood (Guardant)

However, tissue is still the best source and many on the board have had their tumor testing done by Foundation One. This is becoming a common part of the diagnosis/treatment protocol in major cancer centers. But, even if not routine where your husband is being treated, you should be able to ask your ONC or surgeon if a tissue sample was saved and ask your ONC to send it out for testing.

Take care,
Catherine

Ron….I came across this article. Although it focuses on Renal Cell Carcinoma (kidney cancer) I find some of their findings regarding tissue samples should be looked at for our patients as well.

Quote: “PD-L1 does not work as a solitary predictor of outcome in kidney cancer, however, or as a means of selecting patients, especially since when looking at tumor biopsies for PD-L1 expression, one biopsy alone may not provide a good representative sample, McDermott said, which may explain why some PD-L1–negative patients have a prolonged benefit. For example, in the nivolumab phase III trial, patients with negative PD-L1 expression had higher median OS compared with PD-L1–positive patients on nivolumab (27.4 vs 21.8 months, respectively). –

A study of the difference in PD-L1 expression between the primary tumor and metastases sites in RCC showed a 20% discordance in expression between the tumors.

Note: A needle biopsy of the primary tumor is therefore not suffcient for a representation of the patient’s predicted outcome.

“In the ideal setting, we believe that when you’re deciding about immunotherapy for a patient’s kidney cancer, you should probably biopsy the metastasis soon before you’re starting treatment, and you should be considering an excisional biopsy,” said McDermott.

See more at: http://www.targetedonc.com/publications/targeted-therapy-news/2016/October-2016/expanding-the-reach-of-immunotherapies-for-kidney-cancer?e=marion.schwartz@cholangiocarcinoma.org&e5v=default&e5k=default&utm_source=Informz&utm_medium=Targeted%20Onc&utm_campaign=GU/CRC%20RC%20eNews_unsponsored_12/28/16#sthash.ZFeE30BE.dpuf

Hugs,
Marion

Ron,

Sorry to hear that. I have spent a lot of time at the University Hospital in Denver with my mother. I watched that place get built.

By and large, there are good people there and one or two I’d like to punch in the nose, but if I were you I wouldn’t be afraid to look elsewhere to deal with this particular cancer. The surgeons in Denver told us that surgery was not an option, definitively. In fact, one of them (I can’t remember his name, I think he was from Argentina) basically challenged me to prove him wrong. 6 months later I found a surgeon in LA that said he could totally operate based on the info they had at the time.

I like the University Hospital, but its also a big mall. They just keep coming in trying to sell you on their services, endlessly.

Also, I would not put too much expectations on the performance of those stents. They get clogged easily and stop working. They only worked for a very short period of time for my mother. She had external drains put in on each side of the liver. Which is not ideal, but the one thing it does for you is it allows you drain the bile externally when the stents get clogged. Once they get clogged the bilirubin can spike pretty quickly, so you need to pay attention to the symptoms. If you’re doing chemo its probably critical that you keep the bilirubin under control.

From my experience you are going to have to be the ‘traffic cop’. Everyone there kind of stays in their lane and expects you to know the questions you want answered.

Good luck.

Joe