Topic: Cancer of Unknown Primary

Hi Everyone,

My husband (age 57) was diagnosed with cancer of unknown primary in Jan. 2014. After several tests, it was determined that he had bile duct cancer. They are 86% sure that it is cholangiocarcinoma. He has been receiving folfox and oxiplatin since then. It has helped reduce the tumors in his liver (there are two tumors, one is very large, now 11 cm around reduced from 13cm). There are tumors on both sides of the liver and I think a lymph node.  We have gotten a second opinion from NIH (we live in MD) and no one wants to do surgery. Has anyone else started their journey with a diagnosis of CUP? Glad to have found you guys!

Re: Cancer of Unknown Primary

Sorry guys! I kept on getting a message that there was something wrong with my topic, so I thought it wasn't posting...I am not a wiz at this stuff.

3 (edited by JScott Thu, 08 May 2014 17:20:14)

Re: Cancer of Unknown Primary

Diana,

My wife was initially diagnosed as unknown primary.  She also had a large (9cm) tumor and medium/small tumors as well.  At the time, the oncologist said he was sure that this was the primary cancer site.  His reasoning was that since the liver tumor sites were so advanced (large tumor that had spawned medium and smalls), another tumor out there that predated and spawned these, it would likely be enormous and very obvious as to where it was.

I can't know in your husband's case, but in my wife's case, his logic turned out to be correct.

Best,

Jason

Re: Cancer of Unknown Primary

Well, it worked, Diana,  and welcome to our site.  Sorry for asking: what is CUP?
Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Cancer of Unknown Primary

Hi Marion,

A person is diagnosed with CUP ( cancer of unknown primary) if the physician is unsure where the cancer originated. Sometimes additional tests (like ones performed by BioTheranotics) will try to determine if the cancer either started or metasticized to the liver. Anyway, it is good to know the origination of the cancer because that determines the best treatment. So, based on testing, an educated guess is made. That is why we started with folfox instead of gemzar (gemzar and cisplatin being the preferred choice of chemo for bile duct cancers from what I read). But I believe gemzar in in my husband's future. I'm not sure liver surgery is. We're actually a little afraid of surgery anyway and just starting treatment.  Thanks for asking...

Re: Cancer of Unknown Primary

I was diagnosed with CUP....tumor in my liver...but all tests came back negative for anything else and only the liver tumor showed up on the PET scan.  Still, I was diagnosed with CUP even going into surgery at Mayo when the surgeon stated that she knew what this was....she'd seen it before...bile duct cancer.  The pathology of the tumor from surgery yielded the final diagnosis.  I was officially bile duct cancer...not CUP.

"Just for today, I can get through anything."  Hey....I'm a cancer survivor, not a doctor.  The opinions I state are my own, based on my personal experiences or knowledge.  As always, talk to your doctor about your concerns and treatment.

Re: Cancer of Unknown Primary

Diana Welcome and sorry you had to find us. I am excited to say I am 16 days away from 5 years cancer free!! I was inoperable and had 6-8 months to live. I believe my story is in the loose note leaf section of this site under the foundation site. I did a video for Barnes Hospital with my hero Dr. William Chapman.
I can not tell you how important second and third opions are, I am excited to say my story has led 4 CC patients to my doctor who was able to change there diagnose for the better. Dr. Chapman is the most kind and amazing doctor, with so much heart and soul, and internationally recognized doctor. Dr. Chapman is ALSO phone friendly!!! Please contact me if I can help or you would like to talk. (618-567-3247)
Lots of prayers for HOPE-Cathy