← Return to Anyone have cancer with unknown primary?

Discussion

Anyone have cancer with unknown primary?

Cancer | Last Active: Nov 9 1:19pm | Replies (163)

Comment receiving replies
@lizfuller

my cancer was unknown primary for quite sometime. my doctor at Stanford had extensive testing done and eventually sent my samples to an external lab that does advance "point of origin" testing. Early indications from mutations and variants found in the testing led us to believe it could have originated in the GI tract or the lungs. PET and CT scans at first showed no cancer anywhere but my neck. So I went through colonoscopy, several endoscopies, traditional as well as a video capsule to make sure we checked the small intestine. I think I was getting CTs and PETs every 2-4 months with 6 weeks being the shortest. eventually a few nodes surfaced in my lungs, and the point of origin testing came back with 97% certainty that this was the primary. it has recurred in my neck after having surgery and radiation last year. I start systemic treatment in July.

Jump to this post


Replies to "my cancer was unknown primary for quite sometime. my doctor at Stanford had extensive testing done..."

Hello @lizfuller and welcome to Mayo Connect.

I appreciate you sharing your story of finding the point of origin of your cancer. It sounds like your doctor was very dedicated to the task of finding this unknown primary.

What type of symptoms led to this search? How long was it before the testing found the lung cancer?

Thank you @lizfuller for sharing this. It is very helpful.

Aside from my chemo and radiation plan , I've been told 'time will tell' approach which I cannot accept. And plan to travel to US for more frequent tests such as you did. Pathologists are indicating possible gi etc.
The lab is Tempus, correct?
Your earlier pathology wasn't sent to Tempus. It was after it appeared in lungs and this confirmed 'primary site' ?

Best of luck with your upcoming systemic treatment.