Hi everyone,
I’m hoping to get some insights or hear from anyone who’s experienced a similar situation.
My mother, aged 67, has no noticeable physical symptoms except for feeling a hard area near her stomach. An ultrasound revealed a 7 cm liver mass, which led to further tests — blood work, PET scan, MRI/CT, and biopsy. However, the results have been quite mixed and confusing.
Here’s a summary of the findings:
Blood markers: AFP is 1700, while CEA and CA 19.9 are normal — suggesting Hepatocellular Carcinoma (HCC).
Imaging: PET scan shows three tumors in the liver — one measuring 7 cm and two smaller (sub-centimeter). MRI and CT confirm the same.
Biopsy (Immunohistochemistry): Indicates adenocarcinoma, possibly originating from the GI tract or bile duct. this is because, CK-7 and CK-19 are positive whereas HepPar-1 and Arginase-1 are negative
Endoscopy and colonoscopy: Both came back normal, showing no obvious primary source.
So, while the blood markers and imaging suggest HCC, the biopsy points toward adenocarcinoma. Because of these conflicting findings, the doctors are currently labeling it as a Cancer of Unknown Primary (CUP) and have proposed starting CapeOx chemotherapy while waiting for NGS (genomic testing) results, which could take a while. They prefer not to delay treatment.
I wanted to ask:
Has anyone faced a similar diagnostic dilemma?
Are there any recommendations for specialized cancer centers, experienced oncologists, or resources for a second opinion, especially for cases like this?
Any insights or guidance would be greatly appreciated.
Thank you all so much
Hi gsp_mcc8835 and a very warm welcome to the online community which I hope you'll find is both an informative and supportive place to be.
I’m Anne, one of the Community Champions here on the Online Community and, although I'm not a member of this group, I noticed that your post hadn't had any replies yet. Responding to you will 'bump' it back to the top of the discussion list again.
If you don't get any replies here, it might be an idea to also join and post in the main cancer of unknown primary cancer group as well.
If this is something that you'd like to do, just click on the link I've created and, once you've joined, you can start a new post in the same way as you did here and join in with existing conversations by clicking on 'reply'.
While you're waiting for replies, it would be great if you could put something about your mother's diagnosis and proposed treatment into your profile as it really helps others when replying to you and also when looking for someone on a similar pathway. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.
"Never regret a day in your life, good days give you happiness, bad days give you experience"
