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DiscussionAnyone have cancer with unknown primary?
Cancer | Last Active: 6 days ago | Replies (155)Comment receiving replies
Replies to "Cancer of unknown origin Good morning! Didn't know that this was a thing--has anyone else received..."
@sheridonaldson, this is sometimes also called carcinoma of unknown primary (CUP) . It's an unsettling diagnosis. I moved your question to this existing discussion:
- Anyone have cancer with unknown primary? https://connect.mayoclinic.org/discussion/rennie/
I did this so you can read some of the previous posts and learn more and connect with members like @cindylb @rita8898 @sylvia67, who are familiar with the uncertainties of this diagnosis as family members were also diagnosed with CUP.
I have shared on this thread before about my husband's diagnosis of CUP (Cancer of Unknown Primary). My husband is thankfully on year number 7 of his cancer and just recently we've had two PET cancer scans showing no active cancer, no recurance for 7 months. It's all good news but because they were never able to identify the source or type of cancer we also don't know what to expect. It's not that common but they think what might happen is that someone has cancer that starts somewhere as a certain type and then dies but has already traveled throughout the body. That is my husband's situation. His cancer biopsies (three of them) were never conclusive to one type of cancer. They matched lung cancer and possibly upper GI cancer. But he never really had the symptoms clearly of either type. The cancer was in his lung and lymph nodes near his lungs, which later spread to his hips, spine and adrenal glands. With repeated radiation treatments of different types and a round of chemo we are here today with no obvious cancer and improved blood work but my husband is still quite tired with symptoms we can't actually pinpoint treatment for either. If you'd like to discuss anymore on CUP I'm happy to help.
Yes, I was diagnosed in July of 2017 with CUP.
Hi @sheridonaldson, A cancer of unknown origin feels like a pretty nebulous diagnosis and doesn’t give you much of an answer. It’s the medical phrasing used when there is a tumor in the body that shows cancerous cells but it’s not the origin of the cancer. This can happen when there is a lymph node in the body involved. It seldom starts there but travels from another source.
Doctors need to know the source of the cancerous cells so that the appropriate treatment can started. To do that, the oncologist will need a few more tests such as a biopsy of the area in question, possibly imaging and blood tests.
This is our Mayo Clinic’s page on Cancer of unknown origin which may help you understand a little more about what’s possibly going on.
https://www.mayoclinic.org/diseases-conditions/carcinoma-unknown-primary/diagnosis-treatment/drc-20433758
Sheri, is this news you received or someone in your family? I know it’s frightening to hear those words but getting an early diagnosis is key to recovery. Were there symptoms leading to the discovery or a tumor found?