Connie Zickler felt a sharp pain under her sternum in 2016. She thought her bra was the wrong size. It took five years and two wrong diagnoses before anyone said the words appendix cancer. Twice she was told she had ovarian cancer, and she had surgery to remove her ovaries before anyone found the real source. An appendix cancer misdiagnosed as ovarian cancer is more common than people think, and it happens to women a lot.

Appendix cancer misdiagnosed as ovarian cancer: a common story for women

Appendix cancer often shows up low in the belly and near the ovaries. On a scan it can look like ovarian cancer, so that is the call doctors make. Connie had her ovaries removed and was told she did not have cancer, just some strange fatty deposits. When her disease came back, a scan showed lesions and she was told her ovarian cancer had returned. None of it was ovarian cancer.

A specialist at Fred Hutch heard her story and knew what it was over the phone. Her diagnosis was a low grade appendiceal mucinous neoplasm, or LAMN, that had spread in her abdomen. The appendix was the only place they found actual cancer cells. An appendix cancer misdiagnosed as ovarian cancer can cost a patient years, and it cost Connie five.

Connie had cytoreductive surgery with heated chemotherapy, known as CRS and HIPEC. In 2024 her tumor markers started to climb, which told her team the cancer was back.

The drug she had to ask for by name

Connie reads about her own cancer. She learned she carries two mutations that matter, called KRAS and GNAS, along with a third rare one her team is still trying to understand. She asked her oncologist for palbociclib, also sold as Ibrance. It is a CDK4/6 inhibitor, a drug better known in breast cancer. Researchers at UC San Diego, including Dr. Andrew Lowy, have studied this kind of drug in patients with GNAS mutated mucinous appendiceal disease. The work is early and the studies are small, and her oncologist was cautious for exactly that reason.

Connie got the drug. Many patients with the same mutations get denied. Her oncologist is known for getting these approvals, and her insurance said yes. That is rare, and it should not be.

Connie has been on palbociclib for close to a year now, and her tumor markers, including her CEA and CA 19-9, have come down a lot. That is real, and it matters. It does not mean the drug is a cure, or that it will work the same way for anyone else. I am sharing what one patient chose, why she fought for it, and what has happened for her so far.

Watch for the full interview

There is much more to Connie’s story. I recorded a full conversation with her, and it goes up on appendicure.com tomorrow. Check back here to watch it. She talks about the years of being dismissed, the specialist who finally listened, and what she would tell anyone still searching for answers.

If your appendix cancer was first called something else, you are not alone. An appendix cancer misdiagnosed as ovarian cancer happens more than the numbers show, and your experience matters. You can add it to the patient led registry so researchers can see how often this happens. Share your story in the registry.

If you would like to share your own story, on a Zoom call or a blog post, email me at info@appendicure.com.

Appendicure is a nonprofit. Every dollar goes directly toward research, patient education, and the registry. If this work matters to you, you can donate here.