Connie’s Story: Misdiagnosed 2 Times Before Appendix Cancer Was Found

Connie Zickler’s appendix cancer misdiagnosis went on for years. First it was ovarian cancer. Then it was no cancer at all. Then it was ovarian cancer again. The truth, when a specialist finally recognized it, was low-grade appendix cancer that had been spreading the whole time. This is Connie’s story, in her own words.

How Connie’s appendix cancer misdiagnosis began

Connie’s pain started in 2016. Ultrasounds and blood work found nothing. She noticed that cutting out gluten quieted it for a while, so she managed it that way. In 2018 her stomach started to swell. Her gynecologist ordered an ultrasound and told her she had ovarian cancer. There was no biopsy, but everyone seemed sure. She was sent to a surgical oncologist and had major surgery that summer.

When she woke up, the surgeon told her she did not have cancer after all. He described what he found as fatty deposits, said the tissue tested clear, and sent her home. Three years later, in 2021, the pain came back hard. A CT scan at urgent care again read as ovarian cancer. She was sent back to her oncologist, who ran several needle biopsies through her abdominal wall. Every one came back negative. The whole process took about three months. The cancer was scalloping the edge of her liver by then.

The phone call that finally named it

A tumor board at a major university could not explain her scans. So her oncologist called a specialist at Fred Hutch. That specialist recognized it almost immediately. He told them it was classic appendiceal cancer. A laparoscopy confirmed it. The surgeon found her appendix badly damaged and pulled enough tissue to make the diagnosis. It was low grade. Five years after her pain began, it finally had a name.

That gap is the part Connie keeps coming back to. Her appendix cancer misdiagnosis cost years that earlier recognition might have saved. Appendix cancer is rare, and many clinicians have never seen it. She now tells her story to nurses and anyone who will listen, because the next person who walks in with vague abdominal symptoms deserves to be caught sooner.

Two HIPEC surgeries

Connie had her first cytoreductive surgery with HIPEC in December 2021. It ran about sixteen hours. Her surgeon removed nearly all of the disease and chose to leave a small amount near her stomach to protect her quality of life. She was stable for about two and a half years. In 2024 a scan showed it spreading again. Her surgeon gave her three honest options: watch and wait, operate again, or start chemotherapy. She took two weeks to decide and chose a second HIPEC. That surgery cleared most of what was left.

Staying in control through research

Connie reads, asks, and signs up. Looking into studies is how she manages the fear. During her second surgery, her live tumor tissue was collected and shipped to a lab through the Travera study, which tests how a patient’s own tumor responds to different drugs. That work flagged a chemotherapy that was active against her cancer. She later joined the TRAC study, which identified mutations in her tumor and sent the results to a rare cancer board for treatment ideas.

Tumor tissue is valuable, and testing keeps getting smarter every year. Ask your care team about banking your tissue before it is discarded, so future tests stay possible.

The palbociclib turn

When the disease started moving again, Connie asked to try palbociclib, sold as Ibrance. It is a CDK4/6 inhibitor, a pill used for years in breast cancer that researchers at UC San Diego have been studying in appendiceal cancer. Connie brought the UCSD work to her oncologist and asked for it by name. Her oncologist was cautious, but agreed to keep it as the next step. They tried chemotherapy first. It held the cancer for a few months and then stopped working.

Then came a surprise. Her oncologist called to say the cancer was spreading, but that a prescription for palbociclib had gone through and her insurance had covered it. Coverage for CDK4/6 inhibitors is often denied in this setting, so the approval was its own small piece of luck. Connie started the drug in the summer of 2025.

Her response was strong. Her CA 19-9 tumor marker had climbed to about 1,700, a startling number for low-grade disease. Once she started palbociclib, it fell fast, dropping hundreds of points at a time. By the following spring it was down to the 80s, close to normal, and her other markers were in range. A scan read as stable, but the actual measurements were smaller. Her oncologist told her she did not think Connie realized how unusual the size of that response was. Connie’s tracking matters here too. Her care team weighs three things in roughly equal parts: the CT scan, the tumor markers, and how she actually feels.

This is one patient’s experience, not a prediction of how any drug will work for someone else. CDK4/6 inhibitors are an active area of research in appendix cancer, not a settled standard of care. If this sounds relevant to your situation, the next step is a conversation with an appendix cancer specialist about your own tumor’s mutations.

Connie takes the drug in cycles of 21 days on and 7 days off. Her main side effect is fatigue toward the end of each cycle. She is also on the waiting list for a clinical trial of an emerging KRAS inhibitor, one of the treatments the appendix cancer research community is watching closely.

What Connie wants other patients to know

After everything her appendix cancer misdiagnosis put her through, Connie’s advice is plain. Track your symptoms, even if it is just measuring your waist and noting how you feel week to week. Push for answers, and do not take no for an answer when something is clearly wrong. If a provider will not listen, find one who will. When you can, see an appendix cancer specialist rather than a general oncologist, because this disease behaves differently from common cancers. And ask your team about your tumor’s mutations, because a single test can open a door to a treatment you would never have known to ask for.

She does not see herself as exceptional. She sees herself as someone who kept asking questions until the answers got better.

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