Among several other types of cancer, September is ovarian cancer awareness month. That’s something I wasn’t aware of until four years ago, when my mom was diagnosed with primary peritoneal cancer, which is a rare form of ovarian cancer. Providers diagnose fewer than seven in one million cases each year. I could write volumes on walking that journey with her, but I’ll save that for another time. In the theme of raising awareness, I want to share some insight into this particular type of cancer, including symptoms, hoping that it might inform someone in the early stages of a diagnosis.
My mom was what I would consider healthy all her life. She didn’t have any pre-existing conditions or genetic disposition to any illnesses. She took good care of herself. However, in the spring of 2018, she began having chronic stomach pain and digestive issues. The GI doctor she was working with diagnosed her with IBS (irritable bowel syndrome) and prescribed medicine after medicine to bring her relief, yet nothing helped. In fact, some of the prescriptions seemed to make her symptoms worse. Her own mother died several months before the onset of her symptoms, and I found myself wondering if she was experiencing anxiety or depression that was manifesting itself as stomach pain. She said she didn’t think she was feeling anything other than general sadness about her mom’s death.
One of the doctors she was seeing during this time told her she might need to consider a pain management clinic; that it was possible this pain was uncurable. That was devastating to consider. As she and my dad continued to explore other opinions, a friend referred them to a doctor who asked if anyone had taken a blood sample to check her CA 125 level. This refers to cancer antigen 125, which is a type of protein in the blood. An elevated CA 125 is one indicator of cancer, although other diagnostic tests are also usually used. Within days, my mom’s blood was drawn, her CA 125 level was checked, and the elevated number suggested she had cancer.
Anyone who has experienced this personally, or through a loved one, knows the whirlwind of the next few days, weeks, and months. There are countless appointments, arrangements, questions, hopes, and fears. You learn an entirely new vocabulary related to the diagnosis, and your calendar now revolves around more doctor appointments, treatments, and surgeries.
My mom had primary peritoneal cancer, which is difficult to detect and often at advanced stages when diagnosed. It is a cancer of the cells in the lining of the abdomen, which is called the peritoneum. Instead of an individual tumor that might show up on a scan, primary peritoneal cancer is harder to recognize because it shows up as countless tiny tumors in the cells that line the abdomen. These cells are the same type that form the surface of a woman’s ovaries, so there are many similarities in the symptoms, diagnosis, and treatment for both cancers.
Women are at higher risk for primary peritoneal cancer, and most people diagnosed are 60 years and older. The risk also increases if you have endometriosis or if you have a first-degree family member (mother, sister, or daughter) with peritoneal, fallopian tube, or ovarian cancer and mutated BRCA1 and 2 genes. In most people, these genes help stave off tumors, but if those genes have mutated or are damaged, they don’t function properly, creating a higher risk for cancer. Mutations to the BRCA1 and 2 genes are inherited, and a simple test can determine whether you have the gene mutation. As with ovarian cancer, symptoms can be vague and are often similar to other non-cancer illnesses, so it frequently takes longer to diagnose, and the cancer has often advanced. Some symptoms include:
- Abdominal or pelvic pain
- Bowel changes
- Frequent urination
My mom’s treatment included months of chemotherapy and surgeries, and we cried tears of joy when she rang the bell and was considered cancer free. She had several good months, enjoying life as she had before she got sick. And experience taught us to cherish that time even more than we had before.
Her CA 125 level was checked regularly, and in the fall of 2020, a rise in the number indicated the cancer had returned. Her oncologist said that when it comes back, it often comes back with a vengeance. And he was right. She fought hard but lost her battle on June 20, 2021.
If you or a loved one are experiencing any of the above symptoms, and especially if you are a woman and are 60 years or older, I’d encourage you to keep asking questions, get second opinions, and hold your medical team accountable for helping you find the cause of the symptoms.
My mom was one of the kindest, gentlest people in the world. But she also had the strength of a lion, which is what it took to endure this disease. She left us a deep legacy of love and one of perseverance and steadfastness through whatever life brings.