My Ovarian Cancer Story: From a Misdiagnosed Hernia to Treatment

In September 2018, I received a diagnosis of high-grade serous ovarian carcinoma. Suddenly, ovarian cancer indeed took on a primary focus. I stopped working full-time, began researching, and came to terms with this news.

Two years earlier, physicians had assured me the lump in my abdomen was an innocuous hernia. I was only too happy to go on with my life, convinced I could brush away my concerns. But then, I learned that even trusted physicians might miss important diagnostic factors related to ovarian cancer.

It was worse than I could have imagined. Doctors found the evidence of the disease in both ovaries and fallopian tubes, a perirectal nodule, an umbilical hernia sac, and cells within the omentum (the membrane lining the abdominal organs). So, the cancer had already made its way through my abdominal cavity.

Meanwhile, I had decisions to make. At one point, I traveled to a major cancer center four hours from home to confirm the plan. When I asked, my oncologist told me I could only expect to live about four years. I immediately responded, "That's not long enough."

Receiving my initial diagnosis

Before you all panic, let me be clear. Everyone has a different experience with ovarian cancer. Notably, people with cancer in an early stage have a different story. Ultimately, treatment was necessary for me but could only delay the advance of this disease.

Choosing to Engage Fully in Treatment

I chose to treat my ovarian cancer with chemotherapy along with complex and sometimes devastating surgeries because I felt it was necessary for me, specifically.

Having a choice is an integral part of this scenario and somethings my readers should always remember. We have many options along the way regarding our ovarian cancer treatment and need only to ask.

What happened next

Based on the conclusions of my medical team, I succumbed to infusions of Taxol, Cisplatin, and Avastin every few weeks. The same drugs I needed to save me almost did me in. It is hard to explain unless you have lived it, but I had no interest in food or hydration. Finding the energy to rise from the couch took a concentrated effort.

With this first round of chemotherapy, I ended up in the emergency room, barely able to walk and needing immediate medical attention. Chemo placed me in renal failure.

Three years into treatment, I started a new series of chemotherapy with different combinations of agents, including Gemzar, Carboplatin, and Avastin, followed by Avastin maintenance.

Unfortunately, the PET Scans continued to show evidence of peritoneal disease. Activity in the iliac and para-aortic nodes and the sigmoid colon indicated metastases of the disease. Moreover, it seems cancer was traveling into my lymphatic system, which might also explain changes showing a pleural effusion.

A recent thoracentesis, during which 800 ml of yellowish-green fluid was removed from the pleural sac outside my right lung, revealed more complications. The lab evaluation showed methicillin-resistant Staph aureus (MRSA), a bacteria. My doctor ordered new antibiotics and additional cytology evaluation. The answers are not all in yet, but the possibility of evidence of another type of cancer is most pressing.

"Just when you thought it was safe to go back in the water..."[Jaws 2]

In my case, I realize that the classification of Ovarian Cancer Stage III C defines the likelihood that this disease has already metastasized and could continue to do so. So I got that early on. Yet, the sequence and type of additional disease possibilities are suddenly becoming clearer.

Finding the positive

Trying to be as positive as possible, I never asked what I could expect. Cancer can be so all-encompassing daily that most of my attention is directed toward coping the disease in the here and now. This measure is still the best thing we can do for ourselves. However, I encourage you to remain vigilant about any signs and symptoms requiring attention. For example:

• What does it mean to have a cough that lingers beyond what is common for you?
• Do you experience any abdominal or lower back pain?
• Are there changes in elimination? If constipated, are you addressing the potential of any obstruction?
• Are you hydrating, and is urine adequate?
• Are you showing signs of increased protein in your urine?
• What safety measures are in place if neuropathy is present in your hands or feet?

Most of all, remember to love yourself and honor who you are and have been. Find ways to keep joy in your life. Keep your mind and body moving and involved throughout your ovarian cancer journey. I know we are not done yet.

Editor’s Note: We are extremely saddened to say that on August 9, 2024, Ellen Reed passed away. Ellen’s advocacy efforts and writing continue to reach many. She will be deeply missed.