The Difficult Journey of Endometrial Cancer Treatment

It was during the Thanksgiving holiday in 2018 when I answered the phone. It was my oncologist. He told me my blood tests were positive for ovarian cancer. I was relieved, and I was scared. At least, we were getting closer to finding out why I had been unwell over the past year.

He wanted me to get a peritoneal abdominal cavity biopsy. I did, and that came back positive for cancer as well. In less than a week, I would be rolling into the operating room for what would be a complicated surgery. It would be during surgery that my doctor would find the main tumor in my uterus. It had, however, spread to other parts of my body, thus the positive tests for ovarian and peritoneal cancer. I had stage IV serous endometrial cancer.

It started with a blood clot

At the end of 2017, I was diagnosed with a blood clot in my leg along with pulmonary emboli. Genetic testing didn’t turn up any viable reasons. I was active teaching yoga and fitness classes. My diet was clean. I was healthy. However, I would later learn that blood clots can indicate occult, or hidden, cancers, but the cancers are difficult to diagnose at this stage. Over the next year, I would experience many symptoms of endometrial cancer which would not be accurately diagnosed until the end of 2018.

Then I had additional symptoms

My oncologist, also my hematologist, was following up with me every six months keeping track of blood clots. I would mention overwhelming fatigue, a strange bloating in my belly, and eventually no appetite. My joints were achy and I was using the bathroom up to 8 times per night. I also had a consistent low grade fever. He tested me for all sorts of immune system disorders. Everything would come back negative until during one follow up appointment.

He noticed I looked pale and gaunt. He tested me via blood for ovarian cancer knowing I was a breast cancer survivor. The day after the blood draws, I received the call that I had ovarian cancer. Of course, later I would test positive on the abdominal cavity biopsy. My oncologist sent me to a gynecological oncologist that day who would be my surgeon in 5 days. I was also tested genetically that day. I was fortunate that I knew my oncologist/hematologist and that he was able to push things through at the end of the year.

I have been very proactive with my health. I do my research and ask questions, so I can make informed decisions. I have learned to do this over the years since breast cancer. I knew about endometrial cancer, but had no idea how this disease would come up so quickly in me.

Learning about endometrial cancer

I would learn there are at least two cell types of endometrial cancer, serous (very aggressive) and non-serous (slower growing). Unfortunately, the symptoms I had for about a year can be attributed to so many things other than cancer.

I went to a gastroenterologist who prescribed antibiotics thinking it may be diverticulitis. My symptoms did not get better. I learned later that this type of endometrial cancer is diagnosed in the later stages, and is rare and aggressive. It is important to know the symptoms and to have a medical team you trust. Even though it took awhile, I had a doctor who believed me and kept searching for the cause of my symptoms. If he had not, I would have changed doctors. I knew something was very, very wrong.

Major surgery, complications, and chemo

After radical debulking surgery to remove my uterus, fallopian tubes, ovaries, appendix, part of my colon and my omentum, I went into acute respiratory failure and almost lost my life. But, I did not. I lived, spent two weeks in the hospital and started 12 weekly chemo sessions less than two weeks after my release from the hospital.

Chemotherapy was difficult. I had neuropathy, suffered with lymphedema in both legs from surgery and was in surgical pain. I was very tempted to stop around the 9th session, but I did not. I lost my hair and much of my hearing. A connective tissue disorder I have got worse making it difficult to walk. I took it one day at a time and kept moving forward.

I have been in remission for 6 years now and have adjusted to my new way of being alive in the world. I have not had a recurrence, and I do not take maintenance drugs. I love being alive. I don’t ask "why me" or worry about what I cannot do, but I choose to focus on what I can do. One of those things is my commitment to educate and advocate for women diagnosed with endometrial cancer.

I will share my story a million times if it helps and encourages even one other woman.