Read Time: 5 minutes
Author: Sara Orgill, BGCRA Advocate
From time to time, Huntsman Cancer Institute invites guest commentary from our community. The views reflected in these commentaries are those of the author and do not necessarily represent the official views of Huntsman Cancer Institute.
In the spring of 2021, I noticed a few subtle changes in my body that didn’t feel quite right. None of them were major—a little bit of increased bloating, my periods were a little more frequent, and I was finding myself using the restroom more often. I wrote them off as part of getting older, and I thought I was potentially heading into my perimenopause era. It wasn’t holding me back. I still lived an active life, and I even hiked Arches for the first time in April.
I noticed a few subtle changes in my body that didn’t feel quite right…I wrote them off as part of getting older.
In June, I had a trip planned to Yellowstone with my sister and best friend. On that trip, everything changed. Suddenly, I could only eat a few bites before I was full. Walking even on flat surfaces left me out of breath and feeling like my stomach was going to explode. We headed to the emergency room, where we found out I had a 27-centimeter cyst growing from my right ovary and another seven-centimeter cyst from my left ovary. The doctor felt certain I had cancer.
Back in Utah, my mom made calls and quickly contacted a gynecologic oncologist who was able to see me the following week. Surgery followed quickly, and I woke up from that surgery with my life irrevocably altered. I was diagnosed with stage 2B high-grade serous ovarian cancer, and I was in early surgical menopause, all at the age of 40.
Ovarian cancer wasn’t on my radar. I was aware of ovarian cancer, as my paternal grandmother had passed away from it when I was very young, but I saw ovarian cancer as something that affected people much older than I was.
Ovarian cancer wasn’t on my radar...I saw ovarian cancer as something that affected people much older than I was.
Ovarian cancer is known as the “silent killer,” as the signs and symptoms are vague and often undetectable until late stage, when the cancer is very difficult to treat. There is currently no clinical test to confirm ovarian cancer.
Four weeks after my hysterectomy and debulking surgery, I started chemotherapy, which is devastatingly brutal on your body. On top of the normal side effects—losing your hair, weakness, loss of strength, extreme fatigue, bone pain—I also had an extreme allergic reaction to the chemo my first and second rounds, which led to changing the type of chemo I received.
Despite all the setbacks, and the toll on my body, I recognize that I am very lucky. Because the tumor grew so large so quickly, I caught the cancer sooner than many people do. I am now almost three years post-treatment, and I remain with no evidence of disease.
I was a little naïve when I was first diagnosed. I truly thought cancer was a one-and-done deal; I just needed to fight with everything I had, and I could beat it, and it would be over. I’ve realized that just because you are cancer-free doesn’t mean you’re free from cancer. Fear of cancer returning controlled me for a while. I hesitated to make plans because, what if the cancer came back? Looking towards the future felt daunting and filled with uncertainty.
Fear of cancer returning controlled me for a while. I hesitated to make plans because, what if the cancer came back?
The best thing that could have happened to me is when a friend reached out to tell me about a group she was involved with, the Breast and Gynecologic Cancers Research Advocate Committee (BGCRA). I felt a little intimidated to join, as I didn’t have a lot of background education in science, but I felt a draw to try and be a voice for ovarian cancer, so I applied.
Being a part of the committee has been life-changing for me. Googling ovarian cancer statistics after diagnosis left me hopeless, wondering what kind of a future I would have. Seeing the current research in breast and gynecological cancers has given me hope. Hope not only for my own future but for the future of everyone I care about and anyone else who may face this devastating disease. There are so many passionate, dedicated individuals who are devoting their lives to finding better treatment for cancer and, ultimately, finding cures.
I am grateful to now be able to be a voice, to share hope with my community, and to encourage women to pay attention to their bodies, and to be their own advocate.
While cancer has changed me forever, and I certainly wish it had never been part of my life, I am grateful to now be able to be a voice, to share hope with my community, and to encourage women to pay attention to their bodies, and to be their own advocate.
September is Ovarian Cancer Awareness Month, but truly it is something we need to be aware of all year long. Here are a few things I wish I had known prior to my own diagnosis.
- Bloating is one of the most common signs of ovarian cancer, and that is certainly true in my own case.
- Urinating more often or more urgently is also another sign of cancer.
- Abdominal or pelvic pain can be a sign of ovarian cancer, and so can changes in your periods or any vaginal bleeding if you are post-menopause.
Learn more about the silent signs of ovarian cancer.
I know, most of those are things women deal with at some point in their lives. But if the symptoms persist for more than a few weeks, please talk to your doctor. Early detection is key to having the best outcome.
I’ve been changed forever by my cancer diagnosis, but I’ve also learned that I’m stronger than I thought I was. And there is an entire community of support—from other survivors, from friends and family, and from the cancer community, the doctors, the researchers, the scientists, and the advocates.
While we may not have beaten cancer yet, together, we are heading towards a future of better treatments, and the goal of no cancer.
Together, we truly are more than if we try to go through it alone.