DISCLAIMER: The following post outlines the writer’s personal journey with ovarian cancer. It is not intended to act as medical advice. As always, please consult your doctor with any questions about your health.
Ovarian cancer at 28 has been a wild ride to say the least. My life was so very different five years ago. I was married and trying to start a family with my husband while in my fifth year of teaching in Detroit. We lived in the city and had so much in our life to be thankful for. It all felt so easy.
Around Christmas of 2018, I stopped birth control in hopes of getting pregnant. Within a couple months I started experiencing odd symptoms that I hoped I could blame on a tiny baby starting to grow inside me. Something was growing–but there were no positive pregnancy tests.
In the first months of 2019 I felt bloated, experienced irregularly long periods, couldn’t eat as much as usual because I felt too full, had pain with sex, and was experiencing urgency and frequency with urination. The desire to be a mom led me to my OB’s office that spring to make sure all was well and that I was healthy for pregnancy.
The abnormal periods and pain with sex were attributed to the hormonal changes of ending birth control.
But, I was given a transvaginal ultrasound just to check things out, and a cyst was found on my right ovary. A month or so passed and these weird symptoms persisted without any signs of pregnancy. So, a follow-up ultrasound was scheduled–and my cyst had grown.
A CA125 blood draw was done to give an idea of if we were looking at ovarian cancer. However, mine was within the normal range, and my doctors were 95% sure I didn’t have cancer. Fast forward to two days later and I woke up in the middle of the night with excruciating pelvic pain. I woke up my husband and went to the ER because we were concerned about ovarian torsion (where the ovary spins on the Fallopian tube due to the weight of something on it).
By May of 2019, I was referred to a gynecological oncologist just in case removal of the cyst was anything more concerning.
I woke up in recovery alone, in extreme pain, and wondering how long I had been under. My surgery should have been an hour or two. But when the nurse told me it was 1:00 in the afternoon I realized I had been under for more than four hours. “I have cancer, don’t I?” I asked the nurse.
Of course she couldn’t confirm anything, but I knew. My oncologist confirmed that afternoon on May 31, 2019 that I had stage 2B granulosa cell carcinoma. It is a very rare form of ovarian cancer. I was 28 years old. The average age of a diagnosis for ovarian cancer is in your mid 60s.
The realization that I did not yet have children and had already lost half of my reproductive organs to cancer was heartbreaking.
I worried that I would never be able to have children and that cancer would dictate my future. I’m sure you’re wondering how it could have taken so many months to diagnose me with cancer after all of these symptoms. It’s an important question that I now work really hard to answer for many people.
Prior to reading this post, were you aware of the signs and symptoms of ovarian cancer? It’s not very common knowledge and gets a lot less media attention than, say, breast cancer. I’ve known how to do a breast self-exam for decades. However, I didn’t know the signs of ovarian cancer until 2019. The other troubling fact is that there is no definitive test for ovarian cancer. The only way to know is a biopsy requiring surgery.
So what can you do if you have concerns?
If you are experiencing signs of ovarian cancer for two weeks or more you can advocate for a CA125 blood test, a transvaginal ultrasound, and a pelvic exam from your OB. You might be thinking that you are covered because you get your pap smear. But, that only tests for cervical cancer and gives no indication for ovarian cancer. According to the CDC, symptoms you can look for are pelvic or abdominal pain, feeling full quickly, changes in bowels, frequency or urgency of urination, or bloating. While these might not seem obvious, it’s important to listen to your body because you know it best.
Today is World Ovarian Cancer Day and throughout my journey I have found that spreading awareness and empowering women to advocate for their bodies is one of the best steps forward that I can do right now. You know your body better than anyone. If you have a concern, there is no shame in reaching out to your doctor even though reproductive organs and intimacy can feel taboo to discuss.
According to the World Ovarian Cancer Coalition, if nothing changes there will be 8 million women who die from ovarian cancer by 2050.
The lack of knowledge and absence of a definitive test mean that ovarian cancer is diagnosed in the late stages. These are more difficult to treat and usually result in infertility for those of childbearing age. Ovarian Cancer Research Alliance stated that not only is ovarian cancer the most deadly gynecological cancer, but the five-year survival rate is only about 50%. I cannot wrap my mind around that last statistic. So much more needs to be done in the research world in order to save lives.
In just 23 days, I will hit my five year cancerversary and beat that statistic. My life expectancy will see a sharp increase and I will have a lower risk of recurrence. Not only am I so very thankful to be alive and healthy, but I have three incredible babies. My twin boys are the first and second babies born via in vitro fertilization to anyone with my subset of cancer, according to medical journals my reproductive endocrinologist found. My daughter is the third.
I don’t want to think this was all just luck on my part.
I was empowered to advocate for my concerns. And, I was privileged to have doctors who took my concerns and pain seriously. This is not the case for all people. Access to high quality medical care is a concern that I hold as a budding social worker currently in grad school. I left my career in teaching to become a social worker and provide therapy for others who are experiencing infertility. Another part of the wild ride since my diagnosis.
My future is never going to be certain. My risk of recurrence will always be in the back of my mind. In the meantime, I will continue advocating for more research surrounding ovarian cancer. I will continue spreading awareness so others know what to look out for.
And, I’ll continue wearing a lot of teal. My kids walk every Mother’s Day morning with my husband and I in Ann Arbor with Michigan Ovarian Cancer Alliance (MIOCA) to spread awareness. It’s one of the traditions that I’m sure we will do for all the years to come.
Resources for Support
As a former teacher and future social worker, I would not be comfortable ending this post without providing resources for those who are previvors, survivors, loved ones of those with ovarian cancer, or people who want to get involved. Below are several resources–both locally and nationally–that can support you or your loved ones.
- Gilda’s Club: Provides free support groups, bereavement supports, and social activities for those experiencing a cancer diagnosis.
- Imerman Angels: Provides a free mentor angel that you are paired up with as a peer support. They can be requested to have the same diagnosis, age, etc.
- Michigan Ovarian Cancer Alliance: Provides free support groups for survivors and caregivers. They also host awareness events and raise funds for research and survivor support.
- Ovarian Cancer Research Alliance: Provides resources for cancer patients including insurance, work, LGBTQIA+, young adults, work-related, and emotional support. They also do a lot of fundraising for research.
- Stupid Cancer: Provides resources for adolescent young adult (AYA) survivors to help with the unique experience of having cancer between the ages of 15-39.
–Guest post submitted by Melissa Bradley
