I’m not ovary-acting!
As we head into the season of Fall, we know the sea of pink is getting ready to crash in on us. Before these waves are upon us, I want to talk a little bit about Gynecologic Cancer Awareness Month this month. September is a month often overlooked by the broader cancer community, but I’m going to change this!
After being diagnosed with the BRCA gene suddenly the month of September was not just my dad and grandma’s birthday (grandma passed from metastatic cancer) or my wedding anniversary (this year is number 10) and the day my daughter was transferred as an embryo. It also became a month of bringing attention to another cancer that would impact my life. Each year in September is a perfect time to encourage women to learn more about cancers of the cervix, vagina, vulva, ovaries, and uterus including early detection and prevention. Every 5 minutes a person is diagnosed with a type of gynecologic cancer. The American Cancer Society estimates about 109,000 new cases and 33,000 deaths from gynecologic cancers in the US each year.
Research has shown BRCA1 and BRCA2 put carriers at a higher risk of breast cancer. Women who inherit the BRCA1 or BRCA2 gene have a 56 to 87 percent risk of developing breast cancer by the age of 70. BRCA1 and BRCA2 gene mutations increase the risk of not just breast cancer, but ovarian cancer, and pancreatic cancer. Thanks genes for putting me at risk for all three!
Starting in 2016, I began an ovarian prevention study at Northwestern Medical. Northwestern is one of only a few clinics to have this study. Every three months I head to the gynecology floor in the Galter building of Northwestern. The moment I walk into the waiting room I’m immediately filled with sadness, fear and loss. I take a seat surrounded by pregnant women anticipating the ultrasound, the questions I’ll be asked and what the tests will show. Each time it’s a constant reminder of what breast cancer did to my body and how being positive for the BRCA gene will impact each day going forward. I can’t have children naturally, I will eventually not only have my fillopian tubes removed, but my ovaries. I have to always be aware of my estrogen levels and loss is something I’ll continue to deal with. I’m grateful for the program and realize how important it is to know my body and continue monitoring my uterus and ovaries.
Each time I head back for my ultrasound I think about what it would be like to sit on the bed with my feet in the stirrups for a reason other than what I’m there for. What’s it like to be a pregnant woman carrying their son or daughter. Instead I get to lay on the bed while the technicians search for my missing ovary. They are getting better after 5 years with knowing that I had my ovary removed with my fillopian tubes, but it still brings a tear when I do have to share it with them if they haven’t realized it already. Also, I know they are doing their job, but the moment they ask me about my period which hasn’t been present since March 2015 the emotions continue to fill my heart. After they have completed the ultrasound, I head into another room for a chat with the nurse and then one of the three doctor’s that lead the study. We discuss the results of the ultrasound. Most of the time I’m told I’m boring, however a few times there have been cysts or blood in my uterus. After this conversation and the continued chat about the remaining ovary removal, I am sent to the lab to have blood drawn to test for CA125.
“A CA 125 test measures the amount of the protein CA 125 (cancer antigen 125) in your blood. A CA 125 test may be used to monitor certain cancers during and after treatment. In some cases, a CA 125 test may be used to look for early signs of ovarian cancer in people with a very high risk of the disease”
There is no adequate screening test of ovarian cancer at this time which is one of the reasons that this cancer is often discovered in later stages. Symptoms may include:
• Bloating
• Pelvic or Abdominal pain
• Difficulty eating or feeling full quickly
• Urinary urgency or frequency
• Nausea, indigestion, gas, constipation or diarrhea
• Extreme fatigue
• Shortness of breath
• Backaches
• Weight Gain
The symptoms of ovarian cancer are often subtle and easily confused with other ailments but if detected at its earliest stage, the five-year survival rate is more than 93%.
In May 2018, a month before my daughter was born, I made the tough decision to have my fillopian tubes removed. I was told if ovarian cancer was going to show up, it would do so first in the tubes. After many long conversations with my oncologist, husband but mostly the Northwestern ovarian prevention study team, I understood what my BRCA1/BRCA2 risk was if I didn’t start thinking about removing tubes, ovaries or the entire system and the likelihood of pregnancy with the hormone levels I was showing and it didn’t look so good.
In the past year and a half not only did my husband and I have three major losses of growing our family because natural conception isn’t a possibility, I am also being put into a place where I am expected to choose between protecting my body from breast cancer reoccurrence and the risk of ovarian cancer or keeping the one ovary I have even though the estrogen levels fluctuate each month (per blood tests) to help keep my bones strong and heart disease free.
It’s important to know and listen to your body. No pain or no change is too small. Talk to your doctor if you have any of the symptoms listed above and they last more than 2-3 weeks. You are your best advocate! Let’s GO TEAL this month! Thanks for bringing awareness to this horrible cancer.