Advocate Spotlight: Julie
Last updated: July 2021
AdvancedOvarianCancer.net shares the stories and experiences of people living with ovarian cancer. We are highlighting the story of our advocate Julie who was diagnosed with ovarian cancer in June 2020. Julie was completely shocked by her diagnosis and has since dedicated her time to support others living with ovarian cancer.
This is Julie's story...
The beginning of my cancer story
My ovarian cancer journey started in May 2020 when I visited a local ER due to shortness of breath and a racing heart. Tests showed that my cancer presented as pulmonary embolisms in every blood vessel in both lung cavities. I was categorized as stage 2 endometrioid ovarian cancer after the biopsy in June.
From treatment to NED
I received 3 rounds of carboplatin and paclitaxel every 3 weeks until I had a full hysterectomy. I was elated that I qualified for robotic surgery as the recovery was very easy. Post-surgery, pathology showed I also had stage 1A endometrial cancer of the uterus. After surgery, I received another 3 rounds of carboplatin and paclitaxel. Then I rang the Victory Bell in December 2020 when I was declared NED.
My encouragement for those newly diagnosed
My advice to those who are newly diagnosed is to make sure you are comfortable with the oncology team you chose for your surgery and treatment. You will be meeting with your team many times and you need to have 100% trust in their ability to take care of you. Communication is so big and if you feel as though you are not being “heard” go get another consult somewhere else.
My advocacy why
I’m an advocate because I knew something was happening to me in 2018. Something was “off”. My periods started changing big time and I felt really tired some months. Sometimes I was so tired I slept 10 hours a night. I mentioned it to my GYN practitioner and she blew me off with “do you want to go on the Pill?” I didn’t rock the boat and remind her of risk factors such as never being pregnant and never being on The Pill (I’ve been gay my whole life). Most health care practitioners blow through my medical history because I’ve never been on any medications nor have a family history of cancer, diabetes, heart disease, and high blood pressure. I’ve also never had an abnormal PAP smear and I’ve always followed all the screening protocols and got an annual pelvic exam and mammogram since I was 39 years old.
We need to talk more about ovarian cancer risk factors
When I educate women about my risk factors (never being pregnant and never being on The Pill) that put me at a higher risk of ovarian cancer, women are astonished. My belief is that women who never attempt pregnancy AND never have any GYN problems such as endometriosis, uterine fibroids, and ovarian cysts fall through the cracks with GYN care. Until tests were done to investigate why I had so many blood clots in my lungs, I never had a pelvic ultrasound nor transvaginal ultrasound in my life.
Now that I am on the other side and am a vocal survivor of ovarian cancer, I support women by listening to their stories of how hard it is to get a GYN practitioner to listen to them. More than anything, being an advocate is teaching women how to talk to their GYN practitioner. It’s not easy being open about GYN symptoms. Most of us had to learn about periods from our friends and sisters. My mother certainly didn’t teach me anything. We never talked about it.
Something most people don't know...
A fun fact about me is that I never said a word in school. I was the shy kid who never spoke up!
Do you have things that helped you cope through your ovarian cancer journey?