You’re Telling Me I Have Cancer?!

My name is Sara and I was 34 years old and in the best shape of my life when I was diagnosed with ovarian cancer.

I had an IUD placed and on the follow-up placement ultrasound, they saw a cyst. I then had my CA125 drawn and it was normal. We followed up 6 months later with an ultrasound and still seemed just like a cyst. Then at my one-year post IUD placement follow-up ultrasound, the cyst had changed. My CA125 was only slightly elevated to 78. Thus started my journey. I met with a gynecology oncologist and surgery was scheduled. We were all very hopeful that it would turn out to be a cyst. I underwent a 6-hour laparoscopic surgery to remove the ovary/cyst. I refused at the time to sign for anything further as I wanted to have children and wanted to save my other ovary and uterus.

This is where my story takes a tragic turn. It was not a cyst. It was stage 3a high-grade clear cell ovarian cancer… my world fell apart. I had had no symptoms. My CA125 actually decreased right before surgery. How can this be?! I broke down in the hospital room. I cried. I screamed. I was broken. My doctor told me it was fertility vs survival at this point. We then decided to go back to surgery 2 days later, a large vertical incision, and remove all of my reproductive organs and biopsy everything in a 7+ hour surgery. This began the new chapters in my life.

Recovery from surgery was slow but I managed without any major complications. I started chemo about 3 weeks after surgery. I did do cold caps during chemo and kept 75% of my hair which was astonishing!! But such a complicated task! My chemo was carbo/taxol. I did carbo once every 3 weeks for 6 cycles and did taxol every week for 18 weeks. There was a lot of learning, a lot of crying, a lot of changes during that time. My body fought so so hard through chemo.

I finished chemo in December 2019 and started on a trial of oral and IV medications in Jan 2020 which will continue for 23 months. The oral medication is twice daily and the IV infusions are monthly. I see my doctor once a month and have regular labs and scans. I am currently about 1.5 years out from diagnosis and 1 year out from the end of chemo and am NED. My scan shows no evidence of disease and my CA125 is stable!!! My biggest worry besides dying was that I was going to lose myself when I was diagnosed. I was going to lose the positive outlook on life. I was going to hate my life going forward. That was all wrong. To those newly diagnosed you will be who you want to be/are. It will take some work, but you are still you and this time is trying but you can overcome it and push through and get back to YOU! I am a new version of myself, but my true character and outlook are the same. I still see the positive in life. I enjoy being active and getting outside. 2020 has slowed down the traveling but that is still a passion of mine! I am currently working with many girls to form a Young Ovarian Cancer Support Group on Zoom and I am so excited to bring this team together and show young girls that they are not alone.

Being diagnosed with ovarian cancer has taught me to say the hard things. There will be difficult conversations in life, not just with this diagnosis, but with life. They need to be had. Do not be afraid of what someone else will say. Say the hard things. Fight for your own happiness, ask for help, talk to someone, do not let yourself feel weak because of it. Being diagnosed with ovarian cancer isn’t your whole story. It’s your story and a huge part of it but it does not define you. YOU define you!