In August of 2023, I had a cyst rupture which lead me to the ER while I was still living in Florida. I had an ultrasound and CT scan done. Doctors there told me this is a really common thing for women my age, to have cysts rupture, and that no follow up would be needed. I got some pain meds, rested for a couple of days and went about my life.
Less than a year later, I moved back home to Upstate New York. I started noticing more cramping, pressure and pain in my pelvis, but it wasn’t constant. I just thought it was due to my normal cycle. Fast forward to November 2024, I finally got in to a new gynecologist because by this time I was having an unbearable feeling of pressure, shooting pains, lower back pain, spotting, you name it. They ordered an ultrasound and discovered a 10cm right adnexa large complex solid mass surrounding my right ovary, it extended to the posterior uterus. They ran tumor marker blood tests. My CA-125 came back at 176. At this point I was referred to a gynae-oncologist at Upstate Hospital. She ordered more tumor marker tests (LDH, AFP, HCG) which all came back within normal limits. An MRI was ordered by my gynae-onc for the day after Christmas, 2024. The MRI result came back as a serous borderline tumor.
At this point, surgery was needed. My gynae-onc explained to me that I needed to have an exploratory laparotomy on January 8, 2025. While I was in surgery, the tumor was removed along with my right ovary, fallopian tube and omentum. The tumor was tested during surgery and it came back borderline. My doctor was a little suspicious about where the tumor was pressing up against the back of my uterus but told me she thought it was just inflammation. She biopsied it to be sure. There was no other evidence of malignancy on any of my surrounding abdominal organs. I spent four days in the hospital recovering from this major surgery. I was told that no chemo would be needed, and I would only need regular follow ups going forward.
On January 21, 2025, I went to my two week post-op appointment at Upstate. That was when my whole world got ripped out from under my feet. My doctor explained to me that the full pathology report came back and it is now considered to be low-grade serous ovarian cancer (LGSOC) due to the invasive implants on my uterus. This type of ovarian cancer is rare, estrogen driven, presents at a younger age, and can originate from serous borderline tumors. There are no routine check ups (screening or early detection) for ovarian cancer, yet it is one of leading causes of cancer deaths among women!! It was then I decided to get a second opinion.
Within a couple weeks, I was at the University of Rochester seeing a different gynae-onc for a second opinion. Their diagnosis was a little different, but the treatment plan was still to be the same as Upstate’s. I decided from there that I will keep my care, for now, with Upstate as it is closer to home.
In March of 2025, I went through a round of IVF to retrieve and freeze my eggs. Another surgery was needed to complete a full hysterectomy. My second surgery was done robotically in April 2025. My doctor found “small pimple like specs” on my right diaphragm which came back positive for LGSOC. This made me jump from stage 2c to stage 3b. The second surgery was successful and I was told there was no more visible disease.
My doctor wanted me to enroll in a trial which would have randomly categorized me into chemo follow by letrozole or letrozole by itself. I wanted to feel a bit more in control of my situation so I chose not to enroll and do chemo then letrozole. I started chemo in May 2025. Chemo is a whole different story but you can guess how horrible it was!
I finally finished chemo on LGSOC Awareness Day – September 9, 2025. My CT scans will be in a couple weeks. I will then be starting letrozole. In between all this, my tumor was tested for horomone receptors. It came back to be above 90% for estrogen and progesterone which is a great sign that this drug may work to keep the cancer at bay.
Update April 2026: I was declared NED at the end of September 2025 and have been on letrozole since. It has not been easy, but I’m so blessed and grateful to be where I am in my journey. My life has obviously drastically changed. I’m still trying to live a “normal” life in between all of my treatments. I have a wonderful support system at home and I would not be able to handle all of this without them and all of the lovely women I’ve met through social media with the same disease.
We are grateful to Stefanie for sharing her experience with low-grade serous ovarian cancer and for helping us raise awareness. If you would like to share your story too, find out more here.
