My name is Victoria and I was diagnosed with LGSOC at age 30. I wanted to share my story to raise awareness for ovarian cancer symptoms, to attest the importance of getting a second opinion, and to inform women with LGSOC that in some specific cases it may be possible for them to undergo IVF and fertility sparing surgery.
My story began with intermittent abdominal/pelvic pain and bloating for approximately six months. I didn’t think too much of this as I have a history of gastrointestinal (GI) issues and my symptoms only seemed to be a bit worse than normal. I went to pelvic floor physical therapy which didn’t alleviate my symptoms. There were several instances where the pain was fairly severe and traveled to my back.
I knew something was wrong when, at separate times, I felt a pelvic mass on my right side and on my left side when my bladder was full. I booked the soonest possible appointment with my PCP and requested imaging. A transvaginal ultrasound showed a 13 cm ovarian cyst on the right and a 7 cm ovarian cyst on the left. The report stated that a non-urgent MRI was recommended for further characterization. This MRI showed high suspicion for ovarian malignancy.
Surgery followed and only my right ovary (which was overtaken by tumor) and fallopian tube were removed during surgery. It was thought at that point that I only had precancerous borderline tumors by both my gynecologic oncologist and the on-site pathologist (who performed intra-operative frozen pathology). Unfortunately, my final pathology came back showing both LGSOC and borderline tumors in both ovaries. At this point, it was determined my remaining ovary, fallopian tube, and omentum would also need to be removed and I would need additional treatment.
I then met with a local reproductive endocrinologist who was not comfortable with assisting me in undergoing a cycle of IVF prior to my left ovary removal. He felt that it was potentially risky given that LGSOC is a hormone sensitive tumor.
I was terrified. I had a rare form of under-researched ovarian cancer at age 30, had just gotten married six weeks prior, and was told IVF was likely unsafe for me. My gynecologic oncologist didn’t have any patients who were similar to me and neither did the reproductive endocrinologist.
I did some of my own research and decided to see Dr. David Gershenson who is the leading expert in LGSOC at MD Anderson Cancer Center.
He agreed that my remaining ovary, fallopian tube, and omentum needed to be removed and that I needed additional treatment after this (either chemotherapy followed by letrozole or letrozole alone). He also strongly encouraged me to see a reproductive endocrinologist who had experience with cancer patients. I then transferred my care to the University of Michigan and met with a new reproductive endocrinologist and gynecologic oncologist. My gynecologic oncologist and reproductive endocrinologist considered IVF an “acceptable risk” for me. I subsequently underwent a successful cycle of IVF with letrozole protocol (which kept my estrogen at a safe level).
Less than three months after my first surgery, I underwent my second surgery. My uterus was left in place as there was no disease noted in that region.
Since that time, I have been treated with letrozole. I chose this as available evidence at the time showed that LGSOC is relatively resistant to chemotherapy, I did not have gross residual disease after surgery, and my stage was 1C3.
Recurrence is fairly common in patients with LGSOC. I am still at the beginning of my journey with this disease and I don’t know what my future holds. It brings me a sense of comfort to know that I thoroughly educated myself about this disease and advocated for myself. I am doing my best to stay in the present, stay active, and live my life to the fullest. I will forever be grateful for the support of my family and friends.
We are grateful to Victoria 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.
