By Rachel Sackett Putman, as told to Stephanie Booth
Most people aren't familiar with ovarian cancer, let alone the rare subtype called low-grade serous ovarian cancer (LGSOC). It disproportionately impacts young premenopausal women and accounts for less than 10% of all ovarian cancers.
LGSOC is chronic, requiring lifelong observation and maintenance, and it has a high recurrence rate. It typically doesn't respond well to chemotherapy, which means fewer treatment options.
I'm an LGSOC survivor. Cancer shows up in every second of my life, whether I want it to or not. The question is: How much do I want it to hold me back? The answer: Not at all.
A Surprise Diagnosis
In 2020, when I was 37, my husband and I started trying to have a baby. My fertility doctor referred me for surgery because of what seemed to be an ovarian cyst or some kind of blockage. The surgeon realized that it was worse. Endometriosis [a condition in which uterine tissue grows outside your uterus] was causing my difficulty getting pregnant. A CT scan not only showed a mass in my right ovary, but a mass in my left breast.
My husband and I were about to go back to the resort in Jamaica where we got married to celebrate our fifth wedding anniversary. Instead, I saw a gynecologic oncologist and a breast oncologist.
Information about my breast cancer was fast. They literally did a biopsy, and said right then and there: "You have stage II ER-positive breast cancer." Boom. I had to ask, "What's going on in my abdomen?"
When I finally had a PET scan, my abdomen lit up like the Fourth of July. Talk about the floor dropping out from under you. Originally, the gynecologic oncologist and breast oncologist were going to do a combined surgery, but after the scan results, the gyn onc decided he needed to operate immediately and separately.
That was when I realized just how serious all of this was. It felt like I was watching someone else's life, like this couldn't all be happening to me, at the same time as a global pandemic and only a few short months after my dad had passed. This couldn't be real. This couldn't be my life. But sadly, it was all happening to me and there was nothing I could do to stop it.
No pathology could be confirmed during the surgery, but because my surgeon knew I was trying to get pregnant, they ended up only removing my right ovary, right fallopian tube, and appendix. About two weeks later, I had a full bilateral mastectomy and reconstruction.
I went very aggressive with the surgery because I still wanted to try to have a baby. I was like, "Let's do this!" I'm very blessed that I got through everything so well.
Then the test results finally came back. I had stage III LGSOC.
Starting Treatment and Looking for Answers
I didn't have any symptoms. It sounds wild, but if not for trying to have a baby, I would have never discovered the ovarian mass. And if not for the ovarian mass, I would have never discovered the breast mass. I was still a few years out from my first mammogram, and because I have dense breasts, most mammograms don't detect that and you need an ultrasound. So there are all these blessings in disguise.
I had more surgery to remove my left ovary, left tube, omentum [fatty tissue that lines the abdomen], cervix, and uterus. By the end of July, I was down 10 body parts and looking for answers. When you hear that you have a very rare cancer, you're trying to figure out, "Well, now what?"
At first, I didn't understand why I didn't need chemo or radiation. I had started talking to other cancer survivors and everyone was having chemotherapy. Why wasn't I? After getting a second and third opinion, I understood that LGSOC doesn't respond well to chemotherapy. Based on the results of a tumor profiling test, I also didn't need chemo or radiation for the breast cancer because I went so aggressive with the surgery.
I began taking letrozole, an aromatase inhibitor [anti-estrogen medication]. It helps with both my breast and ovarian cancers because they're both estrogen-positive cancers. Still, it causes side effects. Every day, all day, I'm in pain. I have no energy. I'm on permanent disability. I can't work full time and I can't have biological children. Financially, my LGSOC diagnosis was a big hit for us. It changed my relationship with my husband and my relationship with friends. Now, I have cancer friends and not-cancer friends, and those relationships are vastly different.
After my diagnosis, I joined an LGSOC Facebook group and started connecting with other survivors online, which really helped me a lot. I also became involved with Cancer Support Community Arizona, which is part of Gilda's Club. Their Survivorship 101 class is where I studied Viktor Frankl's book Man's Search for Meaning and learned that "if you have your why, you can survive any how."
I had to talk nonstop with insurance companies to get procedures approved or find surgery centers that were open during the pandemic. Advocating is in my DNA, but I asked my plastic surgeon: "Who helps other women who are older or don't have the support system that I have?" And she said, "You. You need to do it."
Since then, I advocate, share my story, mentor newly diagnosed young women, volunteer for different ovarian cancer groups, and sit on the board of directors of the National Ovarian Cancer Coalition. This gives so much purpose to my pain, and that's how I've been able to get through this devastating ordeal.
Life as a Survivor
My husband and I love paddleboarding, kayaking, hiking, biking, and camping. We live on a 15-mile greenbelt in Arizona that has ponds and birds. It's gorgeous!
After being cooped up inside during my treatment and the pandemic, getting outside and living life again wasn't just a want, it was a need. We organized driveway happy hours to meet up with friends at a safe distance. We got more into hiking, walking our dogs, riding bikes – things that made me feel "normal" again.
I'm really grateful for the level of resilience I have inside of me. I use that power to not hold me back from the things I want to do. My advice to others is to figure out what makes you happy and do it. Holding yourself back will not let you heal.
I have had to make some changes. For instance, I do more kayaking than paddleboarding now because I don't have the balance and strength to stand for long. Hikes can't be too steep or strenuous, and I ride a pedal-assist electric bike.
Recently, my husband and I went to a three-day music festival. There was a lot more sitting than I used to do, but I was still there, dancing and feeling it. In that moment, there was no cancer. There was just me doing what I love to do with my husband. That's survivorship saying, "I will not let this hold me back."
Some days, maybe it's not going to a music festival. Maybe it's just getting out of bed in the morning. Everyone's on their own journey, and every day looks different. I'm just grateful to be here and even more grateful for this crazy adventure we call life.
