Read Time: 6 minutes
Updated April 2022
Originally Published April 2021
From time to time, Huntsman Cancer Institute invites guest commentary from our community. The views reflected in these commentaries are those of the author and do not necessarily represent the official views of Huntsman Cancer Institute.
From the first, I’ve had erratic periods. I could go long amounts of time without a period or it would start and I wouldn’t stop bleeding. I saw several different doctors and gynecologists throughout adolescence and into adulthood, and we never totally figured it out. Most gave me birth control and sent me on my way. Eventually I was diagnosed with polycystic ovary syndrome (PCOS).
A few months before my 29th birthday, I noticed a lump in my pubic area. It didn’t hurt but it was uncomfortable and huge.
With polycystic ovaries, no one—least of all me—was surprised when an ultrasound detected a large cyst. My blood work also came back with an unusually high protein count, so I was referred to Dr. [Andrew] Soisson, a gynecologic oncologist at Huntsman Cancer Institute.
No one believed it was cancer. Each time I got off the phone with my doctors or out of an appointment, I called my parents, who live out of state, to reassure them I was fine. It wasn’t cancer. It was likely just a large cyst about the size of a softball. It was too big to drain or to leave and did need to be surgically removed.
I felt mostly unconcerned during this time. In fact, I had a lot of hope that maybe the upcoming surgery was the thing that would fix all my menstruation and ovulation problems. I was still single, but I knew I wanted to get married and have a family someday and knew it would be difficult given my history.
My surgery was scheduled in early fall 2014. The plan was for a fertility-sparing surgery that would remove the cyst. I was reassured that my hope for a future family would not be affected so long as I had one working ovary. After surgery, I learned that I had lost my right ovary and fallopian tube, as it had been so damaged by the cyst that it couldn’t be saved. I still had one ovary, though, so I let myself feel unbothered and hopeful for the future.
It was at my surgical follow up a couple weeks later that I finally had the diagnosis. Cancer.
The pathology indicated the massive "cyst" was actually granulosa cell carcinoma, a rare type of ovarian cancer. They had removed the tumor but had also found cancer cells in my abdominal fluid, along with a nodule on my intestine. Because of my age, I was told they wanted to treat the cancer aggressively with chemotherapy to do what we could to keep it from coming back.
I went to see Dr. [Theresa] Werner and started chemo on November 1, 2014. I went through chemotherapy with the understanding that I was doing it for maintenance. To clean up cancer cells that may have been left behind.
I struggled with being grateful for this medicine that made me feel sick and ugly. I also felt very alone. While I always had someone with me in the infusion room, I got hung up on the many blog posts and stories from women going through cancer who wrote about the support of their partners. I was keenly aware of the fact that I didn’t have anyone steady in my life and the only person who could prioritize me was me. It feels ungrateful to give a voice to those bitterest of feelings, because I did have a sturdy network of friends and family members who made efforts to be there for me, but whenever they returned home or back to their lives, I felt miserable about still being single.
Once chemotherapy ended, I moved on with life. My experience with cancer seemed to be a blip. A fluke. My scars faded. My hair grew long again. I was dating more. I felt like a fraud when people called me a survivor. I acknowledged that I had gotten off easy. I felt more inconvenienced than anything else. I also quickly realized that the cancer was not the answer to my bleeding problems and I didn’t start ovulating normally, even though I had one healthy ovary.
Then I finally met my person. I married David in August 2019. I told him I wanted kids but that they may be hard to conceive, but we’d talk about it in a year or so. But a month later, I was in the hospital in extreme pain. We thought it was tied to a travel bug caught from a work trip to Cambodia. After getting scans, I got the news there was a cyst on my remaining ovary.
Because of my history, the doctors wanted me back at Huntsman Cancer Institute. They began talking about removing my ovary and I realized that my previous experience wasn’t as far behind me as I had hoped. I was terrified of risking my fertility, especially since I hadn’t even had a chance to try getting pregnant, so we talked to the Utah Center for Reproductive Medicine and began an IVF plan.
In March 2020, my hormone levels spiked again and I got a call from Dr. Soisson; it was decided. It was likely another granulosa cell tumor and my ovary was too compromised to leave intact and needed to be removed surgically. We did one final round of IVF and in the end, through three cycles, froze five embryos. I fought to keep my uterus. I was determined to carry those little embryos and deliver my own babies.
When the pathology came back, it was confirmed to be a granulosa cell tumor. Dr. Soisson had also identified a carpeting of tumors in my abdomen, so I went back for a second larger surgery in July 2020, in the middle of COVID-19. I found myself separated from my husband in the hospital room alone.
Recovery from a laparotomy is a long road, but I’m finally feeling more recovered. I’m on a hormone blocker, which will hopefully mean a reprieve from developing more tumors. During the IVF cycles, we were so invested in building our family that we wanted to know how we could proceed rather than waiting like we originally planned.
I cannot adequately express what it’s like to be reduced to mere survival during the first year of marriage. There is nothing sexy about cancer. Fighting for my fertility and having my body feel as though it has aged twenty years has tested my mental and emotional fortitude in ways it has never been tested before.
I’m learning how to deal with this new body and accept it, scars, hernias, and all. I feel so grateful that I know I’m not alone. I have a wonderful, supportive husband, family and friends, and lovely doctors that I trust with my life.
There are some reservations from my husband and my doctors about me carrying a baby this soon after a recurrence. We don’t know if the hormones needed to get and stay pregnant will cause yet another round of tumor growth. I was upset by the delay but decided to table the discussion for now. Recently, a friend from high school offered to be our compassionate gestational carrier. In March 2021, we transferred the first of our little embryos and are waiting hopefully to see if the result will mean we have a baby by Christmas.
2022 Update
When I was diagnosed with granulosa cell carcinoma (ovarian cancer), my biggest fear was how it would affect my fertility. It did. While I was not able to carry, an acquaintance from high school volunteered to help.
Now, I sit with my four-month-old, marveling at all the miracles that have happened. Human development is fraught with little dangers. When I think about everything that had to go right in order for Callen to be here, I am overwhelmed. I feel beyond blessed.