Emily Campbell is raising the alarm for other young women who might be disregarding their symptoms
In December 2022, then-33 year old Emily sought medical help when she noticed her belly was so bloated she looked ‘about seven months pregnant. She was mistakenly diagnosed with constipation, gluten allergies, and stress-related gut issues.
Despite following the doctors’ advice, the marketing expert was not getting any better and headed to the ER near her home in Miami after the holidays as she started having issues even walking with her bloated stomach.
After an array of tests, she was informed by the doctors that a “large pelvic mass” and the fluid it was releasing was behind her swelling. The Not These Ovaries founder shared with Reach: “He says, ‘this is concerning for cancer. We need to rule it out’. And I remember saying back, ‘Okay, well let’s rule it out’.
“I think part of it was like my survival tactic was to take the information at hand and move forward. When you hear something like that, it almost feels so surreal, it’s not believable, it’s not real.”
She was admitted into hospital and, during her six-day wait for the surgical biopsy to remove the tumours for testing, Emily kept hearing the doctors and nurses talking among themselves about how unusual the case was, which left alarm bells ringing for her and her husband, Chris.
Emily’s case was indeed unusual – she had no family history of cancer and was more than 30 years younger than most patients. According to Cancer Research UK, the peak age for ovarian cancer diagnoses in the UK is between 75 and 79 years old. Furthermore, Ovarian Cancer Action revealed that only one in three women live more than 10 years after their diagnosis in the UK. .
When it came time for surgery, Emily remembered having to sign a waiver acknowledging that the surgeons couldn’t confirm which organs or how much tissue they would have to remove to extract the mass. However, they would preserve as much of her internal structure as possible.
She recalled: “I had to just be okay with that. I went into the surgery not knowing how much they were going to find or take. I remember waking up and asking…my husband was like; ‘Yeah they took everything’. My uterus was gone, ovaries gone, fallopian tubes gone, cervix gone. They took my appendix. They found tumours on the colon, the bladder, the inside of my abdomen.”
Looking back, Emily realised that the tumours must’ve been growing for years, but ovarian cancer rarely shows symptoms in the early stages. After her pathology results came in, confirming a diagnosis of ovarian cancer specifically the lower grade borderline type.
This affects a much younger demographic than the commonly known high-grade form as it impacts women mainly aged between 20 and 40 and has a far higher chance of long-term survival. Unfortunately in some cases it isn’t as receptive to chemotherapy as its fast-growing counterpart.
Emily sought multiple medical opinions post-surgery before deciding against chemotherapy, choosing to monitor her cancer indefinitely instead: “It’s blood work every single 90 days and a scan every six months. They can recur. They could come back in 10 years, 20 years.”
She was also given medication designed to inhibit the oestrogen which fuels her cancer. However, she found out that the drug in question is typically prescribed for breast cancer patients who have gone through menopause in the USA.
This was the second alarm bell for the cancer survivor: “It’s prescribed (to ovarian cancer patients) because it’s essentially an educated guess. These young women are getting these diagnoses and they’re losing their ability to have families and they’re not even getting a treatment tailored to them.”
Fuelled by a determination to enact change, Emily, with the help of her partner Chris, astonishingly raised over $1.5million for the Dana Farber Cancer Institute, where she had gone for a second opinion, supporting their research into low-grade ovarian cancer, all this within six months of her surgery.
The couple’s struggle to find information on Emily’s cancer was the catalyst for their decision to take action, leading them to establish ‘Not These Ovaries’ last January. Describing the essence of her non-profit, she said it’s like “the older sister that’s been through it, who can tell you how it is and give you the information. They can be gentle about it but they can be truthful about it.”
Despite never intending to start a charity, it’s now Emily’s full-time job. While she takes great pride in the non-profit and the $200,000 it has raised, there’s an underlying sadness for the 35 year old who admits: “We were the best people for this to happen to, if that makes sense,” though she would vastly prefer not having cancer and retaining her reproductive organs.