Overcoming Fear of Family History: Caitlin Kelly

For most of her life, Caitlin Kelly was afraid of cancer. Her grandmother died of ovarian cancer at 57. Caitlin’s mother, then 37, was treated for early-stage breast cancer. Twin aunts on her mother’s side both had ovarian cancer and died. A maternal great-aunt died from breast cancer, as did that woman’s daughter.

“Since I was a little girl, there was always the presence of someone being ill,” says Caitlin, 33, who lives in South Portland, Maine. In her teens and 20s, she became aware that changes or mutations in a BRCA1 or BRCA2 gene can run in families, causing higher risks of breast and ovarian cancers. Genetic testing can determine if a woman or man has a BRCA mutation.

Her mother’s diagnosis happened before BRCA testing was available. One aunt later tested positive for a BRCA1 mutation, but her mother thought Caitlin was too young to be tested and have the burden of results weighing on her. Caitlin believes her mother was trying to protect her from discrimination related to genetic information.

As she got older, Caitlin heard that women should start being screened for breast cancer 10 years before the age at which their mothers were diagnosed.

“That would have been when I was 27, but I was too scared,” she says. Having breast cancer or ovarian cancer “was something I thought was probably inevitable but I just wasn’t ready to face.”

Delaying Action

Instead, like many young people, she focused on school and her career. She was close with the aunt who was BRCA-positive and who had lived with ovarian cancer for 6 years, so “when she passed away, it was really difficult for me. I think that contributed to my fear,” she says.

Her mother was diagnosed with breast cancer again when Caitlin was 29. This time, it was in the opposite breast and was a more aggressive type. She tested positive for a BRCA1 mutation.

Caitlin took time off from working as an apparel designer to help her mother in Massachusetts. Her mother’s doctors strongly advised Caitlin to get breast cancer screening and genetic testing. At her mother’s first chemotherapy session, the doctors had a genetic counselor come in to speak with Caitlin.

She did not follow up with the counselor. “I had a really hard time with my mom getting cancer a second time. I couldn’t possibly think about myself,” she says. The pressure from the healthcare professionals made her feel uncomfortable, “even though I know to this day that it’s really great they pushed me.”

About two years later, Caitlin went for her first mammogram. She had early-stage, hormone receptor-positive, HER2-positive breast cancer in one breast. She also tested positive for BRCA1.

Paying for Fertility Preservation

After talking with her surgeon about the characteristics of her cancer, genetic risks and family history, Caitlin decided to have a double mastectomy and reconstruction. The surgeon encouraged her to see a fertility specialist about freezing her eggs before chemotherapy might damage them. I had to accept that other people needed to help me.

Having children hadn’t been in her thoughts. She had just started dating a man two weeks before her diagnosis. They are now in a committed relationship.

Under pressure to act quickly before chemotherapy, she was upset to learn it would cost $6,000 for egg removal plus one year of freezing. “I don’t have that kind of savings and they don’t do the procedure until you pay all of it upfront,” she says.

Independent by nature, Caitlin didn’t like being public about her situation, yet realized “I had to accept that other people needed to help me.” Her mother started a blog to tell friends and family what was going on. That inspired Caitlin’s cousins to set up a GoFundMe page to raise money for egg preservation. The cost of fertility medicines was covered through LIVESTRONG Fertility.

She had 32 eggs extracted and frozen. The eggs can be tested for genetic mutation before being used, a fact Caitlin calls “a silver lining.”

“That means I can hopefully not pass this down to anybody else if I’m blessed with a child,” she says.

In that way, she can help write a new chapter of family history.