When Rachel Long was pregnant with her second child in 2016, a maternal fetal medicine physician recommended she be tested for the BRCA mutation. She was 26 years old at the time, and with a strong family history of breast cancer — her aunt had died from the disease just a year before, and both of her grandmothers received diagnoses — she was a likely candidate to have inherited the mutation, which greatly increases a woman’s chance of developing breast cancer, according to the National Cancer Institute.
The young mom tested positive for the mutation and was given some preventative advice, but not any other diagnosis. A few months later, in December 2016, she gave birth to her second son, Noah.
Then a month later, Long, who lives in Elyria, Ohio, noticed blood leaking from her right breast. She hadn’t been breastfeeding, so she thought it was odd and called her doctor. Considering that she had just tested positive for the BRCA gene, her OB-GYN sent her to get a mammogram in February. Ten minutes into her drive home after her mammogram, she got a call from her doctor, telling her that they wanted her to do a biopsy, which she had that month.
In March, she got the biopsy results back from a breast surgeon and was diagnosed with stage zero breast cancer, a non-invasive cancer where abnormal cells have been found in the lining of the breast milk duct.
“I was shocked,” Long, now 27, tells PEOPLE. “Even with my family history, cancer wasn’t really my immediate thought or concern. I don’t want to say I wasn’t aware, but you don’t think it’s going to happen to you at 26.”
At first, Long was planning to have a mastectomy. But with stage zero cancer, she was able to take some time to weigh her options. A consultation with a second doctor led her to choose a lumpectomy. She had the procedure on July 12, which removed the cancerous part of the breast. She followed the procedure with immediate reconstruction, reducing and lifting her left breast to mirror the right one. During the surgery, doctors discovered that the cancer was further along than they originally thought, and that she actually had stage one carcinoma.
Long’s recovery was made all the more difficult by the fact that she had two small children to care for at home.
“Once I had my surgery, I wasn’t allowed to lift Noah at all,” she says. “I’m a stay-at-home mom, so he’s only really known me. He would just cry and fuss and he wouldn’t sleep when I put him to bed.”
Her oldest son, Jace, in particular, had a hard time with his mother’s illness. Not only was she not able to run around with him like normal, but he was fearful of what was going on.
“The 4-year-old, he knew I had boo-boos, but he was scared of me,” she says. “That was really hard for me to deal with. I felt like I missed out on a lot with my sons.”
During her recovery process, Long says that her husband’s support was invaluable. She says that in the immediate aftermath of her surgery, she couldn’t do anything when it came to caring for her sons. Her husband, Jason, 28, took two months off of work to take care of their children during the day. He also helped Long with her own basic tasks that she couldn’t do by herself, including tending her drains and incisions.
“The first few weeks were the hardest,” she says. “I needed help doing basic everyday tasks; he helped me shower, I couldn’t get dressed on my own, and couldn’t put lotion or deodorant on on my own. He did everything for me.”
Long had hoped parenthood would be a connecting force for her and other breast cancer patients in her community. But when she joined her local support group, she felt isolated. Almost all the women in the group were decades older than Long, and even though most of them were also parents, they didn’t have much overlap in their experiences.
“I felt kind of alienated, not by anyone’s personal actions, but just because their concerns weren’t my concerns,” Long says. “They may have children too, but they’re so much older. My sons are 4 years old and 10 months, they don’t really understand. Their kids, they could sit them down and explain.”
It’s a feeling that many young women experience throughout treatment, says Jennifer Merschdorf, CEO of the Young Survival Coalition.
“Young women are starting or are in the full swing of their careers. They’re starting families,” Mershdorf says. “That’s very different from older women when they’re diagnosed.”
There’s a disconnect with her peers, too. “They want to be there, but they don’t know what to say and do, which has isolated me and them,” says Long. Luckily, she found the Young Survival Coalition. Through phone calls, online forums and in-person meet-ups, Long says she’s started to feel less alone. “Everything I felt, they’ve understood. We’ve been able to connect and it helped,” she says.
Today, Long is still in the midst of treatment. She began radiation — as an extra-precautionary measure, to make sure they get all the cancerous cells, because Long is BRCA positive — on October 26. Her radiation treatment began three months after her lumpectomy because during recovery, she developed a MRSA infection, and had to wait for the all clear from the infectious disease specialist to go ahead with the rest of her treatment. At this time, she doesn’t know how many more rounds of radiation she has to undergo.
Long isn’t sure how her treatment will impact her fertility in the future. When Long was first diagnosed, she says no one brought up the possibility of freezing her eggs or other fertility concerns. When she told this to other doctors later on in the process, they were surprised it wasn’t mentioned to her. She thinks it might not have been a topic of discussion because she already has two children, but she felt it should have been addressed.
“It still is something I would have liked to have been asked and been made aware of,” she says. “I’m 27 now, and it’s kind of weird to think that anything would be permanent.”
She now encourages other young women — particularly those who don’t yet have children — who are living with breast cancer to bring up the issue of how treatment will impact their fertility early on.
“One of the first questions they need to ask is about fertility treatment,” she says. “No one said that to me, and I’m kind of lost right now. Be proactive and find out options.”