About one in eight women will develop breast cancer over the course of their lifetime, but according to the Susan G. Komen Breast Cancer Foundation, less than five percent of women diagnosed are under the age of 40. The same goes for ovarian cancer; most occur after menopause and half of all ovarian cancer diagnoses are in women over 63. But the incidence of breast cancer in younger women is on the rise, and while these diagnoses are undoubtedly challenging and life-changing for women of all ages, they can present different challenges for young women. So, we asked survivors and previvors to share what they’ve learned after being diagnosed with ovarian or breast cancer under 35. Below is their best advice for others who may be dealing with a similar diagnosis.
Be your own advocate
Allie Brudner is a breast cancer survivor who was diagnosed at age 28 after she found a lump and brought it to her doctor’s attention. “With no significant family history of breast cancer, I had to advocate for myself,” she says. Listen to your body and trust your gut, even if the medical community initially brushes you off. To the same point, make sure to get second and even third opinions, says Morgan Bellock, who was 34 when she was diagnosed with ovarian cancer. (Just avoid Googling things, she adds.)
Know that decisions will be difficult
“When you’re young and dealing with cancer, the experience is entirely different, as is the decision-making process,” says Brudner. Women diagnosed with breast cancer under 35 have to deal with issues and choices such as fertility preservation and completely losing your libido due to the side effects of treatment — and how to talk to your partner about that, no whether you’re married or single and dating, she points out.
The option for genetic tasting also forces many young women to face challenging decisions. In 2017, Paige More, now 27, opted to have a preventative double mastectomy after discovering she carried the BRCA 1 genetic mutation. Feeling isolated during the process, she took to social media to help share her story and find support (more on that point in a minute).
“I lost my mother to breast cancer at the age of 6 and grew up constantly worrying about my increased risk,” says Brianna Wesley-Majsiak, 25, who is currently navigating the process of surgery and making prophylactic decisions after testing positive for a lesser-known gene mutation. All of this is hard and isolating, per the next bit of advice…
Find a support system
“Being diagnosed young is an incredibly isolating feeling. While doctors offered numerous support groups, I didn’t feel like I belonged. I was at a very different stage in life with very different concerns, and it was hard for me to get the support I needed,” says Bellock. This exact feeling is what spurred Brudner, More, and Wesley-Majsiak to co-found The Breasties, a non-profit 501(c ) organization that empowers young women dealing with reproductive cancers through community and friendship.
Being in a sterile room of a hospital or community center talking about cancer was not want we needed, says More. “We wanted to create a place where women could find community while doing the things they want to do, like workout classes, potluck dinners, paint and sip nights. So we host events and retreats that do just that, while still being a safe space to talk through the hard stuff like losing your hair, making surgical decisions, and navigating relationships,” adds Brudner.
Prepare for a new normal
“People don’t talk enough about the ‘survivorship’ struggle,” says Bellock. “There’s a common misconception about beating cancer — people think you must be relieved to have cancer behind you, but the truth is, it’s more a part of my life than ever before. I continue to struggle with anxiety and sometimes I don’t feel safe in my own body. It’s something I think all young adult cancer survivors have to deal with,” she says. This is where a support system continues to be invaluable, she adds.
“As a young woman facing a breast cancer diagnosis or a genetic mutation that makes you high risk, it can be really hard to make sense of where you go from there. Your medical team will guide you in terms of your physical health, but once you are deemed healthy it’s not always an easy adjustment. Everything changes — your body is different, you have new worries, your whole perspective may have changed, and it’s hard to adjust to this new normal,” points out Wesley-Majsiak. You just have to try and understand the impact that this disease had on you and how you live your life moving forward, adds Bellock. As the saying goes, one day at a time.