Addressing the Specialized Needs of Younger Breast Cancer Patients

Addressing the Specialized Needs of Younger Breast Cancer Patients

By April Johnson Stearns

It was a Wednesday, around noon. The coastal morning fog of summer was finally burning off, revealing a bluebird-blue sky above the clouds and the promise of a hot day. The sun was already glaring and made a good excuse for sunglasses. I dug in my purse for them as my flip flops smacked a staccato rhythm against the pavement. I could not get to my car fast enough. I brushed the tears off my cheeks and slid my glasses on. 

“Hey!” The woman’s voice rang out just as I got to my car. All around me, others from the Wednesday morning writing class were locating their keys and getting into their cars, peppering the air with the thuds of doors slamming. I knew she was calling to me. I turned. Her name was Becky. She had short brown hair and a dazzling white smile. I had spotted her across the room at the first meeting of our writing class but even though we were weeks into the class now, we hadn’t yet talked one on one. In a room full of mostly older, grey-haired retirees, the two of us really stood out as the only ones under 40.

“Wait up,” she breathed as she jogged up to me, flashing a big, white smile. “I know we aren’t supposed to talk about the stuff we hear in class, but I really need to tell you that you aren’t alone.” 

The tears started streaming down my face again. 

It had been two years and a handful of weeks since finding the lump in my left breast that kicked off the whirlwind of diagnosis and treatment plans and surgery followed by radiation, and yet my breast cancer was something still so fresh, still so raw, that I carried it with me everywhere, the grief of it all bubbling to the surface often. Thus, it was no surprise that it had shown up in my writing in class that day. Becky had also been diagnosed, she said. And with that, she became my lifeline, a puzzle piece I hadn’t realized was missing for more than two years until she called out to me. She was the first woman I met who had also been diagnosed under 40.

A cancer diagnosis is a life-altering experience for most people, to say the least, but since my own diagnosis I have learned that young women with breast cancer often face extra challenges specific to our stage in life. It is estimated that more than 21,000 women under 40 will be diagnosed with breast cancer in the United States this year. As they battle this illness, being under 40 means they will also likely face age-specific challenges that stem from their cancer treatment related to fertility, raising children, finishing school, managing a career, and building relationships. They may also face sexual dysfunction, body image issues, as well as genetic concerns. These particular challenges require specialized resources that are thoughtful and age-specific.

While 21,000 young women facing breast cancer this year may sound like a big number, think about those women scattered all across the US, from big cities to small rural communities. It is possible, even likely, that a newly diagnosed young woman will know no others like her – not in her social circles or at work, or perhaps even in her own family. Her doctors may also know very few young women with a history of breast cancer. All of this can lead to a very isolating experience, as it was for me.  

One of the writing prompts in class that day that I first met Becky was set up alongside this quote from Jack Cornfield: “In the end, only three things matter: how much you loved, how gently you lived, and how

gracefully you let go of things not meant for you.” I’ve always loved that quote, but that day, it was like a searing hot rod, right into my heart. “… how gracefully you let go of things not meant for you.” It was like a big neon sign from the universe reminding me that fertility and the hope of a second child was not meant for me. But I was having a really hard time gracefully letting go of that one so that was what I wrote about and shared.

“Cancer treatments have put me straight into menopause, too,” Becky said to me, as we stood in the sun beside my car. “I know it hurts and it’s really not fair.”

Just having her say that to me meant the world. While the other older women in our writing class could relate to menopause, premature menopause is a whole other beast. To know I wasn’t the only one feeling as though my heart was breaking into a million times a day whenever I saw a baby or learned of a friend’s pregnancy on social media, to know that Becky might also be feeling that sting, made it a tiny bit better for me. 

The American Society of Clinical Oncology has recommended that oncologists address the possibility of infertility with all patients about to be treated with systemic adjuvant therapy during their reproductive years. They also recommend that oncologists be prepared to discuss fertility preservation options. However, studies have shown that those discussions and any needed fertility preservation referrals often don’t happen. 

This was the case for me. 

The day I met my oncologist (who I can honestly say I love!) he asked me if I had any children. I did – a daughter I was breastfeeding at the time of finding my lump. My husband and I shared with this new doctor that we were just starting to think about possibly trying for a second baby. “Don’t!” my oncologist joked, laugh lines sprouting around his eyes. He shared that he and his surgeon wife had just had a second baby and he laughed that they were more frazzled than ever with this one simple, tiny addition to their family. “Don’t do it! Stop at one!” he said with mock alarm.

We all laughed, and I was grateful for a bit of levity in an otherwise very dark and serious meeting in which it was decided I needed to begin chemotherapy as soon as possible to combat an aggressive form of breast cancer. It wasn’t until later that I realized that was the one and only conversation my doctor and I had about my fertility. As luck would have it, I had a period on the first day of chemo. Conventional wisdom suggested that given my age, my periods would resume when treatment ended. I was advised that it would not be a good idea to get pregnant during chemo. And that was the end of the discussion.

As I stood by my car talking to Becky the day of the writing class, I told her that my period had not returned in the subsequent years. She nodded. Her breast cancer was different than mine, so she was taking hormone treatments to suppress her fertility. She shared with me how she’d scrambled to preserve eggs with financial assistance from the Livestrong Foundation before she had begun her chemo treatment. It was my first time learning that that might have been possible for me, too, had I only known. It was another loss added to the deep wound that was my infertility. 

Studies have shown that age-specific resources can significantly improve a patients’ well-being. Even better are resources that are created by young women with breast cancer for other young women with breast cancer, a trend that has recently begun to grow. When patients are given these resources, they are able to recognize themselves. They feel less alone and are given hope that their post-diagnosis problems can be addressed. 

Becky shared with me that day the name of a fertility oncologist in our area at Stanford University. I went right home and made an appointment with her. Maybe post-cancer fertility was indeed something I would need to ultimately find a way to let go of (gracefully?) but meeting Becky and pooling our resources spurned me on to fight another day. I only wish I had received this valuable information from my doctor earlier, preferably before I started chemotherapy. Young women facing breast cancer need both a community of others as well as doctors that understand and address the uniqueness of their diagnosis with specialized and age-specific resources.

A few resources designed specifically with younger breast cancer patients in mind are The Young Survival Coalition (youngsurvival.org), Rethink Breast Cancer (rethinkbreastcancer.com), and WILDFIRE Magazine (wildfirecommunity.org). 

 

April Johnson Stearns, Founder, Editor-in-Chief, WILDFIRE Magazine

A lifelong writer, April was diagnosed at 35 years old with Stage 3 breast cancer that she found while breastfeeding her daughter. Four years later, while struggling to “go back to normal” and find other young women in similar circumstances, April launched WILDFIRE Magazine as a way for younger women to tell and read breast cancer stories. She lives with her husband and young daughter on the coast of California. April loves to hike in the woods with her Border Collie, but writing remains her purest escape.

Website: Wildfirecommunity.org

Facebook: facebook.com/wildfirecommunity

Instagram: @wildfire_bc_magazine

Email: editor@wildfirecommunity.org


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