From Gold to Pink: A Childhood Cancer Survivor’s Battle With Breast Cancer 

By Melanie Robins, The Seany Foundation

Photo of Ellen by Coral Avery

“I’m okay. Today’s not too bad. I started a new chemo last Friday, which I have weekly, every Friday. It’s not as brutal as the last four sessions, which were every other week and were way more brutal.”

This is it. This is what all cancer survivors, especially childhood cancer survivors, fear: the dreaded second diagnosis. Anyone in the oncology world knows that having cancer increases a person’s risk of “late effects” like heart problems and secondary cancers, which can occur months or even years after the last cancer cell was declared gone. The reality for kids who survive cancer is that the younger they are when they beat it, the more years they have to worry about getting it again.

Two months ago, Ellen Erickson, 19, of Chula Vista, CA, found out that she has breast cancer. For so many reasons, her diagnosis was unbelievable. After battling an aggressive form of osteosarcoma at 11, there was no way she could be dealt the cancer card again. There was no way the breast lumps that her doctor had been monitoring for two years, and that all the tests had declared benign, could turn out to be something more. And there was no way the eight doctors who saw Ellen and told her over and over again how unlikely it was for such a young woman to have breast cancer (the average age at diagnosis is 61)[1] could be wrong.

It wasn’t until a routine hospital visit for an echocardiogram to make sure her heart was working normally (a common follow-up test for young cancer survivors) that breast cancer became a real possibility to Ellen. During the visit, her mother, Cynthia, followed through on her instinct and called on Ellen’s pediatric oncologist to take a look at the lump in Ellen’s breast, to which the oncologist replied the lump needed to be removed immediately.

Two weeks later, Ellen received a biopsy—“by the way, those hurt!”—from a doctor who, joining the chorus of others, told Ellen she did not believe she had cancer. However, six days later, the call came that the lump was, in fact, cancerous, and that she would need to begin chemo to stop it from spreading. Of learning about her new cancer diagnosis, Ellen says, “It was brutal, a giant shock.” With so many people telling her she couldn’t have breast cancer at such a young age, she struggled to believe it herself. In fact, when Ellen went to the breast center for treatment, one of the doctors who had told her she couldn’t have breast cancer was stunned to see her there. “All he could say was, ‘Good luck,’” she recalls with a snicker.

Then: Kid cancer

Before we talk any more about the present, we need to go back in time to when Ellen was diagnosed with cancer the first time. It was 2007, she was 11 going on 12. According to her, she was a social kid and very active, with a great love for soccer. Because she was so healthy and active up until that point, Ellen was confused when she learned she might have cancer. “It was tough at first. I didn’t really know what cancer was. I thought that I was just having a sports injury, and needed surgery to put some bones back together.” She recalls the moment when the doctor first touched her leg—which had no visible lump—and remembers watching as his eyes “bugged out” before saying she needed x-rays right away. Once the results were in, the doctor called her parents into his office, which was covered in x-rays of their daughter’s leg and the tumor that was growing inside of it. Still, her parents decided not to tell Ellen until they had definitive proof. She was admitted to the hospital the following day and two days later had a biopsy. After the biopsy surgery, Ellen was in her room, daydreaming about leaving the hospital the next day when the oncologist called her parents into the hallway. When they returned, her mom and dad broke the news to her that she had osteosarcoma. Ellen was confused, and she says the only thing she knew about cancer back then was that it makes your hair fall out. “At the time I had long hair down to my mid-back. All I said was, ‘I‘m going to lose all of my hair.’”

The days and months that followed were not easy. Ellen went from worrying about normal 11-year-old kid things like sports practice, homework, and going to bed on time, to cancer. She underwent two years of chemotherapy and about 15 surgeries, including the reconstruction of her knee and placement of a titanium rod in her leg. To make matters worse, the once very active girl was now virtually immobile. “At one point I had 136 stitches in my leg.” She could move from her bed, to a wheelchair, and back to her bed again. That was it.

She ended up missing all of 6th and 7th grades, important milestones for a prepubescent kid trying to figure out her place in the world. Despite all that it took from her, Ellen credits cancer with some positive outcomes: “It made me stronger as an 11 year old to know that I am one tough cookie.” However, she recalls a particularly dark period in the early days of getting chemo when she would curl up in the fetal position on her hospital bed and stay that way for hours. “One time, because I had laid in that position too long, I had to put my leg, which had a titanium rod in it that had moved out of place, in a machine that straightened my leg, and oh man! That hurt more than I could ever have imagined.”

When asked how she made it through such an arduous journey of childhood cancer, Ellen says, “The only thing that kept me going was a smile on my face and knowing that I was going to make it.” She also says she owes a lot of her strength to her two favorite cancer support networks: Seany’s Camp Reach for the Sky and SOMBFAB (Some Of My Best Friends Are Bald) at Rady Children’s Hospital-San Diego. “I met so many great, strong people at Camp. Camp is my home, my second home, my second family. SOMBFAB is…it’s just brilliant!”

Now: Adult cancer

This time around Ellen is able to stay at home with her family, and receives chemo on an outpatient basis. This allows her to hang with her favorite pooches, Yani and Jake, and have regular visitors, such as her best friend, Giselle, who, incidentally, she met in the hospital years earlier when she burst into Ellen’s room talking about all the fun, cancer-related things Ellen could do once she felt better, like Camp and prom.

For now the tumor seems to be responding well to chemo, and has shrunk from six inches to five. Barring any setbacks, her treatment will be ongoing until mid-January when she is slated to have a double mastectomy followed by reconstructive surgery. Ellen admits that this new reality of breast cancer has been difficult to navigate. “I didn’t even know what a double mastectomy was until last week.” In fact, she says she’s been feeling caught between the two worlds of childhood cancer and adult cancer, and she’s struggling to find her way in both. “I don’t really feel comfortable talking about my breast cancer diagnosis with people my age, and I feel like a kid around the older patients where I get treated.”

That “caught in between” feeling is common among adolescents and young adults going through cancer, regardless of which number diagnosis it is. This group of patients struggles with a unique set of issues (sexuality, dating, education and career aspirations, fertility)[2] that little kids and older people just can’t relate to. To address the issue in their facility, Seattle Children’s Hospital opened the first-ever cancer unit just for teens and young adults in the U.S. In the Time article about the revolutionary move, “A Unit of Their Own: Addressing the Special Needs of Hospitalized Teen Cancer Patients,” Dr. Brandon Hayes-Lattin, Director of the OHSU Knight Cancer Institute’s Adolescent and Young Adult Oncology Program, Associate Professor of Medicine in the Division of Hematology and Medical Oncology at Oregon Health and Science University, and Senior Medical Advisor to the LIVESTRONG Foundation, attempted to shed some light on the reason why teens and young adults are often left in the dark when it comes to having their medical and psychosocial support needs met: “One of the challenges has been that the two different worlds of pediatric versus adult cancer treatment have been so separate that it has been hard to address the needs of the people in between.” [3]

Ellen is not alone. Each year in our country about 70,000 teens and young adults (ages 15 to 39) are diagnosed with cancer.[4] However, her story is unlike many others because she is doing it for a second time. She is having to pave her own way through the pink new world of breast cancer, while figuring out how to incorporate her identity as a golden child cancer survivor, with all the struggles and triumphs she had to go along the way. It’s no wonder that Ellen is now having to deal with some unpleasant emotional responses to her unique situation. While she says she’s been able to stave off depression, anxiety has become an issue. “I never had anxiety until being diagnosed now. I’ve had a bunch of tests run on me looking for cancer, and being back in the hospital…it all came back. I was getting a PET scan and it brought back scary memories from childhood cancer…I had an anxiety attack.”

Still, aside from all the fear, the disbelief, the frustration, and pain wrapped up in a second cancer diagnosis, Ellen works to maintain a mostly positive outlook, which comes from her rather existential view of the whole ordeal: “I know that, in my heart, I’ve taken suffering away from someone else. Instead of a kid getting whatever kind of cancer and not knowing what to do, I’ve taken that away from him and given him hope to have a normal life…being a kid and just having fun and not worrying about being sick at 11 or 7 or 8.” For Ellen, this big picture vantage is the key to her success as a professional cancer fighter. “It’s giving me strength, positivity, and hope. I know that everything’s okay, and I’m going to kick cancer’s ass for sure.”

Who wants seconds? 

When it comes to cancer, no one does. So if you’re a survivor, especially of childhood cancer, here are some tips from the pros at The National Children’s Cancer Society for helping you stay proactive about your health.[5] (Parents of young patients or survivors, these tips are important for you too, as they’ll help you educate your child when they’re older on how to be a strong advocate for their health.)

  • Keep a notebook with details about your care.Add information about your diagnosis: type, date, stage of cancer; any treatments: chemo, radiation, surgeries, and more. (Find a complete list of important medical details here: https://thenccs.org/file/publications/view-from-up-here.pdf)
  • Know your risks for late effects.Things like your diagnosis and how old you were when diagnosed, your gender, treatments and complications, family history, health before cancer, and health after it are all things that affect your risk of late effects. Talk to your doctor about which late effects could affect you down the line.
  • Live a healthy lifestyle.That means eating foods that nourish your body, getting outside regularly (I know, I love gaming too!), and staying connected to the people you like and who like you back, even if that’s a person you pay to listen to you complain, like a therapist.
  • Be smart about booze, butts, and drugs.Alcohol, cigarettes, illegal drug use, and prescription drug abuse all increase your risk for future health problems. It is so not worth it.
  • Make and keep your follow-up appointments.Seriously. It’s a hassle, it’s anxiety provoking, all of it. But these appointments are important and can mean the difference between catching a problem early or being too late.
  • Don’t try to forget that you ever had cancer.Like it or not, cancer is an important part of the long-term story of your health. You don’t have to shout it from the rooftops, but definitely talk to your healthcare providers about it so they can always have your back.

For more helpful tips and info about leading the good life after surviving childhood cancer, visit https://thenccs.org/file/publications/view-from-up-here.pdf.

[1] Susan G. Komen. Breast Cancer. Accessed October 18, 2016. http://ww5.komen.org/BreastCancer/GettingOlder.html.

[2] Stupid Cancer. Manifest: Young Adults Are Different. Accessed October 19, 2016. http://stupidcancer.org/about/manifesto.shtml.

[3] Bonnie Rochman, “A Unit of Their Own: Addressing the Special Needs of Hospitalized Teen Cancer Patients,” Time, May 8, 2013,http://healthland.time.com/2013/05/08/in-seattle-teens-and-young-adults-with-cancer-get-their-own-quarters/.

[4] National Cancer Institute. Adolescents and Young Adults with Cancer. Accessed October 19, 2016. https://www.cancer.gov/types/aya.

[5] The National Children’s Cancer Society. “The view from up here: Your guide to surviving childhood cancer.” Accessed on October 20, 2016. https://thenccs.org/file/publications/view-from-up-here.pdf.