A
Childhood Cancer Survivor’s Battle With Breast Cancer
By Melanie Robins, The Seany Foundation
“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.
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