Handbook of Long Term Care of The Childhood Cancer

Survivor

Visit the link below to download the full version of this book:

https://medipdf.com/product/handbook-of-long-term-care-of-the-childhood-cancer-s
urvivor/

Click Download Now

Foreword

A Survivor’s Narrative: Not Just a Survivor, but Always

Surviving

Living in Spain from the ages of 11 to 15 as an Asian Indian girl was the best
part of my life. Through the company Bechtel, my father was offered a won-
derful foreign assignment opportunity to Spain for 4 years. This allowed us to
travel all over, taste, and experience the Spanish culture. In August of 1984,
after a 15-day trip to Italy, my left knee began hurting and persisted until
December. At school, I kept falling and found it strange, as I was not particu-
larly clumsy as a child. After a fall down a flight of stairs, I ended up in the
hospital. An X-ray was done and a doctor from my father’s work was con-
cerned that it may be bone cancer. He immediately wanted us to go to the
Mayo Clinic in the United States for a second opinion. It was there at the age
of 15 where I got the diagnosis of osteogenic sarcoma. What had started as
simple pain just 4 months prior resulted in amputation of my left leg. At that
time, the medical team informed us that I would not need chemotherapy
before and after my amputation because the results of the CT scan had shown
no metastasis.
Before my amputation, my orthopedic surgeon helped me decide to either
amputate or have a stiff knee. He presented the pros and the cons of both
options, and after directing me to a peer amputee mentor, I felt confident that
amputation was the right choice. Following the amputation, the one thing
I struggled with the most was phantom pain. At times I could feel as though
my leg was still there and my toes curled up and dead. Other times, the phan-
tom pain felt as if I was being shocked, causing the sensation of pins and
needles. I remember the orthopedic surgeon, nurses, physical therapist, and
the prosthetist constantly reassuring me that it would eventually go away.
They all reminded me to be patient. I trusted my healthcare team. True enough,
within six months, the intensity of the phantom pains subsided dramatically,
even though to this day, I still experience phantom pains rarely.
Three weeks after surgery I was fitted with prosthesis and began intense
physical therapy to learn how to walk again. In order to be a healthy amputee,
the physical therapist and prosthetist educated me on some important aspects
I needed to incorporate into my life. First was to maintain my weight, as a
loss or gain of five pounds would make a difference in the fitting of my
prosthesis. This would also prevent long-term wear and tear of the knee and

v
vi Foreword

hip in the future. Second was to stretch the muscles and hip joint of my stump
to prevent the formation of contractures. Contractures will limit the ability to
fully extend my leg when walking with the prosthesis. I was also reminded
that excessive hopping on the existing leg—a habit many amputees develop
out of convenience—might result in a hip and/or knee replacement by the age
of 40. Despite the medical team’s advice, I did succumb to the habit of
hopping around the house because it was just easier. With time, I was able to
adapt to the prosthesis.
After two months of being in and out of the Mayo Clinic in Rochester,
I was finally able to return to Spain. As an amputee, the challenge at that time
was how my friends and school staff would receive me. I was excited to see
everyone but was also very scared and worried about being accepted; it was
not something I was prepared for despite all the advanced medical care I had
received. I was not taught how to acclimate as a young teenage amputee.
I learned quickly to use humor to deal with people’s discomfort. Statements
such as “having one leg up on them” or “tripod” would make them laugh.
At this point I learned that humor and openness were the best medicine for
the awkward moments. This attitude not only helped me cope with my ampu-
tation, but I was also able to see how others received me—with supportive
hands and an open heart.
For the first few months after my amputation, I was able to adjust back into
a routine. I still had monthly CT scans to monitor for recurrences and at that
time do not recall suffering from overwhelming anxiety.
Five months after my amputation, I fell down while playing and suffered
from bilateral pneumothoraces. Follow-up imaging confirmed that it was a
relapse of osteogenic sarcoma, which caused my lungs to collapse. We returned
to the Mayo Clinic where chemotherapy and surgical resection of the lung
nodules were planned.
When I heard the word “chemotherapy” initially, I remember being fright-
ened by the visual of another patient I had seen at the Ronald McDonald house
who had no hair and was vomiting profusely. Even at that time, I remember
hoping that I would never have to go through that, so the relapse and its treat-
ment plan had actually turned into my worst nightmare. I did not want to look
like a cancer patient. One month after my relapse and following initial chemo-
therapy, my family moved back to California and resumed my medical care at
Jonathan Jaques Children’s Cancer Center in Long Beach. I remember the
oncologist educating me about the different types of chemotherapies and their
long-term side effects such as infertility, neurocognitive difficulties, kidney
dysfunction, and cardiac issues. At that time, however, I was more focused on
getting through treatment. After 5 months of chemotherapy, the nodules shrunk
enough to be surgically removed from both lungs.
I celebrated my Sweet 16th birthday before my first lung surgery and a month
later I had the second lung surgery. Six months later, I had completed the full
treatment protocol and was told that I was in remission. I was a survivor! Being
a survivor meant that I would still need to be monitored closely for the next
five years, and that I would always be reminded of the potential for recurrence.
Returning to reality was challenging. As a patient living with cancer, I had so
much emotional support, but as a “cancer survivor,” I felt abandoned and alone.
Foreword vii

My life had gone from living in Spain as a teenager, with many friends, to
being home schooled in the United States for what should have been my junior
year. So at 17, returning to high school as a senior was even more challenging.
I was entering a new school, not knowing anyone, with one leg, prosthesis, and
the beginning stages of hair growth. Physically, this played on my insecurities
making assimilation to a new school a continuous struggle. I always worried
about how others would perceive me. Although it was hard at first, I resorted
back to the humor and openness I used while I was in Spain. It worked!!
Slowly, people came around and I was able to make friends. I decided to use
my cancer experience as an opportunity to educate. By allowing people to ask
questions, I noticed that they became more comfortable with my disability and
me. I still carry this attitude with me today and I believe that it has contributed
to the successes I’ve been able to maintain socially.
My senior year culminated with high school graduation and an acceptance
to the California State University, Fullerton. In my “cancer world”, I had also
graduated by being cancer free for a year! It was at this time, I recall feeling
anxiety with each approaching CT scan, fearing relapse with each blood work,
oncology appointment, and CT scan results. For 5 years, I would need a
monthly CT scan the first year, quarterly CT scans in year 2, semi-annual
scans in year 3, and then yearly for the remaining two years.
At the age of 18, I had a year and a half of remission from cancer, a high
school diploma, and one semester of college in my hands when the big “R”
crushed my world—I had relapsed again. This time, there was a small nodule
found in my heart. I would need open-heart surgery, another year of experi-
mental chemotherapy, and stop attending college.
I felt as though my “survivor” medal was stripped from me as my remission
dissipated, shattering my world in the process. I began chemotherapy in
February of 1988, and by the summer, I was depressed, unable to see the light
at the end of the tunnel. I had been battling cancer for three years on and off
and never seemed to get a break. My oncologist realized the emotional diffi-
culties I was suffering from and encouraged me to go back to college in the Fall
to take two general education classes without hindering my chemotherapy
regimen. This was the best remedy as it kept my mind going and helped me
have some control in life. My oncologist taught me that although cancer can
put life on hold, I must not succumb to cancer, but I should learn to move on.
I was determined and it lifted my spirits as I found a new way to cope. It
changed my focus and I was able to concentrate on school instead of “relapse”
and “chemotherapy.” Physically, however, I struggled once again as I lost my
hair for the second time, this time during college. College is the height of
socialization and experimentation, where many meet friends for life, boy-
friends and girlfriends, college parties, dance clubs, experimentation with
drugs, alcohol, and sex. For me, I did not personally engage in these natural
college experimentations, partly because of my Asian culture and my 3-month
oncology check-ups. I remember struggling with the feeling of being ugly.
I had no hair, no eyebrows, no eyelashes, and was wearing a wig, while my
peers came dressed up with make-up, high heels, and beautiful hairstyles.
Adjusting to the college norm was challenging, especially as a cancer patient.
I was embarrassed to wear short skirts because of the difference in color of my
viii Foreword

limbs, and could not wear high-heeled shoes because of my prosthesis. Most
of the time I felt that everyone was looking at my leg and not me. I struggled
with body image and wondered whether men would find me attractive and
desirable despite being legless. Unfortunately, psychotherapy was not neces-
sarily an option for me at that time because being Asian-Indian, emotional
distresses and psychological pathology both carried an associated stigma.
Despite my initial struggles, I was able to create a social support system of
friends who I met in college and knew as a child who were key in helping me
through some of my insecurities.
Fast forward to 20 years later, at age 38, I was a cancer survivor, who
received a master’s degree in social work and my dream job as a pediatric
oncology social worker at CHOC Children’s Hospital in Orange, California.
I was equipped with the hypervigilance that my cancer survivor mode
granted me—any minute physical changes in my body (such as bumps,
marks, blemishes, or any other ailments) triggered the initial thought of “is
it cancer?”
Meanwhile, my gynecologist saw me annually to follow the potential
infertility issues resulting from the chemotherapy I received as a teenager.
I had known fibroids for many years and the gynecologist suggested to have
the fibroids surgically resected from my uterus. A routine myomectomy had
turned into a second cancer diagnosis—ovarian cancer—incidentally found
during the fibroid resection.
The treatment for ovarian cancer involved surgical removal of my uterus
and ovaries, followed by another six months of chemotherapy. This time the
losses were much greater than they were at the age of 15. I went straight into
surgically induced menopause with the inability to ever have children. In
24 h, I went from being a whole woman to feeling like an empty woman with
an empty womb.
While still in the hospital recovering from my two surgeries, I started to
notice that my back was hurting more than usual. Likely a side effect of being
a survivor, but my hypervigilance led me to insist that my doctors order an
MRI of my back. Unfortunately, the results of the MRI showed yet another
tumor—a Schwannoma—beginning to wrap around my spine and needing
immediate surgery to remove the tumor before I could begin chemotherapy.
Psychologically, I struggled with the thought of battling through central
lines, chemotherapy, and hair loss again. Although I had some days where I
coped poorly, somehow, I persevered and my fighting attitude to do this ONE
more time kicked in. Emotionally, however, the thought of not having my own
children was a long-term side effect, which was difficult to overcome. I felt
angered when friends of mine would bring their children to the hospital for me
to play with hoping it would make me feel better or being told “you can be an
auntie to my baby.” It took me about two years after diagnosis and treatment
to finally hold a baby without becoming an emotional wreck.
When I began this cancer journey at 15, I remember my parents constantly
telling me to take ownership of my medical care. As years went by, this sage
advice not only helped me keep up on my medical needs but also take a proac-
tive stance when medical problems arise. Today, I continue to attend long-term
survivorship clinic every year.
Foreword ix

Unfortunately, I have begun to experience many long-term side effects, but

take the appropriate steps to avoid future problems. I am followed by four
specialty doctors in addition to my Primary Care Doctor and my gynecolo-
gist: a cardiologist for possible cardiomyopathy, a gynecology oncologist for
possible ovarian cancer relapse, a breast surgeon due to possible breast cancer
following ovarian cancer, and an endocrinologist.
Being a Cancer Survivor is a hard balance. We have learned to protect the
“ones we love as well as ourselves.” Although we won the battle, the enemy,
at times, is not too far behind us and one must learn to cope with those fears.
The emotional spectrum of a cancer survivor can range from amazement and
accomplishment to that of pure loneliness. We learn that cancer never really
leaves us, but we also learn to become a light of hope for the oncology com-
munity and to others fighting the big “C.”
The moral of this survivorship story is for cancer survivors to know them-
selves, continue to follow up with their physicians and specialists, attend
yearly long-term clinic if available, and most importantly, be active partici-
pants in their medical care to allow for early intervention if needed. At times
I feel it is harder to be a survivor than a patient. One must continuously adapt,
cope, and find the courage within to move forward in life. My definition of a
true “Survivor” is someone who shows a great will to live, with an enormous
determination to overcome difficulties to carry on. Surviving is a constant
battle and survivorship is a lifelong process.
This manuscript covers many of the myriad challenges facing survivors,
but also the medical treatment team, families, and the community. It is impor-
tant for all who work with individuals who have endured through cancer and
its treatment to be ever mindful of the complex interplay of the unique physi-
cal, psychosocial, emotional, cultural, vocational, and financial challenges
that affect one’s journey.
I wanted to thank my cousin Regina Jacob, M.D., for giving me the guid-
ance and support as I embarked on writing my personal story. Thanks for
always reminding me the awesomeness of being a Survivor.
To my parents, Abraham and Leela Areeckal, words can’t express how
lucky and blessed I am to have you as my heroes, you both are amazing. YOU
have taught me how to persevere, continue to love, laugh, fight, and most of
all how to be a SURVIVOR. I love you both with all my heart and soul.

Orange, CA, USA Jenee Areeckal

Preface

We now live in the era of targeted therapies, pharmacogenomics, and molecular

profiling. As science continues to evolve, the biology of cancer is being
unraveled, albeit, slowly. Thanks to modern medicine, today, 80 % of chil-
dren diagnosed with cancer will survive 10 or more years after therapy.
However, the past three decades have also revealed the significant late effects
of therapy that survivors live with. The lessons from past treatments help
guide future treatment as we witnessed the effects of chemotherapy, radia-
tion, and other intensive treatments given to children. Some of these survivors
are now in their 30s and 40s; 60 % of whom experience chronic late effects,
while 30 % have life-threatening conditions.
In our day-to-day experience in caring for survivors, we have been con-
fronted with our own lack of knowledge and understanding as healthcare pro-
viders, the limitations of funding, as well as the lack of an organized system
to transition adult survivors of childhood cancer. We have also seen firsthand
the challenges of educating survivors, for various complex reasons some of
whom seem to struggle with taking the necessary steps to understand their
need for surveillance. Not only are the effects physical, the neurocognitive
and psychosocial ramifications are just as significant.
It is for these reasons that this book is written. We decided to include com-
prehensive and in-depth discussions as well as integrate simple screening
measures and road maps for the busy clinician. The road maps and screening
tools are guidelines to help the clinician navigate a survivor’s complex medi-
cal needs. The recommendations given in this book are the result of many
hours of research and literature review done by brilliant contributing authors.
However, as more research is done, these recommendations will also evolve.
It is our hope that physicians, physicians-in-training, medical students,
psychologists, therapists, and other providers caring for childhood cancer
survivors may benefit from this book.
Finally, to the countless of childhood cancer survivors, we have shared
times of sacred sorrow as you battled cancer, but now, we are privileged to
share so many more sacred moments of joy as you journey through meaningful
cancer survivorship.

Orange, CA, USA Grace A. Mucci

Orange, CA, USA Lilibeth R. Torno

xi
Acknowledgments

When we embarked on this project, we knew that it would require not only
personal sacrifices, but sacrifices of those near and dear to us. It is for this
reason that we would like to acknowledge everyone who has helped us along
this journey.
First, we want to thank our spouses, Levi and Jim, for their unwavering
support throughout this process, from the initial conception to the final prod-
uct. Our children, Joseph, Timothy, and Adam, have all been a source of
blessing and encouragement, and Felicia, Payton, and Sydney have brought
us so much joy. This acknowledgment would not be complete without thank-
ing our parents for their guidance and support throughout our lives, and
though some are not with us here on earth, they live on in our hearts through
precious memories.
Second, our sincere gratitude is extended to our colleagues and friends
who provided moral support and direction during the many phases of this
project. Many professionals, including all contributing authors, have given
much time, effort, and expertise in the creation of this book. We owe special
thanks to Christine Marie Angeles, Edna Klinger, and Irma Padilla for their
invaluable technical knowledge in layout, formatting, and graphics. Finally,
words cannot express the sincere gratitude we feel for Janice Stern and her
staff throughout this process. It is through all of them that we garnered pro-
fessional and personal wisdom that helped to mold this manuscript.
Finally, we owe our deepest gratitude to our patients, who never cease to
inspire us to be the best care providers we can. We are honored to be invited
into their lives and help them through one, if not the, most difficult transition
they face. It is amazing how much we have learned from their resiliency and
tenacity to rise above their illness and become true survivors. While we are
encouraged daily by advances in the medical and behavioral sciences as we
seek a cure for cancer, we garner hope from our faith and our patients and feel
truly blessed.

Grace A. Mucci
Lilibeth R. Torno

xiii
Contents

Part I Surveillance of the Survivor

1 The Long and Winding Road: Transitions in Care

for the Childhood Cancer Survivor ............................................. 3
Rajkumar Venkatramani and David R. Freyer
2 Developmental Considerations in the Transition from Child
and Adolescent to Adult Survivorship......................................... 17
Cynthia A. Gerhardt, Marrit Annika Tuinman,
and Kathryn Vannatta
3 The European Experience of Establishing Guidelines
for Surveillance of the Childhood Cancer Survivor .................. 25
Roderick Skinner, Riccardo Haupt, Lars Hjorth,
Leontien Kremer, and Renée L. Mulder

Part II Surveillance of Medical Late Effects

4 Long-Term Follow-Up Roadmaps by Disease

and Treatment ............................................................................... 39
Lilibeth R. Torno and Janet Hager
5 Central Nervous System ............................................................... 53
Wei-Ping Violet Shen
6 Endocrine System.......................................................................... 75
Wassim Chemaitilly
7 Cardiovascular System ................................................................. 93
Nita Doshi, Vivian I. Franco, Anthony C. Chang,
and Steven E. Lipshultz
8 Pulmonary System ........................................................................ 111
Tara O. Henderson
9 Renal, Genitourinary, and Reproductive Systems ..................... 121
William Sohn, F. Elena Marshall, Krishnansu S. Tewari,
and Antoine Khoury

xv
xvi Contents

10 Gastrointestinal and Hepatic Systems......................................... 145

Jacqueline Casillas and Amy Jacobson
11 Musculoskeletal System ................................................................ 155
Tao Ji, James B. Hayden, and Bang H. Hoang
12 Eye, Ear and Oral Health ............................................................. 171
Jacqueline Casillas and Amy Jacobson
13 Hematopoietic Stem Cell Transplant .......................................... 179
Paul Nathan, Adam Gassas, and Jonathan Wasserman
14 Second Malignant Neoplasms ...................................................... 209
Smita Bhatia

Part III Neuropsychological Late Effects

15 Neuropsychological Outcomes in Children with Acute

Lymphoblastic Leukemia ............................................................. 223
Peter A. Dodzik and Randy Fulton
16 Neuropsychological Effects of Pediatric Brain Tumors
and Associated Treatment ............................................................ 249
Karin S. Walsh and Iris Paltin

Part IV Psychosocial Factors and Quality of Life

17 Psychological Challenges and Adaptation in Long-Term

Survivors of Childhood Cancer ................................................... 265
Christopher J. Recklitis and Cori Liptak
18 Resiliency in Childhood Cancer Survivors:
A Clinician’s Perspective .............................................................. 283
Frances Wollman Baumgarten
19 Cultural and Linguistic Issues in the Assessment
and Treatment of Pediatric Cancer Survivors ........................... 299
Christina M. Zebrowski, Mairim Vega, and Antolin M. Llorente
20 Quality of Life During Palliative Care ........................................ 315
Gay Walker

Part V Re-Entry After Treatment

21 Lifestyle Factors and Health Risk Behaviors ............................. 325

Vida L. Tyc and James L. Klosky
22 School Issues and Educational Strategies
for Survivors of Childhood Cancer ............................................. 347
Kathryn M. Kirkpatrick
23 Special Education Laws................................................................ 367
Michael E. Jewell
Contents xvii

24 Career and Vocational Outlook ................................................... 373

Sujin Ann-Yi and Martha A. Askins
25 Rehabilitation Consideration in Pediatric
Cancer Survivors........................................................................... 385
Lauren S. Krivitzky, Megan M. Blaufuss,
and Sara VanDenHeuvel
26 Neurocognitive Late Effects in Children Treated
for Cancer: Psychological Impact, Identification,
and Prevention and Remediation ................................................ 397
Martha A. Askins, Sujin Ann-Yi, and Bartlett D. Moore III
27 Psychopharmacologic Interventions in Childhood
Cancer Survivors........................................................................... 411
Anna C. Muriel
28 The Cancer Survivor and Complementary
Health Approaches ........................................................................ 419
Jinsoon Lee, Grace A. Mucci, Lonnie K. Zeltzer,
and Nicole Vincent
29 Barriers and Disparities in Accessing Quality Care Amongst
Childhood Cancer Survivors ....................................................... 467
(Michael) Jacob Adams, Katie A. Devine, and Amina P. Alio
30 Educating and Preparing the Childhood Cancer
Survivor for Long-Term Care: A Curriculum Model
for Cancer Centers ........................................................................ 487
Lilibeth R. Torno, Jenee Areeckal, Claudia E. Begino,
Christy Campo, Marcos Di Pinto, Mary English, Janet Hager,
Heather Hawthorne, Carol Lin, Ruth McCarty, Jennifer Phan,
Angela Salazar, and Nadia Torres-Eaton

Part VI Appendix

31 Appendix: Resources .................................................................... 509

Beth Earhart

Index ....................................................................................................... 527