of treatment advances and higher cure
rates, a diagnosis of childhood cancer is devastating for the family.
I became a
"cancer mom" in 1992.
My way of coping was to research the disease and its treatment.
Families want community. Many types of pediatric cancer are rare
and it can be hard to find someone nearby in your situation.
One of the first issues we addressed was parents' access to
information about their child's clinical trial.
Unbeknownst to most physicians, there was an underground
exchange of those full clinical trial documents among parents.
Families want "one-stop shopping" in a public website, so
they can find in-depth information that they can depend
on for accuracy.
Parents would like more research trials that identify late
effects from treatment, then investigate how to test for them,
and treat those that do arise.
One of our goals as parent advocates is to develop mechanisms for
political action. Politics does impact childhood cancer.
Treatment for childhood cancer is one of modern medicine's
miracle stories. Progress has been rapid, because
over 60% of children are in clinical trials (versus 3% of adults).
I strongly encourage families to go to COG institutions which
treat a large number of children and adolescents with cancer.
Looking for causes can make parents feel crazy.
No one knows why your child developed cancer.
There is nothing you could have done to prevent it. It's not
There are just as many ways to get through it as there are
families. Each family figures out what works for them.
It's better not to ask if they need help. Every family with a child who has
cancer needs tremendous help.
Treatment advances are incremental: each clinical trial gives us
a new piece of knowledge.
Survivors of childhood cancer, 250,000 strong and growing, need
to form a powerful constituency to address their needs as a group.
printable cancer survivor's treatment record
is available for your treating institution to fill out, so you
have the necessary medical records for good follow-up.
An Interview with
By Linda Lamb
Treating childhood cancer is one of modern medicine's greatest
success stories. The cure rate for childhood cancer has
jumped from a meager 10% in 1970 to today's overall survival
rate of almost 70%. This has led to a new generation of
young adults: a generation of childhood cancer survivors.
Despite this "good news," a diagnosis of childhood cancer is
devastating for the family. Childhood cancer is treated
aggressively, often with a combination of chemotherapy,
radiation, and surgery, at a time of life when bodies are growing
and developing. Treatment can have a significant long-term impact on
children's physical and psychological health.
Additionally, parents of children with cancer are often young,
have limited incomes, and they may have other children. One parent
often needs to give up a job to take care of child being treated
Treatments can last from one year to several years depending on
diagnosis. The long-term emotional and economic impact on the
family is huge.
In the following interview, Nancy Keene answers questions about
treatments, research, and advocacy for childhood cancer.
Nancy is a well-known writer, speaker, and advocate for patients
and children. Her books on childhood cancer include
Childhood Leukemia (author), Childhood Cancer (co-author),
Childhood Cancer Survivors (co-author), and Childhood Brain
& Spinal Cord Tumors (editor). Nancy has written other health
books and many articles, and is co-creator of the Patient-Centered
Nancy was the first chair of the Children's Cancer
Group Patient Advocacy committee, and then the first chair of the
Children's Oncology Group (consortium of 238 institutions who
care for children with cancer) Patient Advocacy committee. She is
one of the original members of the online support groups
sponsored by the Association of Online Cancer Resources
(www.acor.org), where she refers parents of children with cancer
to resources and provides emotional support.
- How long have you been involved with childhood cancer issues?
- I became a "cancer mom" in 1992 when my three-year old daughter
was diagnosed with high-risk ALL (acute lymphoblastic leukemia).
My way of coping was to research the disease and its treatment. I
became a walking encyclopedia about childhood ALL. Parents and
others in my area started asking me a lot of questions and I
started explaining, in lay terms, the disease and its treatment.
Mid-way through my daughter's treatment, I was encouraged to
write a book for families. At that time, few resources
were available. There were introductory booklets from national
organizations and there was the technical literature, and nothing
in the middle. Since I didn't want the leukemia book to be
autobiographical, I focused on explaining the technical
information in lay language at a high school literacy level. I
incorporated stories from over a hundred parents, children, and
their brothers and sisters, in order to show the variability of
experience. With that many stories, all readers can find
something that helps them in their situation.
- Where did you meet other parents?
- At first, in the institution where I took my daughter for
treatment. But we were lucky to only have two weeks inpatient.
For the rest of her treatment, we commuted to the hospital, 150
miles each way. So, I didn't have much time or opportunity to
connect with other families.
I started a face-to-face support group in my small town for
parents of kids with cancer. We were few in number, and had all
sorts of different diagnoses and different issues. I also
Candlelighters Childhood Cancer Foundation. I avidly
read their quarterly newsletters and started to attend
Then, in 1996, online support groups were created.
I discovered a mailing list about hematological (blood)
cancers on ACOR, the
Association of Cancer Online Resources. The
ACOR Hem-Onc list was one of only a few online lists
for patients and families, at that time.
The growth of that list, and other ACOR lists, was exponential.
More people were discovering and using the Internet. People were
searching for more information about the disease or treatment
options. Also, people wanted community. Many types of cancer are rare,
especially pediatric cancers, and it can be hard to find someone
nearby in your situation.
Those early ACOR groups started splitting into more specialized
groups. In 1997, groups focused on pediatric cancer began breaking
off and forming. The first such group was "Ped-Onc."
There are now approximately 20 pediatric groups, serving over
1,500 families. This is incredible community. About 13,000
children under 20 are diagnosed with cancer every year in the US
and there are over 1,500 families online on ACOR, alone, talking to each other.
Since there are other online discussion groups on other sites, also,
this shows that a significant percentage of childhood cancer families
have connected to help one another.
There are also now three online groups at ACOR for childhood
cancer survivors: one for adolescents, one for adult long-term
survivors of childhood cancer, and one for parents. About six
hundred people are now on those lists.
I spend about an hour a day on the online support groups.
In the beginning, I was primarily sharing experiences and support.
Now, I also steer people to resources appropriate for their situation.
- How did you start doing advocacy on a national level?
- After my daughter's treatment, I began paying attention to what
was going on politically. I met a lot of nurses, doctors, and
parents of children with cancer when I attended national conferences.
In 1997, I published my first book for parents,
Childhood Leukemia. The next year, I was
working with Honna Janes-Hodder on a book for solid-tumor
childhood cancers and beginning work (with nurse/experts
Wendy Hobbie and Kathy Ruccione) on a book for childhood cancer
survivors. During those years, I talked with hundreds of families
on the phone, in person, and online.
Archie Bleyer MD from MD Anderson, asked me to be one of the first
three parent advocates for the Children's Cancer Group, the
largest of the four national groups that developed clinical trials for
children with cancer. As parent advocates, we tried to function as a
bridge between the professional community-doctors, nurses,
researchers-and families. We polled families on what issues they
thought were most important. We did that polling through our personal
contacts, through 300 Candlelighters Childhood Cancer Foundation
face-to-face local support groups, and online through ACOR
groups. The patient advocacy committee would prioritize the
list of issues that other parents raised and work on two or three
issues at a time, to try to bring about improvement.
Two years ago several childhood cancer groups (the Children's
Cancer Group, the Pediatric Oncology Group, the Intergroup
Rhabdomysarcoma Study Group and the National Wilms' Tumor Study
Group) merged into one organization called
Children's Oncology Group, or COG.
The new chair of COG, Greg Reamon, asked our parent committee to transfer
over to COG. Since then, we've added new members to the committee,
but have continued to act in the same way: polling many parents
and prioritizing the issues they want to see us address.
I also started working with Candlelighters on survivorship
issues-answering individual questions, helping with referrals for
second opinions, and educating parents about political
issues. Kevin Offinger MD and I write a column about late effects of
childhood cancer for the Candlelighters quarterly newsletter. The
newsletter goes out to 13,000 people, many of whom are survivors.
Recently, I edited the Patient-Centered Guides book,
Childhood Brain & Spinal Cord Tumors.
I'm very happy that we now have educational materials
for all childhood cancers.
- What kind of issues do parent advocates address, in the field of
childhood cancer? What new points of view can advocates bring to the
- Patient advocates are now in many organizations and federal
agencies. The NCI has several patient advocates, as does the FDA.
The COG parent advocacy committee works on a small number of
issues related to pediatric clinical trials.
- What are some examples of issues that these committees
- One of the first issues we addressed in COG was parents' access to
information about their child's clinical trial. Each clinical
tral has a document that includes technical information
about the trial: the medical studies from which the hypothesis of
the trial evolved, the trial design, a description of the method
of treatment, etc.
COG did not have a policy about whether to provide the full trial
document to families whose children were enrolled in a clinical
trial. If a parent asked for the document, some institutions
would provide them, many would not.
However, unbeknownst to most physicians, there was an underground
exchange of those documents among parents. If a family was denied
the document, someone else in the US, Australia, or Canada who
had been given the document would send a photocopy to the family.
This secrecy was a real lose-lose situation. If the doctors did
not provide the parents with the document, whether out of fear
that the information was too technical or policies of the
treating institution, the family would lose trust in the doctor.
That trust is crucial when a child is going through long and
arduous treatment; physicians and families need to be close
partners. By getting the information in secret, families also
lose having their doctor as a potential ally. Families have no
one to go to with questions and concerns.
Not all families want this information, but those families who
do should be provided with it. After discussions with the patient
advocacy committee, COG changed its policy.
On the Consent Form for all pediatric trials, there is now a
notification that a copy of the full trial document is provided,
if you request it.
The pediatric advisory committee is currently working on
developing a public website. Families want
"one-stop shopping," so they can find in-depth
information that they can depend on for accuracy. There is
loads of information on the Internet. Some of it is really great
and some of it is full of inaccuracies. I was a member of the
task force that developed a grant proposal for a COG public
website. I hope it is funded, because families really need a
trustworthy website that focuses on childhood cancer.
Increased funding for late effects research is another very
important issue for most families. Parents would like
more trials that identify late effects from treatment, and
that investigate how to test for them and treat those that
do arise. This effort has not yet been very successful.
- In what other ways do you help parents find ways to have their
- One of our goals as parent advocates is to develop mechanisms for
political action. Politics does impact childhood cancer. Trial
design, what research is being conducted, funding levels, FDA
policies, extending rights in employment and insurance for
childhood cancer survivors, etc. are all national questions. We
try to provide accurate information so that parents and survivors
can voice their opinions to their elected representatives if they
For example, the FDA has made many changes in how and when drugs are
tested before they are given to children, which affects
requirements for pharmaceutical companies. We gave parents
information about the issues and provide contact information for
elected officials, for those who wished to call, write, or visit.
- What is the "good news" about childhood cancer, if there is
any? Are more children being cured?
- Treatment for childhood cancer is one of modern medicine's
miracle stories: today three-quarters of children diagnosed with
cancer are cured, while forty years ago most children died. The
reason for that miraculous reversal is that, early on, pediatric
oncologists cooperated in developing clinical trials and were
very effective in enrolling a majority of children in clinical
trials. Over 60 percent of children are enrolled in trials versus 3
percent of adults. Even though pediatric cancers are rare, that
rate of enrollment means that there are enough children in trials
to rapidly learn about effective treatments. Development of
treatments has been rapid and successful.
We are now in the enviable position of modifying treatment
for some cancers to decrease the late effects that sometimes
develop after treatment. Until this point, research has been
focused on cure. Now, researchers
are expanding that focus: maintain the cure rates, decrease
toxicity, and identify and treat the late effects that are
unavoidable. There are an estimated 250,000 survivors of
childhood cancer now and this group is growing every year.
Survivors are going to live for decades, and helping them with
late effects is a very important medical endeavor.
- What kinds of cancers do children get?
- Scientists discuss childhood cancers as "liquids" and "solids." About
one-third of childhood cancers are "liquid" - leukemias or
lymphomas affecting the blood or lymph fluid. One-third are
solid tumors of the brain or spinal cord. The remaining one-third are
solid tumors in other locations, such as the eye, bone, liver,
kidney, or symphathetic nervous system.
- You spoke of a 70% cure rate. What factors influence prognosis?
Some types of childhood cancer have survival rates
over 90%. For a few cancers, the survival rate is less than 5%.
Survival rates for most other childhood cancers are in between
There are many factors that impact prognosis in children's
cancers. For example, a child's age at diagnosis can make an
appreciable difference. The type of cancer, if it has spread,
where it has spread, the grade of the tumor, the location of a
tumor, and many other factors impact prognosis.
Prognosis is truly individual. Parents need to keep asking
questions of their doctor until they understand the type of
cancer, treatments, and what their options are.
- Where are childhood cancers treated?
- Most children with cancer are treated at one of the
238 institutional members of
COG in the US, Canada, and Australia.
Parents of newly diagnosed children can either choose standard treatment
(which is the best known treatment) or a clinical trial (if available)
which tests that standard treatment against a treatment which may
prove to be either more effective or less toxic.
I strongly encourage families to go to COG institutions that
treat a large number of children with cancer. This may be
particularly important for adolescents and children with
specialized treatment needs.
Historically, many adolescents were sent to adult facilities and have
been underrepresented at COG institutions. There are studies that
show that adolescents treated at adult facilities have lower cure
rates. Adult facilities usually don't have the staff or expertise
to address the unique needs of adolescents with cancer.
If a child's cancer is a common type with a well-established
treatment regime, such as average-risk ALL, a parent would be
given the same options for treatment at any COG institution. If you
have a child with a rare tumor or one that requires specialized
treatment, do some research on where the best place to treat it.
Some institutions also have more experience in certain cancers.
If your child has a brain tumor, it's probably best to go to a
neurosurgeon who has done dozens of similar surgeries rather
than to a neurosurgeon who has done one or two.
If your child needs a stem cell transplant, for example, different
institutions vary considerably in their experience. Some
institutions have been doing transplants for twenty years and
some just started offering this treatment.
Institutions may differ in the types of transplants offered, in the
services provided, and in methods used in infection control, such
as isolating the child; having visitors wear gowns, masks,
and booties; or having visitors simply wash their hands.
Just because a method is more stringent does not
necessarily mean it's better, as parents might assume. Some
methods are used out of habit, not because they have
been scientifically tested and found to be better than other
methods. If someone told me my child needed a bone marrow
transplant and needed to be isolated for weeks, I would
research whether or not there was any medical evidence to support
- We hear that cancer treatments for adults are getting "easier"
with better control of nausea and more targeted treatments. Is
this the same case for children's cancer?
- Yes. There are really effective anti-nausea drugs.
In my experience, more children seem to be given the really good
anti-nausea drugs (Zofran, Kytril) than adults. With some insurers,
adults are given a cheap and less effective anti-nausea drug, first.
Only if they have problems and complain strongly or ask for
different drugs, do they get the newer, more expensive, but more
effective anti-nausea medications.
In the last ten years, there has also been a big improvement in
sedation for painful procedures. Many institutions have
recognized the importance of having child-life specialists to
help cope with trauma of treatment. Appropriate interventions are
more widely used and children are undergoing less trauma, which
results in a better psychological outcome for survivors. As
recently as ten years ago, several adults would pin children down
while they had bone marrow aspirations or spinal taps. Now, most
institutions give a short-acting sedative, and the children wake
up in ten minutes with no memory of the procedure and no pain.
There is also a tremendous amount of research on targeted therapies.
Gleevec, the drug which recently was approved by the FDA for
chronic myeloid leukemia (CML), is being tested on some childhood
brain tumors. Monoclonal antibodies hold much promise. We all
hope that some of them will work, so that future treatments for
children will not be as toxic and lengthy as the treatments of
- Are childhood cancer rates increasing? How sure are we of the rates?
- I'm not sure, because there is not a national database that
tracks every child who is diagnosed with cancer. The federal
government developed the
where some geographical areas track all cancer diagnoses.
- Is environmental contamination linked with childhood cancer?
- I personally believe that environmental pollutants may contribute
to some types of childhood cancer. However, it is notoriously hard to
prove that a cancer cluster exists because so few children get
childhood cancer. It is almost impossible to obtain statistical
significance because of the small numbers of children who develop
An exception was in the Woburn, MA case described in the book and movie,
A Civil Action. In that town, a large number of families drank from
a polluted water source; the Harvard Public Health Service did an
exhaustive study that concluded that the specific pollutants in
that water contributed to childhood cancers.
Another well-publicized area is Port St. Lucie, FL, where many
more children than expected have been developing brain tumors and
neuroblastomas. Another in Toms River, NJ, has
received a lot of publicity.
The problem is that there are probably multiple contributors to the
development of childhood cancer. For example,
for children diagnosed with acute lymphoblastic leukemia (ALL),
the highest incidence is between the ages of two and four. No one
knows why. Are children that age more susceptible? As another
example, children from more affluent backgrounds, who don't
attend daycare, have a higher rate of leukemia.
Some researchers believe that viruses may contribute to the
development of some types of childhood cancer.
It's natural for parents to feel very guilty and upset, after a
diagnosis of childhood cancer. But looking for causes can drive
make parents feel crazy.
For families, it is important to remember:
No one knows why your child developed cancer.
There is nothing you could have done to prevent it. It is not your fault.
If we knew what caused childhood cancer, we would do what we could
to prevent it. But, we don't have that luxury yet.
- Childhood cancer has got to be a devastating diagnosis. How
does this affect families?
- It is devastating to every member of the family.
Financially, families take a tremendous hit, even if they are
well insured. There is travel, lodging, tutoring, extra services
like occupational and physical therapy, and time off from work.
The illness can send some families that were just barely making
it into financial ruin.
Spiritually, families can have a crisis of faith, although others
find that their faith helps them.
The family unit has to be reorganized. If it is a two-parent
family, one parent stays at the hospital. Often, one parent quits
Siblings get shuttled around and have problems. They are worried,
resentful, and feel abandoned.
The child with cancer goes through a big trauma, physically and
emotionally. Sometimes treatments take many months or years. If
the child relapses, treatment can be for many years. Children
are out of school for lengthy periods, missing both their
education and friends. For many cancers, treatments can
affect how children learn, in the short-
or long-term. Some children have limbs amputated. Some have
surgeries that affect their function.
Childhood cancer affects parents forever. If your child dies,
you deal with difficult and long-lasting grief. If your child
lives, your life is also fundamentally changed.
If you are one of the lucky ones whose
child has no late effects, the changes can be positive ones. For
example, some parents make career changes or put more emphasis on
what is really important to them. If you are the parent of a
child who has mild, moderate or severe physical or emotional late
effects, you spend rest of your life dealing with those.
- That sounds overwhelming. How do families get through it?
- Different people find different ways. I often use a jungle
metaphor: we are all walking through same jungle, but we find
Whatever path parents choose, so long as it doesn't endanger them or
their child, is fine. Some choose knowledge; they learn all about
the cancer, ask questions, and partner with their doctor in
decision-making. Some want to get basic information and make a
decision; then they want to trust the doctor and work on healing
in other ways. Some want to know only the minimum necessary to
sign the consent form and then find support in other ways, such
as a support group, a church/synagogue/mosque, online support
group, or weekend camps sponsored by cancer communities for families
Still others want to identify needs and work to make improvements,
so they become advocates. Some people help
others, in an online group, at a hospital, or start a local
support group. Some fundraise for research. Some people who have
never before exercised, are running marathons to raise money for
There are just as many ways to get through it as there are
families. Each family figures out what works for them.
- It also sounds like an overwhelming situation for friends and
extended family. First, how do you know what to say?
- It's best to just say, "I'm so sorry."
Then, don't say anything else. You're not going to figure out
the magic words to make it alright. So many things that
people say, backfire. "You're so brave."
"I could never go through that." "God only gives people
what they can handle." These are not helpful things for families
to hear. It's usually better to just say "I'm sorry" and
give a big hug.
Then, listen. Take your cue from the family. Whether or not they want
to talk about the illness today will vary. If they don't
want to talk about it today, it's okay to talk about something
- How can friends really help the family?
- It's better not to ask if they need help.
Every family with a child who has cancer needs tremendous assistance.
Household help is always needed: walk the dog, do the laundry,
make dinner, ferry the siblings around. Financial
support can be crucial, whether for treatment or car repairs.
Emotional support is always welcome.
It is often hard for families to ask for help. It is even harder to
supply friends with a list of things they need.
Offer to do something specific that you're comfortable doing, such as:
"The PTA is going to make meals to bring by your house. What is
the best time to drop them off?"
"Can your older child come to our house each Friday night for
dinner and a kid's movie?"
"I walk my dog two times a day. Since you're right down the
block from me, I would like to stop by your house,
morning and evening, to pick up your dog for walks."
- What about support organizations? Who do families turn to, and
what can they do?
- There are a lot of support organizations.
Candlelighters Childhood Cancer Foundation
is for any type of cancer. They provide education and support for
parents and survivors, and also do national advocacy and awareness work.
The Leukemia & Lymphoma Society
is for families of children with childhood leukemia and lymphoma.
They provide basic educational materials, including a new
Return to School program, and raise money for research.
Other organizations have specific support functions.
CHAI in New York provides services for Orthodox Jewish families.
Ronald McDonald Houses provide a free place to stay and
community for newly diagnosed families.
There are several ways to find local support groups.
Candlelighters has a network of 300
local support groups across the country. Leukemia and Lymphoma
Society sponsors local support groups. Many Social Service
departments at institutions also have support groups.
For online support, go to ACOR at
These are just a few of the many organizations that provide
support for families. Extensive lists of resources for parents of
children with leukemia can be found at
For solid-tumor cancers, see
- What treatment advances are being followed up on?
- Treatment advances are incremental: each clinical trial gives us
a new piece of knowledge. Right now, trials are looking at issues
that affect cure rates, quality of life on treatment, and late
effects from treatment. Sample issues:
Timing of drugs. (For example, are there better results from
giving a larger dose each three weeks or smaller doses every
Amount of drug. (Can we give a smaller amount of a drug and
still get the same high cure rate?)
Whether old treatment methods can be modified to reduce late
effects. For instance, trials evaluated whether or not cranial
radiation was needed to cure most children with leukemia.
(Cranial radiation used to be common, now it is used only
in a few high-risk cases; it is very neuro-toxic to children.)
When my friend Dan Fiduccia was treated for Wilms tumor, 40 years ago, the
extensive treatment included 9000 rads of radiation to his
abdomen. He died last year from late effects of that treatment.
If a child is diagnosed today with stage 1 Wilms, the child might have
the tumor removed and three months of mild chemotherapy. The child
would have no radiation and probably no late effects. There have been
tremendous advances in treatments over the last several decades.
Biological, genetic and metabolic research is exploding. We all
hope these new approaches will dramatically improve cures while
- What other major issues do you see that need more research
- Survivors of childhood cancer need to form a powerful
constituency to address their needs as a group. They can work for
more research into preventing and treating late effects. They can
also advocate for legislation that will help protect them from
insurance and employment discrimination and that will increase
education for primary care providers across the continent who
will be caring for more and more survivors.
A number of factors result in few survivors getting
state-of-the-art care for their late effects.
Right now, there is no information about childhood cancer
survivors in medical textbooks used in US medical schools.
There are very few CME (continuing medical education)
programs to educate pediatricians and internists about late
There is no centralized database of information where
survivors or their healthcare providers can educate themselves.
There are not enough comprehensive follow-up clinics staffed by
experts to care for survivors.
I would like to see childhood cancer survivors, healthcare
providers, and treating institutions work together to
help survivors make the most of the lives that they fought so
hard to win.
- What do you say to people who don't want to hear that
survivors might have problems? What might survivors gain by
knowing that problems are a possibility?
- My image for this problem is a great, huge brick wall. The wall
is the barrier to getting good follow-up for survivors. I'll
describe some of the bricks in the wall (and there are many!).
One of the bricks is that survivors often feel the only
emotion they should express is gratitude. They are so often told,
"You are so lucky to be alive." And they are. They are grateful.
At the same time, they also have a other feelings and some
problems. Survivors need to be able to say, "I'm grateful to be
alive and I need some help with X."
Another brick is that survivors don't have good
information about own medical history. In the recent JAMA article
Childhood Cancer Survivors' Knowledge About Their Past
Diagnosis and Treatment: Childhood Cancer Survivor Study in the
April 10, 2002 issue, the majority of survivors had no
written summary of treatment. 9% didn't even know what disease
they had when they were children; another 19% had some accurate
information, but could not tell the precise diagnosis.
If people don't know what the disease was or what the treatment was,
they cannot give good medical histories to any doctor and
cannot get good care. Survivors need a written summary of their
disease that includes drugs used, amount of each drug, location
and amount of radiation, and what follow-up is
necessary. Treating institutions should provide this summary to
Another brick in the wall is staying with the same oncologist who
provided treatment for the cancer. It is sometimes difficult
for a doctor who cures a child and cares about that child, to
deal with any late effects caused by treatment.
Also, front-line oncologists are
very busy keeping up with advances in treatment; it is hard to
also keep up with the growing knowledge of late effects. It is
better for survivors to go to someone who is an expert in
A further brick in the wall that prevents good medical care
for childhood cancer survivors is insurance. A lot of follow-up is
not covered. This is extremely short-sighted. It is far easier
and cheaper to treat survivors early rather than later when a
late effect becomes expensive or life-threatening.
For example, I know people at risk for
heart damage from anthrocyclines who can't get echocardiograms.
Also, about one-third of girls/adolescents who received chest
irradiation as a treatment for Hodgkin's disease get breast cancer
before the age of 40. Because childhood cancer survivors are
not on the list of those who can get mammograms outside the
standard age guidelines, they sometimes can't get these crucial tests
I am hopeful that we can start addressing some of these barriers,
sooner rather than later.