Resources and information for parents of children with cancer . . . by parents of children with cancer.

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Signs of Childhood Cancer

Continued, unexplained weight loss
Headaches, often with early morning vomiting
Increased swelling or persistent pain in bones, joints, back, or legs
Lump or mass, especially in the abdomen, neck, chest, pelvis, or armpits
Development of excessive bruising, bleeding, or rash
Constant infections
A
whitish color behind the pupil
Nausea which persists or vomiting without nausea
Constant tiredness or noticeable paleness
Eye or vision changes which occur suddenly and persist
Recurrent or persistent fevers of unknown origin

Childhood cancer is rare. It is unlikely that your child will develop cancer. Still, as a parent, you need to be aware of the symptoms of childhood cancer.

Observe your child for any sudden, persistent changes in health or behavior as listed above. Since most of the symptoms of cancer can also be attributed to benign conditions, the diagnosis of cancer can be a long process. You must trust your own instinct and work as a team with your doctor, using your knowledge of your child and your doctor's knowledge of medicine to protect your child's health.


Chances are that your child will not get cancer: the odds of your child developing cancer by the age of 19 is approximately 1 in 330. But, cancer is second only to accidents as a cause of death in children.

And, just as you put your child in a car seat or a seat belt each time you get into the car, just as you teach your child to play safely, just as you watch your young child constantly so that he or she does not get hurt, so you also need to watch for signs of childhood cancer.

This web page was written by the parents of the "1 in 330". We hope that what we learned going through the diagnoses of our children will help other parents of children with cancer obtain prompt treatment. Childhood cancers progress rapidly. A quick diagnosis greatly enhances the chance that the child will survive cancer to live a long life. Treated properly, the majority of children diagnosed with cancer are cured.

As a parent, you need to be aware of the symptoms of childhood cancer. Your pediatrician is probably a very good doctor, but pediatricians are busy, they do not know your child as well as you do, and they may never have diagnosed childhood cancer. You need to know to trust your own intuition when you feel that there is really something wrong with your child, even if the doctor initially interprets the symptoms as a common child ailment. Your doctor may be right, but you need to make sure that certain tests are performed to rule out cancer.

Leukemia

Leukemia is a cancer of the bone marrow, the spongy center of the bones that makes blood cells. It accounts for approximately 35% of all childhood cancers; approximately 1 in 1000 children will be diagnosed with leukemia by the age of 19, although it is more common in children under the age of 10. In leukemia, abnormal white blood cells divide out of control and crowd out the normal cells in the bloodstream. The abnormal white blood cells are not mature, and therefore cannot carry out their infection-fighting function in the blood. These cells crowd out healthy white blood cells, as well as the red blood cells which carry oxygen to the body and the platelets which cause the blood to clot.

Leukemia is treated by combination chemotherapy and sometimes radiation. The five year survival rate for children diagnosed with leukemia and subsequently treated is approximately 70%.

Signs and Symptoms

A child in the early stages of leukemia may show some or all of the symptoms above. These same symptoms are also attributed to the common flu; this fact makes diagnosis extremely difficult. Each parent of a child with leukemia has a different story of how the child was diagnosed. But, most parents remember that their child was more tired than usual in the weeks before diagnosis. A child with leukemia may seem to be struggling to keep up their typical activity level or they may not have the energy to do even their favorite activities. Many parents report that their leukemic child had an infection or the flu that would not go away. Looking back, they realize that the child had some of the other symptoms mentioned above as well. Many parents report that they had a feeling that there was "something wrong" with their child: they knew that something was not right but they could not pinpoint what it was.

What To Do

Take your child to the doctor. The doctor should:

The blood test is crucial to the diagnosis. A blood test is relatively inexpensive, and you should insist on one if you have read the above list of symptoms and feel that your child could possibly have leukemia. If your primary care physician will not order a blood test, go to another doctor. Do not wait: leukemia progresses quickly and must be treated promptly.

A child with leukemia will most likely show a blood test with:

Keep in mind that about 10% of the patients with leukemia will show a normal blood test at the time of diagnosis. To confirm that the disease is leukemia, a bone marrow test must be done.

Neuroblastoma

Neuroblastoma is a cancer of the sympathetic nervous system. It accounts for 5%-7% of all childhood malignancies; about 1 in 6000 children will be diagnosed with neuroblastoma by the age of five. Neuroblastoma is a solid, malignant tumor which manifests as a lump or mass in the abdomen or around the spinal cord. Treatment will be determined by many factors, including the stage of the disease at diagnosis and your child's age. Neuroblastoma is often present at birth, but is most often diagnosed much later when the child begins to show symptoms of the disease. The average age at diagnosis is two. About 25% of newly diagnosed neuroblastomas are found in children under the age of one. This age group has the best prognosis, with cure rates as high as 90%. It is not yet known why children under the age of one do so much better.

Signs and Symptoms

Most malignant solid tumors, such as neuroblastoma, produce swelling or pain. The symptoms of neuroblastoma vary because the location of the tumor determines the symptoms that are noticed by the parents. Most neuroblastomas are found in the abdomen. Parents may feel a lump or mass while dressing or bathing their child. A tumor in the abdomen may cause the child to feel "full", experience stomach pain, loss of appetite, constipation and difficulty urinating. Other primary sites can include the head/neck or chest. Tumors located in the head and neck may present as a mass. The child may have "black eyes", much like bruises, an eyelid that droops, or a pupil that doesn't constrict properly. Chest tumors may cause pain, difficulty breathing, or a persistent cough. Tumors that grow in spinal areas may cause the child to have pain, numbness of the lower extremities, constipation and difficulty urinating.

Symptoms sometimes appear with less specific characteristics such as weight loss, fever, or other vague feelings of ill health, and therefore any unusual signs or symptoms for which there are no apparent causes should be investigated.

I can tell you what happened in my daughter's case. When she was 16 months old, she had loss of appetite, vomiting often, stumbling. Within few days she stopped walking, standing, sitting all together. Her eyes started to move involuntarily (Opsoclonus) and she had tremors (Myoclonus). She even had tough time keeping her head straight up. (Ed. note: this comment was contributed by a parent who visited this page.)

In the majority of cases, neuroblastoma has already spread to area's outside of the original site at the time of diagnosis. This can sometimes cause symptoms such as bone pain, fever, irritability, sweating and high blood pressure.

What To Do

Take your child to the doctor. The doctor should:

Neuroblastoma almost always produces certain chemicals which are excreted in the urine. These chemicals are normally found in urine, but are found in higher levels in 95% of the children diagnosed with this disease. A simple 24 hour urine collection is done to detect these abnormal levels. if neuroblastoma is suspected, other tests will include x-rays, abdominal ultrasound, CT scans of the head, chest and abdomen, a complete blood count, blood tests of liver and kidney function, mIBG scan, bone scans and bone marrow aspiration.

Wilms Tumor

Wilms tumor is a cancerous tumor on the kidney, although it is totally unrelated to adult kidney cancer. It accounts for 6-7% of childhood cancer cases. It occurs in about 8 in 1 million children under age 14; it is more common in children under age 7. Wilms is best treated when it is found early, before it has spread to other areas of the body. Treatment for Wilms includes surgery, chemotherapy, and possibly radiation, depending on how far the cancer has spread. The 5 year survival rate for children treated for Wilms tumor is approximately 90%.

Signs and Symptoms

Your child may show some or all of the above symptoms. The symptoms are the result of the tumor on the kidney. The lump of the tumor itself can sometimes be felt, but it may not always be detectable. The kidneys are located toward the back of the abdomen and the lump may be growing on the back of the kidneys or toward the inside and it may not be as easily detected. Sometimes these symptoms are attributed to a common kind of stomach flu, and are therefore left untreated by a doctor. One parent reports that her child also had pain in her leg, at the top of her thigh. As a general rule, any time symptoms of nausea, fever, stomach pain, vomiting last longer than several days, it is a cause for concern and you should contact your doctor. Remember that you are the best judge of what is normal for your child. If your child is behaving in a manner that is inconsistent with their normal behavior, showing symptoms that you cannot explain, a fever that will not break with fever medication, or has any persistent symptoms, contact your physician.

What To Do

Take your child to the doctor. The doctor should:

Additional tests may include: blood test (CBC), urine test, x-ray, ultrasound, intravenous pyelogram, and/or CT scan. The blood test, urine test, and x-ray are relatively inexpensive and in most cases are effective at properly diagnosing a Wilms tumor. As is true of many cancers, Wilms tumor is a fast growing cancer. Early diagnosis is your child's best defense. The cost of these tests is worth the time saved.

Brain Cancers

Brain cancers account for 15% of pediatric cancers. The symptoms depend on the location of the tumor. Since the brain controls learning, memory, senses (hearing, visual, smell, taste, touch), emotions, muscles, organs, and blood vessels, the presentation of symptoms varies accordingly. Since young children often do not complain of the symptoms, parents must rely on their own observations of their child to be aware of signs and symptoms.

Brain tumors are treated with surgery, radiation, and chemotherapy. Depending on the type of tumor and the promptness of diagnosis, the 5 year survival rate is 40-80%.

Signs and Symptoms

As with most childhood cancers, the symptoms of brain tumors are diffuse and confusing, and are often initially attributed to viruses, neurological problems, or even emotional problems. Most parents of children diagnosed with brain tumors report variations of the symptoms listed above, symptoms that had no apparent cause and may have lasted for several months before the pediatricians ordered the tests which diagnosed a brain tumor.

Parents of children with brain tumors advise other parents to rely on own "gut feelings". When you feel that your child is not what he used to be, do take the child to the doctor. Persistency of symptoms is also important. While it is appropriate to wait to take your child to the doctor if you observe the above symptoms, if those symptoms persist, go to the doctor. If necessary, insist on the tests listed below, even if the doctor disagrees. On occasion, a child's teacher may notice a change in behavior pattern or performance; take your child's teacher seriously. Opthamologists are sometimes the specialists who correctly diagnose brain tumors, so an eye exam is appropriate when vision problems are apparent.

*If your child is a baby, the only symptom may be a head that is growing too fast. Because an infant skull can grow to accommodate the extra volume (tumor), a baby may present with an enlarged head.

What To Do

Take your child to the doctor. The doctor should listen carefully to your description of your child's behavior and ask you pertinent questions. If symptoms warrant, vision and other tests should be performed. The tumor probably will not be felt. The doctor should order tests.

Both of these tests are expensive, and therefore doctors will likely not order them until they rule out all other possibilities. As a parent, you may need to be quite insistent that they be performed. Any brain tumor will show up on an MRI; the CT scan misses some tumors.

Rhabdomyosarcoma

Rhabdomyosarcoma is a fast-growing, highly malignant soft-tissue sarcoma which arises in undifferentiated striated muscle cells. This type of cancer can occur in a variety of places in the body: the head, neck, and around the eyes; the extremities (shoulders, arms, and legs); in the pelvic region and genitourinary tract; and in the chest and lungs.

Rhabdomyosarcoma accounts for 5-8% of childhood cancers and usually affects children the ages of 2 to 6 and 15 to 19.

A noticeable lump or swelling is present in many cases of rhabdomyosarcoma. Other symptoms depend on the location of the tumor.

Signs and Symptoms

Keep a close eye on your child for small lumps which do not disappear in a week or so, but instead keep growing larger. Especially watch the pelvic region and the arms and legs. Also watch for any changes in the eyes. Rhabdomyosarcoma is a rapidly growing tumor and the sooner treatment begins, the more favorable is the prognosis

What To Do

Take your child to the doctor. If the doctor finds symptoms of a rhabdomyosarcoma, the following tests should be ordered:

A biopsy is a test in which a small piece of the tissue will be removed and studied under a microscope to see if there are any cancer cells. The X-rays, CT scans, and MRI detect internal tumors.

Treatment for rhabdomyosarcoma usually includes surgery to remove the tumor, radiation, and/or chemotherapy. Survival rates depend upon the site and stage of the cancer; current statistics state a 5 year survival rate of 60% overall for this type of cancer.

Lymphomas

Lymphomas are malignant cell infiltrations of the lymphatic system. The lymph system includes the nodes with which many parents are familiar, located in the neck, armpit, and groin. These nodes are only part of the lymph system, as they are connected to each other and to the spleen, thymus, and parts of the tonsils, stomach, and small intestine. Once a malignancy begins in one part of the lymph system, it often spreads throughout the rest of the system before it is detected.

Lymphomas are broadly classified as Hodgkin's and non-Hodgkin's. The two are distinguished by cell type. They share similar symptoms such as painless swelling of the lymph nodes, fever and fatigue. Non-Hodgkin's lymphomas are more common with at least 15 different types. Hodgkin's generally occurs in individuals between 15-40 years of age, while non-Hodgkin's generally occurs in individuals between 30-70 years of age.

Today, Hodgkin's lymphoma is more curable than non-Hodgkin's. The cure rate varies according to the type of disease.

Signs and Symptoms

In most cases of non-Hodgkin's lymphoma, a painless, firm swelling in the neck, the armpit, or the groin lymph nodes is present. Since extranodal sites are often involved, other less specific signs may occur. Gastrointestional tract involvement leads to abdominal pain, jaundice, diarrhea, gastrointestional bleeding, and constipation. If the spleen or liver are involved, they are enlarged. If the bone marrow is involved, neutropenia, fatigue, bleeding or bruising occurs.

What To Do

Take your child to the doctor, who will do a careful examination of your child and order the following tests:

At this point, many children will be found to have some other benign condition. In the majority of cases, the doctors take time to rule out a lot of other things, especially lung diseases and leukemia.

If initial tests confirm that your child may have a lymphoma, the doctor may refer you to a pediatric hematologist/oncologist, who may do a biopsy of any lumps or tumor to confirm what type of lymphoma it is. Also, a bone marrow aspiration may be ordered and CT scans, and possibly other tests as needed in your child's individual situation.

Lymphomas are usually treated by a combination of chemotherapy, radiation, and/or bone marrow transplants. The cure rate varies greatly depending on the type of lymphoma and the progression of the disease.

Retinoblastoma

Retinoblastoma is a malignancy of the retinal cell layer of the eye and is the most common eye tumor in children. It usually occurs before the age of five and can occur in one or in both eyes and is hereditary in some cases. Retinoblastoma accounts for 3-4% of all childhood cancers; about 1 in every 15,000 children will be diagnosed with this cancer.

Signs and Symptoms

The most common symptom is a whitish color behind the pupil, instead of the usual dark color. At well-baby check-ups, the pediatrician routinely checks your child's eyes for this and other symptoms. As a parent, you should watch for the above symptoms between check-ups as well.

If you suspect that the abnormalities listed above are present and not adequately explained by your pediatrician, you should seek an eye examination by an ophthalmologist specializing in pediatric eye disease. If the ophthalmologist detects abnormalities, an examination under anesthesia may be required to further evaluate your child.

Retinoblastoma is treated by surgery, chemotherapy, and radiation. Current statistics state a 80-90% 5 year survival rate.

Bone Cancers

Osteosarcoma and Ewing's sarcoma are the most common malignancies of bone tissues in children. Osteosarcoma, the more common of the two types, usually presents in bones around the knee; Ewing's sarcoma may affect bones of the pelvis, thigh, upper arm, or ribs. Bone cancers are most common in ages 10-20 and they account for about 6% of all childhood cancers.

Signs and Symptoms

Bone pain is the most common symptom. Sometimes a lump can be felt on the bone, or the tumor will interfere with normal movements. What often happens is that a child injures themselves while playing, and the pain persists long after the injury should have healed. So, assuming that a bone is broken, the parents take the child to the doctor for evaluation, at which time X-rays reveal a bone tumor.

What to Do

Take your child to the doctor. The doctor should do a complete examination and order the following tests:

The blood is tested for alkaline phosphatase. A large amount of alkaline phosphatase can be found in the blood when the cells that form bone tissue are very active, as in growing children and adolescents, or when a broken bone is mending, or when bone cancer is present. While this test is not a completely reliable indicator of bone cancer, a positive test indicates further tests are warranted. If the doctor feels that the examination, blood tests, and X-rays indicate bone cancer, he will refer you to an orthopedic oncologist. The oncologist will do a biopsy to look at the cells under a microscopy and may order a CT scan or an MRI. About 25% of bone cancers have spread at diagnosis, usually to the lungs.

Bone cancer is treated by surgery to remove the tumor combined with chemotherapy. The prognosis depends on the location of the tumor and whether or not it has spread; generally a five year survival rate of 70% is given for childhood bone cancers.

Note to Parents

This Web page was written by a group of parents of children with cancer. These parents are now reaching out to other parents to give them the knowledge that they wish they had; the knowledge that would have helped their child. We all once were in the position of: not my child, my child won't get cancer. But it does happen. Many of us went through weeks of trips to the doctor not knowing what was wrong before the diagnosis of cancer was made. In hindsight, we felt we knew all along that something was wrong. Pay attention to your heart. It can happen. If it does, we are there to help you.

Always take your children to their scheduled well baby check-ups. Ask your doctor to explain each step of the examination. During these check-ups you should make sure that a complete abdominal examination, with particular attention to the adrenal glands (near the kidneys) is performed. The doctor should check your child's eyes. He should ask you if you have noticed any usual tiredness, vomiting, bleeding, bruising, or behavior changes. Between medical check-ups any unusual signs or symptoms (nausea, swelling, double vision, stumbling, nosebleeds, drowsiness, listlessness, difficulty in breathing, etc.) for which there are no apparent causes should be investigated.

Note about the signs of childhood cancer card

In the first months after I joined the ped-onc listserve, I was amazed at how many parents had gone back and forth to doctors for weeks/months before their child was finally diagnosed with cancer. I felt strongly that every parent and pediatrician should know the signs of childhood cancer. I searched the web and literature to see if there was a mnemonic, an arrangement of letters to help people remember the signs of childhood cancer. I found one somewhere but it was not widely used, nor was it as descriptive as the one at the beginning of this web page. After writing the long version of the signs of childhood cancer (i.e., this web page) in 1999, I worked on the mnemonic CHILDCANCER that appears at the top of this page. I gave permission to Nancy Keene to include it in the book, "Childhood Cancer, a parent's guide to solid tumors", and also to Gigi (www.goldribbons.com) to use it in conjunction with gold ribbon pins for childhood cancer awareness. Today, I want everyone to spread the word and use the Signs of Childhood Cancer, CHILDCANCER, freely.

Patty Feist 7/2005

General Disclaimer

These pages are intended for informational purposes only and are not intended to render medical advice. The information provided on Ped Onc Resource Center should not be used for diagnosing or treating a health problem or a disease. It is not a substitute for professional care. If you suspect your child has a health problem, you should consult your health care provider.

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