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Living with Childhood Cancer

Introduction

Cleveland_Clinic_Host: Unlike 50 years ago, the chance of surviving childhood cancer today is better than ever. In the United States in 2007, approximately 12,500 children under the age of 18 were diagnosed with cancer yet nearly 80% of them will survive. Despite these improvements, cancer is still the leading cause of death by disease among American children between 1 to 14 years of age. Fortunately, cancer is relatively rare in childhood, with 1 to 2 children diagnosed for every 10,000 children in the United States.

Our goal at Cleveland Clinic Children's Hospital is to maximize the potential for cure and to ease the burdens of stress on patients and families undergoing therapy. Because of the highly specialized nature of cancer therapy, it is crucial for children to receive treatment from Pediatric Oncologists and that the facility is a member of the Children's Oncology Group — the national organization designing therapy for pediatric cancers — like we are. This is true whether the child is 2 months old or 19 years old. This way, a child will have access to the latest therapies, including clinical trials designed for their unique needs.

We care for a large number of children with blood disorders including sickle cell disease, bone marrow failure syndromes and bleeding disorders. Parents of children with sickle cell disease and other lifelong blood disorders place extraordinary value on a team approach family-centered care. Families require a huge amount of support when a child is faced with chronic illness and it's important that they feel well equipped to handle the journey through diagnosis, treatment, and outcome.

Margaret Thompson, MD, PhD is a board certified pediatric oncologist who did her fellowship at St. Jude Children's Hospital before coming to Cleveland Clinic Children's Hospital. She specializes in childhood cancer, Hodgkin’s lymphoma, and other general clinical hematology and oncology disorders. Dr. Thompson is part of our team of pediatric oncologists who provide comprehensive, compassionate diagnosis and care for children and young adults that is unparalleled in the region. Around Cleveland we have developed pediatric hematology outreach clinics at Hillcrest Hospital, Fairview Hospital, and Lorain Family Health Center. Our dedicated cancer researchers work toward the development of cutting-edge treatments to ensure continued state-of-the-art care.

To make an appointment with Dr. Margaret Thompson, or any of the other specialists in our Pediatric and Adolescent Cancer & Blood Diseases Department at Cleveland Clinic, please call 216.445.5517 or call toll-free at 800.223.2273, ext. 55517.  You can also visit us online at clevelandclinic.org/kids

Welcome to our Online Health Chat with Margaret Thompson, M.D., Ph.D. We are thrilled to have Dr. Thompson here today for this chat. She is considered an expert in the field of childhood cancer. Let’s begin with some general questions.


Childhood Cancer

Ksmith: What are the most common types of childhood cancers?

Speaker_-_Dr__Margaret_Thompson: Approximately 1/3 of all cancer in children under 15 years is leukemia with about 4/5ths of those children having acute lymphoblastic leukemia and about 1/5th having acute mono-myelogenous leukemia. About 10% of cancer in children less than 15 years is some type of lymphoma although the prevalence of lymphoma varies with age with lymphoma being more common in older kids.

About 20% of pediatric cancers are brain tumors again varying by age with the highest percentage being in kids age 5-9. Other cancers that might fall into a group called solid tumors vary quite a bit by age. Some cancers such as Wilm’s tumor which is a tumor that can occur in the kidneys is seen almost exclusively in kids under age 5 while osteosarcoma which is a type of bone cancer is seen primarily in kids as they enter puberty. But it is very important to keep in mind that in general cancer is rare in children.

Ez7700: What are the warning signs that the doctor would look for that indicate some type of cancer in a child? What could I, as a parent, watch out for?

Speaker_-_Dr__Margaret_Thompson: The vast majority of cancers in children are felt to be sporadic - meaning they occur in individuals without a family history of that cancer. So a general history of adult cancer in the family does not necessarily increase a child’s risk of getting a childhood cancer. There are, however, a few specific examples of inherited predisposition syndromes for childhood cancers.

If you or your husband has a history of retinoblastoma, there is an increased risk of retinoblastoma in your children. If there is a history of adult cancers being diagnosed in young adults in the family, particularly a group of cancers called sarcomas, the family may carry a syndrome called Li-Fraumeni syndrome and your child would be at increased risk for several cancers. There is a form of Wilm’s tumor which is a type of kidney cancer seen in young children that can be familial. Certainly family history of colon cancer associated with familial adenomatous polyposis coli would put your child at risk for colon cancer.

That said, there is still a lot we don’t know about cancer and as more research is done, additional predisposition syndromes may be identified.

Start4500: If there is a history of cancer in my or my husband's family, does that increase my child’s risk of getting cancer, as a child?

Speaker_-_Dr__Margaret_Thompson: This is a tricky question because there is really no set of warning signs to be looked for. In pediatrics, most things get better on their own. So if your child has a symptom that just persists despite conservative treatment, then cancer should be considered although not necessarily high on the list of possibilities.

For example if you child has a cough that just won’t go away for weeks despite being seen by his or her pediatrician, then maybe a chest x-ray would be helpful. If your child has a big new lump on his or her bone and there was no injury and it gets bigger and does not go away for a few weeks, then you might have your child see his or her doctor. If your child has persistent recurrent fevers and is clearly not just getting a new cold every other week, then it might be good for him/her to see the pediatrician.

A persistent cough or a big bump or a fever does NOT mean your child has cancer, it just means something is not going away that normally would and so further evaluation would be helpful. This is why having a primary care physician for your child is so important. If there is something concerning, then your child’s doctor can check it out and if it does not resolve, he or she can follow up. Remember cancer is rare in children.

heather: What is the most frequent type of tumor seen in the adolescent population?

Speaker_-_Dr__Margaret_Thompson: In adolescents age 15-19, 25% of cancers will be lymphoma with the most common being Hodgkin’s. Another 12% of cancers will be acute leukemia with most being acute lymphoblastic leukemia, 10% will be brain tumors. Almost 8% will be bone cancer with over half being osteosarcoma. 8% of cancers in this population will be solid tissue sarcomas. 14% will be germ cell tumors with most being gonadal tumors. 21% will fall into the group of cancers called carcinomas with 7% being thyroid cancer.

In kids age 10-14, 22% of cancer will be leukemia with most being acute lymphoblastic leukemia. 21% of cancer will be a type of lymphoma and almost 20% of cancer in this age group will have brain tumors. 11% of cancers will be bone tumors with about half being osteosarcoma. 9% will be some sort of soft tissue sarcoma. Only 5% of cancers in this age group will be a germ cell or gonadal tumor and only 9% of cancer in this age group will fall into the group called carcinomas.

pplpleazer: I have heard that I should save my placenta after my child’s birth. Is this a good idea and how would I go about doing it?

Speaker_-_Dr__Margaret_Thompson: You may be thinking of cord blood rather than placenta. The hematopoietic or blood stem cells in the cord blood can be used to reconstitute a person’s bone marrow if he or she develops a cancer that requires therapy that will oblate or wipe out the bone marrow and requires a bone marrow transplant. Unfortunately, the most likely form of cancer that a child could get that would require bone marrow transplant would be leukemia and in that case, you would likely not use the person’s own marrow. The other diseases that a child might require his or her bone marrow replaced for are very rare. I think a better idea is to donate cord blood from your pregnancy. The cord blood would be placed in a registry that any child or adult who needed a bone marrow transplant and who matched the cord blood could use. Most obstetricians should be able to tell you how to donate cord blood.


The Emotional Side of Cancer

Buzy_mom: My 10 year old daughter has been fighting cancer for the past 2 years. Another tumor has just been found. She has given up. What can I do to convince her that her attitude and will to fight has a lot to do with her recovery? How do I convince her that her life is worth fighting for?

Speaker_-_Dr__Margaret_Thompson: Each child handles his or her diagnosis differently with a varying degree of resilience. The first thing I would suggest is to make sure that you (not necessarily with your daughter present) have had a frank discussion with your child’s primary oncologist regarding your child’s overall prognosis and that you understand the goals and burden of any future therapy.

With respect to helping your daughter through this, I think it is important to validate her discouragement and give her time to grieve this new information of a new tumor. You might then talk with her about what is hardest about the news. Sometimes what is discouraging to a child is different than what it is to the parent. What may be top on your worry list is survival, but what might be top on her worry list is not getting on her make-a-wish or losing her hair again. Finally, it might not be a matter of “convincing her” that her life is worth fighting for because that is a very abstract concept. It may be a matter of showing her that there are still great things she can do in her life.

Jodee378: My teenage son awoke a couple of days ago with a sharp pain in the area where he had previously had a cancerous tumor removed. The spot also seems to be “harder” to the touch than it was previously. His pain is getting worse. I have made an appointment for him to see his doctor, but does this mean the tumor may have come back or a new one is growing?

Speaker_-_Dr__Margaret_Thompson: One of the hardest times for parents is when their child has a symptom similar to when he or she was first diagnosed. The spot may be harder because there is scar tissue forming where the previous tumor was removed. It might have a sharp pain because sometimes when nerves are cut in the process of removing a tumor it can change skin sensation. Of course, I cannot tell without evaluating your child so you have done the absolutely right thing in making an appointment for him to see his doctor.


Cancer Risks and Children

007_JB: My children are of mixed heritage. They never get sunburned, but do get darker in the sun. Do they have the same risks of skin cancer as kids with lighter skin tones?

Speaker_-_Dr__Margaret_Thompson: Darker skinned individuals have less of a risk of skin cancer than individuals with lighter skin tone, but there is still a risk. So sunscreen is a good idea. At the same time, individuals with darker skin (and those who wear a lot of sunscreen) and those who live in northern climates where they get less sun exposure can become vitamin D deficient. So wear sunscreen but drink vitamin D fortified milk!

Karen: My daughter likes to drink diet beverages that are sweetened with artificial sweeteners. Are there any associations between artificial sweeteners and cancer?

Speaker_-_Dr__Margaret_Thompson: There is no association between artificial sweeteners and cancer. Here is a link to a fact sheet that may help. www.cancer.gov/cancertopics/factsheet/Risk/artificial-sweeteners

Stephen: We have been remodeling our house and found that there is asbestos in our basement. Our children have always played in the basement. Is there a possibility that they will get cancer from exposure to the asbestos?

Speaker_-_Dr__Margaret_Thompson: Exposure to asbestos has been linked to a form of cancer called mesothelioma. It is usually associated with individuals who have had a large exposure to asbestos such as those living near asbestos mines. The time between exposure and cancer is typically 20-50 years after initial exposure. Here is a link to a fact sheet that may help.

TweetyBird: We live in an area where there is often smog from high car traffic. I have heard that benzene is found in high traffic areas and that it can cause cancer. Do I need to be concerned that my children might get cancer from exposure to benzene while they play outside?

Speaker_-_Dr__Margaret_Thompson: There are many sources of benzene in the environment. These include gasoline, automobile exhaust fumes, cigarette smoke, emissions from coke ovens and other industrial processes, and waste water from certain industries. Benzene is commonly found in the air but levels are usually pretty low. In areas of high traffic and gasoline stations, levels maybe higher.

Secondhand smoke accounts for 10% of benzene exposure among non-smokers. While playing in an area where there are higher levels of benzene in the air from high car traffic may add to an individual’s overall cumulative cancer risk as an adult. If that is the only exposure, it alone is unlikely to cause cancer in your children.

SammyD: My two children both have cell phones which they use on a daily basis. My friend told me that you can get cancer from using cell phones. Is there an association of cancer and cell phone use?

Speaker_-_Dr__Margaret_Thompson: Cell phones emit radiofrequency which is a form of radiation. The type of radiofrequency energy emitted by cell phones is low-frequency or non-ionizing. It is not known if there is a risk between this non-ionizing radiation and increased cancer risk. Some studies have looked at the risk of developing some types of brain tumors and cell phone use. These studies suggest a slightly increased risk for certain types of brain tumors but further studies are needed.

MamaMia: My teenage girls want to use nail polish but I have heard that many nail polishes contain formaldehyde and can cause cancer. Is it safe to allow my girls to use nail polish?

Speaker_-_Dr__Margaret_Thompson: Formaldehyde is associated with increased cancer risk. Many nail polishes do contain formaldehyde. Individuals who work in the nail salon business may have an increased risk for cancer because of their exposure; however, it is not clear that an individual’s use of nail polish will increase cancer risk. There are formaldehyde free nail polishes.

Michael: Do I have to be concerned that the magnetic field which comes from a working blow dryer, television, computers, etc. can cause my children to get cancer?

Speaker_-_Dr__Margaret_Thompson: Most studies have shown inconsistencies or no relation between appliances and risk of childhood cancer.

StaceyH: My daughter takes long term antibiotics for acne. I heard that there is a connection between antibiotic use and breast cancer. Is there a chance that my daughter will get breast cancer?

Speaker_-_Dr__Margaret_Thompson: There is data out there that shows women who took antibiotics for more than 500 days—or had more than 25 prescriptions—over an average period of 17 years had twice the risk of breast cancer as women who had taken no antibiotics. This does NOT mean that antibiotic use causes cancer. It is possible that the conditions that caused an individual to require antibiotics is what increases the risk of breast cancer. The decision to take any medication should weigh the risks and benefits of the treatment.

Parent867: I have read that frying, barbecuing and other methods of cooking meats at very high temperatures cause heterocyclic amines (HCAs) to be created, which can cause cancer. Are there restrictions as to how often and how much of these types of cooked meats are safe to for children to consume to avoid them getting cancer?

Speaker_-_Dr__Margaret_Thompson: Cooking certain meats at high temperatures creates chemicals that are not present in uncooked meats. Some of these chemicals MAY increase cancer RISK. At present a maximum daily intake for HCA has not been established. There is really no good measure of how much HCAs has to be eaten to increased cancer risks. If you are concerned you can microwave meats prior to especially before frying, broiling and barbecuing. You can also avoid making gravy from meat drippings if the meat has been cooked at high temperature.

Joy4433: My teenage daughters keep asking me if they can have breast implants. Can breast implants cause cancer?

Speaker_-_Dr__Margaret_Thompson: The studies show that there is not an increased risk of cancer in women with breast implants.

999KZG: Breast cancer runs in my family. My 13 year old daughter breasts are well developed. Do I need to take her to have a mammogram to see if she will get cancer?

Speaker_-_Dr__Margaret_Thompson: A mammogram is not indicated at age 13. I would recommend she be instructed in the practice of self exams and have her start that practice.

TammyR: What are the risks associated with teenage girls using oral contraceptives and cancer?

Speaker_-_Dr__Margaret_Thompson: Some studies show an increased risk of breast cancer while others do not. Some studies show a decreased risk of endometrial and ovarian cancer. Some studies show an increase risk in cervical cancer but the human papilloma virus is still the major risk factor. With respect specifically to pediatric cancer, OCPs do not increase risk.


Wilm’s Tumor

Francis: What does LOH mean in regards to a Wilm’s Tumor?

Speaker_-_Dr__Margaret_Thompson: LOH stands for loss of heterozygosity. For every gene in our DNA, a cell has (generally) 2 copies. These copies are almost always not identical or homozygous. Instead they are usually different or heterozygous. In tumor specific LOH, the tumor cells do not have 2 different copies of a gene or section of a chromosome. Instead either the tumor cells have one copy or two identical copies. Research suggests that patients with Wilm’s Tumors that do not have 2 different copies of a portion of the small arm of chromosome 1 or the long arm of chromosome 16 (have LOH at those locations) have an increased risk of relapse. One area of research in Wilm’s Tumors is determining if increasing the intensity of treatment in patients whose tumors demonstrate LOH will do better.


Genital Warts

LL555: Our pediatrician says my daughter has venereal warts. She advised us to see a gynecologist to monitor for potential cancer. I don’t understand. How can warts cause cancer?

Speaker_-_Dr__Margaret_Thompson: Genital warts are caused by a virus. The same virus can increase a woman’s risk of cervical cancer. Your daughter should see a gynecologist for regular pap smears to detect early any precancerous lesions. The fact that your daughter has genital warts does not mean she will get cervical cancer, but it certainly is a risk factor.


Cancer Treatment & Side Effects

Apollo417: My daughter is depressed because we just found out that her cancer treatment will probably cause her to lose her hair. Will her hair loss be permanent? What are our options?

Speaker_-_Dr__Margaret_Thompson: If the hair loss is from chemotherapy only, it will grow back. Although hair loss for many girls, particularly teens, is initially a big concern, most adjust great and some even enjoy not having to deal with hair for a while. There are regular wigs and there are what are called hat wigs which are hats with hair attached. The majority of my patients end up wearing bandanas or hats.

The hair when it grows back sometimes is a little softer and straighter than originally and sometimes a little curlier. Sometimes it has a very cool sheen to it. If the skull/scalp received radiation, there can be permanent hair loss. This is true with higher doses of radiation and not usually true for the low dose cranial radiation that some patients with leukemia receive. Some patients who have had permanent hair loss from radiation may wear a wig after treatment is finished.

Pappy2009: My grandson has an implanted port catheter in his chest. I would like to help keep his life as normal as possible. What are his limitations with this device?

Speaker_-_Dr__Margaret_Thompson: Port-A-Caths or Med-ports as you know are little disks that sit under the skin that have IV-like tubing that tunnels under the skin to a big vein. When your grandson needs blood drawn or IV chemotherapy given, a needle is easily popped through the numbed skin into the disk. The needle can then be used just like an IV. When that day’s medicine or blood draws are done, the needle is removed. I love Port-A-Caths because they let kids and adults with them have a pretty normal life (only better because there are not the IV pokes). I place very few limitations on my patients with Port-A-Caths.

Patients can bath and shower with them, swim with them (but only in chlorinated pools generally). Patients can run and play with them. Patients should avoid sports where they are apt to take significant contact to the port such as football or basketball in older kids. Some physicians recommend a chest protector for sports such as baseball where they could get hit with a pitch.


Talking to Children about Cancer

LNKpgh: How do you talk to your child about his/her cancer? Do pediatric cancer programs have consults built in to help them and their families deal with their illness?

Speaker_-_Dr__Margaret_Thompson: Each child and each family is amazingly unique in how they deal with a diagnosis of cancer. Some parents prefer to do most of the discussion themselves; others prefer to have the primary oncologist do most of the explanation. It is important that the discussion be absolutely honest but age appropriate and appropriately timed.

If a child is critically ill and in pain or very sick, then a discussion of losing hair and missing school is probably not appropriate, but at a later time, it is important. Treatment of children with cancer and their families is a team effort. There is usually a primary oncologist, but there likely also are a nurse practitioner, several nurses, child life specialist, psychologist, social worker. While this is hopefully the first time the family has had to deal with such a diagnosis, we as a team have done this many times before and will do our best to guide a family through the process.


Cancer and Siblings

SuperMom: My 11 year old daughter has leukemia, and is currently holding her own. However, her older brother, who is 15, is having a hard time. How can I help him deal with what is going on with his sister?

Speaker_-_Dr__Margaret_Thompson: You are absolutely correct to be keeping an eye out for how your son is doing. We know that while one child may have a diagnosis of cancer, the entire family is affected. There are several things you can do that may help. First, make sure you are keeping the lines of communication open with your son. He should know what is going on at an age appropriate level. He may feel that there is some information that he doesn’t know about and he may be worried about his sister.

He also may be feeling guilty that she is sick and he isn’t. He might feel bad when he has a good time and his sister can’t be doing things. He also might be jealous of the attention that she receives… and then feel guilty about it. So it is important to make sure that he is in the loop. It is also important to make sure that you set aside special time for him and make sure he knows that you are still really interested in his life.

Sometimes parents will have special night out with the child who is not ill. If he has a big event coming up, make sure it doesn’t get lost in the shuffle. Another thing to look into are sibling support groups.

The pediatric hematology/oncology program at Cleveland Clinic has a sibling outreach group specifically designed to help support the other children in the family. There may be some support groups in your area for sibs or even online. I would talk with your daughter’s oncologist or social worker for resources. You might also meet with a psychologist or have your son if he wishes meet with a psychologist. Most pediatric oncology programs will have a psychologist or group of psychologists they work with.


Second Opinions

Tkb_321: When you are given a very, very poor prognosis for your child, is it wise to seek a second opinion? What about if your child is still in treatment – how could that be done?

Speaker_-_Dr__Margaret_Thompson: I always support and encourage a family to get a second opinion regardless of the prognosis if it will be helpful to the family. Although most treatment for pediatric cancers is fairly standardized, it is important that parents feel they have done everything they could. The first step in getting a second opinion is simply to talk to your child’s primary oncologist.

Frequently an oncologist has already been in contact with other pediatric oncologists around to country informally. He or she can recommend a center for a second opinion or the family can ask to go to a specific place. A release must be signed to have medical information and scans sent out.


Cancer Research and Clinical Trials

clarion: My niece was just diagnosed with cancer and the doctors talked about treating her on a research trial. I don’t want her to be treated like a lab rat.

Speaker_-_Dr__Margaret_Thompson: Cancer is rare in children. As a result, it can be difficult to figure out how best to treat children with cancer.

Over 40 years ago, many clinics and hospitals treating children with cancer got together to start studying pediatric cancers and how to treat them. By getting together and starting to treat children with different cancers in standard ways and collecting data on the tumors and how the patients do, survival in pediatric cancers and our understanding of pediatric cancer biology has improved greatly.

There are several different types of research trials. Some research trials are primarily biological in nature and involve the collection of tumor samples. Your niece might be offered enrollment on such a trial. In this case, if there is tumor sample or other blood or tissue left over, then it would be donated to the consortium for study. No procedure would be done only for the purpose of collecting research material.

Your niece might also be offered enrollment on what is called a Phase 3 trial. These trials typically involve a fairly standard therapy with some change that is felt might be better, or they might involve your niece getting one of 2 treatment plans both of which have been shown to be effective. For example, in a patient with a tumor that we have great success treating, a clinical trial might involve decreasing the therapy some in an effort to decrease some of the long term side effects from therapy.

In patients with cancers that we have not have much success treating, then the trial might involve adding another medication that has been shown effective in patients who relapse and that might improve outcome if it is given with the initial treatment.

There are also trials called Phase 2 trials that involve the use of medications that are believed will be effective, but there are not studies yet that show it is effective. These trials are frequently used in patients who have relapsed. Studies of the safety of the medication have already been completed.

A final type of trial your niece might at some point be eligible for are called Phase I trials. These are studies that are looking at finding the safe dose for children. These are typically studying medications that have already been used in adults, but the best dose for children has not yet been identified. These trials are only open to patients who do not have options with other medications that are known to be effective.


Oncology Follow-up Visits

calliem: My grandchild has completed therapy. Why does he have to keep going back to the doctor so frequently?

Speaker_-_Dr__Margaret_Thompson: Congratulations on your grandson completing therapy! I hope you had a big party with lots of silly string!

There are 3 primary reasons why your grandchild continues to see the oncologist frequently. The first is to continue to monitor for any immediate and short term effects of the treatment. This monitoring usually involves monitoring blood counts and electrolytes to make sure they have recovered fully.

The second reason is to continue to monitor for possible relapse. For most pediatric cancers, the risk of relapse is greater early on and decreases with time. This is why typically scans or blood tests are done more frequently initially and then this spreads out over the years.

The final reason is to monitor for what we call late effects. Late effects include social, psychological, cognitive and medical effects from treatment. What late effects your grandchild is most at risk for depends on his age at diagnosis and the types of treatments he received. Good late effect monitoring starts at diagnosis with an evaluation of the planned therapy.

For example, if a patient is going to receive chemotherapy that will likely make him infertile, then sperm banking might be a good plan. If a patient is going to receive therapy that has the potential to cause heart dysfunction, then regular yearly echocardiograms are indicated.

My goal when treating my patients is to move them back towards as full and normal life as soon as possible, and this does not stop when therapy ends.


Closing

Cleveland_Clinic_Host: I'm sorry to say that our time with Dr. Thompson is now over. Thank you again Dr. Thompson for taking the time to answer our questions about childhood cancer today.

Speaker_-_Dr__Margaret_Thompson: Thank you!


More Information

  • To make an appointment with Dr. Margaret Thompson, or any of the other specialists in our Pediatric and Adolescent Cancer & Blood Diseases Department at Cleveland Clinic, please call 216.445.5517 or call toll-free at 800.223.2273, ext. 55517.  You can also visit us online at clevelandclinic.org/kids
  • A remote second opinion may also be requested from Cleveland Clinic through the secure eCleveland Clinic MyConsult Web site. To request a remote second opinion, visit eclevelandclinic.org/myConsult.
  • If you need more information, contact us, chat online or call the Center for Consumer Health Information at 216.44.3771 or toll-free at 800.223.2272 ext. 43771 to speak with a Health Educator. We would be happy to help you. Let us know if you want us to let you know about future web chat events!
  • Some participants have asked about upcoming web chat topics. If you would like to suggest topics for 2009, please use our contact link clevelandclinic.org/webcontact.

This chat occurred on August 26, 2009.

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