Children who get cancer are usually treated with the same methods as adults, although the doses are different. There are three common treatment methods that are often combined: cytostatic therapy, radiation therapy, and surgery. The duration of treatment for a cancer disease can vary from a few months up to several years.
By children is meant persons up to the age of 18. Because there are so few children who get cancer. This has led to improved treatment results. Four out of five children live five years after diagnosis and the vast majority of them survive the disease.
Treatment at the Child Cancer Center
The departments at the Children’s Cancer Center are adapted to the needs of children and the staff is very used to working with children of different ages. In addition to doctors with different specialties, the child and the family will meet nurses, nurses, dietitians, play therapists, teachers, curators, psychologists, physiotherapists or physiotherapists, medical secretaries, and dentists.
Dare to ask!
You who are a patient or parent should never hesitate to ask questions to doctors and other health care personnel. You can ask the same question many times if you need to. Meeting people in crisis and trying to explain medical facts as clearly as possible is an important part of the staff’s work.
Surveys and samples
It is common for the child to undergo many different examinations both before and during treatment. It may be an ultrasound examination, computed tomography, and magnetic camera examination. In addition, the child may need to be anesthetized for the doctors to be able to take samples from the cancer tumor or to use various forms of assistive devices for continued treatment. The child often needs to have multiple blood samples that can be taken in the finger or arm fold or through an implanted venous catheter. You can read more about venous catheters in the chapter on cytostatic therapy.
All research done at the beginning is needed to find out what kind of cancer the child has and how far it has developed. It is needed to be able to plan for the right kind of treatment.
Children may need extra help with the sampling
Some children find it difficult to undergo examinations and are afraid of sticking or lying under, for example, an x-ray device. Childcare staff have extensive experience with children of all ages and with various major concerns. They are well prepared to make examinations and samples as gentle as possible for each child. After a while, the child also gets used to the tests and examinations that need to be done several times during cancer treatment. In principle, some longer or painful examinations are always done with the baby asleep. It is more common the younger the child is.
You can always ask as much as you want about the various surveys. It is also good to tell what exactly you or your child may think is difficult or unpleasant, so that the staff is extra attentive to these things.
Commonly asked for research studies
One question that is faced by almost all children and their parents, while receiving the message about cancer, is the question of being involved in research studies in connection with treatment.
Most parents are shocked by the news that their children have cancer. Then it can feel difficult to both take-ups in all the medical information about the treatment that awaits and also have to decide whether the child should participate in a research study. In addition, it is often quite urgent to give an answer as treatment sometimes cannot start until the doctors know the answer.
Small adjustments to the treatment are tried
Child cancer care works according to clear guidelines that are usually called treatment protocols or schedules. During the years that the doctors follow the current protocol, various studies of new treatment methods or new ways of using the methods that are already in existence are constantly underway. If the results of the studies prove to be better than the protocol, they will lead to a new protocol after an evaluation. What is called trying out a new treatment method is rarely something completely new, but is usually about small changes, such as adjustments to the amount or type of cytostatic drug.
You have the right to choose
Scientific studies are often about comparing two treatments with one another. Then it is common for the child to be drawn into a certain treatment group. One group is treated exactly according to the current protocol, which so far has proven to be best. The other group is treated with a certain change, in a way that researchers and doctors have begun to believe may be better, but need to evaluate to be completely safe.
For some diseases with a good prognosis, the purpose of the study may be to test whether it may suffice with less amount of treatment than previously received to achieve an equally good result but with a lower risk of complications.
A common question that parents ask is whether the child is at risk of receiving poor treatment or treatment if one does not want to participate in the study. The answer is no. The staff at a child cancer center makes no difference to children who participate in research studies or not.
To think and understand
Because a research study often involves randomly choosing a particular form of treatment, treatment cannot begin until the doctors have received an answer as to whether the child should participate in the study or not. The national guidelines that exist around research studies say that it is important to let the patient, and in this case the child’s parents or other guardians, think through the decision properly and ask enough questions.
As a parent or other guardian, you may still want to give your answer quickly, no matter how well thought out, because you are so anxious for the treatment to start. In addition, it can feel difficult at all to get into all the medical details of a treatment that will often last for a long time. The doctors who will treat the child, and who also ask the question of participation in a research study, are accustomed to this situation. You can ask them anything you wonder about.
Some children must begin treatment even before the family has decided whether or not the child should participate in a study.
Sometimes, surgery is the most important part of the treatment, or the only one. But more commonly, the child is also treated with cytostatic or radiotherapy or both. In some cancers, treatment begins with the child receiving cytostatic or radiotherapy, sometimes both and, to shrink the cancer tumor to make it easier to operate. Certain times, cytostatics may be needed even after surgery to reduce the risk of some cancer cells remaining in the body.
The process depends on the child’s situation
It varies if the child needs surgery as soon as possible or if it is less urgent. Preparation, operation time and the time after surgery are affected by the child’s diagnosis, where the disease is located and how the child is feeling at the time of the operation.
Ask your health care provider about anything you wonder about before, during and after an operation, whether it is emergency or more planned.
The child is anesthetized during the operation
Operation is almost always performed under anesthesia. Then the child must not eat or drink before the operation, usually from midnight the night before.
The anesthetic can be given to the child through a thin plastic tube in the arms fold or hand. The anesthetic can also be given through a venous catheter if the child has had one. You can read more about venous catheter in the chapter on cytostatic therapy. Sometimes the child can inhale the anesthetic through a respiratory mask.
It is good that you as a parent accompany the child to the operating department and stay with the child until he falls asleep.
Larger children may sometimes be able to make certain interventions using nitrous oxide instead of being anesthetized.
After the surgery
After the operation, the child is moved to an awakening ward and left there for observation for a few hours. You as a parent can be with the child. The child can sometimes feel ill when it wakes up.
Cytostatic drugs are drugs that inhibit cell division of cancer cells. In a child, the cancer cells divide more often than in adults. This means that cytostatics often work particularly effectively in children and that children also manage to be treated with higher doses of cytostatics than adults.
For some cancers, cytostatic medicine is the only treatment method the child needs. Sometimes, cytostatic drugs are used to first shrink a cancerous tumor before surgery. Some children get cytostatic drugs after another treatment because there may be single scattered cancer cells left. Different types of cytostatic drugs are usually combined to give extra effect.
Venous catheter treatment
The child receives cytostatic drugs directly into the bloodstream by drip, a treatment that can take anywhere from a few minutes to a few days, but usually, it takes a few hours.
During this period, some children receive a small box of metal or plastic under the skin high up on the chest. The box has a thin tube attached to a blood vessel. The dose is called subcutaneous venous port, or port-a-cath, and the purpose is for the child to avoid getting many stings directly into the blood vessels during the treatment period. The skin on the chest where the box sits can be anesthetized with an ointment before sticking for sampling or medication.
Other children get a so-called central venous catheter, CVK, which is also a thin tube attached to a blood vessel, but where the end of the tube hangs outside the skin. The child is anesthetized before a report or CVK is operated on and the operation itself usually takes less than an hour. When the hose or box is not used, children do not usually think too much about it. The box is not very visible on the outside of the skin but feels if you press where it sits. The tubing is visible outside the skin but taped under a bandage when not in use.
Cytostatics are given as a drip for a few hours
The drip is sometimes put on a stand with wheels so that the child can be up and moving while the treatment is in progress. Usually the child is treated with various kinds of drip for a few days in succession while in the hospital. Thereafter, a pause of one or a few weeks is made before a new treatment cycle is started.
During the stay, the child may be at home if they feel well but have as much contact as is needed with the treating hospital.
Almost everyone loses their hair
Cytostatic drugs affect not only cancer cells but also healthy cells. This means that the person being treated often has side effects of some kind. They usually go over when the treatment is complete. For example, the hair may fall off after a few treatments. It begins to grow again a few weeks after the last treatment is completed.
The kids who want can get help trying out and ordering a wig. Other children may want a cap or shawl during the treatment period.
Increased risk of infections
Cytostatic treatment can temporarily reduce the amount of white blood cells. Then the immune system is weakened. The child can then get various infections that often have to be treated with antibiotics.
Infections are easily spread through kindergartens, schools, and visits by friends. It is difficult to protect the child completely against viruses and bacteria and most children are best left to live as usual between treatments even with the increased risk of infections.
But even during periods when the child’s immune system seems to have recovered, you need to be aware of fever and other signs that the child is not feeling well. The staff at the pediatric cancer department usually informs how to do if the child has sudden infection symptoms. It is important to immediately contact the hospital where you live so that the child can be examined.
Many children avoid nausea
Cytostatics are often associated with nausea. But there are effective drugs that prevent many children from feeling ill at all or just sometimes at times from the treatment of cytostatic drugs.
The appetite is often affected by the cytostatics, although it varies from child to child. Some children may feel ill for other reasons, such as disliking treatment. Other children find it difficult to eat because the treatment can cause mucous ulcers or dry mucous membranes. There are various ways that can make eating foods easier for cancer.
Radiation therapy is usually given in a limited area of the body, right where the cancer tumor is. Both healthy cells and cancer cells are damaged by the radiation treatment, but the healthy cells have a better ability to repair themselves.
Compared to the treatment of adults, there is a greater risk of radiotherapy for children and adolescents who are still growing and where radiation therapy can affect the development of important functions, for example in the brain. Much research and development is underway on improved techniques for radiation therapy for children. An example is radiation therapy with protons, which may be an alternative in some cancerous tumors.
Young children need to be anesthetized during the radiation treatment
When young children receive radiotherapy, they usually need to be anesthetized in order to stay completely still during the treatment. This may mean that a child may need to be anesthetized for a while every weekday for several weeks when radiation treatment is in progress.
The radiation treatment is carefully planned in advance. Among other things, doctors draw marks on the child’s body. The marks are used to set the equipment so that the treatment is given in exactly the right place.
Older children who can lie still do not need to be anesthetized but receive help to keep the body in the correct position during treatment.
The first radiotherapy session can take a little longer so that the staff can go through all the settings extra carefully, but then the treatment itself usually only takes between five and fifteen minutes.
You can be with the child inside the treatment room during preparation, but you need to leave the room during the minutes of radiation treatment given. Children who are awake can talk to staff at any time through microphones and speakers in the room. The staff constantly sees the child on a monitor.
The skin may become irritated
Radiation therapy is not felt while it is in progress, but some children may have skin irritations after some treatments. The skin may become reddish and itch around the area being radiation treated. If the child receives radiation treatment to the head, the irritation can settle in the oral mucosa and throat.
The side effects go away when the treatment is completed, but the skin around the irradiated area is often more sensitive than usual for several years after the radiation treatment. Therefore, it is important to protect the irradiated area from sunlight for an extended period of time after treatment.
Stem cell transplantation
A stem cell transplant can be part of a treatment for leukemia or lymph node cancer in children, but other diseases can also be treated with a stem cell transplant. Stem cells are immature cells found in the bone marrow. In a stem cell transplant, the child receives new, healthy stem cells from another person. The child’s own stem cells can also be used. Then it is not called transplantation but high dose treatment with stem cell support.
Before the stem cells can be transferred, the child is treated with cytostatics or radiotherapy to remove the diseased cells from the body and to make room for the new healthy cells. Sometimes the child needs both cytostatic and radiation therapy.
The child is allowed to stay in the hospital during treatment
Before, during and after a transplant, the child is very susceptible to infections. Therefore, it is common for the child to be isolated for a few weeks in a private room at the hospital. The family maybe with the child but must follow the hygiene rules in the ward. For example, it is important to wash your hands before visiting the room and change clothes frequently. The child is usually given medication to counteract the effects of the impaired immune system.
Sometimes it may be possible to take care of their baby at home during a stem cell transplant, but it requires great efforts by the family and is not available anywhere in the country.
Since a stem cell transplant is a demanding treatment, both the child and the family must meet with the healthcare professional before the treatment to go through all the questions and thoughts.
Getting your own stem cells
If the child is to get their own stem cells, the cells must first be removed from the blood. The treatment begins with the child receiving a drug that causes new stem cells to form more quickly in the bone marrow. After a few days of treatment with the drug, it is time to remove the stem cells. It is usually done via a catheter that is operated into one groin or throat. The stem cell collection takes about three to four hours and the baby can then be anesthetized if needed. Sometimes the procedure may need to be repeated the next day. It is also possible to remove stem cells directly from the bone marrow, but this is less common.
Getting other people’s stem cells
If the child is to receive stem cells from another person, it is treated with cytostatics before the transplant, to suppress the body’s own immune system. This reduces the risk of the transplanted cells being repelled. It must be one or two days after the cytostatic treatment before the baby can get new stem cells.
Treatment with cytostatics or radiotherapy
The child is thus first treated with radiotherapy or cytostatics, or both, before the transplant itself can be done. It is often a demanding time for the child and the family, especially during cytostatic therapy as the child then receives high doses and may feel ill from the treatment.
The goal of the pretreatment is to knock out the diseased cells in the body so that they do not remain when the child receives the new, healthy stem cells. After the pretreatment, the new cells are given as a drip into the blood. It takes about half an hour to a little over an hour depending on the amount of cells to be given.
After the treatment
As soon as the transplant is complete, the body begins to recover. The child can usually leave the hospital within a few weeks. The pace depends on how the body has responded to the treatment. The child needs to go on tight checks for a long time after treatment.
Post-checks for a long time
After treatment for cancer, the child needs to go on post-check, often for a long time. Some children need to go on post-check-ups even after they become adults. It is done both to see that the cancer is gone and to see if the treatment has affected the body in any way.