Some treatment centres set up a meeting with the healthcare team, child and family before the end of treatment. It can be very helpful with the transition from being a cancer patient to being a cancer survivor. Some things that are important to discuss with the healthcare team include:
- completing cancer treatment and the late effects of treatment
- who to call if you have any questions after treatment is complete
- when to call the healthcare team and any symptoms to watch for
- details of next steps including information about follow-up appointments, where follow-up will take place and schedules
- whether and when your child should be immunized
- medical history documents that contain information you will need for future healthcare providers, such as type of cancer, date of diagnosis, place of treatment, drugs and dosages, amounts of radiation and follow-up information
- how to notify the treatment center about a change in mailing address and how to share any tests results or other information
- what to expect in the months and years ahead
Some families like to celebrate the end of cancer treatment. This may include taking pictures of the treatment centre and staff, taking pictures of their child at the last treatment, having a party or going on a special trip or vacation.
For the first few months off treatment, your child may still need to take medicines. They may still have low blood counts and a weakened immune system. If your child has a fever or comes into contact with someone with chicken pox, shingles, measles or fever, you should call the treatment centre. You may need help managing the fever or your child may need medicine to prevent infection. After 6 months of being off treatment, you can generally manage any fevers or illness as you would for any child.
Everyone reacts differently to treatment being over. You may be very happy or you may be very scared – almost any emotion is normal. Many families find it hard to go from having regular medical appointments to having fewer visits. The end of treatment can bring fear of the unknown. Some may have fears that without receiving cancer treatment there is nothing to keep the cancer away. Some say the fear of recurrence or relapse can be overwhelming at first but it does become easier to manage over time. In some cases, it’s only after treatment has ended that you realize how hard it has been to cope with all that has gone on in your family. It’s common for a parent to reach out to a psychologist or family doctor for help at this time.
Age can be a factor in how children react. Younger children may ask questions about why treatment has stopped. They have often become very friendly with the healthcare team and other children receiving treatment. Your child may find it difficult to not see these people as often. Teenagers may want to put the entire experience behind them.
As childhood survivors grow up, so does their understanding of what happened to them when they had cancer. If they were very young at the time of treatment, they may want to know more about their diagnosis and treatment. They may ask more questions.
What children can and can’t do
Your doctor may tell you of any activities to avoid, but doctors usually encourage children to get back to their usual activities as soon as they feel well enough. It’s very common for children to have fatigue after treatment. Fatigue is more than normal tiredness, and it can take several months for your child to get back their normal strength and energy level.
Follow-up care for life
Childhood cancer survivors and their parents soon discover that they are not left to fend for themselves once treatment is finished. Children will continue to have regular follow-up visits at the treatment centre or with your family doctor. Visits are frequent at first – maybe even as often as once a month. These visits allow the doctor to see how you are recovering from treatment and to check for any signs that the cancer is coming back. Tests, such as blood tests and imaging tests, may be done at certain intervals.
Going back to the clinic for appointments can be stressful, even years later. It can bring back memories of treatment. It can be difficult to see other children who are still being treated for cancer. But it can also be comforting to see familiar faces of the healthcare team who cared for your family.
Visits become less frequent with time, but children who have had cancer should continue to be followed in aftercare programs or by their family doctor for the rest of their lives. The treatment centre will usually follow up with children after treatment has ended until they are around 21 years of age. Then survivors are transitioned to an adult centre that specializes in care of adults who are survivors of childhood cancer or back to the care of their family doctor who will be given guidance on how to follow these people for their adult lives.
You may see the same doctor who arranged the treatment, or there may be different doctors and nurses who specialize in long-term follow-up who will take over the care and monitoring of your child. Your treatment centre will inform you of where your child will be able to get the appropriate follow-up care.
No matter who provides the follow-up care, it is very important to attend all of the follow-up visits. As children grow up, it is also important to learn about the treatment received and the follow-up care that is needed in order to stay as healthy as possible.
Medical care between follow-up visits
Any doctor who sees your child should be familiar with your child’s history of cancer. If the child is injured or becomes sick with usual childhood illnesses, call the family doctor, GP or pediatrician. If a problem arises that might be related to the child’s cancer, the family doctor can contact the oncologist or long-term follow-up doctor.
Depending on the circumstances, the child’s pediatrician or family doctor may eventually take over the follow-up care plan.
Keeping medical records
It is important for you to have a copy of your child’s summary of treatment for future healthcare providers. Keep it in a safe place and give a copy to every healthcare provider who is involved in the child’s care after treatment. Pediatric cancer treatment centres will provide a summary of your child’s cancer treatment. This is a record that includes all the information about the child’s diagnosis, treatment and follow-up. Centres may also provide health planner booklets or binders to record and organize medical information and the schedule of tests and appointments.
A complete summary of treatment letter should include:
- the type of and the stage of the cancer
- the date of diagnosis and recurrence, if any
- the child’s age at diagnosis
- name and contact information of hospitals, treatment centres or clinics where the child received care
- past medical history
- family history
- initial examination and investigations (diagnostic tests, pathology reports)
- name and contact information of the child’s main oncologist and all other healthcare providers involved in the child’s care, especially doctors who supervised treatments
- names and dates of all surgical procedures and name and contact information of the surgeons involved
- clinical trial protocol number and name if the child was part of a clinical trial
- names of all chemotherapy and biological therapy drugs and combinations, how they were given (in pill form or by injection), total doses that were given, the dates that the first doses were given and the end of treatment date
- name and contact information of the doctor(s) supervising the chemotherapy or biological therapy
- dates, number of treatments, total dose and all areas of the body treated by radiation therapy
- name and contact information of the doctor(s) supervising the radiation therapy
- dates, types and conditioning regimens of any stem cell transplants
- name and contact information of the doctor(s) supervising the transplant
- dates and types of blood products received
- any major treatment complications
- any side effects of treatment and treatment received for those side effects
- dates and descriptions of any recurrences of cancer
- treatments for recurrence and name and contact information of the doctor(s) supervising the treatment of the recurrence
- potential future problems
- recommended follow-up including the schedule of follow-up visits and tests
Transition programs give cancer survivors who are reaching early adulthood the knowledge and skills they need to successfully manage their own healthcare in the adult system. Follow-up may be done at the treatment centre or children may move on to other healthcare providers for follow-up once they are adults. Starting in middle childhood, your child will be supported and encouraged to be independent with certain matters of their health, for example:
- booking their own appointments
- preparing and asking their own questions
- interacting with a healthcare provider without the parent present
- being able to concisely summarize their health history
- knowing what specific late effects they may be at risk for
Up to this point, the parents were often the primary caregivers. Parents may also need support in giving up control and allowing their child to manage their own health.