Childhood Cancer

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Childhood Cancer Survivors

Working With Healthcare Providers

All survivors need a long-term relationship with a knowledgeable and attentive healthcare provider (physician or nurse practitioner) whom they trust. If you are a cancer survivor, the provider you choose should oversee all of your medical care and refer you to specialists as the need arises. The provider should either specialize in treating survivors of cancer or be willing to work with you to keep up with the latest research and recommendations for care. Follow-up care for survivors of childhood cancer is lifelong. It is an investment in your future health, and perhaps your life, to spend time finding a healthcare provider who is capable of taking care of your particular needs.

As a survivor mom, I must constantly navigate medical situations and be an advocate for my daughter. I’ve learned that outside of her medical team, there is a lot of misunderstanding about childhood cancer, late effects, and things like hearing loss that affected my daughter. She lost high frequency hearing as a result of chemo. I wish there had been more supports available to me, but for the most part people have been supportive and understanding. I wish I had immersed my daughter in the deaf/hard of hearing community when she was young. I believe it would have provided a better support system there where she would have felt more comfortable, learned sign language, and been more confident in her communications with others. One thing I would tell other parents, is to always trust that voice inside you and if you feel something is not right, then don’t ignore your gut feeling.

 

The challenges are from outside of pediatric oncology—from the “experts” who should know better, but they don’t. Much like my struggles with non-cancer mothers, non-cancer health care providers don’t understand it either.

The dentist wants to do constant x-rays—and we say no, she’s had enough radiation to her brain. An optometrist is confused by her eye alignment—we have to share her entire story, again. The school nurse is annoyed we refuse the scoliosis check. Another school nurse doesn’t want to clear her for sports after COVID, thinking my daughter might have cardiac dysfunction because of chemo, but she didn’t receive chemo and doesn’t have cardiac dysfunction. Even her pediatrician needs extensive education on what survivorship looks like.

Your cancer treatment history and medical records

Keep a copy of your Comprehensive Cancer Treatment document at home in a safe place, take a photo and keep on your phone, and give a copy to each of your healthcare providers. Also important to keep copies at home of reports (and actual scans) of key x-rays, scans, and important surgeries.

The first thing you share with a healthcare provider is your medical history, which includes your cancer diagnosis and treatment. Many of the 388,501 survivors of childhood cancer in North America do not know the specifics of their treatments. Some do not even know they had cancer. If you don’t have a detailed cancer treatment summary, you need to get one as soon as possible.

The more time passes, the harder it will be to track down the specifics of your treatment. The easiest way to get a record of your treatments is to download a blank copy of Comprehensive Cancer Treatment form used by the Children’s Oncology Group at (http://www.survivorshipguidelines.org/). Take it to the healthcare providers who treated you when you had cancer and ask them to fill in the information. Some clinics also have their own Oncology Summary Template and will complete this for you. This health history will become an indispensable part of your medical records for the rest of your life. You should keep a copy at home in a safe place, take a photo and keep on your phone, and give a copy to each of your healthcare providers. When you leave home to begin your adult life, this document should go with you.

Essential information you need about your cancer treatment. If you do not have a copy of your cancer treatment history, request a doctor or nurse at the institution where you received cancer treatment to write down the following critical information:

  • Name of disease

  • Date of diagnosis and relapse, if any

  • Place of treatment

  • Dates of treatment

  • Clinical trial protocol number and name, if applicable

  • Names of attending oncologist and nurse practitioner

  • Names and total dosages of chemotherapy drugs used

  • Name of radiation center

  • Dates radiation was received

  • Amount of radiation and to what body part (for example, whole body, cranial, pelvis)

  • Date and type of any surgeries

  • Date and type of stem cell transplant(s), if any

  • Any major treatment complications

  • Any persistent side effects of treatment

  • Recommended medical follow-up

  • Contact numbers for treating institutions

Obtain copies of key x-rays and scans. It is also important to get copies of the reports for x-rays, scans, and major surgeries that were part of your treatment. Key reports would include any radiology tests such as chest x-rays or scans (CT, MRI, PET-CT) that show where the tumor was located, including those at diagnosis, at least one or two during your treatment to assess response to therapy, and those at the end of treatment.

Hospitals and clinics may not retain copies of your x-rays or scans or difficult to obtain copies years later or if you move locations. You may be charged a fee for copies, but it is well worth the price for the peace of mind that comes from having your own set of records. If you develop late effects from treatment, these early records are crucial for your current healthcare providers to review.

One area that was difficult for us was coping with the long waits for appointments with specialists and frustration with specialists who dropped the ball. One of our two survivors needed a neuropsychological appointment and it took months to get it scheduled. Once the assessment was complete, the doctor’s office repeatedly forgot to upload the report. We never received documentation of the recommendations and diagnoses.

We also have had issues with our medical insurance cooperating with outside specialists, such as audiology. It took over a year for one of our children to get hearing aids after identifying they were necessary.

Dental care follow-up has also been hard, especially since it is completely separate from medical care. Some dentists have made comments about the number of times the kids go in for routine MRls (right now, three times a year). These comments are stressful because these MRIs are necessary for monitoring for recurrence and we have no control over that.

SurvivorshipComprehensive Follow-Up Clinic Or Survivorship Programs

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