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Ending treatment for retinoblastoma is, for many families and patients, a time of great joy. It is associated with "success" and with relief at no longer having to endure the many treatments and intense schedules that have developed. Many families also experience gratitude for having "made it through and survived."
At the same time, families face a new set of uncertainties. There are new requirements for medical monitoring and adjustments to a "new normal" life. And now that active treatment is ending, the hospital staff and the other families fighting cancer who have become essential support are no longer involved on a regular basis.
Different families react differently to this stage, focusing on the joy, uncertainty, sense of abandonment, or some mix of emotions. Even members of the same family can find themselves reacting differently to the end of treatment. Children, particularly younger children, rarely experience anything other than joy at being done with treatment, while parents often have concerns about how best to monitor and care for their child on their own.
One of the most common reactions to ending treatment, particularly for parents, is a fear that the cancer will come back. This happens because while in treatment, there was a protocol, medication was given and active therapy took place, as did frequent monitoring. Without the formal therapies and frequent testing, parents may feel they are not actively fighting the disease. It is important to remember that treatment has ended and monitoring has been reduced based on experience that it is now safe to do so.
The First Month off TreatmentTwo to Six Months off TreatmentSix to Twelve Months off TreatmentOne Year off Treatment and BeyondYoung Adults Transitioning to Adult-Focused CareLong-Term Follow-Up Care
The late effects will be different depending on whether your child was treated with enucleation (surgical removal of the eye), radiation therapy, chemotherapy or a combination of these therapies. Contact the ophthalmologist and/or oncologist who treated your child’s retinoblastoma to learn more about late effects that may be most relevant to your child. You should also consult your child’s current primary healthcare provider.
There are a couple of very important resources that you should be aware of as the parent of a survivor of children’s cancer. The Childhood Cancer Survivor Long-Term Follow-Up Guidelines is a comprehensive set of healthcare screening guidelines designed for use by health care providers. In addition to the guidelines for healthcare providers, there is a series of Health Links that contain important information for patients regarding their long-term health. These Health Links cover a wide range of topics to assist patients in managing their ongoing health care. Your healthcare provider can review them with you.
Cataracts: Clouding of the lens of the eye.Enophthalmos: Sunken eyeball within the orbit.Keratitis: Inflammation of the cornea. Keratoconjunctivitis sicca: Inflammation of the cornea and the conjunctiva due to dryness.Lacrimal duct atrophy: Shrinking of the lacrimal duct, which drains tears from the eye.Optic chiasm neuropathy: Damage to the nerves that send visual information from the eye to the brain.Orbital hypoplasia: Underdevelopment of the eye and surrounding tissues.Retinopathy: Damage to the retina. Painless vision loss is the major symptom of retinopathy. Telangiectasias: Enlargement of blood vessels in the white part of the eye.Xerophthalmia: Scarring of the tear glands.
Scarring and visual problems can occur in patients treated with local therapy to the eye, such as laser, heat or cryotherapy, or chemotherapy injected into the tumor area. These are defined based on the amount of treatment received and the location of the tumors in the eye.
It’s important to protect your eyes from further damage. Some ways to do this are:
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