In most families where a child has retinoblastoma, there will be at least one other relative who has had cancer. Almost always, these cancers occur by chance, particularly in older relatives, and are unrelated to retinoblastoma.
All cancer is genetic in that gene changes cause cells to divide abnormally. However, most often, the gene changes that cause retinoblastoma occur only in the affected child. Nothing anyone did caused these gene changes to happen.
When the Child’s Parent Has a Known RB1 Mutation
Grandparents often struggle with complex emotions when their grandchild inherits a known RB1 mutation from a parent. Expectations and concerns for the family are based on personal experience of raising a child with cancer, or fear of the unknown.
Some grandparents are very critical of their child’s decision to have a child, knowing the risks involved. Blame and anger directed at the adult child or their partner can cause a great deal of harmful conflict, especially when the parents are already under stress. Some grandparents choose to ignore the grandchild completely, which is especially hurtful.
If you are the parent of an adult child who had retinoblastoma, recognize that your recollection of the diagnosis and treatment will be very different from your adult child’s experience. You had probably never heard of retinoblastoma before your child was diagnosed. Information and treatment options were limited, and your child was likely diagnosed at a more advanced stage than your grandchild.
Your child probably grew up with knowledge of her retinoblastoma. She will be more prepared than you were because she has information and better access to support. Also, as the risk was known, your grandchild’s cancer was likely found early, with excellent prospect of saving sight.
Some grandparents feel responsible for the cancer, especially if they too carry an RB1 mutation. Even if you do, remember that nothing you consciously did caused your grandchild to inherit it and develop cancer. This is not your fault, nor the fault of your child or their partner.
When the Grandparent or Parent Has a Previously Unknown RB1 Mutation
Grandparents may feel a profound sense of anger and guilt about somehow being responsible for their grandchild’s retinoblastoma. These feelings are especially acute when genetic testing reveals an RB1 mutation in the parent or grandparent.
Occasionally, a grandchild’s cancer reveals that the grandparent unknowingly had retinoblastoma as a child. Very little was known about retinoblastoma genetics even 30 years ago, and genetic counseling was unheard of. Poor awareness of genetic risk is common in this generation
Grandparents often feel they should have known about the cancer and the RB1 mutation. Their guilt about failing to protect the child / grandchild can be overwhelming, even if they understand logically that nothing they did or didn’t do caused the cancer.
Recognize that strong responses to your grandchild’s diagnosis and the genetic implications of her cancer are very normal. However, it is important to your own well-being and your family that you take steps to prevent negative emotions sapping your emotional energy. Now more than ever, your family needs to focus on positivity and hope.
Read the Medical Care section of this website to increase your understanding of the cancer and treatments available today. If there is a family history of retinoblastoma, treatment options are likely to be very different from the options available when your own child was diagnosed.
If you are struggling with the genetics of your grandchild’s cancer, talk to your child and partner or to your primary doctor. Request a consultation with a genetic counselor, who will be able to help you better understand how retinoblastoma genetics affects your grandchild and family.