7 Ways Retinoblastoma Families and Survivors Experience Survivor Guilt – part 1


Monday June 6, 2022


The life-changing experience of retinoblastoma can weave a legacy of survivor guilt that may affect anyone in the family – child and adult survivors, siblings, parents, grandparents, and others.  WE C Hope CEO and Rb Survivor Abby White highlights the many ways in which family members experience survivor guilt, and the potential impacts during treatment and throughout life.


This is the first instalment in our Survivor Guilt series.

In parts 1 and 2: 7 Ways Retinoblastoma Families and Survivors Experience Survivor Guilt, we describe a wide range of experiences, some of which you may relate to. 

Part 3: Understanding Survivor Guilt explores causes and risk factors, and the emotions that fuel survivor guilt.

Part 4: 8 ways to heal Survivor Guilt offers practical solutions to move through and beyond these destructive feelings.

Guilt is a very difficult subject for the individual and those who love them.  Avoiding thoughts or conversation about it is a natural protection mechanism, but this also prevents release and healing, and stifles research that can improve care.  We hope this series will help everyone in our community feel more able to acknowledge and talk about survivor guilt, and find a path to healing.


Guilt for surviving when others we have known and loved did not. Guilt that we won the genetics lottery and do not have the lifelong consequences of RB1 mutation, while our friends do. Guilt that we passed the mutation to our child. Guilt for having some sight while others have none. Guilt that our parents’ relationship and our siblings’ childhood were ruptured because of us. We carry too much guilt… Image to the right of the text shows a man wearing a charcoal grey jacket sitting on a bench. He is facing away from the camera, looking out over a deserted beach and a bleak, grey seascape.

Letter G from our 2019 Alphabet of Hope, which captured experiences and reflections from survivors of #LifeBeyondRb, and motivated the writing of this blog series.

Introduction

As childhood cancer has become increasingly curable over the last fifty years, attention has slowly turned to the experiences of survivors and our families during and beyond treatment.  Like cancer and its treatment, the psychological impacts are complex, needing special research and care.

Survivor guilt is one subject little discussed within research circles or our own survivor and family community, though it affects the majority of survivors, parents, siblings and other relatives in multiple ways.  When we share feelings of survivor guilt, they are frequently belittled and rarely understood.  Most often, we are simply encouraged to appreciate the life we have, which subtly reinforces the (false) message that survivor guilt is shameful, and should not be discussed.

What Is Survivor Guilt?

At its core, survivor guilt is defined as deep feelings of guilt that occur after surviving a life-threatening, traumatic event when others did not.  This usually begins when the person feels responsible for the traumatic event, for their role in the outcome, or any loss arising from it. The person may feel they did not do enough to help the other people impacted by the event, leading to a low sense of self-worth.  This guilt will likely be magnified if the person believes they could have prevented the situation entirely, or positively changed the outcome.

Survivor guilt is a common reaction to life-threatening events, and is a symptom of post-traumatic stress disorder (PTSD).  This is the basic definition, but the reality is much more complex and nuanced.

Survivor guilt is commonly misunderstood to be a single emotional reaction to the experience of living through an event in which others died.  However, it appears in various guises along this retinoblastoma journey, from soon after diagnosis, and throughout our lives.

Below I discuss the most common sources of guilt I observe in our retinoblastoma community, and their possible consequences.  I draw on personal experience, and years of conversation with fellow survivors, parents, siblings, and grandparents.

1. Having an Easier Cancer Journey than Others

This kind of survivor guilt has many facets in retinoblastoma.  Indeed, what constitutes “an easier journey through retinoblastoma” is itself up for debate when considering various survivor guilt experiences of both parents and survivors.

Parents

The worry that cancer may recur in the unaffected eye is an almost universal experience. Some parents of children with unilateral retinoblastoma feel guilty for raising their concerns, especially if their child had surgery alone. They describe feeling an expectation within and beyond the retinoblastoma community that they should be thankful their child has excellent sight in their remaining eye, and move on.

When children have early stage cancer (whether unilateral or bilateral), parents often express guilt that their child’s eye has a chance of being saved when the eye of a friend’s child must be removed to protect the child’s life.   Parents almost universally describe feeling guilt when a friend’s child experiences relapse, while their child’s eye exams remain stable and clear of new active cancer.

Parents are thankful beyond measure for their child’s good outcome. But reality also brings into sharp focus the overwhelming weight of chance, and awareness that they could not control the outcome for friends and strangers they care about.

During systemic chemotherapy, parents frequently report feeling guilty that their child is so well, compared with children receiving treatment for other cancers.  Some describe feeling guilty for accessing facilities and services at the paediatric oncology unit, feeling that their child is “not sick enough” to justify their access, while knowing their entire family needs those services to support physical and mental wellbeing.

This sentiment is echoed by parents who seek access to childhood cancer services when their child is not receiving treatment through a paediatric oncology program.  They desire to help their child, themselves as the caregiver, and their wider family, and the best psychological supports are centred on paediatric oncology care. Yet the sense of not quite belonging, because of the cancer’s location and the manner of its treatment, can lead to intense layers of guilt.

Adult Survivors

Some survivors express guilt for their own painful emotions and need for support when they perceive that they have more sight than others, and fewer long term complications and/or side effects.  Particularly when they have better access to treatment, support, and / or lifelong follow-up care.  Many describe feeling guilty about being uncomfortable with their prosthetic eye when others have issues with fitting and socket health, or no prosthetic at all.

Retinoblastoma has lifelong cancer risks for individuals with a heritable RB1 mutation.  Some survivors feel guilty about having earlier and simpler second cancer diagnoses, with comparably straightforward treatment.  Survivors are increasingly well connected through social media, and we thus have more friends who experience multiple second cancers with complex, prolonged treatments, and / or significant side effects.

Family members with the same RB1 mutation often experience diagnoses with different degrees of complexity, different treatment pathways, and different visual, physical and mental health outcomes.  Related survivors sometimes experience more complex guilt, questioning how they can have the same genetic change, with a better outcome.

Comparison Hinders Care

Survivor guilt that involves the comparison of treatment pathways, and individual’s perceived value of their feelings, can prevent parents and survivors from requesting and accessing support, both in the real world and in social media groups.  When we feel we don’t belong, or that our questions, thoughts, and feelings are wrong, inappropriate, or not justified, we are much less likely to speak up and ask for information and help.  This can lead to families and survivors being excluded from vital psychological support, and lacking critical knowledge to support ongoing medical care.

2. Outliving Others

Retinoblastoma is highly curable, and the death of a child from eye cancer is rare in developed countries.  But whenever and wherever in the world it happens, that child’s loss rips through the collective heart of the retinoblastoma community surrounding their family.  Both virtually, and among the families who have walked together in the physical world through the twists and turns of treatment.

As social media continues to shrink the world and connect us with one another, our awareness increases of the suffering and loss families experience.  While survivors are more aware than ever before of the true impact second cancers have, with every friend lost from our global community.

Parents and survivors often talk of feeling guilt when thinking of fellow survivors/parents who died, or whose children died – whether they were personally connected or not.  Feelings ebb and flow, rising when certain treatments are discussed, or during landmark events such as finishing treatment, reaching a cancer anniversary, starting or graduating school, or the Holiday season. Or when experiencing joyful aspects of daily life, holding the individual or family in the heart, a painful awareness that they will never have this joy.

A particularly complex form of core cancer survivor guilt is experienced by the parent who outlives their child with retinoblastoma or second cancer, the sibling who outlives their brother or sister, and the grandparent who outlives their grandchild.  Especially when the child had a familial RB1 mutation.

Family and parenting is the heart and soul of life, of creating, shaping, protecting, sending out, and encouraging children of the world.  The death of a loved child, at any age, is utterly devastating.

Deep connections between remaining family members and the child or adult who died has been lost, and there is a sharp, ever-present awareness that the expected natural order of life has overturned.  However irrational the reasoning, many family members – young and old – experience a profound stage of grief in which they question what happened, their role in it, and their ability to change the outcome.

When a family member has the same RB1 mutation as their loved one who died, they may experience additional layers of guilt, questioning how they can have the same genetic change, and still be alive.

A red butterfly is reflected in water as it hovers above, against a pale blue sky.

3. Our Children Inheriting the RB1 Gene Mutation

Retinoblastoma genetics are fertile ground for survivor guilt. Again, it manifests in different forms, reflecting the varied experiences of survivors and their families.

When Babies Inherit Retinoblastoma

When an embryo inherits the RB1 mutation, the baby has a greater than 90% probability of developing eye cancer within their first two years of life.  50% of affected babies develop tumours that are visible on eye exam at birth or earlier.

Knowingly or unknowingly passing the RB1 mutation to a child can cause parents extreme, ongoing guilt – even though inheritance is beyond the individual’s control.  This guilt is often amplified at highly emotive times when the parents are already overwhelmed and drained.  For example, at the child’s birth when the RB1 risk was already known, or discovery of RB1 mutation in a parent during routine genetic testing, at diagnosis, or during critical points in treatment.  This kind of guilt is profound too for grandparents who carry the familial RB1 mutation.

Occasionally, a child’s cancer reveals that a parent or grandparent had retinoblastoma as a child and were never told, or that their known cancer was the heritable form.  Little was known about retinoblastoma genetics even 30 years ago, and poor awareness of genetic risk is common.  People in this situation often feel they should have known about the cancer and RB1 mutation.  Their guilt about failing to protect their child or grandchild can be overwhelming, even if they understand logically that nothing they did or didn’t do caused the cancer.

One can understand that a parent does not choose which genes to pass on, and a child does not inherit retinoblastoma by any action or inaction of their parent.  But finding the way to heart peace when that child is your treasured baby requires great care.  The pain of this survivor guilt can be immense and last a lifetime if not addressed well.

Preventing Retinoblastoma

Many adult survivors choose not to “risk” a natural conception and the 50/50 chance of passing on their RB1 mutation.  They may decide not to have children at all, while others foster or adopt.  Some find fostering and adoption routes are closed to them, particularly when they are single or their partner also has a disability.  This can lead to deep feelings of guilt and inadequacy.

Increasing numbers of survivors express interest in Pre-Implantation Genetic Diagnosis (PGD), a form of IVF in which RB1 affected embryos are identified before embryo transfer, ensuring a baby does not inherit their parent’s RB1 gene mutation. However, the cost is often prohibitive, causing guilt among couples and extended families around access and pressure to take certain family planning paths.

Many couples and individuals who do undergo PGD feel tremendous guilt about the fate of RB1 affected embryos identified in the process of creating their cancer-free baby.  This is also a common reason for not choosing PGD, yet survivors and their partners may still feel guilt about not taking the opportunity to prevent their child’s cancer.

Shaping the Family

Some survivors delay starting a family or having a subsequent child for years while grappling with feelings of guilt about RB1 genetics and the risks of inheritance, and what their own vision and cancer risk as the parent means for the potential child.  The costs, practical considerations, and other people’s perceptions of different routes to parenthood also weigh heavily.  By the time they begin, the chances of success may have significantly reduced, leading to yet more guilt.

Melting over this genetics crumble of survivor guilt is the guilt of not being able to give parents a grandchild, or their present or future partner a child.  And of course having to involve their partner and family in the difficult reproductive decisions associated with retinoblastoma.  Talking with loved ones about the risks, surveillance and treatment process, and potential life-long impacts of RB1 mutation can be deeply painful.

This can be a huge emotional burden and stigma, especially in some families and cultures.  Some survivors abstain from relationships completely, feeling their decision would deprive the potential partner of a family.

Generational Guilt

Parents too feel tremendous guilt that their adult child is unable to become a parent, when they wish to have children and create a loving family.  Many parents walk closely with their adult child, and feel the guilt in waves throughout as the child’s hopes and decisions evolve, and their dreams manifest or fall apart.  Or guilt may come years later.

Sadly, too many survivors describe painful comments from their parents such as “when will you settle down and give us a grandchild?”, or “when you have a child, you could do PGD”, or “we would have terminated, had we known about retinoblastoma”.  Such statements fail to acknowledge the complex and deeply personal implications for the individual survivor who carries the RB1 mutation.  Years may pass before the reality is truly realised, potentially leading to intense parent guilt.

Grandparents often struggle with guilt among other complex emotions when their grandchild inherits a known RB1 mutation.  Some are critical of their adult child’s decision to have a child, remembering their experience of raising a child with cancer.  Blame and anger directed at the adult child or their partner can cause much harmful conflict, especially when the parents (or potential parents) are already under stress.

It is not uncommon for grandparents to distance themselves from the grandchild, ignore the family completely, or become overbearing.  All these reactions cause deep hurt to both the adult child and the grandchild, and the grandparent themselves.

Months or years of fraught or absent communication can generate feelings of guilt carried across all three generations.  Guilt for choosing to waste precious years of a grandchild’s life, disrespecting the adult child’s choices, and not being a present support in the early months and years of parenthood.  Guilt for not understanding the grandparent’s pain and involving them more.  Guilt for causing conflict, by their very existence.

Read Part 2

In this first instalment of our 4 part series on Survivor Guilt after retinoblastoma, we have explored what survivor guilt is, why understanding it matters, and three key ways it affects individuals and families.  In part 2, we will explore four more faces of survivor guilt: the other side of the “genetics lottery”, impacts on family and friendships, and “the hero’s journey”.

Zero Blame! Retinoblastoma is no one‘s fault. We don’t blame our parents, and our families shouldn’t blame themselves. Just as we should not pour blame on ourselves when struggling with life and the effects of childhood eye cancer. Our healing can thrive when we all let go of guilt, shame and regret. Image to the right of the text shows an older man facing the camera embraces a younger man who is facing away from the camera. Both are wearing glasses.

Letter Z from our 2019 Alphabet of Hope, which captured experiences and reflections from survivors of #LifeBeyondRb, and motivated the writing of this blog series.

About the Author

Abby’s father was diagnosed with bilateral retinoblastoma in Kenya in 1946. Abby was also born with cancer in both eyes. She has an artificial eye and limited vision in her left eye that is now failing due to late effects of radiotherapy in infancy.

Abby studied geography at university, with emphasis on development in sub-Saharan Africa. She co-founded WE C Hope with Brenda Gallie, responding to the needs of one child and the desire to help many in developing countries.  After receiving many requests for help from American families and adult survivors, she co-founded the US chapter to bring hope and encourage action across the country.

Abby enjoys listening to audio books, creative writing, open water swimming and long country walks.

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