Through Our Eyes at One Retinoblastoma World 2017


Sunday November 12, 2017 | Abby White, WE C Hope CEO


The following insights were shared by parents and survivors on a special wall at the One Rb World meeting in Washington D.C., USA, 9-11 October 2017.

The meeting was attended by 42 medical professionals and research scientists and 46 parents, survivors and other family members representing 13 countries across 6 continents.

These comments were gathered anonymously via the WE C Hope website during September 2017.  The Through Our Eyes display was generously sponsored by Kyriaki’s Retinoblastoma Foundation

Please feel free to share your thoughts in response to any of these comments. We very much welcome and encourage discussion of the many varied and important issues raised here.

Awareness, Screening, Diagnosis and Referral

After our daughter was diagnosed with bilateral Rb at 18 months, we traced the white reflex back in photos to 11 months old. We had no idea about Rb or its symptoms before the diagnosis. This is such a simple sign for parents and photographers to look for, and easy to explain to people. Why doesn’t the Rb medical community do more awareness raising? Why don’t you work more actively to engage the photographic industry in raising awareness? We would have remembered to look for this sign if we had been educated about it. Maybe our daughter would still have both eyes if she had been diagnosed when the white glow was first obvious in our family snaps.

Parent, USA.


What is it with doctors who don’t listen to parents concerns? We saw the white eye glow so early, in photos and with our own eyes in dim light. We went to our family doctor repeatedly. We spoke to the pediatrician and to the breastfeeding nurse. None of them looked in her eyes and all of them said she was fine, even when I showed the doctor the photos. I want to scream now when I think about it, because I had already researched online and I knew in my gut that she had Rb but they just told me I was a neurotic first-time mom. How can it be that parents know their kids have cancer when doctors are in denial about it and accuse the parent of being neurotic rather than doing their job properly? I know my experience is not uncommon. Our kids deserve better care!

Parent, Canada.


I asked our pediatrician multiple times about my son’s squint. At first I thought it was just a lazy eye and I believed the doctor when he said kids grow out of it. But it became more pronounced and my son would not make eye contact or focus on objects. I was sure he couldn’t see, but I’m ashamed to say that for 5 months I let the doctor convince me he was fine – he told me what I wanted to hear. Then we began to see the white glow in photos and after I googled that, I demanded an ophthalmology referral because I knew in my heart he had Rb… He was diagnosed 3 weeks later. Primary care doctors need to understand that squint can be something serious and shouldn’t be dismissed. Our child could have died!

Parent, USA


Why do babies not have routine eye exams at birth and well-child visits? People say they would be more afraid to lose their sight than their hearing, and yet we don’t screen for blinding eye conditions until an age when they are will be too advanced to treat effectively, but we do screen for hearing loss at birth – that makes no sense.

Parent, USA


Currently, most babies with a known risk for Rb are being screened every four weeks, but the medical community knows that tumours grow most rapidly in the first weeks and months of life. I have seen too many infants recently screened at birth and prescribed chemo at diagnosis. Either they are not being screened frequently enough to identify tumours at their earliest stage, or chemo is being prescribed when less aggressive therapies are possible. Also, many babies are being prescribed low dose chemo. Presumably this increases risk of chemo-resistant retinoblastoma, treatment failure and loss of eyes that could be saved. I would like to see significantly more thoughtful care for newborns with high risk for retinoblastoma.

Survivor, UK


We were referred from Alaska to the east coast hospital where our local ophthalmologist trained. We received excellent care and our son is super today. However, the many cross-country flights, EUAs and inpatient stays drained my family in so many ways, especially as the hospital was out-of-network. This was in the days before mass internet access and social media. We re-mortgaged, but with increasing costs, we couldn’t make the payments. I felt I’d utterly failed my family when we lost our home. A year later, we joined the internet age, and I discovered multiple treatment facilities closer to home. Being angry is pointless, the damage is done, but you can prevent this chaos for others. Please, please, if you receive a referral and you know another hospital is more appropriate, tell the family – you could save years of distress. You could save the family, a marriage, even a parent’s life.

Parent, USA.


My wife saw the white first, then my mother. I didn’t believe them, and delayed going to the clinic for weeks. The doctor said our son had an infection, but the drops didn’t work and the white grew bigger. We went to the district hospital, and they sent us to the eye hospital that treats children for free. The doctor was kind when he told us about the cancer, but they only had surgery, not chemotherapy. By the time we got to the hospital that has chemotherapy and doctors who know retinoblastoma, we were more than a year from the first white seen by my wife. The cancer was through our son’s blood. He made a big fight in treatment, but we came to the hospital too late. I have great pain thinking how we talked about the white eye when we did not know it would kill our son.

Parent, Nigeria.


When my child was diagnosed, we were told the staging code for each eye. The doctor explained that the code helped define how affected each eye was and how effective different treatments might be at saving sight. Our staging was the A-E type. I have seen parents and adult survivors on Facebook talk about different types of staging. Many are giving advice about treatment options in response to questions posed by other parents. Can we accurately compare the experiences and outcomes of children whose eyes are staged differently? If not, can you clearly explain that to parents when you give the staging code at diagnosis, and maybe give all the different systems? If you can’t, can you all agree on one system to use? It would surely be safer when parents are trying to make decisions, and better for research.

Parent, Australia.


I am totally confused about how retinoblastoma is staged and what it means. Some people talk about D and E online and some talk about 5B – everyone who has that type seems to have 5B. Retinoblastoma is confusing enough with it being a cancer I’ve never heard of before. I feel overwhelmed trying to understand the different ways you have to describe how bad the cancer is, and if you can’t agree even on how to describe it, how can I trust that as a foundation to make decisions about treatment?

Parent, USA.

Clinical Care and Clinical Research

Our hospital has so many patients on an average EUA day, I often feel like we are a consumable item on a production line, where my child’s feelings don’t matter and our needs aren’t heard. I understand that you have busy clinics and there are only so many hours in the day, but there has to be a better way than exists right now. Come spend some time in the waiting room, in the patient rooms where we wait, see the day from our perspective, talk with us. You can change our experience and you have a responsibility to do so.

Parent, USA.


My son is so much more than his eye that has cancer. He is smart and funny. He loves spaceships and legos and hates drops and pokes. He will tell you all the planets of the solar system if you take the time to ask him. Please remember this when he is asleep in front of you. Please remember that you are treating my wonderfully clever, precious child – all of him, not just his eye.

Parent, USA.


Enucleation was never discussed when our daughter was diagnosed with unilateral Rb. We learned about it from other parents and from reading information online. Our daughter was being treated by one of the top doctors, and we trusted that IAC was the best for her. A year later, the cancer spread to her bone marrow. She had two years of very intensive, very expensive treatment that bankrupted us and nearly destroyed us, but saved our baby. Why were we not told that trying to save her eye was risky? The doctor who treated our little girl is one of the world’s most famous Rb doctors – but she nearly died because of the decisions he made and led us to. This has happened before and since, and we are lucky – our child is still alive. Please stop this from happening. No eye is worth more than a child’s life.

Parent, USA.


Why are so many doctors trying to save unilateral eyes? If the eye has no sight, isn’t it better for the child and the whole family to remove the eye and protect life? Let the child be a child. Let the parents live without fear of the next medical bill and how they will pay for it. Let the family be a happy family. I had bilateral Rb and lost one eye but I can still drive, I have a good job and a great life. Why are you killing kids to save their useless eye when they have perfect sight in the other eye? I thought people had to be so intelligent and caring to become cancer doctors, but what I see right now is stupid, reckless and callous in the extreme. It makes me sick.

Parent, USA.


I want to tell you it is never OK to refuse enucleation if a parent asks for it. My son began chemo because we were told it was the best option, but he was sick all the time and we maxed out our credit cards with all the bills that our insurance didn’t cover. We talked a lot with other parents and after a lot of soul searching and prayer we decided to ask that our son’s eye be removed. We didn’t want him to suffer any more, and we didn’t want the constant fear of relapse haunting us. We thought it was the best decision so we were shocked when the doctors pushed us to continue with eye saving treatment. We ended up going to a different hospital for a surgery that we know was the best thing for our child.

Parent, USA.


Enucleation was the best decision we ever made. My husband and I initially disagreed. He wanted to try to save our daughter’s eye while I just wanted the cancer out of her body. We met with the oncologist and ophthalmologist and they advised us that enucleation was the most prudent choice, outlining the potential consequences of cancer spreading outside the eye. We did the surgery three days later. Pathology found cancer cells trying to spread outside her eye, but not enough to need chemotherapy. Today, our daughter is a vivacious, articulate, successful young woman in the prime of life. I thank God that we didn’t have the options families have today – if we had, who knows how different our current reality might be.

Parent, USA.


I trusted you to give me the information I needed to make the best decisions for my child. I gave all my consents based on your direction, your knowledge your experience. So why did I have to bury my child?

Parent. USA.


After so many years of research, there are a ridiculous number of variations of Rb chemo, and now it’s happening all over again with IAC. I don’t think this happens with other childhood cancers and it’s really unacceptable.

Parent, UK.


My son had bilateral retinoblastoma. We had chance to save some sight but often the medicine supply was exhausted and his chemotherapy was delayed. The medicines are too expensive for the common man. What can we do? We found the cancer early and we attended every appointment as we were instructed to, but it made no difference because the chemotherapy that could treat our son was not there and we could not afford to buy more. The big medical companies that set the prices steal money from people who have none to give, and they steal sight from children whose eyes could be saved.

Parent, Tanzania.


I thought I was so fortunate when my son was diagnosed with bilateral Rb. The cancer was found early and my relatives in America helped us travel there for the best treatments. We were there for eighteen months, but there was no plan for care when we came home. We had many bills to pay, we owed our family money, and we had no more cash to invest in flights or eye exams or treatment. No one at the hospital talked with us about what would happen after treatment, so we had not planned for it. We did not understand relapse was so big a risk until it happened, and because our son was not seen properly, the relapse was very serious. We had no money left to go back to America. We ruined our family here and in America trying to save our son’s eyes. The doctors ruined us by not helping us understand the big picture and plan for care after the end of treatment.

Parent, Bangladesh.


Why are you obsessed with saving eyes? I don’t remember this obsession when my daughter was treated. Where has this madness come from? Sure, removing my child’s eye was a very sad day, but it was also the easiest decision I’ve ever made because it meant she would be cancer-free. I was able to make that decision because of the conversation I had with our doctor. Those conversations don’t seem to happen so easily any more. Why not?

Parent, UK.


Our daughter had IAC but she never saw an oncologist. I think that is totally wrong. Even if the chemo is going directly in the eye, it’s still chemo and you don’t know the effects it is having now or will have in the future. Every child having IAC should be followed by a designated oncologist familiar with Rb, for patient safety and to ensure data about side effects is being captured properly. Can you make that a national rule here in America?

Parent, USA.


Our ophthalmologist and oncologist were based at two different hospitals. The communication between them was really poor. I was often the go-between, informing, co-ordinating and negotiating. It was exhausting, and relied on my fully understanding the information I was conveying. I’m sure at times I got things mixed up. You are a supposed to be a joint TEAM leading my child’s care. Please start acting like it.

Parent, USA.


My child relapsed so many times. We had exhausted all options and were discussing one last round of IAC to try to save the last eye. Our doctor told us there was no risk to life and the chemo was safe. We placed our complete trust in the doctor and went ahead with chemo. It failed and a month later, our child’s eye was removed. That wasn’t devastating enough. Cancer cells were found to be threatening our child’s life and we had to do 6 cycles of chemo. Unfortunately, I’d made the critical error of trusting the doctor so much that I’d told my child the IAC was the last chemo we’d ever need. I still feel so much guilt about this. I wish we had never done that last IAC treatment.

Parent, USA.


How in all sanity do you expect us to understand clinical trials and make sound decisions when you can’t work together to generate or agree on the evidence you are presenting me with?

Parent, UK.


Please include both parents in every consultation, and other relatives too if necessary. With so many communication tools available today, there is no excuse for parents being excluded from the conversation because they are not physically present in the hospital on EUA day. My husband had to work to keep our insurance. I wish he could have been part of the discussions directly with the doctor as it would have made our lives and decisions so much easier, and would have greatly reduced his stress.

Parent, USA.


Most retinoblastoma medical research is done by doctors who treat Rb. I understand that you are the experts in the field, but you don’t always know what is most important to us as parents and survivors. If you want to do truly outstanding research that has real meaning to us, please involve us. You can teach us how research works, show us the black holes and the beacons of light you see. We can teach you how Rb impacts our lives and help you find the important points of focus. Together we can understand Rb more and loosen its grip on our lives.

Parent and Survivor, USA.


I am amazed at how far treatments have come since the early 1980’s when I was treated. Seeing the different options that patients have today compared to the options my mother was given are great.

Survivor, USA.


Is this in development? It seems a lot less toxic – could you update if this silicone cup could be used? https://www.chla.org/publication/silicone-cup-improves-drug-delivery

Survivor, Canada.

[This was presented during the meeting by Dr. Jesse Berry, who confirmed that a clinical trial of the device will begin early in 2018 at Children’s Hospital LA, expanding to several other US hospitals.]


Over 30 years ago I was diagnosed with bilateral retinoblastoma. Little did I know my child would be given the same diagnosis in 2015. From what I’ve gone through to my child’s treatment, not much has changed and treatments are still occurring. Hopefully one day our children can be cancer free and not having to endure a journey of trauma / pain and endless anaesthetics and hospital stays. There are two sides, the doctor’s and the parent’s. You will never understand a journey until you live it.

Parent and Survivor, Australia.

Genetics

I had bilateral Rb, as did 2 of my children. I understand genetic testing is important to my children’s care, that it can eliminate unnecessary exams or improve early diagnosis. I am aware that testing is complex and I know where the best places are for this testing to be done. So why does my doctor not understand this or support me in my request for expert testing? Our insurance wouldn’t pay, and our doctor insisted on sending to a lab that has no experience with RB1 genetic testing. It’s so frustrating – especially as my children could be having unnecessary invasive exams that cost us money too.

Parent, USA.


I had unilateral retinoblastoma when I was 2 years old. Genetic testing found the mutations in my tumor but nothing was found in my blood. When my daughter was born, we checked her blood but nothing was found. The genetic counselor told us this meant her risk for developing retinoblastoma was no greater risk than the general population, but her doctor insisted on continuing EUAs. He told us genetic testing results could not be trusted because there was a small chance our daughter had a mutation that could not be detected with the current tests. I’m sure this is incorrect, but it’s so hard to argue with the expert doctor. Even when you know you are right, you start questioning your logic, your sanity, your responsibility to your child. It can drive you mad. Doctors need to understand RB1 genetics and have eye exam schedules based on results, not opinions.

Parent, USA.


My husband was made blind by retinoblastoma, but we did not understand how this can hurt our children. Our firstborn suffered badly, but the doctors explained to us about the genetics and why eye exams must be done soon from birth. So our next baby we took very early to the hospital. We thank The Good Lord for our education because the cancer was small and we were saved many sufferings again. We know the testing is not here for us, but if we know how the cancer can come to our children, we can be active to see the doctors, and not delay what can be done to save the baby’s life and eyes.

Parent, Kenya.


My child was diagnosed with unilateral Rb at 27 months and had enucleation at our regional children’s hospital 3 years ago. We were never offered a genetics consult of any kind. Everything I know about retinoblastoma genetics, I have learned from Facebook and the internet. When I read the WE C Hope genetics section, I asked our doctor for a genetics referral – which we are currently waiting for. I should not have to ask for this, I should not need to rely on a website to educate me to know what to ask for – it should be a standard piece of care.

Parent, USA.


I had bilateral Rb. My ophthalmologist discouraged my partner and me from having kids due to the genetics and risk to our children. He thought we would be unable to cope as we both have poor sight. Educate about the genetics and the options available, but please never, ever express your opinion or push your prejudices on your patients. Having retinoblastoma and carrying the RB1 mutation is a deeply personal affair. The decision to create and raise a family is not yours to make or influence, or judge in any way.

Parent, USA.


[Added to the wall during One Rb World]

<— I agree so much with the above post —>. In my mid-20s, I was hired at an adolescent home that required a physical as part of employment. The physical was done by the in-house pediatrician, who I had never seen before. When he asked about my eye and I told him, he said “you know you should never have children.” I was hurt and shocked, because I had never heard this. It was irresponsible of this doctor to make the statement, not knowing my history!

As fate would have it, once I went through genetic testing, it was found I did not carry the gene [mutation]! What if I had listened to this doctor?! And – what led this doctor to believe life with Rb is all bad?! It isn’t, we’re survivors!

Survivor.

Psychosocial Care

Please put my child first. Sometimes I think you care more about your schedule and your research. I know that we are just one family of many, but our child is our whole world. You do this all the time but it is new to us, it’s huge and frightening. When you keep us waiting for hours, when you make our princess sit through that wait without her prosthetic eye, when you don’t answer our questions fully, you hurt us and make this experience of our child’s cancer even more painful. If you know there will be delays, keep us informed, we will understand. Let us breathe, let our child have the comfort of her eye, and when we talk, please respect us with complete answers so we don’t have to find out information online or from other parents.

Parent, USA.


I hate when my child’s doctors don’t return my calls or emails. You wouldn’t ignore a mailed letter or a question I ask in person, and I am entrusting my child’s life to you. I understand you are busy, but please respect that when I reach out to you, it is nearly always because the thing I am asking you about is causing me major worry and I don’t think it can wait until our next exam. I am my child’s primary carer, but I’m not trained in cancer care and I need your help to care for my child to the best of my ability.

Parent, USA.


I am an early years educator. I have studied child development and I know that children thrive on routine – it is their foundation builds security, especially in times of uncertainty. As doctors treating children with cancer, I would hope you too have studied some child development and understand this principle, but my experience with my son suggests this is not so. I am frequently frustrated by doctors who trample all over my son’s need for familiarity and routine, who change the schedule or sequence of steps in a procedure, who don’t allow us to sit in a certain way or bring in the toys that give him a sense of control. If you don’t want to work with parents to help the child cope, you shouldn’t be treating children.

Parent, USA.


Child life is awesome. We met the child life specialists on our very first day at the oncology floor, and our daughter has benefited so much from their support. BUT our eye care is done at a different hospital and there is no child life at all there. We have a hard time with drops, taking out / putting in the prosthetic and sometimes the anesthesia. The difference between our tine at the two hospitals is so pronounced and it all relates to the child life and parent support we have through the oncology program. What about the families whose kids don’t ever need chemo? Where do they get their support? I think every eye clinic that treats children for Rb should have child life.

Parent, USA.


I don’t like how some processes are structured so they are efficient for the doctors but cause me and my child unnecessary distress. For example, instead of making us wait for a long time in our private room, could we be in one place with other families? Our children could play together and the time would go faster. You could hand out pagers or send us a text message at a set time before we are going to be seen. Our hospital visits are the only time we have to meet with other families who know what we are going through. Please don’t take that away from us by separating us into individual rooms.

Parent, USA.


I wish there was more support for siblings, especially siblings who had to go through EUAs. I have 3 children. The oldest was 2 when our middle child was diagnosed with Rb. He had 8 EUAs in total and he remembers them all. Our youngest had 2 EUAs before genetic testing came back. Our boys that did not have Rb suffered the same with those procedures as our son who had Rb, especially our eldest, but they were somehow seen as less deserving of support by the medical and cancer community because they were not diagnosed with cancer. Please acknowledge siblings and what they go through – they suffer too!!

Parent, USA.


I would like to ask you to please help newly diagnosed families connect faster with other parents and survivors. We didn’t meet any parents during our first visit because of the way everything happened at the hospital. It took me weeks to come out of my fog and search for “retinoblastoma” on Facebook. Then I found a crazy number of groups and pages and I went from having no connections to total overwhelm. It would have been so helpful if the doctor had given me a little card listing some resources. I would have loved to connect right away with at least one family who could encourage me and give me hope for my child by showing my they had come out the other side. I felt so desperately alone in the beginning.

Parent, USA.


My son has unilateral Rb and his eye was removed last year. The genetics say his risk of cancer in the other eye is remote. I get the logic of the explanation, but I still fear the cancer coming back in that eye or in another part of his body. I never thought of cancer until he was diagnosed, now I think about it all the time. I know his doctor thinks I am being dramatic but this is still all so new to me, and I see kids relapsing all the time. I’m so scared that will be my son next. I wish the doctor would understand my fear a bit more and acknowledge me instead of just telling me to not worry. I love my son and I don’t want to lose him, I will always worry!

Parent, USA.


My son had bilateral Rb, diagnosed at 4 months old and treated with multiple therapies for 3 years. Two years ago (6 months after treatment ended), he was diagnosed with Autistic Disorder. He’s progressed with many therapies, and now exhibits few of the behaviors that originally led to the diagnosis. I’ve noticed that his OCD, anxiety and acting out increases around hospital visits or when he is sick. I’ve asked the doctors if he has PTSD and not autism, but everyone says he is responding great to the therapies so just be happy. But he isn’t. He still has a lot of anxiety about hospital and medical care, and if he has the wrong diagnosis, we aren’t addressing his real needs. I want doctors to agree that children with Rb can have PTSD, and actively assess children so the ones who need help can get it when they need it.

Parent, USA.


Earlier this year, during a conversation about RB genetics, my mother told me that had genetic testing been available when she was pregnant with me, she would have terminated the pregnancy. What horrified me more than this initial conversation was the discovery that many other survivors had experienced similar conversations with one or both parents. I appreciate that our parents are of a different time, when doctors shared little information and there was scarce family support. Even so, something is truly broken in our care system – retinoblastoma is destroying the bond between parent and child decades after treatment ended. Genetics, families ties, perspectives are complex. Parents of adult survivors continue to struggle and they need support to heal just as much as their adult children and the parents of children in treatment today.

Survivor, UK.

Follow Up Care

I think some doctors don’t do EUAs often enough after the end of treatment, and others do EUAs when they aren’t necessary. My daughter has unilateral Rb and after her 4th IAC chemo we were moved to EUA every 8 weeks. When the cancer grew back we had to do enucleation and I always wonder if that would have been needed with EUAs more often. After the surgery, her EUAs were every 3 months, but I saw some children having them more often after enucleation at other hospitals and that made me fear we’d miss it if the cancer came back again like we did before. If you could all agree on a schedule, there might be more time to see children who need the frequent exams, and fewer children being diagnosed with relapse late, and less anxiety and confusion for parents.

Parent, USA.


I’d like more support and preparation for the transition from EUA to office exams. This is where child life would have been so helpful. My son didn’t like the bright light during the exam and he was so afraid of getting an eye poke. The doctor wanted to return to EUA and I said OK but I think he could have done the office exams sooner with more time and patience from the doctor. We did EUAs for another 3 years after the first failed office exam. I wish I had pushed harder for more help because I’m sure a little bit of effort would have been enough and saved everyone a lot of time and stress overall.

Parent, USA.


I talk to so many parents and survivors from all around the world and there is so much variation about who gets MRIs. I’d like to know who is supposed to get them, when, how often and what exactly are you looking for at different stages of the Rb journey, including for me as an adult survivor.

Parent & survivor, Canada.


We were treated at a number of hospitals, including our local children’s hospital, a regional ped-onc center, and 2 Rb centers for different specialist therapies (one of which is spread across two hospitals). Now that we’re done with treatment, no one wants to take the lead on ongoing care and we feel very vulnerable. We don’t know what we’re supposed to do next.

Parent, USA.


During our son’s treatment, we moved cross-country with my husband’s work. We decided to complete treatment at the original hospital for consistency and transfer to a leading Rb hospital close to our new home for follow-up. That would save us $$$$ in travel and be so much easier to attend. So imagine my dismay when the doctor refused to see my child. Was he cross that we didn’t immediately transfer care? How big of an ego do you have to have to make a decision like that? We learned a lot about the doctor from that response and continued our cross-country travel at great expense. I think about what we would have done if we didn’t have the ability to do that.

Parent, USA.


I am 24, My last Rb treatment was 19 years ago but I still say “I have retinoblastoma”. My son’s doctor tried to correct me when he heard me say this one time. He doesn’t understand. Sure, the cancer in my eyes is gone, but I have an artificial eye and poor sight in my other eye, and I live with long term and late effects of treatment every day. I don’t feel like a survivor yet. I’m still in the battle most days. I still live with retinoblastoma, it hasn’t left me. That’s why I say “I have retinoblastoma”. Please don’t belittle my struggles by trying to correct me or telling me I am wrong.

Survivor, USA.


I know about the risks for children who had retinoblastoma, and that exposure to radiation like routine x-rays is not recommended. My child’s dentist insists on taking x-rays. He does not understand or believe me. How can I convince him I am not being difficult and mad?

Parent, Malaysia


My daughter was diagnosed hereditary bilateral retinoblastoma at 3 months. Now she has chemoreduction, and laser to save both eyes. I am pleased with all the treatment except the eye hospital requires we do x-ray before EUA and laser. It is their procedure. I avoid regular x-ray because I know that it is risky for secondary cancer. My girl is hereditary. I don’t want to her give repeated x-ray. This is unnecessary for her.

Parent, Vietnam.


I have several complex medical conditions that are almost certainly effects of the radiotherapy I had for bilateral Rb when I was a baby. Apparently I’m the only one, although I’ve met people online with individual diagnoses similar to mine who had Rb. I’m so frustrated that no one seems to know how to help me. No one seems to be keeping track of complex late effects in Rb or the attempts to manage them. You pay so much attention to the little ones, but when treatment is done, we are thrown out to fend for ourselves. Please stop treating us like trash when we grow up. I want to live long and live well. I need your help to do that.

Survivor, USA.


As a survivor of bilateral Rb, I am well aware of my secondary cancer risks. I have lost friends to other cancers, that I grew up with or met online. Every time I hear of someone who has another cancer, I think it could be me. I worry that me and my doctor will miss the warning signs and that it will be found late like so many Rb survivors I know. I would feel better if we could have regular scans or blood tests or something that would help us find the cancer early. Knowing my risk and not being able to do anything about it is heavy.

Survivor, Australia.


Thank you for all you do. The only thing I wish I heard from more is a cohesive treatment plan. We get the immediate of eye exams and MRIs but what about vision screenings, things we should be doing or monitoring to protect our child’s future health, people to talk to about integrating our child in a school environment and all of that.

Parent, USA.


The doctors who take the time to get to know their patients and develop a professional relationship with them make everything so much less painful. Plus, it helps us patients to feel more comfortable asking the questions we have. Please take that time don’t rush through and overbook yourself. We understand emergencies come up, but that is different and in that case just be honest and say that is what happened.

Survivor, USA.

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