Archives of Ophthalmology 2009 (Vol. 127 No. 11) contents page

Fade Fave: Risk of Cataract Extraction Among Adult Retinoblastoma Survivors

Fade Skinny: The objective of the study was to investigate the risk of cataract extraction among adult retinoblastoma survivors. The results emphasize the importance of ophthalmologic examination of retinoblastoma survivors who have undergone radiotherapy. The risk of cataract extraction in untreated eyes with retinoblastoma is comparable with the risk of the general population.

(NHS Athens is required to access this article online)

Please check out this amazing tribute to one of our Rb children — Leah — by her mother.

For those who may come across this as a newly diagnosed family, there are pictures of Leah at all stages of treatment. I think most of us can say that these pictures represent a very accurate sense of what you might go through/are going through.

Thanks to Leah’s mom for allowing us to post this on our site!

Medicenter… Medicina para la vida!

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Retinoblastoma is a common eye cancer which usually affects young children. You can usually tell if your child has Retinoblastoma if their photographs turn out showing a visible difference in one eye. Unfortunately many parents do not catch the early signs of the condition as they simply do not know what they are looking for.

What exactly is Retinoblastoma?

As mentioned, Retinoblastoma is the most common eye cancer in children, however it is still quite rare and it only affects around one in every 20,000 births. If caught early, it is possible to treat and cure the child of the cancer; however it can lead to the loss of the eye, or in severe cases, even death. Luckily, most cases found are cured and the survival rate is currently around 96%. Just under half the cases of Retinoblastoma are inherited, so if there is a family history of the cancer, it is best to get your child checked out.

The cancer starts by a tumor developing behind one of the eyes. In some cases tumors can develop behind both eyes and that usually results in the child having their eyes enucleated. However, this is extremely rare and usually the sight can be restored if caught early enough.

The Symptoms and What to Look Out For

As many parents do not know what to look out for in their child, it is often really difficult for them to diagnose Retinoblastoma. Usually the most common symptom of the disease is an abnormal appearance of the pupil, which as mentioned earlier is often detected in photographs. Any change in the appearance of the eye could be a potential symptom so you should always have it checked out by a doctor.

The Treatments Available
If you find that your child does have Retinoblastoma, it is important to know that there are a lot of treatments available these days in order to cure it. Early detection is better and it often leads to the child having their vision completely repaired. However, treatment varies depending upon how big the tumor has grown and how far the cancer has actually spread. Even if the tumor is removed, sometimes it is too late to save the childs sigh and the eye may need to be removed.
Some of the treatments available include:

Chemotherapy

Chemotherapy is often used to treat Retinoblastoma and it involves injecting the chemotherapy drugs into the body in order to kill off any cancer cells. In the case of a child with Retinoblastoma, the drugs are injected directly into the fluid which surrounds the brain.

Laser Therapy

This can be used as a treatment either on its own, or in combination with chemotherapy. It basically involves shining a strong laser beam through the dilated pupil, or the actual wall of the eye, into the cancer. It is a non invasive treatment and it is either done through general or local anesthetic.

External beam radiotherapy

This treatment is usually used when Chemotherapy has not worked. Retinoblastoma is really sensitive to radiation and so this treatment frequently works. The child is exposed to a certain level of radiation on an outpatient basis over five days a week. This is usually continued for around a month and the tumor generally reduces in size over time.

Surgery

This treatment is used if the tumor has caused irreparable damage to the eye and if the tumor has reached a dangerous size. It generally involves removing the tumor and removing the eye. This is only usually done as a last resort and if the surgeon cannot save the eye without risking the childs life.

Overall if the childs eye does have to be removed they will receive an artificial one which is as identical to their original one as possible. The child will make a full recovery from surgery and they can go on to lead a fulfilling and happy life. The main thing to look out for with your child is any changes within the eye. If you do spot anything unusual do not be afraid to consult a doctor. After all, it is better to be safe than sorry!

Happen to be watching “House” tonight on FOX, and the “patient” is a retinoblastoma researcher! Hurray! Way to get some exposure! (although, one of the doctors makes a comment that he “saw a 4-year old retinoblastoma patient on his oncology rotation” — which, we all know that, more likely, a child is around 2 years old!

Retinoblastoma residif (koleksi PPDS Mata UA)

"Mata kucing" (koleksi PPDS Mata UA)

Jika ada anak kecil yang tampak bermata mengkilap seperti mata kucing pada malam hari, awas jangan dikira itu biasa. Anda harus waspada terhadap penyakit tumor ganas  mata yang disebut retinoblastoma. Maka segeralah periksakan ke pelayanan kesehatan khususnya dokter spesialis mata yang terdekat. Karena jika secara dini ditegakkan diagnosisnya maka harapannya  semakin baik. Nah kalau dibiarkan maka anda bisa melihat foto sebelah kanan no.2 ini adalah seorang anak yang sakit retinoblastoma sehingga harus diangkat bola matanya. Kita semua pasti mencintai anak-anak kita, maka waspadalah terhadap kesehatan mata mereka.

Hi all! The dates for Camp Sunshine’s Retinoblastoma week have been announced. It will take place on June 14-19th. For more information, go to www.campsunshine.org. Don’t miss out on this opportunity to meet other Rb families and kids!

So sad to report that Ben Underwood has finally earned his wings and entered into Heaven. We pray for his family, his friends, and all those who he inspired during his short life here with us.

Ben was diagnosed with bilateral retinoblastoma when he was young. He gained fame when news that he had been using echolocation caught interest of the general public as well as scientists and doctors. Ben navigated his world without the use of  a white cane (which is controversial to some). Many parents admired his mother, Aquanetta’s, approach to parenting — which was to never allow Ben to be treated as if he were disabled. She pushed him, and he thrived. Ben’s recent diagnosis and passing reminds us all that cancer is cancer; illness is illness; and that while we experience periods of “wellness”, the fear sometimes never leaves us.

http://www.benunderwood.com/

The link to his website also has a donation button to donate directly to his family.

Ben, thank you for inspiring so many people with your courage, your faith, and your belief that all things are possible. We will never forget you.

Ben Underwood and his mother, Aquanetta Gordon

A few years ago, my child was diagnosed with cancer. Thankfully, she was treated with very aggressive therapy became cancer free. But, that doesn’t mean we don’t think every single day about cancer. Every headache — is it a tumor? Every stomach ache — is it a tumor? Every fever — is she sick again? For my friends with kids who are healthy, a headache is a headache, a stomachache is a stomachache and a fever is a fever. While we no longer run to the oncologist when this happens, I end up somewhat sleepless at night wondering if cancer cells escaped chemotherapy. I wonder if some wacky strain of radiation-resistent mutant cell managed to exist, find a new playground and spread.

People have even corrected me at times – “J doesn’t have cancer. She H-A-D cancer.” Technically, yes. But, my family and I continue to feel the repercussions of it. We never stop worrying.

Not too long ago, a wonderful news story broke about a phenomenal young man named Ben Underwood. At the time, he was about 13 years old. He was blind from eye caner and developed the unique skill of echolocation – the use of clicks and “sonar like” listening to figure out where he is. He never used a white cane. He never used a guide dog or any assistance. Scientists were fascinated by his ability. Cancer kids heard of Ben and articulated how COOL he was! Parents embraced his mother, Aquanetta, for her insistence that her son was not disabled in any way.

Recently, news broke again about Ben. Unfortunately, Ben has developed cancer in the rest of his body — about 10 years after he had initially been “cured” from cancer. According to the article, Ben is getting weaker by the day, and he will likely be on this Earth for weeks… months. Ben has told his mother that he is ready. He will go to sleep and wake up in Heaven.

The story breaks my heart, of course, for the many reasons that others are so touched by his life. But, as a cancer mother, it brings back a sense of reality that we will never stop worrying about every headache, stomachache and fever. That we know there may be a day when Tylenol or a good ice pack will not be enough.

Our prayers are with Ben and his family. We know that God has chosen a beautiful angel on this Earth and in Heaven.

An RBNE family will be speaking at a fundraiser for Camp Sunshine on Friday, Dec 5th at Southern New Hampshire University. If you are not familiar with Camp Sunshine, please visit their website. This is an amazing opportunity to meet other Rb families from all over the country! It was a huge moral booster for so many of us, and we often point to our Camp experience as the turning point in our lives!

Retinoblastoma adalah salah satu penyakit kanker primer pada mata yang paling sering dijumpai pada bayi dan anak. Penyakit ini tidak hanya dapat mengakibatkan kebutaan, melainkan juga kematian. Di Negara berkembang, upaya pencegahan dan deteksi dini belum banyak dilakukan oleh para orang tua. Salah satu sebabnya adalah pengetahuan yang masih minim mengenai penyakit kanker pada anak. Hal itulah yang mendorong Yayasan Onkologi Anak Indonesia dan Departemen Mata FKUI-RSCM untuk mengadakan seminar dengan tema “Kelainan Mata dan Kanker pada Anak” di Jakarta.

Dr. Julie Dewi Barliana, salah satu pembicara, menyampaikan tentang pentingnya deteksi dini kelainan mata pada anak. Beliau menyebutkan bahwa 5-10% anak usia prasekolah dan 10% anak usia sekolah memiliki masalah penglihatan. Namun seringkali anak-anak sulit menceritakan masalah penglihatan yang mereka alami. Karena itu, skrining mata pada anak sangat diperlukan untuk mendeteksi masalah penglihatan sedini mungkin. Skrining dan pemeriksaan mata anak sebaiknya dilakukan pada saat baru lahir, usia 6 bulan, usia 3-4 tahun, dan dilanjutkan pemeriksaan rutin pada usia 5 tahun ke atas. Setidaknya anak diperiksakan ke dokter mata setiap 2 tahun dan harus lebih sering apabila telah ditemukan masalah spesifik atau terdapat faktor risiko.

Pada tahap skrining dapat ditemukan beberapa tanda awal retinoblastoma antara lain, manik mata berwarna putih (lekokoria), mata kucing, dan mata juling. Bila tidak segera ditangani, sel kanker yang awalnya berada di dalam bola mata akan terus tumbuh ke luar bola mata dan jaringan sekitarnya. Akibatnya mata tampak menonjol (proptosis).

Pemeriksaan sederhana menggunakan lampu senter dan oftalmoskop di tingkat puskesmas dapat membantu skrining retinoblastoma secara umum. Apabila ditemukan kelainan, anak harus segera diperiksakan ke dokter spesialis mata atau rumah sakit untuk pemeriksaan dan penanganan lebih lanjut. Penanganan yang terlambat selain dapat menimbulkan kebutaan, juga menyebabkan sel kanker menyebar ke bagian tubuh lain, seperti sumsum tulang dan otak.

Sementara itu, Dr. Rita S. Sitorus, PhD, Sp.M(K) menyampaikan bahwa selain pemeriksaan oleh dokter spesialis mata diperlukan juga serangkaian pemeriksaan penunjang untuk menegakkan diagnosis retinoblastoma. Pada stadium lanjut atau pada keadaan tertentu, perlu ditambahkan pemeriksaan rontgen, pemeriksaan sumsum tulang, dan pemeriksaan cairan otak. Selanjutnya dilakukan operasi pengangkatan bola mata, dengan atau tanpa kombinasi kemoterapi atau radioterapi. Umumnya semakin lanjut stadium penyakit, umumnya semakin kompleks dan mahal pengobatannya. Di lain pihak, angka keberhasilannya justru semakin kecil. Setelah operasi pengangkatan bola mata, biasanya dipasang mata palsu (protese mata) sehingga secara kosmetis penampilan pasien tetap baik. primz

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For the past few days, I’ve been trying to find information about how to get my daughter’s blood tested for genetics for Rb. Many parents have had the opportunity to have their child’s tumor tested, but our tumor was not viable 3 years ago to test (or at least we haven’t ever heard anything).

At the encouragement of many Rb parents, we have been trying to research getting my daughter’s blood tested. And, geez — you’d think I was trying to find the secret of life or something. It has been nearly impossible to try and find anyone who has done Rb testing, or to find anyone who knows anything about Rb testing. I’ve felt like the “it” person in that game where everyone knows the “secret code” but you, and you’re job is to find out. Very frustrating.

So, as a “seasoned cancer mom”, I thought this whole process would be a quick few phone calls. It hasn’t been. I’ve spent more than a few days, hours, and pads of paper scribbling down notes/names/numbers of people who never call me back.

But, as the title describes, sometimes it just takes 1 person to go the extra step and help you. That person is my friend, Marie. Thanks to Marie, she took the time to find out some info for me, and within minutes, I was on the phone with Children’s Hospital scheduling an appointment for my daughter.

Sometimes it takes 1 person with an answer, an additional question, and a caring heart to help. Hopefully RBNE is that “person” for you if you are struggling with a new retinoblastoma diagnosis.

You bet!  With a red eye photo you can identify retinoblastoma, which is a highly malignant childhood eye cancer affecting infants and children up to age 5.  It can spread to the brain if left untreated, causing blindness and even death.  I have done this a few times with my son ever since I read about it.

Red Eye Pictures...looks normal!

I’m sure everyone knows how to take a red eye photo–working in a lab, I know I explained how NOT to do it often enough!  Dim room, flash close to the camera…of course when you are trying to get a red eye shot, you can’t.  The flash can make the tumor(s) visible in photographs, appearing as a white hue rather than seeing the typical red eye effect of a normal, healthy eye.  You know when eyes are different angles the reflection back can differ in each eye, but this is pretty distinctive. Here are some sites I found with more info, and some samples…

• http://www.msnbc.msn.com/id/26437081/
• http://www.retinoblastoma.net/
  • (BROCHURE: http://www.retinoblastoma.net/brochures/rbi_earlydetect.pdf)
• http://retinoblastoma.com/retinoblastoma/
• http://www.cbpc.ca/ClickNews0803-1.pdf (see page 3 in this pdf)

(posted by Rachel)

Trivial information and internet communication make for bandwidth-wasting and brain-numbing exchanges — friendly, maybe, but your spouse will consider filing papers.

Until it saves your kid’s life with a dramatic diagnosis of a deadly disease across an ocean.

Look at the BBC report on the toddler in Florida whose life was saved by a transatlantic, e-mail suggested diagnosis.  Print story from BBC, here.

A toddler in Florida has been diagnosed with cancer after a Manchester woman saw early warning signs in a picture.

Madeleine Robb, from Stretford, who has never met her pen pal, spotted a shadow behind one of Rowan Santos’s eyes on pictures from her first birthday.

She then e-mailed her mother Megan advising her to get medical help.

The toddler was diagnosed with an aggressive form of cancer – Retinoblastoma – and underwent an operation and is having chemotherapy.

The two mothers became friends on an internet messageboard after their children were born on the same day.

But when Mrs Robb saw the pictures she said she knew something was not right.

Tip of the old scrub brush to Moments in Time.

[FireFox 3 doesn't support the old video capture of VodPod; my apologies for sending you to the video, though sending someone to a BBC site is probably a great act of education.]

Just wanted to re-post another Welcome message for the people who are finding the Retinoblastoma New England site due to the awareness that the Today Show and other media have raised for Rb.

Feel free to surf around this site and learn more about retinoblastoma, our own personal story with this eye cancer, and for some words of encouragement.

Unlike the child who was diagnosed in Florida, my daughter Joli was diagnosed at an eye exam at age 2. By then, her tumor was at stage 5B, which meant it was at the base of her optic nerve. We can’t imagine what another few days or weeks would have done….

The leukoria, or white reflective glow, is definitely the first sign that most people see. Though, by the time there is a noticeable leukoria, it’s usually because the tumor is so large.

As the first grandchild, and our first child, Joli was photographed at every turn! And, now that we know about retinoblastoma and leukoria, I’ve combed through every single photo we had ever taken over the first 2 years of her life. What’s difficult is that the conditions almost have to be “just right” in order to see the leukoria. In some photos, there isn’t leukoria — and in the next photo, there it is, large and in charge.

So, welcome to the Retinoblastoma New England site! Please drop me a comment if you have any questions or need some support!

Peace,

Liza

The following is a poster in Spanish that was produced by the Daisy Eye Cancer Fund (based in UK) with Joli as the poster child. Please visit their site, or print this photo to be placed in your office, lobby, etc. We’ve seen the power of knowledge, as highlighted recently in the press, and know that awareness is how we will save sight and lives!

Everyone we meet, we meet for a reason.

Woman saves baby’s life — by e-mail – Health – TODAYshow.com

Jag skrev denna text till en stödlista för familjer med en starkt ärftlig form av cancer. En god vän tyckte den dög att läsas även av andra, så, varsågoda!

“Sometimes on this list, I feel there is too much detailed information on increased risks. Fears aroused all gets related to the Retinoblastoma. There is a risk of becoming overly focused on linking all possible and impossible dangers, problems, and nuisances of life to that little section of the DNA that was accidentally damaged…

How we mentalize risks is really interesting. People always tend to perceive dangers that are less likely to happen, but more dramatic, as more scary. People are more afraid of flying, than driving a car, even when told that the risk of injury or death is a LOT higher in the car than in a plane.

Invisible dangers are also things that cause us to worry way too much. I studied to become a researcher in cancer epidemiology, and marveled at the number of new studies performed every year to show things we already know:

Not eating varied food is bad for you. Being exposed to toxins is bad for you. Not exercising, not taking your prescribed medicines, and not taking care of your body, is bad. Not getting enough sleep: bad. Being happy is good. Having friends is good.

We all know these things. We also know that most accidents and diseases are not within our control. It is (please forgive me, those who have a very thorough belief that a higher power has detail control of totally everything) a matter of luck and bad luck, or more scientifically: random distribution, or chance…

A random number of people gets hit by cars, gets diabetes, fall of bikes, loses a job, have a cold develop into a more dangerous condition. It could be me, it could be you.

People on this list know that they or their loved ones (or just related ones – we don’t need to love them) have a genetic disposition to get cancer more easily than others. All other individual factors remain unknown. Today, one person in three dies from cancer. Almost the same number gets cured. So: the life time risk of getting cancer is higher than one in two. For people with an RB mutation, the risk is higher, and tumors occur at younger ages, but yes, you can get a cancer totally unrelated to the RB mutation and the treatments anyway, just by chance.

None of us knows our life prospects. We do know for sure that we will die. Each and every one of us. We know that most of us will have ailments, sorrows and diseases before we die. Most of us will also get a share of happiness and health.

So:

There was RB. Did we need to treat? -Yes.

Were there side effects? -Most likely.

Can things be worse now because of my RB? -Yes, a bit more for a few risks in life, but, for almost all other risks: Not at all!

Can things be worse now because of my treatments back then? -Again, Yes, a bit more for a few risks in life, but, for almost all other risks: Not at all!

Do I need to look after myself in order not to get cancer?

- It does have some effect, yes. It has for all of us. Still: There is NO way to guarantee that you will not get cancer or stroke or Alzheimer’s. These things happen! Cancer happens from breathing. From eating. From drinking. From growing. From healing wounds. Simply put: From being alive!!!

You can take care of your body and soul from liking life and wanting to enjoy it. Making sure you eat food that tastes nice and is varied.

Need you avoid all foods that make headlines in the news? – Nope. Headlines are for selling papers. They are not balanced medical advice.

Need you take supplements to stay healthy? – Nope. Supplements are for making billions for producers.

So, what is my point?

Hm. That life is troublesome and dangerous but worthwhile. That worrying can’t add a single day to your life, but darken it a whole lot. That bad things can and will happen.

So: Follow the basic advice on a healthy life as much as you think is reasonable to keep the joy in living right now. Try to avoid pure known toxins where they are totally obvious: tobacco, drugs, solvents, etc. But don’t worry too much about a small possible residue of whatever chemical in every single produce. Food IS poisonous, but we are made to handle most of it.

Move your body in joyous ways! Dance and run, play with kids. But don’t make training a God.

Eat when you are hungry, drink when you are thirsty, sleep when you are tired… And DO have the x-rays that doctors find necessary, the check-ups that will find sickness in advance to prevent or treat it. But worry more about life as it is now, than about risks you cannot influence. May I say: Have fun?

Anna

Someone who is not a doctor or has any medical training but who some how or rather felt the strong urge not give up on her intuitions and checked up on the internet to confirmed her prognosis.

Madeleine Robb diagnosed eye cancer (retinoblastoma ) in a baby she had never met after a chat-room pal emailed a photo of her daughter from America.
She spotted an unusual white shadow in one-year-old Rowan Santos’s eye.

Her friend took her baby to the doctors to check it out and it was confirmed that she had a large tumour in the left eye. One more week and the tumour could have hit her optic nerve.It is a miracle

How many of us would believe what our friends tell us. It is very lucky that she took the baby for a medical checkup or otherwise, the child would have being lost .If she had dismissed her friends message, I dread to think of the consequences.

The cancer was undetected during a medical and it only appeared from a photo and God works in mysterious ways. If the mother did not send a photo of her to her friend Madeleine, the cancer would not have been discovered until too late. Praise God !

Rowan is having chemotherapy and will lose her eye. But doctors say it could have been much worse if they were not aware of it.

Everything is providence and miracles happen.

Reference and thanks to :-

http://www.thesun.co.uk/sol/homepage/news/article1611630.ece

Diagnosis Day is always hard for me. My daughter, now 5, was diagnosed with retinoblastoma on August 17, 2005 at 8:45am. Tonight, August 16th, we are on the Eve of The Anniversary Of Diagnosis Day.

But, what I’ve found the past two years, especially now that we have officially spent more “years” as a cancer family than not, is that the Eve of Diagnosis Day — otherwise known as “the day before our lives changed” — is a whole lot harder for me. It’s a day that reminds me of a life that might have been and not of what is now.

Now, certainly, we know our blessings. Like many children in the United States who are diagnosed, my daughter is healthy and alive. And, aside from a prosthetic eye, she has lived the past few years as a child who many never assume to have had cancer. Her hair has fully grown back, she is taller than any of her friends, she is smart, funny, sensitive, and incredibly articulate. Back when she was diagnosed, we weren’t sure what her future would hold. And, if you’re reading this as a new parent, I’m quite sure you’re thinking the same thing. If you’re reading this as a seasoned Rb parent, I’m sure you, too, count the blessings you have as well.

Many of my married friends joke about not being able to remember what life was like before marriage and kids. Much like I can’t remember what life was like before I had children, it’s getting harder and harder for me to remember what life was like before retinoblastoma. I can’t remember back when I didn’t really care what sharp object my child had in her hand. I can’t remember back to when “mandatory safety glasses” weren’t a part of our lives. I can’t remember my daughter’s chest without a scar or a port. And, I can’t remember what my daughter’s face looked like without her prosthetic.

But, I also am thankful that, because of our cancer journey, I now have a daughter who embraces life. I have a daughter who is more kind than her peers, especially when there is a new person in the room. Because of our experiences, my daughter isn’t afraid to talk to someone who looks different or who uses a different ability via a wheelchair, walking stick, white stick, or who speaks in a manner that is unfamiliar to us. My daughter is learning, at an early age, that different is special… that different is good.

She is that kid in school who I always wished I had the confidence to be — she is the one who is friends with everyone because she’s the most kind to everyone. She takes care of others, but she has also learned to advocate for herself. I guess that’s from times when I had to leave her alone in the hospital when she was just 2 years old. She had to learn how to speak clearly, quickly, and to express what she felt and what she needed from strangers, at age 2. When we are out and I see 2-year olds, I am am reminded just how much “growing up” my daughter needed to do.

Diagnosis day — in the past, that was the hardest anniversary for me because it signified such a change in our lives. But, now that we have officially crossed that threshold where my daughter has spent more of her life as a cancer survivor than as a non-cancer survivor, I’m feeling a different emotion about pre-Diagnosis Day. It’s a day that’s ambiguous, unclear, to me .. I’m not able to remember life prior to Retinoblastoma….

and, honestly, I don’t think I want to.

If you’ve found this site because of a recent Rb diagnosis,may you find peace on your diagnosis day. If you’re a seasoned Rb family, may you find peace on your anniversary or during this difficult time.