September is Childhood Cancer Awareness Month
This month is childhood cancer awareness month and we wanted to use this issue of myStrand to highlight some of the facts around childhood cancer as well as focus on one particular type of cancer that tends to only crop up in children – the cancer of the eye called Retinoblastoma. Unfortunately, targeted treatments are only slowly making their way into the treatment landscape of childhood cancers. However, some doctors and researchers are working hard to make the promise of personalized medicine come true for childhood cancers, too.
If you would like to do more than just read and share knowledge about childhood cancer, we encourage you to look at organizations here in India, like CanKids and Iksha Foundation, that support children suffering from cancer and their families through the often arduous, painful, and expensive journey that is cancer treatment.
Please write to us with any questions or suggestions for topics that you would like to see covered in myStrand. You can reach us at firstname.lastname@example.org or through any of the communication channels of our #StayAheadOfCancer campaign.
The myStrand team!
A cancer reveals itself early
“How do you catch something you can’t see?”
These days, with the plethora of cancer treatments and years of experience, the following sentence almost appears like a mantra: “If you catch it early, you can cure it!” Well, or at least have a good chance to treat it, as Dr. Vijay Chandru (MD and Chairman, Strand Life Sciences) said in a recent Outlook article on cancer: “Make cancer manageable and survivable, until it’s made curable.”
Now, I hear you say: “How do you catch something you can’t see?” True, the vast majority of cancers don’t reveal themselves in symptoms that make us go, aha, I better go and see the doctor for this. It’s usually this nagging little pain we’d rather ignore, or bloating and discomfort, a rash or a bump we instinctively dismiss as nothing and hope that it will go away by itself, as most will. Or we discover by chance that something is amiss, when something harmless like a pile of clothes striking the chest hurts, like Dimple Bawa describes her first discovery that all wasn’t well before her breast cancer diagnosis.
Get the camera, dear!
Yet, there is one cancer that really does reveal itself, if not to the naked eye, but close enough. Some of you might have already come across stories in the news or in social media about children who survived eye cancer because it had revealed itself on a photograph, like this story of a Bangalore girl told by a local newspaper in 2012. An ominous white reflection, spotted on photographs where we would normally expect a reddish-orange reflection from the child’s pupils, gave the cancer away. While the family was not aware of this sign of cancer, and had actually considered it a ‘good omen’, the professional photographer who took the family’s photograph was and sent them straight to a specialist. Sadly, he had lost his own niece to this particular type of cancer, called Retinoblastoma, a few years ago.
What is Retinoblastoma?
Retinoblastoma is a cancer of the developing retina that predominantly affects children. Making up around 3% of all childhood cancers worldwide, around 1,500 new cases are diagnosed each year in India alone compared to 350 new cases in the US. However, where the even bigger difference comes in is in survival. In the West, Retinoblastoma is by no means a death sentence with 5-year-survival rates of up to 96.5% in the US. In contrast, only around 40-79% of sufferers survive retinoblastoma in developing countries like India. The key to survival and sparing a child’s eye sight, you guessed it, is to catch it early and treat it comprehensively.
So, how do you catch retinoblastoma in the act? The tell-tale sign, often before any other symptoms appear is the white reflection on a photograph where the red-orange pupil is supposed to appear. It is caused by the flash reflecting off the developing tumor cells instead of the blood vessels in the eye. In medical speak this white reflection is referred to as cat’s eye or ‘leukocoria’. Later on, you might notice a child developing a preference for objects to the side of the cancer-free eye as the tumor starts obstructing the view of the affected eye, or signs of eye irritation or a developing squint. But really, the best chances to beat this cancer are before any of these other symptoms appear.
Where the genetics comes in
One additional weapon in the fight against retinoblastoma is genetics, with doctors being able to trace up to half of diagnosed cases to an inherited genetic mutation in the RB1 gene (obviously named after retinoblastoma when the causal link was established by scientists). Today we know that being a carrier of a mutation in RB1 doesn’t necessarily mean that cancer will develop, as is the case with many other inherited mutations. However, once retinoblastoma does show itself, having an inherited mutation makes it much more likely for cancer to develop in both eyes rather than just one. Unfortunately, RB1 mutation carriers are more likely to suffer from other cancers later on in life including bladder cancer, lung cancer, melanoma (a type of skin cancer), breast cancer, and osteosarcoma (a type of bone cancer).
Therefore, it is essential to test all cases of retinoblastoma for the presence of such an inherited mutation. This information not only helps ward off other cancers through regular check-ups, but can also save the lives of siblings and family members, who can then look out for the earliest signs of disease. In the case of Retinoblastoma, that is as simple as taking a closer look at the photographs we all take of our children almost on a daily basis. Share this information with all your friends and loved ones, so that when Retinoblastoma strikes, they too know how to recognize it by its ‘ominous reflection’.
Disclaimer: The information provided in this article is in no way intended to replace expert medical advice. Always discuss the best possible course of action for your situation with your doctor.
Retinoblastoma – What you need to know
Retinoblastoma, or cancer of the eye, is a malignant tumor of the developing retina that:
- primarily affects children and is a major cause of blindness
- represents 3% of all childhood malignancies
- first shows itself as the so-called cat’s eye reflex, or leukocoria, which is visible as a white spot on a child’s pupil in photographs.
10 Facts about Childhood Cancer
Childhood and cancer are two words that should only have their starting letter in common, but sadly close to 300,000 children aged 0-19 years are diagnosed with cancer every year. One fifth of those cases, that’s 40-50,000 cancers, are diagnosed here in India alone. Now let’s look at some other pertinent facts about childhood cancer:
- Every 2 minutes a child is diagnosed with cancer! In India, Delhi had the highest childhood cancer incidence for both boys and second highest for girls between 2012 and 2014 (Satyanarayana L et.al.. 2014).
- There are 16 different kinds of childhood cancer. In India, Leukemia (blood cancer) is most commonly diagnosed for boys and girls, with lymphoma (cancer of the lymph nodes) and brain tumors in second place for boys and girls, respectively (Satyanarayana L et.al.. 2014).
- Every 57 minutes a child is diagnosed with Retinoblastoma – a type of eye cancer that almost exclusively occurs in children and is entirely curable when caught and diagnosed early!
- Every day, 4 children are born with eye cancer in India. At least 1 of them is likely to die from the disease.
- 5) The cause for most childhood cancers is not known. However, 5% of childhood cancers are attributed to an inherited genetic fault, including the inherited form of Retinoblastoma. Other hereditary cancer syndromes, like Li-Fraumeni Syndrome for example, are also suspected to increase the risk for childhood cancer.
- When Retinoblastoma is inherited, it is much more likely to strike both eyes rather than just one and predisposes a carrier to other types of cancer, too.
- Warning signs of Retinoblastoma are:
- Cat’s eye, or ‘leukocoria’, which is visible as a white spot on a child’s pupil in photographs.
- Lazy eye, when the eyes don’t appear to look in the same direction.
- Earlier diagnosis of Retinoblastoma in family members.
- Mutations in the genes RB1 and MYCN are to blame for inherited Retinoblastoma.
- Knowing the genetic status of a Retinoblastoma case can help diagnose recurrence of cancer early and save the lives of other family members!
- “About half of the children suffering from retinoblastoma carry a mutation in the RB1 gene that may run in their family. The importance of sensitive testing to detect an abnormal RB1 gene cannot be understated” says Dr. Ashwin C Mallipatna, MBBS, MS, DNB, Pediatric Ophthalmologist (Strand, 2016).
Childhood cancer is quite different from cancer in adults. According to the Indian Cancer Society, only 3% of all cancer cases occur in children, but the fact that they are fast growing makes them very sensitive to chemotherapy and therefore good cure rates should be highly achievable. Yet, in stark contrast to the average 84% cure rate in higher-income countries, it is estimated that around 70% of children diagnosed with cancer in India die from the disease due to lack of awareness, late detection and diagnosis, inadequate facilities, and high treatment costs (CanKids).
For more information about Strand Life Sciences and our tests, call 1-800-1022-695 (toll-free in India) or write to us at email@example.com.
I am Dimple Bawa – This is my story
Next month is #BreastCancerAwareness Month.To set the stage, we’ve prepared this video story of a young cancer survivor, whose life was turned upside down at the age of 32 with the diagnosis of triple negative breast cancer. However, after the initial shock and many-fold side effects of aggressive treatment, Dimple Bawa picked herself up and decided to fight cancer head-on, and not just her own. Genetic testing confirmed that she was positive for a cancer-causing BRCA1 mutation, which put her at increased risk of her cancer recurring. Today, she heads Cheers to Life Foundation helping others cope with their cancer diagnoses and says she is on a “mission to make cancer just a zodiac sign”. We say Cheers to that! #StayAheadOfCancer