The Informed Parent:
6 tips for staying up to date in a social media world.
Saturday March 10, 2018
Google and social media play an increasingly significant role in the lives of families affected by retinoblastoma, but without careful use, they can complicate a child’s medical care and even put life at risk. Dr. Jesse Berry shares her recommendations for being a safely informed parent advocate in the modern hyper-connected age.
A diagnosis of cancer is always terrifying…but the most terrifying may be when it involves your child. Parents of children with retinoblastoma often play a critical role in their diagnosis – stories of parents relentlessly seeking out medical attention for ‘the glow’ in their child’s eye(s) are quite common.
Furthermore, even when a diagnosis is made, several other referrals are required before a child reaches an ocular oncology center that treats retinoblastoma. It is not surprising that all of this uncertainty tends to drive parents to the internet.
While there is a plethora of great information on the web, there is also a fair amount that is not helpful, platitudinous…or, at worst, even harmful.
Dr. Jesse Berry and Cooper, one of her young atients. Credit: American Association of Ophthalmology
You’ve probably seen the doctor’s mugs that say, “Please don’t confuse your google search with my medical degree.” It’s true that each case is different, so the best approach is to find a center and a team of doctors you trust to advise you and care for your child!
But an informed, in-the-know parent can be a real partner to the treating physician and a wonderful advocate for their child, so here are some tips for staying safely informed, without succumbing to utilizing Facebook as a surrogate for your doctor. (Facebook as a support group, however, is great!)
1. Find a Team
A diagnosis of cancer is always terrifying…but the most terrifying may be when it involves your child. Parents of children with retinoblastoma often play a critical role in their diagnosis – stories of parents relentlessly seeking out medical attention for ‘the glow’ in their child’s eye(s) are quite common. Furthermore, even when a diagnosis is made, several other referrals are required before a child reaches an ocular oncology center that treats retinoblastoma.
It is not surprising that all of this uncertainty tends to drive parents to the internet. While there is a plethora of great information on the web, there is also a fair amount that is not helpful, platitudinous…or, at worst, even harmful.
You’ve probably seen the doctor’s mugs that say, “Please don’t confuse your google search with my medical degree.” It’s true that each case is different, so the best approach is to find a center and a team of doctors you trust to advise you and care for your child!
But an informed, in-the-know parent can be a real partner to the treating physician and a wonderful advocate for their child, so here are some tips for staying safely informed, without succumbing to utilizing Facebook as a surrogate for your doctor. (Facebook as a support group, however, is great!)
The most important thing is that your child is being cared for in a reputable retinoblastoma center. Because retinoblastoma is rare, there are not centers in every city. It takes a village – literally – to treat retinoblastoma well, and we understand it can be a hardship for parents to travel to these centers. However it is recommended that doctors trained in the management of retinoblastoma care for your child.
While this list is not 100% inclusive, the One Retinoblastoma World map can guide you to finding a center as close to home as possible.
Nothing is perfect, but most centers of excellence will have an ocular oncologist (the eye surgeon that manages the tumors in the eye), a systemic oncologist (who may give chemotherapy and will watch the body for any effects), and a patient support network. You may also meet genetic counsellors. An interventional radiologist or neurosurgeon is needed to give very localized chemotherapy (called intra-arterial chemotherapy).
If your center is not listed on this map, it may be worthwhile to at least google your doctor to make sure he/she actively treats retinoblastoma.
Dr. Jesse Berry examines Ruby’s eyes using an indirect ophthalmoscope. Credit: USC Roski Eye Institute
2. Know the Lingo
Any new diagnosis will bring with it a slew of medical terminology that likely, you have never in your life heard before. Like ‘rb’ (short for retinoblastoma) or RB1 (the genetic defect that causes retinoblastoma tumors to form and in 1/3 of cases is present in all cells of the body). Or CEV (the 3 systemic chemotherapy drugs that are often used to treat retinoblastoma: carboplatin, etoposide and vincristine). Or EUA (examinations under anesthesia which are necessary to evaluate your child’s eye for tumors, apply treatment, etc.).
While this will at first seem like alphabet soup, the better you understand this new lexicon, the better prepared you will be to have conversations with your doctors. WE C Hope provides two very comprehensive glossaries:
3. Be Prepared to Discuss Treatment Options
While this is not always the case, often parents know of a possible retinoblastoma diagnosis before it is confirmed by an ocular oncologist in the operating room. While the doctor/s will describe to you the staging, whether one or both eyes is involved, and the treatment options, it is very helpful to know a little about them.
The American Academy of Ophthalmology publishes a review on retinoblastoma and your hospital may have their own specific online site as well. I have found that WE C Hope keeps their Retinoblastoma Medical Care Resource – which is wonderful — consistently up to date. It discusses the many options that may be presented to you including systemic chemotherapy, intra-arterial chemotherapy (a more localized form) and surgical removal of the eye, called enucleation.
While it is universally true that most parents revolt against this idea of enucleation, in many cases of advanced disease in one eye it is the best, safest choice and is curative >95% of the time. Sometimes chemotherapy is required after the surgery to ‘clean up’ aggressive cells that were trying to escape the eye. But often it is not and a one-hour surgery can cure your child of cancer.
You are also always within your right to say you need a little more time or a second opinion, with two CRITICAL caveats. First, most doctors don’t treat retinoblastoma so a second opinion may require a trip out of state/country and it may not be covered by insurance. Second, retinoblastoma grows pretty quickly and it is dangerous to go untreated for a long time. If your doctor suggests that your child is already in a dangerous situation due to very advanced disease, high pressure in the eye, or tumor invading into the optic nerve, I would caution against any delays in prompt therapy.
Dr. Jesse Berry and Dr. Jonathan Kim.
4. Understand that Retinoblastoma Evolves
While one treatment may be the best for your child initially, this cancer frequently recurs. It is almost universally true that your child will require laser treatment, cryotherapy freezing treatment, injection of chemotherapy into the eye (called intravitreal chemotherapy) or other additional therapies over the course of treatment. This doesn’t mean failure – this is to be expected, and your doctor will discuss each step of the process with you.
This is often where social media can be a negative influence on medical care, with stories of patients who may seem similar but are undergoing different treatments which can confuse and frustrate parents. Please remember that there is no cookie-cutter treatment for retinoblastoma. Each case is different. Even recurrences are in different places of the eye, they are different sizes and require a different approach to treatment.
This is why the ocular oncologist will be actively surveying for new tumors or new recurrences that require more / different therapy at each EUA. During the first year of chemotherapy treatment, often your child will be seen at monthly intervals. With time, as fewer lasers or other therapies are required, this will lessen.
5. Ask Questions
Trust me on this one – go buy yourself a thick journal notebook because you will need to keep track of a lot of information, and you will have a lot of questions.
The best time to ask these questions is often after the EUA when you have some one on one time with your doctor. But invariably the stress of the EUA and waiting to hear how your child is doing will make you forget EVERY question you have. So, write them down and go through them in a step-wise fashion.
6. Get Support
In my opinion, the very best thing the social media world has done for retinoblastoma is to create a strong network of support groups for parents and survivors. Know The Glow provides awareness to parents about ‘the glow’, a venue for parents to share their child’s story, and helps connect with reliable resources.
These organizations are reliable and trusted sources for support as well as for information and advocacy on retinoblastoma.
Facebook has strong retinoblastoma support communities. WE C Hope maintains a list of closed, moderated groups. Usually each hospital also has a family support network.
Being an informed parent is a critical part of the successful treatment for your child in his/her fight against retinoblastoma. I hope you will find these resources helpful and, as always, stay strong and fight on. Know that we – the greater retinoblastoma community – are fighting for better treatments, personalized medicine, and a cure right alongside you.
About the Author
Dr. Berry is the associate director of ocular oncology at the USC Roski Eye Institute, where she cares for adult patients, and Children’s Hospital Los Angeles where she treats patients with retinoblastoma.
She is actively involved in the retinoblastoma community and her pioneering research is on the use of the aqueous humor (the clear fluid in the front of the eye) as a liquid biopsy for retinoblastoma.
She also runs a fashion and lifestyle blog for working women which was recently featured in The Fold Women.
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