Social Media Support: 10 Reasons Why Exchanging Medical Advice can be Unhelpful, and What to do Instead

Leah was diagnosed with retinoblastoma that had already spread to the brain. Without establishing any other circumstances, many parents advised that her family travel urgently to specific hospitals in the US, Canada, the UK, or Australia.

With a few simple questions, group moderators discerned Leah’s family live in the Philippines, where they struggled even to fund local bus fares.  International travel was unrealistic and inappropriate for stage 4 retinoblastoma, giving false hope rather than compassionate support.

In both the above examples, St Jude Children’s Research Hospital in Memphis was recommended as a solution if the family could not afford expensive care abroad, due to the hospital’s reputation for funding all aspects of patient care.  But this impression of the hospital is often misrepresented.

To be accepted at St. Jude, children must be eligible for one of the hospital’s open clinical trials.  Requirements for acceptance include age range; type and state of disease; and other medical criteria including organ function, blood values, and performance scores (a measure of how well the patient can continue daily activities, and estimate of the treatments they may tolerate).  Some St. Jude trials accept children only if they have not yet begun treatment.  Patients must also be referred by a physician or qualified medical professional.  Families should keep all these points in mind if considering seeking a physician referral to St. Jude.

While St Jude families never receive a bill for treatment, travel, housing or food, the hospital is not a magic solution for every suffering child.  However, St Jude Global, World Child Cancer, the International Society of Paediatric Oncology, and One Rb World are expanding hope to thousands of families through twinning partnerships and knowledge sharing that build in-country expertise, resources, and family support.

The twinning program in Davao, Philippines ultimately cared for Leah until she died, thanks to one dedicated American Rb Mom.  Though she knew she’d likely never meet the family, and treatment was almost certainly palliative, she was compelled to sponsor and fundraise the costs of travel and care not covered locally, as she would wish someone to do for her own child.

Michael was in the process of being accepted for treatment at St Jude Children’s Research Hospital, located in a neighbouring state, when his mum, Helen, posted for the first time on a social media support group.  A discussion arose about which treatments are offered at St Jude and other hospitals, and recommendations from other parents led to a second opinion.

Michael subsequently began treatment at another well-known retinoblastoma centre, despite the family’s lack of comprehensive medical insurance and inability to fund care, and significantly greater distance from home.  His family did not qualify for many travel and other assistance programs, having income just above the threshold, but not sufficient to cover their increased costs.

When the financial burden of travel and treatment costs began to spiral, the family sought to transfer care closer to home.  Only then did they discover that they had forfeited the chance of care at St Jude when treatment began elsewhere (refer to point #4, above).

Julia was diagnosed with unilateral Group E retinoblastoma. Enucleation was advised at a US regional comprehensive childhood cancer centre with retinoblastoma experience, though not a specialist Rb program. Numerous recommendations pointed her mother to a major specialist centre that was out-of-network for insurance coverage. After a two-week delay investigating various workarounds, her family paid out-of-pocket for consultation at the recommended hospital. Eye-salvage therapy began at the same hospital. One year later, Julia’s eye was removed due to progression of the cancer.  Her family later lost their home, which had been re-mortgaged to cover the cost of uninsured treatment.

One-year old Karina was diagnosed with unilateral Group D retinoblastoma in India, and immediate enucleation was advised. Many encouraging stories of recovery and successful life after enucleation were shared in response in response to her father’s post, but stories of eye salvage were more abundant and passionate.  Jamil and his family began to question locally recommended treatment.  They followed advice to seek a second opinion, but lack of financial resources slowed this process, delaying removal of Karina’s eye by two months.

Positive pathology led to expensive chemotherapy her family struggled to pay for and comply with – they missed several treatments due to lack of funds.  Karina’s cancer returned in her brain one year later, and she died just after her third birthday.

Many factors are taken into consideration when doctors recommend treatment for retinoblastoma. Social media posts by their nature are short, and most often do not include all the information needed to support an informed treatment decision.

Hannah wrote that doctors advised enucleation for her two year old daughter, Grace, newly diagnosed with unilateral Group E retinoblastoma.  She asked what experience others had of enucleation, or eye salvage treatment.

Many parents and survivors shared encouraging experience of enucleation.  The majority response focused on eye salvage, including parents whose children had less advanced cancer at diagnosis.  Several parents described how their children, diagnosed with Group E unilateral retinoblastoma, were successfully treated with a combination of therapies.

Grace’s family opted for eye salvage therapy, but it sadly failed to prevent enucleation of her eye one year later. She required chemotherapy even after her eye was removed as pathology showed a high risk that the cancer had already spread.

One child’s good outcome does not mean another child will have the same outcome with the same treatment, even if they appear to have the same diagnosis.  Though the children were all staged with Group E retinoblastoma, they may have been staged differently using the new TNMH system.  The eyes of the children for whom eye salvage was successful may have been staged TNMH t2b, while Grace may have been staged TNMH t3 – indicating a significant risk of cancer spreading beyond her eye at diagnosis.

Liyana was diagnosed in Pakistan, with orbital and significant optic nerve invasion of retinoblastoma visible on MRI.  Her father, Rayan, asked if it was possible to cure. Concerned respondents suggested treatment centres in other countries, discussed enucleation and eye salvage treatments, specific chemotherapy drugs and treatments being more or less viable based on Liyana’s age of 5 years.

This chain of discussion included multiple unqualified opinions based on personal experience, rather than evidence specific to Liyana’s diagnosis.  For example, eye-salvage is not possible as part of life-saving care when retinoblastoma has already spread beyond the eye, and suggesting such an option is highly problematic for effective care.

Discussion by members and moderators arose around what was and was not helpful to share.  Comments were at times heated and disrespectful.  This would have been a very overwhelming and confusing jumble of responses for Rayan, who was, at heart, looking for comfort, encouragement and connection with other parents.