While no one should have to deal with cancer, it feels especially wrong to see a child, let alone your own child, receive this awful diagnosis. As a parent, nothing is more terrifying than the thought of losing your child. This year alone, 15,780 children will be diagnosed with Cancer. 1 in 285 children will be diagnosed with cancer by the time they are 20 years old.
To say a cancer diagnosis upends a family’s life puts it lightly. All of those routines parents tried to establish for structure and continuity are disrupted. Families must navigate a world of doctor’s visits, hospital stays, tests, treatment, and appointments, all while trying to hold onto some semblance of normalcy. If parents can, they take leave so they can be by their child’s side to hold their hand and encourage them through each grueling treatment, scary side effect, and the unpredictable nature of progression that threatens to shatter their hope that something is working.
During all of this, parents face a paralyzing web of choices: This treatment or that treatment? Can I take leave? Who cares for our other children? Do we seek out a specialist? Should we try a clinical trial? Surgery? Is it safe to travel?
While all of this can be overwhelming, there are incredible care teams that are trained and ready to help. There are parent support groups and patient advocacy groups with resources to share. There are specialty physicians and researchers that have spent their entire career focused on beating your child’s cancer.
Where do you start? Our recommendation is to start with a second opinion from the specialist with a deep knowledge of this particular cancer. Most patient advocacy groups will tell you the same. In this case, the old cliche holds: knowledge is power. Knowledge enables parents to ask better questions and form deeper understandings that can drive crucial care decisions.
Why Get A Second Opinion?
Parents and guardians may have hesitated to seek a second opinion for fear of offending their child’s physician in past decades, but in today’s world this concern is largely unfounded. Second opinions are increasingly common and utilized when it comes to complex or life threatening cases, such as cancer. The current generation of parents understand that over time physicians have become more and more specialized in their fields and seek them out for this very reason. While second opinions are sometimes a result of a poor patient experience, we find that it is the minority of reasons families seek these kinds of consultations. Sometimes, the local diagnosing physician will recommend a second opinion, or consultation with a specialist, especially when the case becomes more complex. Local physicians and even pediatricians may work with the specialty care team to continue ongoing care closer to home following a procedure or treatment. Collaborative care teams near and far have great potential for creating the best of all worlds; the highest quality care with the highest level of comfort.
Some insurance companies will require second opinions to confirm the diagnosis and treatment plan, saving them from paying for multiple treatments, and your child from receiving harsh drugs that won’t work if it is not exactly what they needed.
Pediatric cases can especially benefit from review by a physician with a deep specialty in their cancer type. Though some cancers present with similar pathologies in both adult and pediatric populations, many others benefit from in-depth knowledge and experience when dealing with a pediatric case.
In many instances, the second opinion alters or reverses the diagnosis. According to a 2017 Mayo Clinic study, 21% patients received a completely different diagnosis and 66% received a clearer diagnosis, while just 12% experienced no change in diagnosis.
Second opinions often inform parents of additional treatment alternatives, including clinical trials or cutting-edge advances only available at certain hospitals. For cancers without a standard treatment regimen, a second opinion helps to ensure that all available options are on the table for consideration.
When Should I Get A Second Opinion?
While many doctors advise getting a second opinion at the time of diagnosis, there are many occasions in later stages where a second opinion may also prove valuable. This includes when in the midst of treatment because it could take weeks to see a specialist and 3-6 months to get into a clinical trial, receive insurance approval, etc. Other times include when treatment is no longer effective and when a more aggressive course of treatment is under consideration such as surgery or treatments with irreversible or harsh side effects. Families may also seek out second opinions in the event of an adverse medication reaction in the course of treatment, or the appearance of new symptoms.
How Do I Get A Second Opinion For My Child?
Many leading cancer hospitals around the country and around the world offer second opinion programs, sometimes virtually. These programs enable patients and families to connect with resources that would otherwise be unavailable. When families elect an online second opinion, they have the opportunity to first submit medical records and ask questions to find out whether traveling in-person is worth doing. As noted, it’s not easy to travel with a child whose immune system is compromised, to disrupt school and work schedules, or pay for travel while also anticipating steep medical bills. For especially complex or rare cases, families might seek multiple opinions from multiple leading institutions to uncover their best options the soonest.
When pursuing a second opinion, you’ll want to gather your child’s medical records, including scans and pathology reports, and have them sent to the consulting physician for review. In most cases, you’ll also need to authorize contact between your child’s physician and the consultant. Most second opinion programs help guide families through this process.
Many second opinion programs involve a team of specialists: a radiologist to review radiology reports, pathologists for pathology reports, etc. This helps to ensure that your child’s case benefits from a rich multidisciplinary perspective and a broad set of experiences.
How Do I Make the Most of a Second Opinion Consultation?
A second opinion consultation is an opportunity to ask questions and seek clarity on diagnosis, prognosis, and treatment options.
According to Memorial Sloan Kettering Cancer Center, patients should ask these five questions to make the most of their visit:
- Are you sure my child’s diagnosis is correct and is as accurate and precise as is necessary?
- What is the standard-of-care treatment, and is there more than one option?
- What are the clinical trials that are relevant and available to my child — both at your institution and elsewhere?
- Do I need to receive treatment here?
- Can I reach out to you with further questions?
A second opinion helps to ensure you and your child are empowered moving forward and that all options remain on the table. Across the board, five-year survival rates for childhood cancers are at an all-time high of 85% — and sometimes, a second opinion is the key to getting there.
Nationwide Children's Hospital
The Value of Getting a Second Opinion
Children's Hospital of Philadelphia
How to Get a Second Opinion
UPMC Children's Hospital of Pittsburgh
International Second Opinions
Children's National, Washington DC
Getting a Second Opinion