Second opinions are such a hot topic among parents with children fighting for any disease, not just Hepatoblastoma.
The feelings toward getting a second opinion come from both ends of the spectrum. I know because my husband was on one end, wanting to get a second and third opinion; whereas I was on the other end, not wanting to upset our daughter’s medical team. My husband Steve kept saying we needed to be proactive and get the best care possible for our daughter Addison and I was the one worried our care would be different if and when the team found out we wanted another viewpoint. –Erin Locke (Addison’s mom, Hepatoblastoma Resource Network parent advocate)
But what do our doctors think about getting a Hepatoblastoma second opinion?
One of my favorite aspects of pediatric oncology is the collaboration between physicians and scientist at a different institutions to provide the best care for our patient. I view Hepatoblastoma second opinions as tool to ensure I am providing the best care available to my patient. If you do not feel comfortable discussing the utility of a second opinion with your pediatric oncologist I ask that you examine your reasons why you are feeling hesitant.
I never get mad or upset that someone wants a second opinion. I understand why families are hesitant to bring up asking for a second opinion. My hope in contributing to this article is to provide you with reassurance that it is your right to ask for second opinions and to give you a glimpse into what happens when you ask for a second opinion.
–Dr. Valeria Smith (Oncologist at Texas Children’s Hospital, Hepatoblastoma Resource Network professional advocate)
When Steve and I were discussing the idea of getting another opinion for Addison, it was at the same time U.S. News and World Report’s list of the top children’s hospitals came out. It was the sign I needed to go through the process to get another viewpoint on Addison’s case. Getting a second opinion from another doctor is not as simple as calling the doctor and leaving him a message to call you back. Sure, that’s exactly what you have to do, reach out to a doctor to discuss your child’s case, but parents need to remember albeit an opinion, the doctor should not be rushed. We reached out to several hospitals and discussed Addison’s case over the phone or through email. After having those conversations, the doctor or nurse then gave us the green light to send all of Addison’s records to them to review. Some hospitals would not take her records; they wanted us to bring her to their facility to do their testing before giving their opinion. So like I said before, getting a second or third opinion is not going to be done overnight.
Hepatoblastoma does not react to chemotherapy in the same way in every child. Sometimes one protocol works in one child, but might not work the same way in another child.
Hepatoblastoma patients follow a protocol set forth by the Children's Oncology Group and often use recognized guidelines from the international trial called PHITT which attempts to simplify the known set of variables from a large historical sample of patients. The bottom line for you as a parent is that each child will have a unique path through treatment. If the disease reacts differently than expected, very few primary care oncologists and surgeons are versed in the best way to handle it.
For instance, if the disease is metastatic, or the fall in Alpha-Fetoprotein counts doesn't behave as expected, most pediatric oncologists will be at a loss for what should happen next. The care of your child is paramount, and you should feel comfortable talking to your doctor about how to reach out for expert assistance. A second opinion doesn't necessarily mean traveling or changing providers, it may be as simple as a virtual consult with the leading oncology and surgical teams which will help guide the care of your local provider.
How to start your Hepatoblastoma second opinion process:
One place you should start is with the medical facility your child is currently receiving care at in their records department. You will need to either go there in person because you will need to sign papers giving the hospital permission to release your child’s records to the other places you want to records to be sent. The medical records office should also be able to help you find out if second opinions are covered by your insurance.
Typically there is a fee that comes with sending records to other facilities, but depending on your insurance coverage, they pay for it under your plan. We were able to send Addison’s records to multiple hospitals: Children’s Hospital of Philadelphia, Cincinnati Children’s Hospital, Boston Children’s Hospital, and Texas Children’s Hospital. We received an email from both Philadelpia and Boston and they told us Addison would have to come there to go through all of their testings for them to consider giving a second opinion/taking on her case. We then received a phone call from Dr. James Geller from Cincinnati Children’s.
After going through her records, he wanted Addison to come to see him. He had new ideas to try on her tumor, as we were slowly finding out Addison’s tumor was chemo-resistant to the typical chemo protocol. Shortly after talking to Dr. Geller, we also received a phone call from Texas. The doctor we spoke to told us he consults with Dr. Geller on an almost daily basis, and since Cincinnati is closer to Chicago, we should just travel there.
Something to consider when thinking about getting a second opinion is the expense.
If your insurance does not cover sending the medical records, then you will need to pay for this yourself. If a hospital wants to have you come out to meet the medical team, that is an expense the family will have to cover. We needed to travel to Cincinnati, which is only a five-hour drive from Chicago, and we needed to stay in a hotel for three days. This is an out-of-pocket expense. Thankfully, all the testing and doctor consultations were covered by our insurance. Those three days at the hospital were long and I am pretty sure we ate almost all three meals at the hospital as well. We had to also time the hospital visit around Addison’s chemo schedule because we didn’t want her to stay in a hotel while her counts were down. We were able to make the trip while her counts were coming up and she was able to avoid contracting any other illnesses.
When we started looking into a Hepatoblastoma second opinion, it was after a time we were not happy with Addison’s team.
As parents, we wanted to make sure every option was exhausted for her to receive the best care, and we felt her team was not doing that because they did not usually treat this type of cancer. We had to be Addison’s advocate because she was only six years old and all she wanted was to not be in the hospital.
If there is any advice I can give you as a parent, it’s this: if you do not understand a procedure, drug, a medical professional’s thought process, you need to ask so you can understand.
Most pediatric doctors and nurses have an empathetic understanding that they are working on your most precious asset and want to not only make their patients comfortable but also their patient’s parents and guardians. If you do not feel comfortable with what is being done to treat your child or you want to make sure every option is being exhausted for your child’s case, then maybe looking into another opinion is the route you should take. –Erin Locke
An oncologist view on a Hepatoblastoma second opinion: Dr. Valeria Smith
Please keep in mind that second opinions come in many forms.
As a physician I have discussed difficult cases with other pediatric oncologist via phone, email or at meetings. In addition there are pediatric oncology teleconferences where a case can be discussed with numerous physicians at once, including review of images, pathology and genetics of the tumor.
While I cannot speak for all pediatric oncology centers, at Texas Children’s all decisions are made by a team. The system allow for a “built-in” second opinion for all of our patients. For a child with hepatoblastoma anytime they have a disease evaluation with images, their case is reviewed at our weekly multidisciplinary meeting where we review images and treatment plan with the entire solid tumor team of pediatric oncologist, pediatric surgical oncology team, pediatric radiologist, pediatric interventional radiologist and pediatric radiation oncologist. In addition weekly we meet and discuss any patients that are not responding appropriately (for example if a patient’s AFP were to increase).
Monthly, each patient with a liver tumor is discussed at our multidisciplinary liver tumor meeting.
In addition to pediatric oncologist, pediatric surgical oncologist, oncologist, pediatric surgical oncology team, pediatric our liver transplant team including transplant hepatologist and liver transplant surgeons are in attendance. Patients that have requested second opinions from our institution are discussed at these multidisciplinary meetings. In addition at each of these meeting we have representation from our phase 1 research team who can determine if there are phase 1 options available. We also have our social workers and nurse coordinators at these meetings to facilitate the logistics of each patient coming to our institution as needed.
My personal practice is I offer a second opinion upfront to all families with a tumor that has not responded to first line therapy.
In addition to families that appear hesitant about an upfront therapy plan I offer second opinions. I like to offer second opinions to families as this allows the family to feel more comfortable getting one and it allows me to discuss places that would be beneficial for families to get a second opinion.
All institutions have a certain way that they evaluate second opinion. Some places, like my home institution, are happy to discuss cases with physicians and parents over the phone. Some institutions will ask that the physician initiates the second opinion. Nonetheless, all places will review all the information they have received to determine if there is something to offer the patient.
While we love getting new patients at our institution and referrals from other institutions we will always prioritize the social and emotional health of the patient and family over simply acquiring patients.
This means that if we can give advice to your physician or co-manage a patient so the family can stay at home we will do that first. We also will recommend closer institutions that have similar options. If we can provide a service that is not provided elsewhere or a family chooses to switch to our institution we work with our social workers and the numerous local foundations to provide resources to help families with this transition.
Hepatoblastoma second opinions are a valuable tool.
Please keep in mind that your physician will likely hear about a parents request for a second opinion with the consulting physician contacts your physician for more information. This is one of those situations where honesty upfront will serve to benefit you and your family.
Again, if you feel you cannot be honest with your medical team please reevaluate the relationship you have with your team. You cannot appropriately advocate for your child without trusting your medical team. –Dr. Valeria Smith
If you are interested in a second opinion, you can start with the professionals in our network or e-mail us at connect@hepatoblastoma.org