Consulting with Dr. Google

— Categories: Ependymoma Community     Posted on August 19, 2019

Ependymoma caregiver, Tamiko, shares how to navigate the internet when searching for disease information.

By Tamiko T.

As an ependymoma caregiver and guest blogger, Tamiko shares her advice to help others within the ependymoma community cope with their illness.

Any medical diagnosis will send people running to the internet, but many doctors warn patients about the dangers of relying on “Dr. Google” for guidance. When my son, Colin, was diagnosed with ependymoma in 2009, I was no exception and, truth be told, the internet was the source of information and support for my family

However, I understand the concerns about the wild west of the internet, so I am here to provide an experienced explorer’s guide to developing a productive relationship with Dr. Google. To put this in context, I will share parts of Colin’s story, which started with an emergency room visit on his second birthday. Without the constant access to the internet that many of us have today on our smart phones, my husband and I would scurry into the family resource center to look up more information about ependymoma and were desperate for statistics that would help us understand what our family was now up against.

Over time, as we researched different treatment options, we used the internet to learn not only about Colin’s cancer, but also side effects of treatment and the tumor. Eventually, he relapsed and we needed to explore clinical trials and other options. When we knew that we could no longer find a cure for him, we still looked for answers about the best way to help him and give him the best quality of life we could.

In looking back on the years that I relied on the research tool of “Dr. Google,” I learned so much that was critical to our decisions about Colin’s care. At the same time, I had to recognize when I hit a wall and the answers I was looking for wouldn’t be found after hitting enter on a search bar.

This leads up to my first lesson on internet searches:

Remember that there are limits to the information that you find.

Most information is general and high level; it may not describe your own situation enough to be useful. With cancer in general, and ependymoma specifically, the disease is very different by age and sub-type. Researchers are still learning about how these cancers work as well as what treatments are best for them, so the information is likely to be different based on the source.

Perhaps most importantly, some questions are simply difficult to answer and people ask because of the underlying uncertainty and anxiety that come from a cancer diagnosis. For example, I know that a lot of families want to learn more about causes, and a lot of this has to do with guilt over possibly doing or not doing something that caused it. The fact is that there is nothing that can be done after the fact; this information helps researchers, but there is no clinical value to it. This response is totally understandable, but it is not the most effective way to address these issues.

Rely on reputable sources.

With so much information available on the internet, it can be difficult to separate the wheat from the chaff. It is possible to find websites that say just about anything, many making outrageous and supported claims about treatments. By using a critical eye and leaning heavily towards science-based medicine, it is easier to steer clear of information that simply can’t be verified. There is a lot of good science out there to support different approaches, including herbal medicine, but it is important to make sure that there is some evidence as well.

Published research is the most reliable source of information. Medical and scientific jargon can be difficult to understand, but these can be helpful for you, even if you can’t wade through them. You can email your doctor or bring in a copy of the study (even if it’s just the summary) to an appointment. Even if you do understand the gist of the paper, there are other critical elements to evaluating the conclusions, like study design, sample size, and so forth.

Be wary of information on any website that promotes particular products or services. I understand why people want to explore every avenue, including herbs and supplements. However, even when a company or individual claims to be concerned for patient health, they may make claims that are not supported by science or evidence. It is also very important to remember that natural substances may truly be effective, but they may also have side effects or interact with other drugs. In all cases, it is important to discuss these supplements with your medical team and pharmacist, whether they are for treatment of the cancer itself or other side effects.

The internet is a wilderness, but you are not alone.

The internet has such a wealth of information that it can be overwhelming to do this on your own, but the best part is that you are not. There are incredible support groups available that bring together patients and families from all over the world to share information and help sift through what you find. Furthermore, these groups can help you cope with the things that aren’t answered easily through a Google search: uncertainty, anxiety, and self-doubt. Others who understand that struggle can be an invaluable compassionate ear, even if they can’t simply fix the problem.

It’s understandable why many clinicians groan when they hear “I read this on the internet,” but you can mine a wealth of information out there if you know how to tell the difference between quartz and diamond. It is a tool that can be constructive, destructive, or simply confusing; if the process of sifting through it is too overwhelming, it may be better to rely on the hive mind of patient and family groups where that expertise is concentrated and you can get additional support.

Lastly, even armed with the best quality information, there is no substitute for a genuine medical exam and consultation with a medical professional who knows the patient or understands the full history. Informed patients and families are crucial for getting the best outcomes, so all that research is an important and constructive part of the equation. Putting these pieces together and acting as a team is truly the best medicine that will help you make good decisions and feel confident about moving ahead with a course of action.

© Tamiko Toland

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