Martha lives in Illinois and was diagnosed with metastatic breast cancer in January 2015. She has a husband and three children, ranging in age from 12 to 18, a dog and a lizard.
Searching for healthcare information online is a fact of life. Here are some ideas for how to do it responsibly.
"Don't confuse your Google search with my medical degree." If you've been online, there's a good chance you've seen this saying. I don't like it or its sentiment. I understand that people with medical degrees have put a lot of time, money and effort into those degrees. Chances are good that they've had to make sacrifices along the way.
On the other hand, patients have intelligence and knowledge of their own bodies that another person, even a doctor, won't have access to without cooperation. Posting such a sign, or even just having it visible on a coffee cup, does just one thing effectively and that's to shut down conversation.
I think about this saying even when I haven't seen it for a couple months. That's because I know that many of us only figure things out by seeking information through online searches. When I was diagnosed, I wasn't given any material specific to metastatic breast cancer. I was lucky, in at least one way, because my husband is well-acquainted with how to find reliable health care information. Following my diagnosis, he didn't try to stop me from searching for details and statistics on the web, but he did caution that published scientific information is quickly out of date. He also reminded me that I am an individual and though data will have some relevance, it won't be able to foretell my care or my response to treatment.
Those ideas are important to keep in mind for anyone who's trying to gather more information about a cancer diagnosis. The fact is, with most patients and/or their families, internet searches should be expected. This is the world we now live in.
Still, it's easy to get lost online. Using the internet for health care information works best if you start through respectable sites. Searching "cure breast cancer" is not helpful, but by starting at the websites of reputable hospitals and organizations, you may find new insight and hope, as well as ideas about your care that could be worth discussing with your health care team.
You may choose a large organization to begin your search or you might do as I did and start from a more-narrow field for your specific cancer type. Naturally, I also value the voices and new stories on this very site.
Some of my other favorites, new and old, are:
Share Cancer Support, which publishes a Resource Roundup each month that features information on a changing variety of topics, all of interest to people with breast or ovarian cancer. The August 2019 Roundup is here.
Metastatic Breast Cancer Alliance brings together numerous organizations under one umbrella. Its MBC Patient Info & Support Services page has further links to each members' resources. It has a wealth of information in one spot for the person with metastatic breast cancer. In addition, they have a link to Anne Loeser's The Insider's Guide to Metastatic Breast Cancer, which is a can't-skip resource for current information.
FORCE (Facing Our Risk of Cancer Empowered) has a program called XRAYS, which now includes a section specifically for people with metastatic breast cancer. These "x-rays" provide analysis of recent cancer news and research headlines. Each item is summarized and rated by accuracy of news coverage, scientific strength and relevance. The analyses are in-depth and offer clarity on difficult-to-understand topics. In addition, some analyses include links to clinical trial information that is connected to the research being discussed and to additional news coverage, as well as questions to ask your doctor. If you have early stage breast cancer, there is an XRAYS just for you, as well.
Cancer.net, whose tagline is "Doctor-Approved Patient Information from ASCO" (American Society of Clinical Oncology), has resources for every type of cancer and for many issues that patients face on a daily basis. This is an excellent starting point for understanding the basics of your care and provides ideas for how to adjust to life with cancer. I particularly like the Navigating Cancer Care because it addresses topics that can be difficult to bring up during appointments, such as sexual health and financial concerns, along with further links to more in-depth information.
Though I would not schedule another appointment with a doctor who felt it necessary to minimize or disregard my efforts to understand my diagnosis and care, everyone is different. For many patients, a sibling, child, or friend takes on the task of online research. If this is your situation, try to have that person attend appointments with you so that they can help you discuss concerns and questions with your physician and encourage them to visit websites listed here or through sources recommended by your doctor.