Dr. Lindsey Fauveau, a board-certified breast surgical oncologist at Women’s Hospital, helps untangle the overwhelming web of digital information available to those researching their cancer diagnosis. With more than a decade of experience caring for breast cancer patients, Dr. Fauvo shares expert insights on how to avoid the digital rabbit holes that can create confusion rather than clarity.
Why do I feel the need to search for information about cancer even before my diagnosis is confirmed?
The whole process of determining whether or not you have cancer can be stressful for many people.
“In the case of breast cancer, you’re already out of your normal routine as you have to have a mammogram instead of a regular check-up. As a human being, that in itself is very worrying. And then they ask you to do things that are foreign to you, like, for example, a biopsy. Then you’re told there’s this other kind of doctor that you’ve never heard of called a tissue in a GP. He’s going to dictate what happens in your life to move forward.
Waiting to hear back from your doctor about whether or not you have cancer can seem impossible. It’s a swirling wave of uncertainty and the sheer number of unknowns can make you feel like you’re drowning. When this happens, it’s normal to cling to what seems like the only lifeline you can find – the Internet and all its information.
Sometimes I feel rushed during my doctor appointments and don’t know what questions to ask – any advice?
Many people think that there is only a fixed amount of time they have to ask their doctor questions during a visit. Some people come in with the mindset that they have to “pass” the date just to move on to the next step. However, Dr. Fauveau emphasizes that this is your time. You can use this time in whatever way is most useful for you. If your questions do not fit into this allotted time period, you can request more time.
It’s important to ask all the questions you might have, because if you don’t, you’re usually left trying to answer them yourself after you leave the appointment. “I don’t want patients to leave feeling like they have to piece together what they didn’t fully understand,” says Dr. Fauvo.
Should I wait to hear from my doctor before opening my test results in MyChart or should I open them right away?
During an initial appointment, when your doctor says “We’ll do this” or “You’ll have to wait for results through MyChart,” it’s perfectly acceptable to ask how you’ll get your results and what your next steps might be.
Dr. Fauveau usually talks with her patients beforehand to determine if they prefer to discuss the results in person, over the phone, or otherwise. Some people are comfortable waiting without knowing, while others are much more comfortable with information as soon as it’s available — even if it’s shared over the phone or online rather than in person.
If your provider doesn’t ask how you’d like to receive your results, you can certainly say something like, “I’m not sure what your usual procedure is, but I’d like to know the results as soon as possible, so that’s how I’d prefer to receive them.”
Should I use artificial intelligence (AI) to understand my results before I talk to my doctor?
When you search for information, your first result often leaves a lasting impression and can influence how you perceive subsequent information. For example, if you feed your test results into an AI tool, you’re more likely to let its answers influence how you understand diagnosis or treatment options.
If what the AI says is different than what your doctor later explains to you, it may be harder to trust its guidance. You may even start to question things you wouldn’t have otherwise considered, which can cause unnecessary confusion.
Before using AI to understand your health, think about how you process the information. Are you someone who can easily adjust your understanding if new or different information comes along? Knowing yourself and understanding whether seeking additional information will help or hurt your peace of mind is key.
It’s also important to remember that when you use AI to understand your test results, you’re entering health information that is privileged and protected by law through the Health Insurance Portability and Accountability Act (HIPAA).
Can AI tools occasionally produce reliable answers even when they are wrong?
Dr. Fauveau believes that the first problem with artificial intelligence is that it does not automatically lead you to its sources of information. In the practice of medicine, providers use scientifically proven information from certified sources. This information has gone through numerous studies and has been verified. this is standard care medicine.
On the other hand, artificial intelligence draws information from all over the Internet. could derive information from unverified or unreliable sources. These sources could end up providing information that has been filtered and delivered with bias. This means that the AI could accidentally give you misinformation or misinformation, which could cloud your understanding of your health.
How can I bring information I’ve found during my own research into a conversation with my doctor without feeling embarrassed?
Dr. Fauveau notes that there are two main ways you can ask your doctor about the research you’ve found.
Personal – If you feel like you’ve absorbed the research enough to have a conversation, you can ask your doctor specific questions about what you’ve found. For example, you can say “This is my interpretation of the results. Is it correct?” If your doctor’s answer is different from what you found, you should ask more questions.
Via MyChart Message – If you feel like you can’t quite understand medical terminology or have trouble verbalizing your thoughts, try sending your questions via MyChart. You can open a message to your doctor, attach your findings and ask something like “Does this seem accurate? If not, can you explain why?”
What are some examples of good online resources that can help me have a more productive conversation with my doctor instead of just Googling a specific diagnosis?
Keep in mind that the top results on Google are usually paid ads. Searching for verified cancer institutes or local hospitals is a good place to start. Other reliable sources of information include:
American Cancer Society – This is a non-profit organization that covers all types of cancer.
National Cancer Institute (NCI) – The NCI data bank, which includes all of their clinical trials and published papers, can help you find more specific answers to your questions.
Independent Societies – Independent societies such as the American Society of Breast Surgeons will have websites that direct you to other verified and trusted websites.
Cancer-specific organizations – Different types of cancer often have their own organizations that can help give you more specific information. For example, Susan G. Komen is a great source of breast cancer information.
It’s perfectly normal to look for answers, especially in times of great uncertainty. However, Dr. Fauveau reminds us that clarity should not come from the fastest or most convenient source of information. Instead, it should come from reliable and trustworthy sources. By using information from trusted sources, relying on your care team, and setting digital boundaries, you can replace confusion with reassurance and confidence in your cancer care.
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