Season 2 of the UNprivate Parts podcast will focus on the complex realities of breast and gynecologic cancer journeys. From hearing your cancer diagnosis to undergoing treatments to navigating survivorship, this season will offer support and compassion to cancer patients and their loved ones.  

Dr. Lindsey Fauveau, a board-certified breast surgical oncologist at Woman’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. Fauveau shares expert insight 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 anxiety-inducing for many people.

“In the case of breast cancer, you’re already out of your normal routine by having to go in for a mammogram instead of a usual checkup. As a human, that alone is very alarming. And then you get asked 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 even heard of called a pathologist who’s going to look at your tissue under a microscope. And then they’re going to dictate what happens in your life moving forward. And that concept is very strange. But then you have this waiting period, which is probably the most painful part of this whole process.”

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 vast 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 lifesaving device you can find – the Internet and all its information.

Sometimes I feel rushed during my doctor’s appointments, and I don’t know which questions to ask – any advice?

Many people believe there is only a fixed amount of time they have to ask their doctor questions during a visit; some people come with the mindset of needing to “get through” the appointment just to move on to the next step. However, Dr. Fauveau stresses that this is your time. You can use this time in whatever way is most helpful to you. If your questions don’t fit in that allotted time slot, you can ask for 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 on your own 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. Fauveau.

Should I wait to hear from my doctor before I open my test results on MyChart or should I open them right away?

During an initial appointment when your doctor says “We are going to do this” or “You should expect results through MyChart,” it’s completely acceptable for you to ask how you will receive your results and what your next steps might be.

Dr. Fauveau usually talks with her patients up front to determine whether they prefer to discuss results in person, on the phone, or another way. Some people are comfortable waiting without knowing, while others feel much more at ease having information as soon as it’s available—even if it’s shared by phone or electronically rather than in person.

If your provider doesn’t ask how you want to receive your results, you can certainly tell them something like, “I’m not sure what your usual process is, but I would like to know the results as soon as possible, and this is how I would prefer to receive them.”

Should I use artificial intelligence (AI) to understand my results before I speak to my doctor?

When you seek information, your first result often leaves a lasting impression and can influence how you perceive subsequent information. For example, if you enter your test results into an AI tool, you’re more likely to let its answers influence how you understand your diagnosis or treatment options.

If what AI says is different than what your doctor later explains to you, it can be harder to trust their guidance. You might even start to question things you otherwise might not have considered, which can cause unnecessary confusion.

Before you use AI to understand your health, consider reflecting on how you process information. Are you someone who can easily adjust your understanding if new or different information comes along? Knowing yourself and understanding if seeking out extra information will help or harm your peace of mind is key.

It’s also important to remember that when you use AI to understand your test results, you are entering health information that is privileged and protected by law through the Health Insurance Portability and Accountability Act (HIPAA).

Can AI tools occasionally generate confident answers even when they’re wrong?

Dr. Fauveau believes the first problem of AI is that it doesn’t automatically lead you to its sources of information. When practicing medicine, providers use scientifically proven information from credentialed sources. This information has gone through numerous studies and has been verified; this is the standard care of medicine.

On the other hand, AI pulls information from all over the Internet; it could be pulling information from unverified or unreliable sources. These sources could end up providing information that has been filtered and delivered with bias. This means that AI could inadvertently be giving you misinformation or disinformation, 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 research you have found.

• In person – If you feel like you’ve absorbed the research enough to hold 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 this correct?” If your doctor’s response is different from what you found, you should ask more questions.
• Via a MyChart message – If you feel like you can’t quite grasp the medical terminology or you 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 look accurate? If not, can you please explain why?”

What are some examples of good online resources that can help me have a more productive conversation with my doctor instead of Googling a specific diagnosis?

Keep in mind that the top results in Google are usually paid advertisements. Searching for verified cancer foundations or local hospitals is a good place to start. Other reliable sources of information include:

• American Cancer Society – This is a nonprofit organization that covers all types of cancers.
• National Cancer Institute (NCI) – NCI’s 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 lead you to other verified and reliable 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 information about breast cancer.

It is completely normal to search for answers, especially in times of immense uncertainty. However, Dr. Fauveau reminds us that clarity shouldn’t come from the fastest or most convenient source of information; rather, it should come from trusted and reliable sources. By using information from credible sources, leaning on your care team, and setting digital boundaries, you can replace confusion with reassurance and confidence in your cancer care.