Newly Diagnosed
You can take an active role in your healthcare by learning what you need as you go, asking questions when something isn’t clear, and keeping what matters to you part of the conversation.
You don’t need a perfect plan. What matters is finding a place to start.
What matters most right now?
Choose the area that best matches what you need.
Understand what’s happening
Make sense of the information in front of you and identify what you still need to understand.
Prepare for what comes next
Get ready for appointments, questions, and the decisions immediately ahead.
Think about what matters to you
Keep your priorities, daily life, and the people you trust part of the conversation.
Learn from others
Hear how others navigated uncertainty and found their own way forward.
UNDERSTAND WHAT’S HAPPENING
Start with what you need to understand now.
A cancer diagnosis can introduce a lot of new information at once. You may not need to understand all of it right away. Start with what you need now, and ask when something isn’t clear.
For us, understanding more has helped us participate more actively in Scott’s care.
ONE PLACE TO BEGIN
Read Your Medical Records
Sometimes the record tells you something no one on your care team has.
Reading Scott’s medical records has changed the course of our cancer journey more than once. It helped us discover his recurrence, and later helped Scott find information that led him to ask about a targeted treatment option.
ANOTHER OPTION
Read: The Report that Changed Everything
Four and a half years after surgery that left Scott “cancer free,” one sentence in a radiology report showed the cancer had returned. And no one told us.
PREPARE FOR WHAT COMES NEXT
A little preparation can make the next conversation easier.
You do not need to anticipate every decision. Start with the next appointment and what would help you leave with a clearer understanding of what comes next.
Before your next medical appointment, consider:
What do I want to ask?
What do I want to understand?
What happens next?
VIDEOS
Take an Active Role in Your Healthcare
In this video, we talk about the importance of participating in your care without feeling responsible for becoming a medical expert.
READ
You Don’t Have to Become Your Own Doctor
In this reflection, we share how participating in your care can help without making you responsible for becoming a medical expert.
RELATED PRACTICAL HELP
Read Your Medical Records
Review what was documented, notice what is unclear, and prepare what you want to ask next.
THINK ABOUT WHAT MATTERS TO YOU
Consider what each option could mean for your life.
There may be more than one reasonable path forward. Understanding the medical options matters. So does considering how each one fits your priorities, daily life, and the people you trust.
We suggest asking not only “What are my options?” but also “What matters to me as I consider them?”
Questions to consider:
What matters most to me right now?
What might each option mean for my life?
What do I still need to understand?
Who do I want involved?
READ
Which Path Is Right for You?
There may be no single right path—only the decision that best fits your circumstances, priorities, and life.
READ
The Decision Was Mine. The Conversation Was Ours.
A personal decision can still be shaped by questions, second opinions, and the people you trust.
LEARN FROM PEOPLE WHO’VE BEEN THERE
Other people’s experiences can help you see what may be ahead.
Medical information can explain the options. People who have lived through cancer can help you notice the questions, tradeoffs, and ordinary realities that may come with them.
Someone else’s experience doesn’t have to become your answer to be useful.
What we listen for:
What surprised them?
What helped them make decisions?
What do they wish they had known?
What would they do differently?
VIDEOS
The Value of Shared Experience
We talk about what another person’s story can offer—and why it does not have to become your path.
Our Cancer Story
One experience, shared honestly.
Follow how our story began and the larger journey that shaped Life Between Scans.
Hear how our cancer story began
Follow the larger journey
If you’re not sure what would be most useful
If we were sitting with you, here are three things we’d suggest exploring first.
PRACTICAL GUIDE
Read Your Medical Records
See what was documented, notice what is unclear, and prepare what you want to ask.
VIDEOS
Becoming an Active Participant in Your Own Healthcare
A conversation about participating in your care without feeling responsible for becoming the medical expert.
VIDEOS
The Value of Shared Experience
Hear what another person’s story can offer without turning it into your answer.
FOR CAREGIVERS
The people beside you matter, too.
The people who care about you may be finding their way through this experience, too. Our Caregivers page offers reflections, practical ideas, and a place to begin.