First Things First
Start With These Four Things
Know your diagnosis
Find out what type of cancer you have, where it began, its stage, and whether more testing is still needed.
Understand the next step
Ask what happens next: another test, another appointment, a treatment decision, or the beginning of treatment.
Know who to call
Find out who handles questions, new symptoms, side effects, and concerns after normal office hours.
Take one decision at a time
You do not need to solve the entire future. Concentrate on the decision directly in front of you.
Understand Your Diagnosis
Cancer is an enormous category of diseases. Two people who both have cancer may have completely different diagnoses, treatments, and experiences.
Start by learning a few basic things:
- What type of cancer do I have?
- Where did it begin?
- What stage is it?
- Has it spread anywhere else?
- Do we have all the information needed to choose treatment?
Depending on the cancer, your doctors may also recommend biomarker or molecular testing. These tests look for characteristics such as mutations or proteins that may help guide treatment.
A useful question: “Is there any biomarker or molecular testing that matters for my cancer?”
Do not worry if you cannot remember every term yet. You will have time to learn the language.
Ask What the Treatment Is Trying to Do
Cancer treatments can have different goals. Treatment may be intended to remove cancer, shrink it, destroy remaining cancer cells, reduce the chance of recurrence, relieve symptoms, or control the disease for as long as possible.
Ask: “What are we trying to accomplish with this treatment?”
You can also ask how your care team will determine whether the treatment is working and when they expect to check.
Know Who Is Helping You
Cancer care usually involves more than one doctor. Your team may include oncologists, nurses, surgeons, radiation specialists, social workers, dietitians, and others.
You do not need to understand everyone's role immediately.
For Now, Know These Three Things
- Who is directing my cancer treatment?
- Who should I call when I have a question or new symptom?
- Who do I contact after hours?
Practical tip: Save the important numbers in your phone before you need them.
Save Yourself Work Later
Get Organized Early
Cancer can generate a mountain of paperwork: treatment information, test results, appointment summaries, insurance documents, bills, contact information, medication lists, and forms from different parts of your care team.
You do not need an elaborate system, but creating one early can save a lot of frustration later.
Keep a Home File
I use file boxes with hanging folders to keep the larger collection of documents organized.
- Test and pathology reports
- Treatment and appointment paperwork
- Insurance statements and EOBs
- Medical bills and receipts
- Contact information
- Other important medical or benefit documents
Build an Appointment Binder or Folder
I also keep the most useful information in a binder that goes with me to appointments.
- An updated medication and supplement list
- Important test results
- Current treatment information
- Care-team names and phone numbers
- Notes about symptoms and side effects
- Questions for upcoming appointments
- Business cards and specialist contact information
Practical tip: Keep the binder current. An outdated medication list or old treatment plan becomes much less useful when you actually need it.
A Word About Numbers
Be Careful With Survival Statistics
Many people search for survival rates soon after diagnosis. I understand why.
But a survival statistic describes what happened to a group of people. It cannot tell you precisely what will happen to one individual. Those groups may include people of different ages, health conditions, cancer biology, treatments, and time periods.
New treatments can also change faster than older statistics can fully reflect.
If you find a frightening number online, bring it to your oncologist and ask:
“What does this actually mean for someone with my specific cancer and treatment options?”
A statistic is information. It is not a prophecy.
One Last Thing
Stay With What Is Known
A cancer diagnosis has a way of pulling your mind far into the future.
Try not to mistake everything you can imagine for something that has already happened.
There may be treatments you have not learned about yet, people you have not met yet, and answers you do not have yet.
For now: learn the diagnosis, meet your team, ask the next question, and deal with the next decision.
That is enough for today.
Medical note: This page provides general educational information and personal perspective. It is not medical advice and should not replace guidance from your oncology team or other qualified medical professionals.
