Finding out you have cancer is one thing.
Living with the fact that you have cancer is something completely different.
After the diagnosis, there comes a point when the shock begins turning into appointments, tests, doctors, decisions and conversations you never imagined you would have.
Cancer starts becoming part of everyday life.
That happened very quickly for me.
When Cancer Became a Word in Our House
My first major appointment after finding out I had breast cancer wasn't with an oncologist.
I met with the surgeon and an oncology nurse navigator—the nurse who would help guide me through the beginning of my cancer care.
I remember going into that appointment trying desperately to keep myself together.
I wanted to listen.
I wanted to understand.
I didn't want to become emotional.
Then they started talking.
And I couldn't stop crying.
For the doctors and nurses in that room, these were conversations they had many times before.
For me, this was the first time.
And the crying didn't end when I left the doctor's office.
I cried going to work.
I cried coming home from work.
I cried in the shower.
I cried at night in bed.
I had read that emotionally dealing with cancer can sometimes feel similar to grieving, and for me, that description made sense.
I wasn't grieving a person.
In many ways, I was grieving the life I had just a few weeks earlier—the life in which cancer wasn't something my husband and I talked about every day.
Because once the diagnosis was certain, cancer became a word in our house.
Appointments. Cancer.
Doctors. Cancer.
Tests. Cancer.
Plans. Cancer.
Suddenly, so many conversations somehow came back to the same thing.
Cancer Reaches Beyond the Person Who Is Diagnosed
Once we knew for certain that I had cancer, we had to begin telling the people we loved.
That was another part of cancer I hadn't really thought about before experiencing it.
You're trying to understand what's happening to you, and at the same time, you're trying to figure out how to tell other people.
Some people become frightened.
Some have questions you don't know how to answer yet.
Some want to reassure you.
Some need reassurance from you.
And sometimes you find yourself trying to protect the people you love while you're still terrified yourself.
That's difficult.
There isn't necessarily a perfect way to tell people you have cancer. Every family and every relationship is different.
But cancer taught me something very quickly:
Cancer may be diagnosed in one person's body, but its fear can spread through an entire family.
The diagnosis belongs to the patient.
But the uncertainty, worry and disruption can reach far beyond that person.
And suddenly, cancer isn't just something being discussed in doctors' offices.
It's part of conversations at home too.
Then Come the Appointments
After that first meeting came more tests.
More appointments.
More doctors.
Then more tests.
Eventually, I would meet the different specialists involved in my care, and a treatment plan would begin to take shape.
Before cancer, I imagined that if something serious ever happened to me, the doctors would simply tell me what needed to be done.
I would listen.
They would treat me.
That isn't quite how it happened.
Eventually, the doctors started asking me what I wanted to do.
That was something I wasn't prepared for.
What Do You Mean, I Have to Decide?
When it came time to talk about breast surgery, suddenly there were choices.
Lumpectomy.
Single mastectomy.
Double mastectomy.
Reconstruction.
No reconstruction.
There was so much information.
I remember being shocked by how much there was to know—and by how much I didn't know.
Only a short time earlier, none of these were decisions I had ever imagined making.
Now they were decisions about my body.
My future.
My cancer.
One thing my surgeon told me has stayed with me.
She told me to write down my questions and bring them to our next appointment.
It sounded simple.
There was just one problem.
What questions was I supposed to ask?
How could I ask the right questions when I barely understood what was happening?
Was there something important I didn't even know enough about cancer to realize I should be asking?
That is one of the strangest parts of suddenly becoming a patient.
People tell you to educate yourself and advocate for yourself—and they're right.
But nobody hands you all the knowledge you need to suddenly become an expert in a disease you never expected to have.
The Questions You Don't Know to Ask
My husband and I made one rule early in the process:
Don't Google too much.
We wanted information, but we didn't want information about every possible breast cancer diagnosis, every treatment, every complication and every frightening possibility.
We wanted information that applied to my case.
We researched.
Some of what we found was useful.
Some of it was too vague.
Some of it didn't apply to me at all.
The same thing happened when we searched for questions to ask my doctors. Some suggested questions were incredibly helpful. Others weren't relevant to what I was facing.
And that taught me something.
The internet can help you understand your diagnosis, but it can also overwhelm you with information that has absolutely nothing to do with you.
Cancer isn't one single disease with one single experience.
Your diagnosis matters.
Your test results matter.
Your circumstances matter.
Research helped us, but eventually the questions had to come back to the people who actually understood my case.
And I slowly realized there really wasn't such a thing as a stupid question.
If I didn't understand something, I needed to ask.
If something scared me, I could ask.
If I found something online and didn't know whether it applied to me, I could ask.
Sometimes the most difficult questions are simply the ones you don't yet know you need to ask.
Making a Decision About My Body
Eventually, my tests and conversations with my doctors narrowed my surgical decision.
Based on the information from my medical and genetic testing, I had to decide between a single mastectomy and a double mastectomy.
And once again, the decision was mine.
I chose the single mastectomy.
For me, the reasoning was simple.
Cancer was affecting one breast.
The other breast was healthy.
I didn't want to remove a healthy breast.
That was the decision that felt right for me based on the information I had about my own case.
Another woman may make a completely different decision.
And that's important.
When you're dealing with cancer, people can tell you what they did. The internet can tell you what other patients chose. Friends and family can have opinions. Doctors can explain the medical considerations.
But another person's decision isn't automatically the right decision for you.
You have to understand your diagnosis, understand your options, ask your medical team the questions that matter to you and make decisions with them based on your own circumstances.
There Are Things You Don't Even Know to Ask About
One thing I didn't know enough to ask about was my lymph nodes.
Before my surgery, I had been told that my lymph nodes did not appear to be affected by the cancer.
So as far as I understood, that wasn't something I needed to worry about.
But during the surgery, my surgeon discovered that the cancer had reached my lymph nodes, and they had to be removed.
I wasn't prepared for that.
Before cancer, I didn't understand what role lymph nodes could play in breast cancer. I didn't understand how doctors evaluated them, what could happen if cancer was found there or what removing them could mean for me afterward.
I certainly didn't know enough to ask about the possibility that what we knew before surgery could change once the surgery actually began.
And lymph-node removal wasn't simply something that happened during an operation and then ended when the surgery was over. It introduced other things I would need to understand and manage afterward, including the risk of lymphedema.
I didn't know enough to ask about any of that.
And that experience reinforced something I had already begun to understand:
Sometimes you can't ask the question because you don't even know the subject exists.
If I could go back to those appointments now, I would ask more.
I would ask what they knew about my lymph nodes before surgery. I would ask how they would check them during surgery. I would ask what would happen if they discovered cancer there. And I would ask what removing lymph nodes could mean for my life afterward.
Not because asking those questions necessarily would have changed what happened.
But because I would have understood what could happen before it happened.
That's why one of the most valuable questions we can ask our medical team isn't necessarily a complicated medical question.
It can simply be:
“What could you discover during surgery that we don't know today, and if you find it, what might you need to do?”
You Become a Cancer Patient Before Treatment Even Begins
Looking back, I realize that battling cancer didn't begin on the operating table.
It started much earlier.
It started when cancer became part of the conversations in our home.
It started when we had to tell the people we loved.
It started with calendars suddenly filling with medical appointments.
It started when I met doctors whose names and specialties I never expected to know.
It started when I had to learn terminology I had never heard before.
And it started when someone handed me options about my own body and asked:
What do you want to do?
Cancer forces you to learn very quickly.
Not because you want to become knowledgeable about cancer.
Because suddenly, you have to.
But perhaps one of the first lessons I learned was that I didn't need to understand everything about cancer.
I needed to begin understanding my cancer.
I needed doctors I could ask questions.
I needed people beside me when the information became overwhelming.
And I needed to give myself permission to say:
I don't understand. Please explain it to me again.
Because battling cancer isn't only about what happens to your body.
It begins with learning how to live in a world you never expected to enter.
If You Don't Know What to Ask, Start Here
This is the part I wish I had when my surgeon first told me to write down my questions.
Not a giant list from the internet.
Not every possible question for every possible type of breast cancer.
Just somewhere to start.
If you've recently been diagnosed with breast cancer, these are some questions you may want to discuss with your medical team:
- What exactly does my pathology report say, and can you explain it to me in language I can understand?
- What type of breast cancer do I have, and what do we know about it so far?
- Do I need additional tests before we can make treatment decisions?
- Who will be part of my medical team, and what does each person do?
- What are my treatment and surgical options, and why are you recommending these options for my case?
- What are the benefits and possible risks of each option?
- How much time do I reasonably have to make this decision?
- Would genetic testing or genetic counseling be relevant to my situation?
- What do we know about my lymph nodes? Is there any indication the cancer may have reached them?
- How will you determine whether cancer is present in my lymph nodes?
- Will lymph nodes need to be removed during surgery? If so, what should I understand about why they're being removed and the possible effects afterward?
- What should I know about the risk of lymphedema if lymph nodes are removed?
- If cancer is found in my lymph nodes, could that affect my treatment plan?
- If surgery is being discussed, what should I understand about lumpectomy versus mastectomy for my diagnosis?
- If mastectomy is an option, what should I understand about removing one breast versus both?
- What reconstruction options—including choosing no reconstruction—are available to me?
- How could the different options affect my recovery or treatments I may need afterward?
- If I find something online, can I bring it to you and ask whether it actually applies to my diagnosis?
- Who should I contact if I think of questions after I leave this appointment?
And perhaps the question I wish someone had suggested to me is the simplest:
“What haven't I asked that you think I should understand before making this decision?”
Because when you've just been diagnosed, you don't always know what you're missing.
Write things down.
Bring someone with you if you can.
Ask the same question twice if you didn't understand the answer the first time.
And don't be embarrassed to say that something doesn't make sense.
You aren't supposed to arrive at your first cancer appointments already knowing how to be a cancer patient.
You're learning something you never wanted to have to learn.
One appointment.
One question.
One decision at a time.
This article shares one person's experience with breast cancer and is intended for personal reflection and general education. The questions above are conversation starters, not medical recommendations. Breast cancer diagnoses and treatment options vary considerably between individuals. Decisions about testing, lymph-node evaluation or removal, surgery, reconstruction and treatment should be discussed with your healthcare team.
