Cancer Testing Stress: When the Wrong Test Delayed Answers
- Deborah Ann Martin
- 7 hours ago
- 16 min read
The emotional and practical toll of cancer testing, waiting, and trying to catch cancer early.
This Is What Cancer Testing Looked Like for Me
People sometimes talk about cancer testing as though the stressful part is the test itself.
The needle.
The MRI machine.
The PET scan.
The biopsy.
The fasting.
The waiting.
For me, it has been all of that and everything surrounding it.
I have Stage IV uterine leiomyosarcoma, or uLMS, a rare cancer. My experience with cancer testing has been different from what people may imagine when they think about someone who is actively fighting a large, visible tumor.
I am often looking for the beginning.
I want to know as early as possible if something is changing so that I can talk with my doctors about what can be done before a problem becomes larger or more difficult to treat.
That makes every test important.
It also makes every delay stressful.
There was a period when my PET scan showed a change that concerned me. Around the same time, I was dealing with a new doctor who ordered the wrong MRI. My Signatera test became positive. Instead of moving quickly, the corrected testing was eventually scheduled months away.
Two tests had been scheduled together, nearly four hours of testing.
That was not realistic for me.
I asked radiology to separate the appointments.
I had the doctor's office send orders to facilities closer to home.
And then I started calling.
Sometimes I called radiology three times a day looking for cancellations.
I wasn't trying to be difficult.
I was trying to get answers.
I was trying to find out what was happening inside my body.
And when you have a cancer that can grow quickly, three months does not feel like an ordinary scheduling delay.
It feels like time.
I Wasn't Willing to Wait Three Months
The first MRI ordered by my new doctor was not the correct examination for what needed to be evaluated.
Radiology identified the examinations that were actually needed.
The corrected tests were scheduled much farther out than I was comfortable with.
I asked whether the order could be made urgent.
It wasn't.
I asked whether the tests could be done through another health system.
I began looking for cancellations.
When I saw that two lengthy examinations had been placed together, I asked radiology if they could be separated. That gave me more opportunities to find individual cancellation appointments.
I kept calling.
Three times a day wasn't unusual.
Eventually, I was able to move the testing forward.
I also asked the doctor's office to send the orders to facilities closer to my home.
That took persistence.
It also took energy I really didn't have.
At some point, I realized I was spending too much of my time fighting the healthcare system to get the testing I believed I needed.
So I left that doctor.
That decision wasn't about wanting a doctor who would simply agree with everything I said.
I wanted a doctor who understood the urgency of my history and would discuss the risks and benefits of waiting with me.
I Was Also Fighting Insurance for a PET Scan
The scheduling problem wasn't the only battle.
I had to fight my insurance company over PET imaging.
The insurance company questioned whether the PET scan was necessary for my cancer and wanted a less expensive imaging approach.
My cancer doctor disagreed and had to appeal.
There were peer reviews.
There were appeals.
There were explanations and additional information.
There were phone calls.
And there was me, waiting.
That kind of fight is difficult to explain to someone who has never been the patient.
The insurance company sees a request for a test.
I see a question about what is happening inside my body.
For a person with a rare cancer, the argument isn't always simply about whether a test exists.
It can be about whether the standard approach being suggested actually makes sense for my cancer, my history, and my situation.
The National Cancer Institute notes that financial concerns and insurance coverage issues can add stress to the cancer experience.
But when you're the person waiting for the authorization, it doesn't feel like an abstract financial issue.
It feels like another clock running.
My Cancer Is Rare, and That Matters
Uterine leiomyosarcoma is rare.
Rare cancer can create another layer of difficulty because not every doctor sees the same number of cases or approaches every situation with the same experience.
That doesn't mean every test a patient requests should be approved automatically.
It does mean I want my individual cancer history to be considered.
I don't want my care reduced to a generic checklist simply because the system is designed around more common cancers.
For me, the goal of testing has often been to identify a change before it becomes an obvious, large, active tumor.
I don't want to wait until cancer announces itself loudly.
I want the opportunity to find it while there may still be an opportunity to act.
Every Test Means Another Change
That is one of the things people don't always understand about cancer testing.
Every test means a change.
A PET scan means instructions.
A blood test may mean fasting.
Another laboratory test may mean changing when I take medication.
An MRI may mean lying still for a long period.
A biopsy may mean pain, recovery, and another period of waiting.
A Signatera test means another blood draw and another result to think about.
Then there are the appointments.
The travel.
The parking.
The paperwork.
The insurance authorization.
The phone calls.
The MyChart notifications.
The waiting.
And eventually, another test.
You get tired of being poked and prodded, as the saying goes.
But the physical part is only one piece.
You also get tired of the stress that comes with the testing.
Signatera Became Another Piece of the Puzzle
My Signatera test became positive.
That result mattered to me because it was another piece of information in a much larger picture.
But it didn't tell me everything.
A positive Signatera result does not tell me exactly where cancer is located.
It doesn't replace imaging.
It doesn't replace pathology.
It doesn't automatically answer what should happen next.
It is one piece of information that my doctors have to interpret with everything else.
That is how cancer testing works.
One test rarely tells the entire story.
You collect pieces.
Bloodwork.
Imaging.
Symptoms.
Physical examinations.
Biopsies.
Previous results.
New results.
Sometimes the pieces fit together neatly.
Sometimes they don't.
And sometimes you're left with more questions than answers.
Regular Bloodwork Is Not Always "Just Bloodwork"
People sometimes say, "At least it's only bloodwork."
There is no "only" when you're living with cancer.
Sometimes you have to fast.
Sometimes you have to modify what you eat.
Sometimes medications have to be adjusted or discussed.
Sometimes you have to arrange the appointment around work.
Sometimes you have to drive somewhere, get stuck waiting, have your blood drawn, and then go back to whatever you were doing.
Then you wait for the results.
And then you may have to do it again.
The blood draw itself might take minutes.
The mental process surrounding it can take much longer.
Testing Does Not Stop the Rest of Your Life
This may be the hardest part to explain.
Cancer testing doesn't happen in a quiet little bubble where cancer is the only thing happening.
I'm still working.
I'm still dealing with bills.
I'm still dealing with household responsibilities.
I'm still dealing with everyday drama.
I'm still dealing with relationships.
I'm still trying to have a life.
And while all of this is happening, another appointment appears on the calendar.
Another test.
Another result.
Another decision.
Another thing to worry about.
During this period of my life, I also had two of my children stop speaking to me altogether for two years.
They have my grandchildren.
Cancer didn't make that hurt less.
The medical appointments didn't make it disappear.
And the fact that I had cancer didn't mean the rest of life stopped happening.
Sometimes I was trying to process what might be happening medically while also dealing with things in my personal life that were painful in completely different ways.
That is what people don't always see.
Cancer Testing Can Be Physically and Emotionally Exhausting
You can be exhausted from the test itself.
You can be exhausted from preparing for it.
You can be exhausted from getting there.
You can be exhausted from waiting.
You can be exhausted from reading the report.
You can be exhausted from trying to understand the report.
You can be exhausted from explaining the situation to family.
You can be exhausted from calling insurance.
You can be exhausted from calling the doctor's office.
And you can be exhausted from doing all of that while still trying to work and function.
National Cancer Institute resources recognize anxiety and emotional distress as common parts of living with cancer.
But sometimes the stress isn't one dramatic event.
It's the accumulation.
One test.
Then another.
Then another.
The Test Can Be Stressful Before You Even Get There
Once a test is scheduled, it can start occupying your mind.
What will they find?
Will the insurance approve it?
Will I have to travel?
How long will it take?
Will I need someone to drive me?
Will I have to miss work?
Will I have to change my medication?
Will I have to fast?
Will the results appear in MyChart before my doctor calls?
What happens if something is wrong?
What happens if the test is inconclusive?
What happens if they find something?
And perhaps the biggest question:
What happens next?
The National Cancer Institute recognizes that anxiety can be associated with cancer diagnosis, treatment, follow-up, procedures, and uncertainty.
That uncertainty is one of the hardest parts.
Sometimes the Waiting Is Worse Than the Test
The test itself may take an hour.
The waiting can take weeks.
Sometimes months.
That was one of the hardest parts of my experience.
I wasn't simply waiting for an appointment.
I was wondering whether something could be growing while I waited.
That distinction matters.
For someone with a rare, fast-growing cancer, waiting doesn't necessarily feel neutral.
It can feel like lost time.
I understood that a doctor has to consider whether testing is urgent.
I also believed my history deserved to be part of that decision.
I needed someone to explain to me:
What is the risk of waiting?
That question matters.
MyChart Gives You Information, Not Always Understanding
Patient portals can be extremely useful.
I can see my results.
I can keep track of dates.
I can compare reports.
I can prepare questions.
But sometimes the report appears before the doctor has explained it.
Then I'm sitting there reading phrases such as:
suspicious
indeterminate
enhancing
uptake
lesion
cannot exclude
metastatic
Those words mean something medically specific.
To a patient who has already experienced metastatic cancer, they can feel enormous.
The National Cancer Institute emphasizes communication between patients and healthcare professionals as an important part of cancer care.
I have learned that there is a difference between having access to information and understanding what the information means in context.
One Test Does Not Always Answer the Question
That has been one of the biggest lessons for me.
An MRI may show something.
A PET may show something else.
A bone scan may add another piece.
Bloodwork may change.
Signatera may become positive.
A biopsy may be inconclusive.
And suddenly you have five pieces of information that still don't give you one simple answer.
That can be incredibly frustrating.
You want someone to say:
"Here is exactly what this is."
Cancer doesn't always cooperate.
Sometimes doctors have to work with probabilities, patterns, and incomplete information.
That is why communication matters so much.
I Have Learned to Ask More Questions
When I have a test ordered now, I want to understand:
Why is this test being ordered?
What are you looking for?
How urgent is it?
What happens if it is delayed?
Is this the best test for my particular cancer?
Are there other options?
Does insurance require authorization?
Can it be performed closer to home?
How long will it take?
Do the tests have to be done together?
When should I expect the results?
Who will explain them?
What happens if the result is unclear?
These aren't unreasonable questions.
They're part of participating in my own care.
Sometimes Self-Advocacy Looks Like Being Persistent
I didn't enjoy calling three times a day.
I didn't want to keep asking for cancellations.
I didn't want to ask the doctor's office to send orders somewhere else.
I didn't want to fight insurance.
I didn't want peer reviews and appeals.
I didn't want to leave a doctor.
But I also didn't want to sit quietly and accept a three-month delay when I was worried about a cancer that could move quickly.
There is a difference between demanding that everything happen immediately and asking your healthcare team to explain the urgency, risks, and alternatives.
Patients deserve that conversation.
I Had to Decide When It Was Time to Leave
Leaving a doctor is not a decision I take lightly.
Doctors have difficult jobs.
They have schedules.
They have hundreds of patients.
They have to balance risks.
But I also have to live with the consequences of my cancer.
When I repeatedly felt that the urgency of my situation wasn't being understood, I had to make a choice.
I left.
For me, finding a doctor who understood my cancer and understood why I wanted to look for recurrence early was important.
The National Cancer Institute notes that rare cancers can present challenges related to diagnosis, treatment, and access to specialized expertise.
That is part of why finding the right medical team matters so much to me.
Testing Is Also How I Protect Myself
For all the frustration, I don't want to stop testing.
I may complain about it.
I may dread it.
I may get tired of it.
But testing also gives me information.
It can identify changes.
It can help doctors compare what is happening now with what happened before.
It can help guide decisions.
It can sometimes find a problem before it becomes obvious.
Follow-up care after cancer can include examinations, laboratory tests, imaging, and other monitoring depending on the individual situation.
So there is a strange contradiction.
The testing that causes me stress is also part of what gives me peace of mind.
I don't have to like it to understand why I need it.
What I Wish People Understood About Cancer Testing
I wish people understood that a cancer test isn't just an appointment.
It can mean changing your schedule.
Missing work.
Driving a long distance.
Finding transportation.
Changing what you eat.
Changing when you take medication.
Getting poked.
Getting scanned.
Getting biopsied.
Fighting insurance.
Waiting for authorization.
Waiting for the appointment.
Waiting for the result.
Waiting for the doctor to call.
And then doing it again.
And again.
And again.
All while life continues around you.
What I Wish Doctors Understood
I wish doctors understood that three months doesn't always feel like three months to a cancer patient.
I wish they understood that a patient with a rare cancer may have a very different perspective on waiting than someone who has never experienced recurrence.
I wish they understood that when I ask whether something can be moved up, I'm not necessarily questioning their medical judgment.
I'm telling them I'm scared.
I'm asking them to help me understand the risk.
I wish they understood that when I call repeatedly, there is usually a reason.
I don't want to live on the phone with radiology.
I want to know what is happening.
What I Wish Families Understood
I also wish families understood that cancer testing can affect someone's mood and behavior.
I may be distracted.
I may be short-tempered.
I may be tired.
I may not want to talk.
I may want to talk about nothing but the test.
Or I may want to talk about anything except the test.
It doesn't mean I don't love the people around me.
Sometimes I'm simply overwhelmed.
And sometimes the people closest to me are dealing with their own emotions.
Cancer doesn't automatically make relationships easier.
Sometimes it exposes how difficult they already were.
What Can Help When Testing Becomes Overwhelming
There isn't one solution that makes cancer testing easy.
But some practical things can help.
Before the test:
Confirm the exact test being ordered.
Ask why it is needed.
Ask how urgent it is.
Confirm insurance authorization.
Ask whether another facility can perform it.
Ask about fasting or medication instructions.
Ask how long the appointment will take.
Arrange transportation if needed.
Write down questions.
During the waiting period:
Keep a record of appointments and results.
Know when results are expected.
Know who will review them with you.
Decide whether you want to read MyChart immediately.
Have someone you trust available if you need support.
Try to maintain ordinary routines when possible.
Limit internet searching that only increases fear.
If something goes wrong:
Ask what happened.
Ask what the next step is.
Ask whether the order can be corrected.
Ask whether another facility can perform the test sooner.
Ask whether a patient navigator is available.
Keep copies of your records and orders.
Don't be afraid to ask another qualified doctor for an opinion.
Self-advocacy does not mean refusing medical advice.
It means participating in the conversation about your care.
I Am Still Learning How to Live With the Testing
I don't think I will ever become completely comfortable with cancer testing.
Every test reminds me of what I've been through.
Every abnormal result makes me wonder what comes next.
Every normal result gives me relief—and then eventually another test appears on the calendar.
That's the cycle.
And sometimes I'm simply tired.
Tired of needles.
Tired of fasting.
Tired of changing medications.
Tired of machines.
Tired of appointments.
Tired of insurance companies.
Tired of appeals.
Tired of waiting.
Tired of explaining.
Tired of being told to wait.
Tired of wondering.
But I keep testing.
Because I don't want to wait until cancer becomes impossible to ignore.
I Want to Find the Beginning
This is probably the most important thing I want people to understand about my story.
I am not looking for cancer because I want bad news.
I'm looking because I want time.
Time to know.
Time to investigate.
Time to discuss options.
Time to treat something while it may still be limited.
Time to make decisions.
With uterine leiomyosarcoma, I know my cancer history.
I know what recurrence means to me.
I know why I don't want to simply wait until something becomes large enough or obvious enough that everyone agrees there is a problem.
I want to find the beginning.
That is why I fought for the PET scan.
That is why I questioned the wrong MRI.
That is why I called radiology three times a day.
That is why I asked for the tests to be separated.
That is why I asked the doctor's office to send orders closer to home.
That is why I went through insurance appeals and peer reviews.
And that is why I eventually left a doctor when I no longer felt heard.
Cancer Testing Is Stressful. But I Still Need It
I get tired of being tested.
I get tired of being poked and prodded.
I get tired of preparing.
I get tired of waiting.
I get tired of insurance fights.
I get tired of wondering what the next result will say.
I get tired of trying to fit cancer appointments into an ordinary life that refuses to stop.
But I also know what testing can give me.
Information.
A chance to recognize change.
A chance to ask questions.
A chance to make decisions.
And sometimes, a chance to treat something before it becomes much harder to treat.
Cancer testing is stressful.
But for me, not knowing is stressful too.
So I keep going.
I keep asking questions.
I keep advocating for myself.
I keep showing up.
Because I'm not trying to find cancer.
I'm trying to find it early enough to do something about it.
Frequently Asked Questions
Why is cancer testing so stressful?
Cancer testing can involve much more than the test itself. Patients may deal with preparation, transportation, insurance authorization, scheduling, needles or procedures, waiting for results, financial concerns, and uncertainty about what the results may mean.
Can cancer testing cause anxiety?
Yes. Cancer-related testing and waiting for results can contribute to anxiety and emotional distress. The National Cancer Institute provides information about managing anxiety and distress during and after cancer.
Why can testing be especially stressful with a rare cancer?
Rare cancers may involve less familiar diagnostic and treatment pathways and can sometimes require specialized expertise. Patients may also encounter additional challenges accessing appropriate care or traveling to specialists.
Why did I fight my insurance company over a PET scan?
In my situation, I believed PET imaging was important for monitoring my rare, fast-growing cancer and looking for early evidence of recurrence. My doctors had to appeal the insurance decision.
What is Signatera?
Signatera is a personalized circulating tumor DNA test. In my experience, the result became another piece of information that my doctors considered alongside imaging, symptoms, and other testing. A blood-based tumor DNA result does not by itself identify the location of cancer.
Should patients ask how urgent a cancer test is?
Patients can reasonably ask why a test is being ordered, how soon it is needed, what the risks of delaying it may be, and what alternatives exist. Those questions can help patients understand their care and participate in decisions.
What can patients do if a cancer test is scheduled too far away?
Patients can ask whether the order can be marked urgent when medically appropriate, whether another facility can perform the test, whether cancellations are available, whether separate appointments are possible, and whether a patient navigator can help.
Should patients read their test results in MyChart?
That is a personal decision. Some people prefer to read results immediately, while others prefer to wait until their doctor can explain them. Neither approach is necessarily right for everyone.
Does every abnormal test mean cancer has returned?
No. Abnormal imaging, blood tests, or other findings may have multiple explanations. Cancer diagnosis and treatment decisions generally require consideration of the complete clinical picture rather than one result alone.
A Note to Other Cancer Patients
If you are exhausted by testing, you're not necessarily doing anything wrong.
You may simply be tired.
Tired of needles.
Tired of appointments.
Tired of waiting.
Tired of explaining.
Tired of fighting.
Tired of being afraid of what the next test might show.
You can be grateful that testing exists and still hate everything about having to go through it.
Both things can be true.
And if you need to advocate for yourself, ask questions, request clarification, seek another opinion, or ask whether there is a faster or more appropriate way to obtain testing, that doesn't make you a difficult patient.
Sometimes it means you are trying to take an active role in your own care.
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References
**National Cancer Institute. “Managing Anxiety and Distress in Cancer Survivors.”**
**National Cancer Institute. “Adjustment to Cancer: Anxiety and Distress.”**
**National Cancer Institute. “Follow-Up Medical Care.”**
**National Cancer Institute. “Life After Cancer Treatment.”**
**National Cancer Institute. “Communication in Cancer Care.”**
**National Cancer Institute. “Tests and Procedures Used to Diagnose Cancer.”**
**National Cancer Institute. “The Challenges of Living With Metastatic Cancer.”**
About the Author:
Deborah Ann Martin is the founder of Surviving Life Lessons, a published author, poet, speaker, and trainer with over 20 years of management experience across multiple industries. An MBA graduate, U.S. veteran, single mother, and rare cancer survivor, Deborah brings both professional expertise and lived experience to her writing on resilience, leadership, personal growth, and overcoming adversity. Her mission is to empower others with practical wisdom and real-life insight to navigate life’s challenges with strength and purpose.
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