The Stress of Cancer Testing: Living With Uncertainty
- Deborah Ann Martin
- 4 days ago
- 18 min read
The emotional toll of testing, waiting, and trying to find cancer early
People often talk about the stress of cancer treatment.
They talk about chemotherapy.
They talk about surgery.
They talk about radiation.
They talk about losing hair, losing strength, losing time, and trying to recover.
But there is another part of cancer that can become exhausting in its own way:
testing.
Blood tests.
Tumor-marker testing.
Signatera.
PET scans.
MRIs.
Biopsies.
Ultrasounds.
Pathology.
Repeat imaging.
Follow-up appointments.
Insurance authorizations.
Peer reviews.
Appeals.
Waiting.
And then doing it all again.
When you have cancer, testing is supposed to give you information.
Sometimes it does.
Sometimes it gives you more questions.
And sometimes the hardest part is knowing that every test could change what happens next.
Testing Becomes Part of Your Life
Before cancer, I rarely thought about laboratory testing beyond the occasional routine blood draw.
Cancer changed that.
Testing became part of my calendar.
Part of my conversations with doctors.
Part of my financial planning.
Part of my work schedule.
Part of my emotional life.
I learned to recognize different types of testing and what I needed to do before each one.
Sometimes I needed to fast.
Sometimes medications needed to be adjusted.
Sometimes I had to change what I ate.
Sometimes I needed to drink more water.
Sometimes I had to travel.
Sometimes I needed someone to drive me.
Sometimes I had to rearrange work.
Sometimes I simply had to sit and wait.
The test itself might take minutes.
The preparation and emotional aftermath could take much longer.
You Get Tired of Being Poked and Prodded
There is a reason people say they are tired of being poked and prodded.
Eventually, it stops being a figure of speech.
There are needles.
Blood draws.
IVs.
Port access.
Injections.
Imaging.
Biopsies.
Physical examinations.
Someone is always asking you to hold still, change clothes, lie down, drink something, stop eating, start eating, take something, stop taking something, or come back another day.
One test leads to another.
One abnormality leads to another question.
One question leads to another appointment.
The individual procedures may be medically necessary.
That does not mean the cumulative experience is easy.
Every Test Can Require a Change
One of the exhausting things about cancer testing is that nothing feels completely separate from the rest of life.
A blood test may require fasting.
Another test may involve medication instructions.
A PET scan may require specific preparation.
An MRI may require time away from work.
A biopsy may require transportation and recovery.
A Signatera blood draw becomes another date to remember.
Regular bloodwork may monitor things that affect whether treatment can continue safely.
The testing itself becomes another job.
And I already have a job.
Signatera Became Part of the Equation
I have also had Signatera testing, which looks for circulating tumor DNA associated with my known cancer.
For me, that testing became another piece of information to consider alongside imaging, bloodwork, symptoms, and what my doctors were seeing.
The difficult part is that no single test necessarily answers every question.
A result can be reassuring.
A result can be concerning.
A result can tell you that something deserves attention without telling you exactly where the problem is.
That can leave you waiting for the next piece of information.
And waiting is stressful.
Regular Bloodwork Is Not Always “Just Bloodwork”
People sometimes hear that you are getting bloodwork and think:
“It's just a blood test.”
But when you have cancer, you know that the numbers matter.
Blood counts.
Kidney function.
Liver function.
Electrolytes.
Other laboratory values.
Depending on the treatment and circumstances, doctors may use blood tests to monitor your health, treatment effects, and whether it is safe to proceed with certain treatments or procedures.
And sometimes you have to prepare for those tests.
Maybe you cannot eat.
Maybe you need to take or avoid a medication.
Maybe you have to change your normal routine.
Then you wait for the results.
You don't just get blood drawn.
You wait to find out what your body is doing.
Cancer Testing Can Affect What You Eat
Some tests require fasting or other preparation.
That may sound minor until you are already dealing with nausea, fatigue, medication side effects, or an unpredictable appetite.
Food can already be complicated during cancer treatment.
Then another test comes along with another set of instructions.
Eat this.
Don't eat that.
Don't take this medication.
Drink this much water.
Arrive at this time.
Do not forget to bring this information.
It is one more thing to manage when your mental energy is already limited.
Testing Takes Time Away From Work
Cancer did not stop my responsibilities.
I still had work.
I still had household responsibilities.
I still had bills.
I still had appointments.
I still had family issues.
Testing had to fit somewhere inside all of that.
Sometimes an appointment meant missing work.
Sometimes it meant changing my schedule.
Sometimes it meant working later.
Sometimes it meant losing an entire day because of travel and waiting.
And then I still had to go back to work.
The calendar does not create extra hours simply because you have cancer.
I Was Still Living Through Other Problems Too
Cancer does not isolate itself from the rest of your life.
While I was dealing with testing and cancer treatment, I was also dealing with ordinary human problems.
Relationships.
Family conflict.
Work.
Money.
Household responsibilities.
Emotional stress.
And some things were anything but ordinary.
Two of my children stopped talking to me completely for about two years.
They both have my grandchildren.
That kind of loss does not disappear because you have a cancer appointment.
You can walk into an oncology office carrying fear about a test result while also carrying heartbreak about your family.
You can have a blood draw in the morning and cry about something completely unrelated that afternoon.
Cancer does not erase the rest of your life.
It adds another enormous problem to it.
Testing Stress Does Not Happen in a Vacuum
That is something I wish more people understood.
If I am stressed about a PET scan, it may not be because I am simply afraid of the machine.
I may already be exhausted.
I may have slept badly.
I may be worried about work.
I may be worried about money.
I may be dealing with family problems.
I may be worried about my grandchildren.
I may have another medical appointment tomorrow.
I may be waiting for a pathology report.
I may have an insurance appeal underway.
All of those things exist at the same time.
The test becomes one more weight on a body already carrying plenty.
My PET Scans Became Something I Had to Fight For
One of the most stressful parts of my cancer experience has been fighting insurance companies over testing.
My situation is not always the same as the typical cancer story people imagine.
With many cancers, patients have an identifiable active tumor that doctors are treating.
My concern with uterine leiomyosarcoma has often been different.
I want to know if the cancer is beginning to return before it becomes a large, obvious problem that is harder to treat.
That difference matters to me.
I want surveillance that gives my doctors the best possible chance to identify concerning disease early.
The Insurance Company Did Not Always See It That Way
There were times when my doctors wanted PET imaging and the insurance company questioned whether it was necessary.
I had to deal with:
Prior authorization
Peer review
Appeals
Medical documentation
Insurance decisions
Calls between healthcare providers and insurers
That is another layer of cancer stress that does not appear on a medical chart as a symptom.
The chart may say:
PET scan requested.
My experience may have been:
PET scan requested → denied → doctor appeal → peer review → more documentation → waiting → another call → another decision.
Meanwhile, I was still the person wondering what was happening inside my body.
Fighting Insurance Is Exhausting
There is something particularly frustrating about having to argue for testing when you are the person who has to live with whatever happens next.
I am not an insurance expert.
I am not a radiologist.
I am not an oncologist.
But I am the person living with a rare and aggressive cancer.
I am the person who knows what it feels like when the cancer returns.
I am the person who has to live with the consequences of finding it late or finding it early.
So when I believe a test is important, having to fight simply to get the test approved adds another layer of emotional exhaustion.
Peer Reviews Sound Administrative
“Peer review” sounds like a neutral administrative process.
It may be.
But when you are the patient waiting for a test, it feels very personal.
Someone somewhere is reviewing your case to decide whether the test your doctor requested is justified.
You are waiting.
Your doctor is waiting.
The insurance company is deciding.
And your cancer does not necessarily wait for the paperwork.
That is what makes these disputes so emotionally difficult.
Appeals Are Another Job
An insurance appeal can require:
Documentation
Phone calls
Medical records
Explanations
Follow-up
Patience
Persistence
I already have a job.
I already have cancer.
I should not need a second job just to navigate the system that is supposed to help pay for my medical care.
Yet patients often become their own case managers.
We keep track of dates.
We remember names.
We save letters.
We check portals.
We call offices.
We ask whether the authorization went through.
We ask whether the appeal was received.
We ask what happens next.
And then we wait.
Waiting for Testing Can Feel Different When Early Detection Matters
This is one of the hardest parts for me.
If I knew there was a large tumor and everyone was already treating it, the situation would be frightening but more concrete.
My concern is often about finding something before it becomes obvious.
I want to know when something is starting.
I want to know when there is a change.
I want to know when my cancer may be returning.
Because with a cancer like uterine leiomyosarcoma, I do not want to discover a recurrence only after it has become extensive.
I want my doctors to have information early enough to make decisions.
That makes surveillance emotionally complicated.
The absence of a known tumor does not mean the absence of fear.
Sometimes it means you are looking harder for the first sign.
Testing Can Become a Search for Something You Hope Is Not There
That is a strange psychological place to live.
You want the test.
You need the test.
You are grateful that the technology exists.
And you are terrified of what it might find.
You are essentially asking:
“Please tell me nothing is there.”
while also thinking:
“But if something is there, please find it while we can still do something about it.”
Both thoughts can exist at the same time.
Good Results Are Wonderful
I never want to lose sight of that.
A clear scan is good news.
A reassuring blood test is good news.
A negative tumor-informed blood test is good news.
Stable imaging is good news.
No evidence of disease is good news.
I want those results.
I celebrate them.
But good results do not erase the experience of getting there.
They simply mean that this particular test ended well.
Eventually, there will be another one.
Every Good Result Creates Another Future Test
That can be difficult to explain to people who have never lived through cancer surveillance.
You receive good news.
You breathe again.
You start moving forward.
Then another appointment appears on the calendar.
Another blood draw.
Another scan.
Another test.
Another report.
Another wait.
The cycle starts again.
It can feel as though you are repeatedly being asked to prove that you are still okay.
Testing Can Change How You See Your Body
When you have been through recurrence, you may become more aware of every physical sensation.
A backache.
A headache.
Fatigue.
A lump.
A cough.
A stomach problem.
A strange pain.
Sometimes it is nothing.
Sometimes it is something completely unrelated to cancer.
But cancer has taught you that something can be wrong without being immediately obvious.
Testing becomes one of the ways you try to separate normal life from something that requires attention.
That uncertainty can be exhausting.
Testing Does Not Always Give a Clear Answer
Sometimes the answer is straightforward.
Sometimes it isn't.
An imaging finding can be indeterminate.
A blood test can change without immediately identifying why.
A biopsy can be inconclusive.
A scan can show something that requires another scan.
A doctor may say:
“We need more information.”
Those words can be medically reasonable.
They can also be emotionally brutal.
Because more information means another appointment.
Another procedure.
Another wait.
More Testing Does Not Always Mean More Peace
It seems logical that more information should reduce anxiety.
Sometimes it does.
Sometimes more testing simply creates more things to worry about.
One test leads to another.
Then another.
You are trying to reach certainty.
Instead, you discover another question.
Cancer medicine often requires living with uncertainty because doctors must make decisions based on incomplete information.
Patients have to live with that uncertainty emotionally.
I Have Learned That Testing Has a Cost Beyond Money
There is the financial cost.
There may be deductibles, copayments, transportation expenses, parking, meals, missed work, and other costs.
But there is also a physical cost.
There is an emotional cost.
There is a time cost.
There is a mental cost.
Testing takes energy.
And when you are already sick, energy is not unlimited.
Testing Can Affect Your Workday
A test can mean:
“I need to leave at 10.”
But it may actually mean:
“I need to stop working at 9, drive an hour, find parking, check in, wait, have the procedure, recover, drive home, and then try to work later.”
That is not a one-hour interruption.
It is an entire disruption.
And if you are already working through treatment, those hours have to come from somewhere.
The Emotional Recovery Can Last Longer Than the Appointment
Sometimes the test is over and you are technically finished.
But mentally, you are not.
You are waiting for the report.
Then you are waiting for the doctor.
Then you are interpreting what the doctor said.
Then you are deciding what happens next.
The appointment may be finished at noon.
The stress may continue for days.
I Have Had to Become an Advocate for My Own Testing
I did not choose to become an expert in scheduling.
I did not choose to learn about insurance appeals.
I did not choose to learn how peer reviews work.
I did not choose to compare imaging.
But cancer pushed me into those roles.
I learned that sometimes being a patient means asking questions repeatedly.
It means saying:
“Why are we waiting?”
It means asking:
“Is there another way to get this test done sooner?”
It means asking:
“Can you appeal this decision?”
It means asking:
“What happens if we wait?”
Advocacy is important.
It is also exhausting.
There Is a Difference Between Advocacy and Having to Fight
I am grateful for doctors who advocate for their patients.
I am grateful for people who make phone calls and submit appeals.
But patients should not have to become professional negotiators simply because they have a rare cancer.
There is a difference between being involved in your healthcare and having to fight every step of the way.
One feels empowering.
The other can feel defeating.
I Still Had to Live While All of This Was Happening
This may be the hardest part to explain.
Cancer testing did not stop my life.
I still had to work.
I still had to deal with family.
I still had to make meals.
I still had bills.
I still had household responsibilities.
I still had relationships that were complicated.
I still had grandchildren I loved.
And I still had the emotional pain of having two children stop speaking to me.
There was no waiting room where the rest of life paused until my test results arrived.
Life kept happening.
Sometimes the Medical Stress Was Not Even the Biggest Stress
That may sound strange.
But it is true.
Sometimes I could be more upset about a family situation than an upcoming test.
Sometimes I could be thinking about my grandchildren while sitting in an infusion center.
Sometimes I could be worrying about work while waiting for a medical result.
Sometimes I could be crying about something completely unrelated to cancer.
Human beings do not compartmentalize perfectly.
We carry everything at once.
Cancer Does Not Give You a Quiet Environment in Which to Be Sick
That is one of the hardest realities.
You can be scared about cancer while arguing with an insurance company.
You can be waiting for a PET scan while worrying about money.
You can be preparing for bloodwork while trying to meet a work deadline.
You can be waiting for a biopsy while dealing with family conflict.
You can receive good news and still be devastated by something happening at home.
There is no clean separation.
I Have Learned to Prepare for the Emotional Part Too
I cannot control every test result.
I cannot control every insurance decision.
I cannot control how quickly an appointment becomes available.
But I can prepare for some of what comes with testing.
I can write down questions.
I can keep copies of reports.
I can track dates.
I can ask what preparation is required.
I can find out when results are expected.
I can ask who will explain them.
I can bring someone with me when I need support.
I can tell my medical team when the stress is becoming too much.
I Try Not to Live Inside the Test Result Before It Exists
This is difficult.
My mind wants to jump ahead.
What if it is back?
What if it has spread?
What if the test misses it?
What if the insurance company refuses it?
What if the doctor says we need another test?
What if the next test is worse?
Those questions are understandable.
They are also impossible to answer before the information exists.
I am learning to separate:
What I know.
What I fear.
What I need to ask.
What comes next.
That distinction does not eliminate stress.
It keeps fear from becoming the only source of information.
What I Wish People Understood About Cancer Testing
I wish people understood that testing is not simply:
“Go get a scan.”
It can mean days of preparation.
It can mean changing food or medications.
It can mean arranging transportation.
It can mean missing work.
It can mean fighting insurance.
It can mean peer reviews and appeals.
It can mean needles and procedures.
It can mean waiting.
It can mean reading medical language you never wanted to learn.
It can mean wondering whether your future is about to change.
And then, after all of that, you may have to do it again.
What I Wish Someone Had Told Me
I wish someone had told me that the cumulative stress of cancer testing can become exhausting.
I wish someone had explained that surveillance can feel different when you are trying to detect recurrence as early as possible.
I wish someone had warned me that insurance disputes could become part of the emotional burden of cancer.
I wish I had understood how much time testing could take away from work and family.
I wish someone had told me that a test can be medically routine while being emotionally enormous to the person taking it.
I wish someone had reminded me that I was allowed to say:
“I am tired of being tested.”
Being tired of testing does not mean you do not want to live.
It means you are tired.
Questions I Ask About Testing
When a new test is ordered, I try to understand:
Why do I need this test?
What are we looking for?
How will the result change my treatment or surveillance?
Is there another test that provides similar information?
What preparation is required?
Do I need to change medications?
Do I need to fast or change my diet?
How long will the appointment take?
Will I need transportation?
When should I expect results?
Who will explain the results?
What happens if the result is unclear?
What happens if insurance denies it?
Can the decision be appealed?
How urgent is the test?
Those questions do not make the uncertainty disappear.
They help me understand what I am walking into.
When Testing Becomes Too Much
There may come a point when the stress surrounding testing begins affecting sleep, eating, work, relationships, or your ability to participate in necessary medical care.
That is worth telling your healthcare team.
Cancer-related distress and anxiety are real parts of cancer care. Support may include counseling, support groups, behavioral strategies, mindfulness approaches, or medication when appropriate.
Asking for help does not mean the cancer has defeated you.
It means the emotional burden has become heavy enough to deserve treatment too.
I Still Want the Tests
That may sound contradictory.
I am tired of testing.
I am tired of needles.
I am tired of appointments.
I am tired of preparation.
I am tired of insurance arguments.
I am tired of waiting.
I am tired of reading reports.
And I still want the tests.
Because information matters.
Early information matters.
Knowing what is happening gives my doctors more opportunities to make decisions.
Testing is stressful partly because the information matters so much.
Testing Is Part of How I Protect My Future
I cannot guarantee that testing will find cancer early.
No test is perfect.
I cannot guarantee that insurance will approve everything.
I cannot guarantee that every abnormal result will have an easy explanation.
But I can continue surveillance.
I can ask questions.
I can advocate.
I can seek second opinions when appropriate.
I can work with doctors who understand my cancer.
And I can keep moving forward while the testing happens.
Hope for Today
I have learned that cancer testing is its own kind of exhaustion.
It is the physical exhaustion of being poked and prodded.
It is the mental exhaustion of remembering instructions.
It is the emotional exhaustion of waiting.
It is the financial stress of deductibles and uncovered services.
It is the frustration of insurance denials.
It is the exhaustion of peer reviews and appeals.
It is the disruption of work.
It is the disruption of family life.
It is the fear of what the next result might say.
And somehow, life continues around all of it.
People still need you.
Work still needs you.
Bills still arrive.
Family problems still happen.
Relationships can still hurt.
You can still have a broken heart while waiting for a PET scan.
You can still laugh with your grandchildren while worrying about your next blood test.
You can still have an ordinary argument on the same day you receive an extraordinary medical result.
Cancer testing does not happen in a separate world.
It happens inside your life.
I am tired of being tested.
But I am also grateful that these tests exist.
I want the information.
I want the opportunity to find something early.
I want my doctors to have the best information available when they make decisions.
So I will keep going.
I will ask questions.
I will appeal when I believe something important has been denied.
I will keep my records.
I will show up.
And when I am exhausted, I will try to remember that being tired of cancer testing does not mean I am giving up.
It means I have been carrying a lot.
Frequently Asked Questions
Why is cancer testing so stressful?
Cancer testing can involve physical discomfort, preparation, travel, missed work, financial concerns, insurance problems, and waiting for information that may change treatment or surveillance.
Is cancer testing stressful even when there is no known tumor?
Yes. Surveillance can be particularly stressful when the goal is to detect recurrence or disease activity as early as possible.
Why might someone with uterine leiomyosarcoma want frequent testing?
Uterine leiomyosarcoma (uLMS) is a rare and aggressive cancer. Surveillance decisions depend on the individual patient's history, treatment, symptoms, and medical team's recommendations. Some patients may be especially concerned about detecting recurrence early enough to discuss treatment options.
Why can insurance make cancer testing more stressful?
Insurance companies may require prior authorization, medical documentation, peer review, or appeals before approving certain tests. Those processes can delay testing and add emotional and administrative stress.
What is Signatera?
Signatera is a personalized circulating tumor DNA test designed to detect molecular evidence associated with a patient's known cancer. It is one piece of information and does not independently identify the location of cancer.
Does one cancer test provide the whole answer?
Not necessarily. Doctors may consider imaging, laboratory testing, pathology, symptoms, physical examinations, medical history, and other information together.
Why can repeated bloodwork become exhausting?
Repeated bloodwork involves appointments, needles, preparation, waiting for results, and sometimes changes to food, medications, or daily schedules.
Can cancer testing interfere with work?
Yes. Testing may require travel, preparation, appointments, recovery, and follow-up that can interfere with work schedules and responsibilities.
What can patients do when insurance denies a medically recommended test?
Ask the healthcare team about the reason for the denial, prior authorization requirements, peer review, appeals, alternative testing, and whether additional medical documentation may help. Insurance rules vary by plan and situation.
When should cancer-related testing stress be discussed with a medical professional?
Tell your healthcare team if testing-related anxiety or distress interferes with sleep, eating, work, relationships, daily functioning, or your ability to participate in recommended medical care.
Support on Your Journey
Cancer testing can become exhausting when every appointment carries the possibility of changing your future.
Surviving Life Lessons Community Groups are being formed so patients, survivors, and caregivers can talk about testing, insurance battles, waiting, surveillance, family stress, work, and the emotional exhaustion that comes with repeated medical appointments.
You may be tired of being tested.
You may be tired of waiting.
You may be tired of fighting.
That does not mean you are giving up.
Sometimes it simply means you have been carrying cancer for a very long time.
Find Your Community
No one should have to face life's challenges alone. At Surviving Life Lessons, we believe in life survivors helping life strugglers. Explore our growing Community Groups to connect with others who understand your journey, share encouragement, and find hope through meaningful conversations. You'll also have the opportunity to introduce yourself and share your own story of overcoming. Your story matters. It may be the encouragement someone else needs to keep moving forward, reminding them that they are not alone and that hope is always possible.
Your Story Matters
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Drop a comment, Say Hello, and join the conversation.
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References
National Cancer Institute — Tests and Procedures Used to Diagnose Cancer
https://www.cancer.gov/about-cancer/diagnosis-staging/diagnosis
National Cancer Institute — Adjustment to Cancer: Anxiety and Distress https://www.cancer.gov/about-cancer/coping/feelings/anxiety-distress-pdq
National Cancer Institute — Follow-Up Medical Care After Cancer Treatment https://www.cancer.gov/about-cancer/coping/survivorship/follow-up-care
National Cancer Institute — Communication in Cancer Carehttps://www.cancer.gov/about-cancer/coping/adjusting-to-cancer/communication-pdq
National Cancer Institute — Uterine Sarcoma Treatment https://www.cancer.gov/types/uterine/patient/uterine-sarcoma-treatment-pdq
National Cancer Institute — About Rare Cancers https://www.cancer.gov/pediatric-adult-rare-tumor/rare-tumors/about-rare-cancers
National Cancer Institute — Cancer Survivorship https://www.cancer.gov/about-cancer/coping/survivorship
FDA — Information for Laboratories Implementing IVD Tests Under EUA https://www.fda.gov/emergency-preparedness-and-response/mcm-legal-regulatory-and-policy-framework/information-laboratories-implementing-ivd-tests-under-eua
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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