Fighting for Cancer Care: The Battle After Diagnosis
- Deborah Ann Martin
- 3 days ago
- 27 min read
Fighting for Cancer Care: Insurance Denials, Appeals, Specialists, Scans, and the Treatment I Need
Fighting for cancer care became part of my treatment journey.
I wish I could have gone to the hospital, received the treatments I needed, completed them, and returned home to recover. I wish the doctors could have made the decisions, the insurance company could have paid its part, and I could have used my remaining strength to heal.
That has not been my experience.
Cancer itself is a fight. Surgery, chemotherapy, medications, side effects, scans, fear, and recovery require strength. But a large part of my fight has not been directly against the cancer cells.
I have fought to receive the healthcare that gives me a chance to stay alive.
I have fought insurance companies.
I have fought denied claims.
I have fought for PET scans.
I have fought to see specialists.
I have fought for genetic and tumor testing.
I have fought for maintenance treatment.
I have fought for care related to the long-term effects of cancer treatment.
I have fought the Department of Veterans Affairs for benefits and services.
I have filled out forms, made telephone calls, filed appeals, contacted advocates, gathered evidence, followed up on referrals, and asked my doctors to explain again why a treatment or test was medically necessary.
That is what “fighting cancer” has meant in my life.
Cancer Patients Should Be Able to Focus on Healing
When someone is diagnosed with cancer, people often tell them to fight.
“Keep fighting.”
“Do not give up.”
“You are a warrior.”
Those words usually refer to enduring the disease and its treatment.
What many people do not see is how much energy patients spend fighting the healthcare system.
A patient may be weak from surgery or chemotherapy and still have to call an insurance company.
A patient may be dealing with brain fog and still have to understand a denial letter.
A patient may be frightened about a possible recurrence and still have to prove why a scan is necessary.
A patient may be working full-time, attending medical appointments, caring for family, managing side effects, and completing pages of paperwork just to receive a service that a doctor has already recommended.
I wish the fight were only about healing.
It is not.
Rare Cancer Makes the Fight More Complicated
My cancer is uterine leiomyosarcoma, or uLMS.
It is a rare cancer.
When a disease is rare, the patient may face additional barriers because there is less research, fewer specialists, and less agreement about treatment and surveillance. Insurance policies may be written around common cancers and common treatment paths rather than the needs of an individual with a rare disease.
A rare-cancer patient may need:
A specialist outside the local area
Tumor biomarker or molecular testing
A treatment used less often
An off-label medication
More individualized surveillance
A clinical trial
A second or third medical opinion
Evidence from smaller studies
A doctor willing to build a personalized plan
That does not mean every requested test or treatment is automatically appropriate.
It means the decision may require more explanation, documentation, and review.
For the patient, that often means another fight.
I Had to Fight for More Than Treatment
My battles have included care at nearly every stage of the cancer journey.
I fought to learn what was happening inside my body.
I fought for testing that could reveal more about the biology of my tumor.
I fought for a maintenance medication after reaching NED because I did not want to wait helplessly for visible cancer to return.
I fought for surveillance intended to identify a possible recurrence as early as reasonably possible.
I fought for treatment of the pain and other problems that followed cancer therapy.
I fought to see the doctors who understood particular parts of my care.
The medical need might have changed from one year to the next.
The fighting did not.
My Doctor Has Had to Fight With Me
I have been fortunate to have a cancer doctor willing to advocate for me.
She has had to explain why I needed certain tests and treatments.
She has had to provide medical records.
She has had to submit additional information.
She has had to respond to insurance requirements.
She has had to participate in appeals and other reviews.
A doctor’s order does not always mean an insurance company will approve the care.
Sometimes the insurer requires prior authorization before a scan, medication, procedure, or specialist service will be covered. Prior authorization means the health plan must approve the service according to its rules before it is provided or paid for.
The doctor may know what the patient needs.
The insurance company may still say no.
I Have Been Denied PET Scans
My doctors use imaging as part of monitoring my rare cancer.
I have had requests for PET scans denied.
The exact language of the denial should come from my records, and I do not want to claim wording I cannot confirm. What I understood from the denials was that the insurer did not consider the PET scan necessary under its policy and believed a less expensive CT scan should be used instead.
That may look reasonable to someone reviewing costs on paper.
It felt very different to me.
I had already lived through an aggressive cancer.
I was NED, meaning there was no evidence of disease on my scans. My medical team was not trying to wait until I had large masses, severe symptoms, or widespread cancer.
We were trying to monitor me carefully.
Our goal was to find a suspicious change as early as possible, evaluate it, and decide what needed to happen before it had an opportunity to grow, spread, or create more tumors.
I did not want to wait for cancer to become obvious.
NED Does Not Mean Monitoring Is Unnecessary
When someone is NED, people may think the cancer journey is finished.
NED does not mean there is a guarantee that cancer will never return.
It means the available testing does not currently show evidence of disease.
Continued surveillance may be part of a patient’s follow-up plan. The exact imaging method and schedule should be individualized according to the cancer, prior treatment, symptoms, medical history, current evidence, and the treating team’s judgment.
A scan is not valuable simply because it is more expensive or more advanced.
Different imaging methods answer different questions.
My point is not that every uterine leiomyosarcoma survivor should automatically receive a PET scan.
My point is that the patient’s doctor should be able to explain why a particular test is medically appropriate, and that explanation deserves a fair review.
I Did Not Want Cost Alone to Decide My Future
Insurance companies must make coverage decisions.
They use policies, evidence, contracts, and medical-necessity standards.
I understand that healthcare resources are not unlimited.
But when a denial affects a person with an aggressive rare cancer, it does not feel like an ordinary business decision.
It feels personal.
A person on the other end of the decision may be trying to determine whether cancer has returned.
A delay may mean more days or weeks of fear.
An inappropriate substitute may fail to answer the medical question the oncologist is asking.
The patient should not be treated as though the least expensive option is automatically the best option.
An Insurance Denial Is Not Always the Final Answer
I learned that a denial can sometimes be challenged.
For many health plans, patients have rights to internal appeals. Depending on the plan and type of decision, they may also be able to request an external review by an independent party. Federal guidance explains that external review may be available when an insurer continues to deny payment or coverage after an internal appeal.
An appeal may include:
The denial letter
The insurance policy language
Medical records
The doctor’s order
A letter of medical necessity
Research or treatment guidelines
The patient’s treatment history
Previous imaging results
Information about the rare cancer
An explanation of why an alternative is not appropriate
A doctor may also request a peer-to-peer review, in which the treating clinician discusses the request with a medical professional representing the insurer.
The exact process depends on the plan.
The emotional burden often lands on the patient.
I Had to Learn the Language of Denials
Insurance language can be confusing.
A request may be denied because the service is described as:
Not medically necessary
Experimental or investigational
Out of network
Not covered
Lacking prior authorization
Not supported by the submitted records
Available through a less costly alternative
Outside the plan’s clinical criteria
Those phrases sound final.
Sometimes they mean the request was submitted without enough documentation.
Sometimes the policy does not fit the patient’s unusual situation.
Sometimes the doctor needs to provide research or explain why the standard alternative is not appropriate.
Sometimes the patient truly has reached the end of the available appeal process.
The patient may not know which situation applies until someone investigates.
I Fought for Genetic and Tumor Testing
Early in my journey, another survivor and his wife helped me understand that there were different types of testing I should ask about.
Germline genetic testing looks for inherited genetic changes that may affect the patient or family.
Tumor biomarker or molecular testing examines characteristics of the cancer tissue that might provide information about the tumor or possible treatments.
These tests are not identical.
Neither guarantees that a useful treatment will be found.
For a rare-cancer patient, however, each piece of information can matter.
I had to ask for the testing.
I had to continue asking questions.
I had to push beyond the idea that the standard amount of information was automatically enough.
My germline testing did not identify an inherited explanation. My tumor testing found that my cancer was estrogen receptor and progesterone receptor positive and had an ALK-related finding.
Those results became important pieces of my treatment journey.
I Fought for Maintenance Treatment
After my scans showed NED, I did not want the plan to be simply:
“Wait until the cancer comes back.”
I understood that no treatment could promise the cancer would never return.
I still wanted my doctors to consider whether there was something reasonable we could do to reduce risk or target what we knew about my tumor.
Because my tumor was hormone-receptor positive, I asked about maintenance treatment.
I began an aromatase inhibitor and later changed to exemestane because of severe muscle and joint pain with the first medication.
That treatment created its own long-term side effects.
But receiving maintenance treatment required me to ask questions and advocate for a plan rather than passively accept that nothing could be done until visible cancer returned.
Rare Cancer Treatment May Not Fit a Standard Insurance Box
Many cancer medications are approved for specific diseases or circumstances.
In rare cancers, a doctor may sometimes consider a medication based on tumor biology, related evidence, smaller studies, or experience with similar cancers.
That may involve off-label treatment.
Off-label use means a drug approved by the Food and Drug Administration is used for a cancer, dose, schedule, or circumstance that is not included in the FDA-approved labeling.
Off-label use is legal and common in cancer care, but insurance coverage can be difficult. The National Cancer Institute advises patients to check coverage and notes that when an off-label cancer drug is denied, supporting medical literature from the doctor may help with an appeal.
The fact that a treatment is off label does not automatically mean it is medically inappropriate.
It also does not mean it will work.
It means the decision requires careful medical reasoning and may require more insurance advocacy.
Clinical Trials Can Create Another Layer of Questions
For some rare-cancer patients, a clinical trial may provide access to a promising treatment or research opportunity.
That does not mean participation is easy.
Patients may have to determine:
Whether they meet the eligibility requirements
Whether the trial is accepting participants
Whether travel is required
Which costs are paid by the study
Which routine care costs are billed to insurance
Whether the health plan will cover those routine costs
Whether lodging or transportation assistance exists
Whether the patient can manage the time away from work and family
The National Cancer Institute advises patients whose insurance claims related to trial care are denied to contact the plan, review appeal rights, and ask the treating doctor to assist, including by communicating with the plan’s medical director when appropriate.
Even getting access to research can become another administrative fight.
I Also Fought the VA
I am a veteran.
I initially received denials when I sought VA benefits and services.
The process did not feel like one application followed by one clear decision.
It became a cycle.
It was research.
I had to complete forms.
I had to submit information.
I had to explain my medical problems.
I had to follow up.
I had to determine who had authority to reconsider a decision.
I had to keep going when I was already tired.
The VA has formal paths for reviewing benefit decisions and medical-treatment decisions. Depending on the issue, veterans may have options such as a Supplemental Claim, Higher-Level Review, Board appeal, or Clinical Appeal. A Clinical Appeal applies to certain VA medical-treatment decisions and requests review by other medical professionals.
Knowing a process exists does not make the process emotionally easy.
I Was Denied Supportive Care Because of My Weight
One smaller example involved chiropractic services and massage therapy.
I was trying to receive help for migraines, pain, and treatment-related problems, including side effects I associate with exemestane.
I was told that I could not receive the requested services because of my weight.
That is how the decision was stated in a denial of service letter I received.
I was not willing to accept that answer without challenging it.
I contacted advocacy resources.
I was told to contact someone in Washington, D.C.
I completed additional paperwork.
I was then directed to contact my local congressional office.
I contacted Congressman Bobby Scott’s office in Virginia.
His office helped address the issue, and I was ultimately able to receive massage therapy to help manage my symptoms.
Congressional offices cannot guarantee that an agency will approve a request, but they can assist constituents in communicating with federal agencies and obtaining information about delayed or disputed matters. Congressman Scott’s official office describes helping constituents navigate federal government services as an important part of its work.
Chiropractic Care Is Part of VA’s Medical Benefits Package
VA states that chiropractic services are part of the standard medical benefits package available to eligible veterans. As with other specialties, access generally requires a referral from a VA primary-care or specialty provider. VA may provide the care directly at a facility or through authorized community care, depending on availability and eligibility.
That does not mean every requested service, treatment frequency, provider, or diagnosis must automatically be approved.
It does mean veterans should receive a clear medical and administrative explanation when care is denied.
A veteran should not be left with only a dismissive statement that does not address the actual symptoms or clinical need.
Supportive Care Is Still Healthcare
Massage therapy, chiropractic care, physical therapy, pain management, rehabilitation, mental health services, and other forms of supportive care do not treat cancer cells directly.
They may still be important parts of a person’s overall care when medically appropriate.
Cancer survivors may live with:
Joint pain
Muscle pain
Headaches
Neuropathy
Limited mobility
Fatigue
Bone-health concerns
Sleep problems
Anxiety
Treatment-related weakness
Other chronic symptoms
The goal may be to reduce pain, improve movement, preserve function, support sleep, or make daily life more manageable.
Living longer matters.
Being able to function during that life matters too.
One Person’s Appeal Can Expose a Larger Problem
My brother once told me:
“Deb, I am so glad you are the one who got cancer.”
That may sound strange or even harsh without the rest of the conversation.
He did not mean he wanted me to be sick.
He meant that he could not imagine having to fight every denial, complete every appeal, and challenge every barrier the way I had.
He told me that if he had been required to fight each time he needed care, he might have given up.
Then he pointed out that my fighting could also help other people.
I cannot prove that every appeal I won changed an entire policy or automatically opened care for every patient or veteran who came after me.
But when a denial is challenged, reviewed, corrected, or brought to the attention of someone with authority, it can expose a problem.
It can create a record.
It can force someone to explain a rule.
It can show that a policy is being applied unfairly or without enough attention to individual circumstances.
It can make the path clearer for the next person.
That possibility helps me continue.
Not Everyone Has the Energy or Skills to Fight
I have research skills.
I have management experience.
I understand projects, processes, documentation, and escalation.
I know how to organize information.
I know how to ask questions.
I know how to move an issue to the next level when the first person cannot resolve it.
Cancer still made the process exhausting.
That makes me think about patients who do not have those skills.
What happens to someone who:
Does not understand the denial letter
Does not have internet access
Cannot stay on hold for an hour
Does not speak English fluently
Has severe brain fog
Is too sick to make calls
Does not have family support
Is afraid to challenge authority
Does not know an appeal exists
Cannot gather medical records
Gives up after the first no
Access to healthcare should not depend entirely on a patient’s ability to become an expert in insurance, law, government benefits, and medical administration.
“Just Appeal It” Is Not a Simple Answer
People sometimes say:
“Why didn’t you just appeal?”
An appeal is work.
It may require:
Reading the denial
Understanding the reason
Calling the insurance company
Calling the doctor
Gathering records
Requesting a medical-necessity letter
Locating research
Completing forms
Meeting deadlines
Sending documents
Confirming receipt
Waiting for a response
Filing another review
Correcting mistakes
Starting again
The patient may be doing all of this while recovering from surgery, receiving chemotherapy, working, or managing chronic pain.
An appeal may be worth doing.
It is not a small task.
The Words “Medical Necessity” Can Decide Access
Insurance companies often base decisions on whether a service meets the plan’s definition of medical necessity.
The patient and treating doctor may believe something is necessary.
The insurer may apply different criteria.
A strong appeal may need to explain:
The diagnosis
Why the service is needed
What question the test will answer
Why a less expensive alternative is not sufficient
What treatments have already been tried
What happened with those treatments
What research supports the request
What harm may result from delay
How the request fits the patient’s unusual circumstances
For rare cancer, the appeal may also need to explain why a policy built around common diseases does not fit the patient.
Keep the Denial Letter
A denial letter should not be thrown away.
It usually contains important information, including:
The exact reason for denial
The policy or clinical criteria used
The deadline for appeal
The address or portal for submission
The right to internal review
Possible external-review rights
Instructions for expedited review
Contact information
The Centers for Medicare & Medicaid Services explains that many consumers have the right to internal appeal and, when eligible, external review by an independent third party. If an external reviewer overturns a denial, the plan must provide the covered payment or service addressed in the decision.
Save every page.
Ask for the Rule Behind the Decision
Do not settle for:
“We do not cover that.”
Ask:
Why was it denied?
What policy applies?
What clinical criteria were used?
Which part of the request failed to meet the criteria?
Was the complete medical record reviewed?
Can the decision be appealed?
Is an expedited appeal available?
Can my doctor request a peer-to-peer review?
Is external review available?
What is the deadline?
Where must the documents be sent?
How do I confirm they were received?
Specific questions are harder to dismiss with a general answer.
Request a Letter of Medical Necessity
A letter of medical necessity from the treating doctor may explain why the test, treatment, medication, specialist, or service is appropriate.
A useful letter may include:
The diagnosis and stage
Relevant medical history
Prior treatments
Current symptoms
Test results
The requested service
The expected medical benefit
The risks of not receiving it
Why covered alternatives are not sufficient
Supporting research or guidelines
The patient can ask whether the doctor’s office has a prior-authorization or appeals team.
My doctor’s willingness to keep fighting has mattered tremendously.
Appeal Quickly When Time Matters
Some medical decisions cannot wait through a long standard appeal.
Policies may allow an expedited or urgent appeal when delay could seriously threaten a patient’s health, ability to regain function, or treatment timeline.
Ask the insurer:
“Does my situation qualify for an expedited appeal?”
The doctor may need to support the urgency.
Do not assume the request will automatically be processed quickly because the word cancer appears in the record.
Ask directly.
Keep a Fighting-Cancer Binder
Cancer patients often keep a medical binder.
I believe they may also need an advocacy section.
Include:
Insurance cards
Plan documents
Denial letters
Appeal instructions
Prior-authorization numbers
Medical records
Imaging reports
Pathology reports
Treatment plans
Medication lists
Letters of medical necessity
Research supporting unusual treatment
VA decisions
Benefit applications
Congressional correspondence
Telephone logs
Deadlines
Names and reference numbers
A digital folder may work just as well.
The purpose is to avoid starting from zero every time someone asks for the same information.
Document Every Telephone Call
After an important call, write down:
The date
The time
The organization
The telephone number
The representative’s name
The reference number
What you asked
What the person said
What documents are needed
What will happen next
The deadline
When you should call again
Ask the person to repeat important information.
Request written confirmation when possible.
A patient with brain fog should not have to trust memory alone.
Use the Patient Portal
The medical portal can help preserve:
Doctor messages
Orders
Referrals
Test results
Appointment details
Medication history
Requests for documentation
When a conversation occurs by telephone, follow up through the portal when appropriate:
“This message confirms our telephone conversation today. My understanding is that…”
Written communication creates a record.
Find the Right Advocate
Different problems may require different advocates.
Possible resources include:
The doctor’s prior-authorization team
An oncology social worker
A financial navigator
A hospital patient advocate
An insurance case manager
A state insurance department
An employer benefits representative
A union representative
A VA patient advocate
A veterans service organization
An accredited VA representative
A congressional constituent-services office
A legal-aid organization
A rare-cancer advocacy group
One person may not be able to solve every problem.
Ask who has authority over the specific decision.
VA Medical Appeals and Benefit Appeals Are Different
A denial of a VA disability benefit is not the same as a denial of a medical treatment or community-care request.
Different processes may apply. I asked a lot of questions of a lot of people to figure out the process. No one person said what to do. I was transferred a lot to a different person until I got the right people.
Never stop asking questions about the processes. You have to always follow the process and the required paperwork.
VA identifies several review paths for benefits decisions, including Supplemental Claims, Higher-Level Reviews, and appeals to the Board of Veterans’ Appeals. For certain medical-treatment decisions, a veteran can request a Clinical Appeal through the medical facility, often beginning with the patient advocate.
Veterans should ask:
“Is this a benefits decision, a healthcare eligibility decision, a referral decision, or a clinical treatment decision?”
That answer helps determine the correct appeal route.
VA Community Care Usually Requires Authorization
When VA care is provided by a community provider, authorization and referral requirements matter.
VA explains that nonurgent community care generally must be authorized in advance. The referral identifies the approved provider and service, and disputes may need to be addressed through the VA facility or community-care process.
A veteran should confirm:
The referral was approved
The provider is authorized
The dates are correct
The number of visits is correct
The service is included
The authorization has not expired
Follow-up care requires a new referral
A missed administrative step can become a denied claim or interrupted treatment.
A Congressional Office Is Not the First Step for Every Problem
Contacting a congressional office may help when a federal agency issue remains unresolved after ordinary channels have been used.
The congressional office cannot normally force an agency to approve a benefit or medical service.
It may be able to:
Request a status update
Ask the agency to review the matter
Clarify what information is missing
Help resolve communication problems
Identify the correct process
Obtain an explanation
Ensure the constituent receives a response
In my case, Congressman Bobby Scott’s office helped me resolve the issue I was facing.
That assistance mattered.
It reminded me that escalation is not disrespectful when reasonable efforts have failed.
Patients Should Not Have to Prove They Deserve to Live
Every denial felt larger because of what was at stake.
I was not appealing for a luxury.
I was trying to receive the care my doctors and I believed was important.
I was trying to monitor an aggressive rare cancer.
I was trying to manage treatment side effects.
I was trying to preserve my ability to work, think, move, and live.
A healthcare system must have rules.
But patients should be treated as human beings, not only claim numbers, diagnosis codes, expenses, or statistical outcomes.
A rare diagnosis does not make a person disposable.
A poor statistical outlook does not mean surveillance or treatment has no value.
I am more than a prediction.
Statistics Cannot Decide Which Side I Will Be On
Early in my journey, my cancer doctor would not tell me whether I personally would live or die.
She explained that she did not know which side of the statistics I would be on.
That stayed with me.
A statistic describes a group.
It does not know my exact future.
Insurance policies may be based on research involving groups.
That is necessary.
But individual care also requires medical judgment.
My doctors needed room to consider my tumor, response to treatment, health, risks, goals, and history.
I did not want a general expectation about rare cancer to become a reason to stop looking for ways to help me.
Fighting for Care Is Exhausting
The fight does not happen only once.
A scan may be approved this year and denied the next.
A medication may require renewed authorization.
A specialist referral may expire.
A benefit may need another review.
A new insurance plan may have different rules.
A new side effect may require another doctor.
A new doctor may need the entire history again.
You celebrate winning one appeal.
Then another letter arrives.
That constant resistance wears a person down.
Administrative Work Can Become a Second Illness
The paperwork follows you.
Forms sit on the table.
Telephone calls interrupt work.
Deadlines stay in your mind.
You worry that one missed document could affect treatment.
You check the portal.
You leave messages.
You wait.
You call again.
It is difficult to rest when access to care depends on what you do next.
Administrative stress can consume energy that the body needs for recovery.
People Say, “You Are Such a Fighter”
I understand why people say it.
They see that I survived Stage IV cancer.
They see that I continued working.
They see the scans, medications, appointments, appeals, and advocacy.
They see that I keep going.
But sometimes I wish I did not have to be so strong.
I wish care did not depend on how persistent I could be.
I wish every patient had an advocate.
I wish someone else could carry the paperwork while the patient carried the treatment.
There Is No Shame in Asking Someone Else to Fight Beside You
A patient does not have to complete every appeal alone.
A trusted helper may:
Organize records
Sit on telephone calls
Take notes
Track deadlines
Draft questions
Request documents
Contact advocates
Attend appointments
Research official sources
Help the patient rest
The patient should approve what is shared.
Formal permission may be needed before an insurance company, medical office, or agency will speak with another person.
Complete those authorization forms before a crisis when possible.
Caregivers Should Not Take Over Without Permission
Help is valuable.
The patient should still remain at the center of decisions when able.
A caregiver should ask:
“Would you like me to make this call?”
“What outcome are you requesting?”
“May I take notes?”
“What information may I share?”
Advocacy should strengthen the patient’s voice, not replace it.
Research Before You Appeal
A strong appeal is more than saying:
“This is unfair.”
Explain why the decision is wrong under the plan, evidence, or patient’s circumstances.
Look for:
The plan’s coverage policy
Official treatment guidance
Peer-reviewed research
FDA information
National Cancer Institute information
Medical-society guidance
Rare-cancer expert recommendations
The doctor’s reasoning
Previous successful treatment
Evidence that the proposed alternative is insufficient
Technical evidence should come from reliable sources.
A social media story may help you feel less alone.
It may not persuade a medical reviewer.
Do Not Invent Medical Certainty
Advocacy must remain truthful.
Do not claim a treatment is guaranteed to work.
Do not say a denied scan would definitely find cancer.
Do not exaggerate symptoms.
Do not hide medical information that affects safety.
A strong appeal can say:
The service is medically reasonable.
The doctor believes it is appropriate.
The patient’s rare circumstances require individual review.
The requested option may provide information another test cannot.
The potential benefit justifies reconsideration.
Delay may create specific risks.
Truth is enough.
Not Every Appeal Will Be Won
This is one of the hardest realities.
Sometimes the evidence will not support the request.
Sometimes the plan excludes the service.
Sometimes all appeal levels will uphold the denial.
Sometimes the medical team will decide the requested care is no longer appropriate.
Advocacy does not guarantee approval.
It creates a fair opportunity for the individual case to be heard.
When the final answer remains no, ask:
Is there another medically appropriate option?
Is another specialist available?
Is financial assistance possible?
Is a clinical trial available?
Can the timing be reconsidered?
Can the doctor document the issue for future review?
Is a second opinion appropriate?
Is there another insurance or VA pathway?
A closed door may not be the only door.
Warning Signs of an Unsafe Delay
Contact the medical team promptly when an authorization or referral delay affects:
A time-sensitive cancer treatment
A suspicious new symptom
A possible recurrence
Severe pain
Rapid physical decline
A medication that cannot be interrupted safely
A procedure with a medical deadline
A serious mental health concern
Breathing, neurological, or other emergency symptoms
Administrative problems should never replace emergency care.
Call emergency services or seek urgent medical evaluation when symptoms require it.
A Short Script for an Insurance Denial
“I am calling about the denial dated [date] for [service]. Please tell me the exact reason for the denial and the policy or clinical criteria used. I need the deadline and instructions for an internal appeal. Please also tell me whether my doctor may request a peer-to-peer review and whether an expedited appeal is available.”
A Script for You to Ask Your Doctor’s Office
“My insurance denied the requested service dated [date] for [service]. The denial says [reason]. Can your prior-authorization team review it? Would the doctor provide a letter of medical necessity or request a peer-to-peer review? Please let me know what records or research are being submitted.”
A Script for a VA Patient Advocate
“I am asking for help with a decision about my medical care. I received a denial of service dated [date] for [service]. Please explain whether this should be handled as a Clinical Appeal, a community-care appeal, or another process. I would like the reason, appeal instructions, and deadline in writing.”
A Script for a Congressional Office
“I am a constituent seeking help with an unresolved federal agency matter. I have already contacted [agency and offices] and completed [appeals or forms]. The issue is [brief description] dated [date] for [service]. I understand your office cannot guarantee an outcome, but I am requesting help obtaining a response and review. What is the process I should follow”
A Script for Family and Friends
“I do not need you to solve the medical decision. I need help organizing records, tracking calls, and reminding me of deadlines. If I need a letter detailing the conditions you are seeing, would you be willing to write a letter to go with my appeals.”
Specific help is more useful than:
“Let me know if you need anything.”
What Healthcare Professionals Can Do
Doctors, nurses, pharmacists, and office staff can reduce the burden by:
Explaining expected authorization barriers
Starting requests early
Providing clear documentation
Identifying covered alternatives
Assigning a staff contact
Responding to denials quickly
Helping with appeals
Referring patients to navigators
Writing in everyday language
Giving patients copies of records
Documenting why a standard policy does not fit a rare case
My doctor’s advocacy has been one of the reasons I could keep fighting.
Patients need medical professionals who do not disappear when the first denial arrives.
What Insurance Companies Can Do
Insurance companies can protect resources while still treating patients with dignity.
They can:
Provide clear denial reasons
Use understandable language
Identify the exact evidence required
Offer timely peer review
Recognize rare-disease exceptions
Avoid unnecessary repeated authorizations
Provide expedited review when medically urgent
Make appeal instructions easy to find
Assign complex-case managers
Include specialists familiar with the disease
Review the individual patient rather than only a general policy
A transparent no is still painful.
A vague no is worse.
What Government Agencies Can Do
Government healthcare and benefits systems can improve by:
Giving veterans one clear point of contact
Distinguishing medical appeals from benefit appeals
Reducing duplicate paperwork
Sharing records across authorized programs
Providing realistic timelines
Explaining decisions in everyday language
Identifying missing evidence early
Protecting patients from discriminatory assumptions
Expanding access to trained advocates
Tracking repeated denial patterns
Responding before a patient’s condition worsens
Veterans should not need congressional intervention to understand why medically recommended care was denied.
What I Wish Someone Had Told Me
I wish someone had told me that cancer treatment involved more than hospitals and medications.
I wish someone had warned me that I might spend years fighting for scans, specialists, medications, supportive care, and benefits.
I wish I had known the difference between an internal appeal, external review, peer-to-peer review, VA Clinical Appeal, Higher-Level Review, and other pathways.
I wish every cancer patient received an advocate at diagnosis.
I wish rare-cancer patients did not have to teach every new reviewer why their care might not fit a standard policy.
I wish doctors could make reasonable individual decisions without spending hours proving the same medical need repeatedly.
I wish supportive care were treated as part of survival rather than an optional extra.
Most of all, I wish someone had said:
“Save your records. Learn the appeal process. Ask for help. The first no may not be the final answer.”
Hope for Today
My brother told me he was glad I was the one who got cancer because he believed I had the strength to fight all the battles surrounding it.
I know what he meant.
He did not want me to suffer.
He saw how many times I had to challenge a decision just to receive the care my doctors and I believed I needed.
He was not sure he could have kept going through all the calls, denials, forms, referrals, appeals, and waiting.
Some days, I was not sure I could keep doing it either.
But I did.
I fought for genetic and tumor testing.
I fought for maintenance treatment.
I fought for scans.
I fought for specialists.
I fought for treatment of long-term side effects.
I fought for VA care and benefits.
I contacted advocates.
I contacted Congressman Bobby Scott’s office when the normal process failed me.
I kept records.
I appealed.
I asked again.
I did not win every battle exactly as I wanted.
But I received care I might not have received if I had accepted every first answer.
I hope those fights helped more than me.
I hope they exposed barriers.
I hope they made someone review a rule more carefully.
I hope the next patient or veteran finds a door that is already slightly more open.
People call cancer patients fighters.
Now I understand why.
We fight the disease.
We fight the fear.
We fight the side effects.
We fight to keep working.
We fight to pay the bills.
And far too often, we fight the very systems that are supposed to help us receive care.
I am tired of fighting.
I am also alive.
Until healthcare becomes easier to reach, I will keep asking questions, keeping records, appealing unfair decisions, and reminding every reviewer that I am not merely a cost or a statistic.
I am a person trying to live.
Frequently Asked Questions
Why might an insurance company deny cancer care?
Common reasons include lack of prior authorization, the service not meeting the plan’s medical-necessity criteria, use of an out-of-network provider, missing documentation, a policy exclusion, or classification of a treatment as experimental or investigational.
Can an insurance denial be appealed?
Many plans provide an internal appeal process. Depending on the plan and decision, an independent external review may also be available. The denial letter should explain the rights, steps, and deadlines.
What is a peer-to-peer review?
It is a discussion between the treating clinician and a medical reviewer representing the health plan. The doctor explains the patient’s circumstances and why the requested care is medically appropriate.
What is a letter of medical necessity?
It is a letter from a healthcare professional explaining the diagnosis, requested service, supporting medical facts, expected benefit, and why available alternatives are not sufficient.
Can insurance cover off-label cancer treatment?
Coverage varies. When coverage is denied, the treating doctor may submit medical literature and other evidence supporting the proposed use.
Does a doctor’s order guarantee insurance coverage?
No. A plan may still require prior authorization, documentation, use of an in-network provider, or satisfaction of other coverage criteria.
Can cancer patients request faster appeal review?
Some plans allow expedited appeals when delay may seriously threaten health or the ability to regain function. Ask the insurer and doctor whether the situation qualifies.
How can a veteran appeal a VA medical-treatment decision?
VA states that veterans may file a Clinical Appeal for certain treatment decisions, often by contacting the patient advocate at the VA medical facility. This process is different from appealing a disability-benefit decision.
Can a congressional office overturn a VA or insurance decision?
A congressional office generally cannot guarantee or order a particular outcome. It may help a constituent communicate with a federal agency, obtain information, clarify delays, and request appropriate review.
Are chiropractic services available through VA?
VA states that chiropractic services are included in the standard medical benefits package for eligible veterans and generally require referral from a VA primary-care or specialty provider. Individual authorization and care decisions still depend on medical and program requirements.
What should I save after a denial?
Save the denial letter, plan policy, medical records, doctor’s order, appeal instructions, relevant research, all submitted documents, delivery confirmation, telephone notes, and every response.
Who can help with a cancer insurance appeal?
Possible helpers include the doctor’s authorization team, an oncology social worker, financial navigator, patient advocate, insurer case manager, state insurance department, employer benefits office, legal-aid organization, or rare-cancer advocacy organization.
Support on Your Journey
Cancer advocacy can feel like a second full-time job.
You may be trying to stay alive while managing insurance rules, VA forms, specialist referrals, treatment authorizations, bills, employment, family needs, and chronic illness.
Surviving Life Lessons Community Groups are being formed to bring together people facing related problems. A group cannot guarantee approval of a scan, treatment, benefit, or referral, but people can share questions, organizational methods, reliable resources, and encouragement.
You should not have to fight alone.
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
We need your nice comments below! Your thoughts, experiences, and lessons learned might be exactly what someone else needs to hear today.
Drop a comment, Say Hello, and join the conversation.
Need More Personalized Support?
Everyone's journey is unique. If you're looking for personalized guidance, encouragement, or one-on-one support, explore our services to find the option that's right for you. We're here to help you take your next step with confidence and hope.
Helpful Resources for Your Journey
Explore our collection of books, journals, coloring books, and printable PDFs designed to encourage, inspire, and support you every step of the way.
References
**Centers for Medicare & Medicaid Services. “External Appeals.”**
**Centers for Medicare & Medicaid Services. “Has Your Health Insurer Denied Payment for a Medical Service?”**
**Centers for Medicare & Medicaid Services. “Appealing Health Plan Decisions.”**
**Centers for Medicare & Medicaid Services. “Action Plan: Health Insurance Plan Denied a Claim.”**
**National Cancer Institute. “Off-Label Drug Use in Cancer Treatment.”**
**National Cancer Institute. “Who Pays for Clinical Trials?”**
**National Cancer Institute. “Financial Toxicity and Cancer Treatment (PDQ®)–Patient Version.”**
**U.S. Department of Veterans Affairs. “VA’s Chiropractic Program.”**
**U.S. Department of Veterans Affairs. “Eligibility for Community Care Outside VA.”**
**U.S. Department of Veterans Affairs. “VA Decision Reviews and Appeals.”**
**U.S. Department of Veterans Affairs. “Higher-Level Reviews.”**
**U.S. Department of Veterans Affairs. “Appealing Your Health Care Decisions.”**
**Veterans Health Administration. “Community Care.”**
**Veterans Health Administration. “Provider Claims: Community Care.”**
**Office of Congressman Robert C. “Bobby” Scott. “Help With a Federal Agency.”**
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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