How Tumor Testing, Research, and Self-Advocacy Led Me to Maintenance Treatment
- Deborah Ann Martin
- 1 day ago
- 18 min read
How Tumor Testing and Self-Advocacy Helped Me Find a Treatment Path
My first PET scan after surgery and chemotherapy showed no evidence of disease (NED).
Those were the words I had been praying to hear.
The surgeons had removed the three large tumors from my abdomen and the tumor from my back. I had completed chemotherapy despite severe anemia, overwhelming fatigue, hair loss, changes in taste, two surgeries, and a frightening reaction during my first infusion.
The treatment had done what we hoped it would do.
There was no visible evidence of cancer on the scan.
I was relieved.
I was grateful.
I was also not ready to stop asking questions. Tumor testing and self-advocacy became important parts of my journey as I searched for answers and explored my maintenance treatment options.
For me, NED did not mean the cancer journey was over. It meant I had reached a new part of the journey—one where surveillance, tumor information, treatment decisions, side effects, and the fear of recurrence all became part of my life.
I began asking a question that would eventually change my treatment:
If we had learned important things about my tumor, could that information help us decide what to do while I was NED?
No Evidence of Disease Was Wonderful News
When a scan shows no evidence of disease, it means current testing has not found detectable evidence of cancer.
That is wonderful news.
It is also important to understand what NED does—and does not—mean.
A scan cannot see every microscopic cancer cell. NED does not provide an absolute guarantee that cancer can never return.
Still, after surgery and chemotherapy, hearing that there was no visible evidence of disease was an enormous relief.
I had reached the result I had been fighting for.
The National Cancer Institute explains that follow-up care after cancer treatment can include monitoring for recurrence, managing treatment side effects, and addressing other health concerns. The follow-up plan depends on the individual cancer and treatment history.
I celebrated my NED result.
But I also knew my uterine leiomyosarcoma could return.
And that knowledge made me want to understand what else we could learn about my cancer.
I Did Not Feel Comfortable Simply Waiting
The treatment approach presented to me was essentially:
The scan is clear.
Now we watch.
If the cancer returns, we decide what to do next.
I understood the medical reasoning.
Doctors have to balance possible treatment benefits against medication toxicity and other risks.
Giving someone treatment when there is no detectable disease is not automatically better than surveillance.
But emotionally, watchful waiting was difficult for me.
I had already learned how quickly my cancer could grow and spread.
I did not want my entire plan to be:
“Wait until we can see it again.”
I wanted to know whether the information we had gathered during my treatment could help us think differently about the future.
That did not mean I expected a guarantee.
It meant I wanted a conversation.
I Had Been Researching During Chemotherapy
While receiving chemotherapy, I continued researching uterine leiomyosarcoma.
I researched:
Standard treatments
Hormone receptors
Targeted therapies
Tumor biomarkers
Clinical trials
Medications used in other cancers
Molecular testing
Treatments aimed at biological features rather than simply the location where the cancer
began
Rare cancers can present difficult research questions because there are fewer patients available for large studies and fewer established treatment options.
The National Cancer Institute explains that uterine sarcoma treatment can involve surgery, radiation, chemotherapy, hormone therapy, and clinical trials depending on the specific cancer and individual circumstances.
That made research especially important to me.
I wanted to understand the language.
I wanted to understand what questions to ask.
And I wanted to understand whether anything in my tumor testing could potentially matter.
The Medical World Is Looking Beyond Where the Cancer Started
Cancer treatment has traditionally been organized heavily around where a cancer begins.
But researchers have increasingly learned that cancers can also be distinguished by their biological characteristics.
Two cancers that begin in different organs may sometimes share a molecular alteration, protein, receptor, or other biomarker.
In certain circumstances, that shared characteristic may help doctors consider a treatment directed at the biomarker rather than only the cancer's original location.
This is part of precision medicine.
The National Cancer Institute explains that biomarker testing looks for genes, proteins, and other substances in cancer that may provide information useful in treatment decisions. Some treatments are designed to work only when particular biomarkers are present.
But biomarker testing does not mean that finding a marker automatically gives a patient a drug.
The exact biomarker matters.
The cancer type matters.
The evidence supporting the treatment matters.
Previous treatment matters.
The patient's health matters.
And sometimes a treatment is available only through a clinical trial or may be considered off label.
A biomarker is information.
It is not a prescription.
My Inherited Testing and Tumor Testing Gave Different Answers
I had two different kinds of testing.
The first looked for inherited genetic changes in me.
That testing did not identify a known inherited finding that explained my cancer or created an obvious treatment path for my family.
That did not mean the test had failed.
Inherited, or germline, testing looks for genetic changes a person may have been born with.
Tumor testing asks a different question: what biological changes are present in the cancer itself?
The National Cancer Institute specifically distinguishes biomarker testing of cancer from inherited genetic testing.
The second type of testing examined my tumor.
That testing found that my cancer was:
Estrogen receptor positive
Progesterone receptor positive
ALK positive
Those findings did not explain every aspect of my cancer.
They gave us additional pieces of information.
And I wanted to understand what those pieces might mean.
What ER and PR Positive Meant for My Cancer
ER stands for estrogen receptor.
PR stands for progesterone receptor.
A receptor is a protein that can receive signals.
When cancer cells are hormone receptor positive, those receptors may provide information about how the cancer behaves and whether hormone-related treatment could potentially be considered.
Much of the public information about ER and PR testing comes from breast cancer, where hormone therapy is an established part of treatment for many hormone receptor-positive tumors.
But hormone receptors can also be relevant in other cancers, including selected uterine sarcomas, depending on the specific disease and clinical circumstances.
For me, the ER and PR results gave my medical team something specific to discuss.
Could lowering estrogen potentially make the environment less supportive of my cancer?
That was the question.
It was not a guarantee.
Cancer biology is much more complicated than one or two receptors.
But those results gave us something concrete to investigate.
The ALK Finding Was Another Piece of the Puzzle
My tumor testing also reported an ALK-positive finding.
ALK stands for anaplastic lymphoma kinase.
But an ALK result can mean different things depending on exactly what the laboratory found.
It could refer to protein expression, a rearrangement, a fusion, a mutation, amplification, or another type of finding.
The exact wording matters.
Before describing my result more specifically, I want to review my complete tumor report rather than assume what the laboratory meant.
I do not want to call something an ALK fusion, mutation, or rearrangement unless the actual report confirms it.
What mattered to me at the time was that my tumor contained another potentially relevant biological feature.
That did not mean an ALK-targeted drug would necessarily work.
It meant there was another question worth asking.
The NCI explains that biomarker testing may identify potential treatment targets, but whether a matching treatment is appropriate depends on the specific cancer, biomarker, available evidence, and treatment options.
I will cover the ALK portion of my treatment journey separately because the later targeted-therapy decisions deserve their own story.
I Wanted the Test Results Used
After receiving my NED scan, I kept thinking about the tumor-testing results.
Why test the tumor if we were simply going to put the information away until the cancer visibly returned?
I wanted to discuss whether the results could influence my treatment plan.
I was not asking for a guarantee.
I understood that no maintenance medication could promise the cancer would never come back.
I wanted to know whether one of the biological pathways identified in my tumor could potentially be addressed while I was NED.
My thinking was simple:
We know the cancer has hormone receptors.
We know there is an ALK-related finding.
We may not understand everything that caused the cancer to grow, but we know more than we knew before.
Could any of that information help us now?
Maintenance Treatment Was Not the Usual Plan Presented to Me
When I asked about maintenance medication, my cancer doctor explained that maintenance treatment was not normally used that way for uterine leiomyosarcoma.
The usual approach was surveillance.
I understood.
But I kept asking.
I did not care whether the first discussion involved:
Hormone therapy
Targeted therapy
Immunotherapy
Another medically reasonable approach
I wanted the conversation.
I was not demanding that my doctor prescribe something unsafe.
I was asking her to look at the information we had and explain whether there was a reasonable option.
The answer could still have been no.
But I wanted to understand why.
I Brought My Daughter-in-Law With Me
My daughter-in-law is a pharmacist.
She told me beforehand that she did not specialize in cancer drugs and did not intend to speak unless she needed to.
She was not there to pretend she knew more than my oncologist.
She was there to support me.
She could listen to the medication discussion.
She could understand some of the pharmacy terminology.
Most importantly, her presence helped me feel less alone while I advocated for a treatment discussion.
During the appointment, my doctor looked toward her.
My daughter-in-law remained quiet.
She let me speak for myself.
That mattered.
A support person does not always need to take over a medical appointment.
Sometimes the most helpful thing that person can do is sit beside you and make sure you know you are not alone.
I Asked Again
I told my doctor clearly that I wanted to discuss maintenance treatment.
I explained that I did not want to wait for a visible recurrence without considering whether my tumor results gave us another option.
Eventually, my doctor said there was a hormone-based medication commonly used for hormone-sensitive cancers that we could try.
That conversation became the beginning of my maintenance treatment.
It was not a guarantee.
It was not a promise that the cancer would never return.
It was a treatment decision made in the context of my particular cancer, tumor characteristics, and discussion with my medical team.
I Believe the First Drug Was Letrozole
I believe the first aromatase inhibitor I received was letrozole.
I want to verify that medication name against my pharmacy and oncology records before treating it as a final medical detail.
Letrozole is an aromatase inhibitor. These medications reduce estrogen production by blocking the aromatase enzyme.
The NCI describes aromatase inhibitors as hormone-therapy drugs that block the body's production of estrogen through the aromatase pathway.
Other aromatase inhibitors include:
Letrozole
Anastrozole
Exemestane
These medications are well established in hormone-sensitive breast cancer and may be considered in other settings depending on the cancer and available evidence.
For my story, the important point is that my tumor's hormone-receptor information led to a conversation about whether hormone suppression could be part of my treatment plan.
The First Medication Caused Severe Pain
The first medication caused intense muscle and joint pain.
It was not a minor inconvenience.
The pain became crippling.
I had chosen maintenance treatment because I wanted to reduce the possibility of the cancer growing again.
But I also had to live in the body receiving the medication.
That taught me something important:
A treatment can make medical sense and still become unbearable for the person taking it.
Quality of life matters.
Severe side effects should not simply be accepted because a medication is considered important.
They should be reported and evaluated.
I Spoke With the Oncology Pharmacist
I contacted the oncology pharmacy team and explained how much pain I was experiencing.
I asked whether another medication could serve a similar purpose without affecting me quite as severely.
The oncology pharmacist gave me advice that has stayed with me:
There may be several medications within the same treatment family.
If one causes side effects that are difficult or impossible to tolerate, it can be reasonable to ask whether another option exists.
That does not mean another medication will work better.
It does not mean it will have fewer side effects.
And it does not mean a patient should stop or change medication independently.
It means there is value in asking the question.
“Is there another option?”
I Switched to Exemestane
The oncology pharmacy team helped me move to exemestane.
Exemestane is also an aromatase inhibitor.
I still experienced some similar side effects.
But the difference was significant for me.
The pain was more tolerable.
It was not as crippling as it had been with the first medication.
That made it possible for me to continue the maintenance approach.
My experience did not prove that exemestane is better than letrozole.
It proved something much more personal:
One medication may affect one person very differently from another medication in the same general treatment family.
Similar Drugs Do Not Always Feel the Same
Patients sometimes assume that if two medications belong to the same class, their experiences will be identical.
They are not necessarily.
Medications can share mechanisms and common side effects while still affecting individual patients differently.
One person may tolerate one drug very well.
Another person may have significant problems with it.
Someone else may not tolerate either medication.
That is why medication decisions need individualized medical guidance.
My experience taught me not to assume that the first medication was automatically my only option.
I Had to Advocate at Every Stage
I had already advocated for:
An ultrasound when my examination appeared normal
Further investigation of the abdominal masses
Evaluation of the tumor on my back
Copies and explanations of my medical information
Inherited genetic testing
Tumor biomarker testing
A discussion about maintenance treatment
A medication change when the side effects became unbearable
None of those questions guaranteed a better outcome.
Each question gave my medical team more information about what I wanted and what my body was experiencing.
Self-advocacy was never about believing I knew more than every doctor.
It was about refusing to become silent inside my own treatment.
Research Helped Me Speak More Clearly
I brought research and questions to my appointments.
I did not expect my doctor to accept every article I found.
Online information varies tremendously in quality.
A laboratory study does not automatically mean a treatment works for patients.
One patient's experience does not establish a medical standard.
But research helped me understand enough of the language to ask better questions.
I could ask:
What does ER positive mean in my cancer?
What does PR positive mean?
What exactly was the ALK finding?
Is there evidence for hormone therapy?
Are there clinical trials?
Could this treatment be used off label?
What are the expected benefits and risks?
What would we monitor?
What happens if I cannot tolerate it?
The purpose of my research was not to hand my oncologist a treatment order.
It was to participate in the conversation.
Biomarker Testing Does Not Choose a Drug by Itself
This is one of the most important lessons I learned.
Tumor testing can provide valuable information.
But a biomarker does not automatically select a medication.
A report may show a biomarker associated with a treatment, yet that treatment may:
Have limited evidence in that particular cancer
Be available only through a clinical trial
Be considered off label
Be denied by insurance
Have serious risks
Conflict with another medication or health condition
Not work despite the biomarker
Be more appropriate if the cancer returns
Require additional testing
The NCI explains that biomarker testing does not help everyone. A test may find no treatment target, or a matching treatment may be unavailable, inaccessible, or ineffective.
Cancer cells can also be biologically different from one another.
And biomarkers can change over time.
A tumor test is therefore a snapshot, not a complete prediction of the future.
That distinction is important.
Rare Cancer Research Requires Patients and Data
Rare cancers create unique challenges for researchers.
There may be fewer patients available for large clinical trials.
Different patients may have tumors with very different biological characteristics.
Some people may not have access to major cancer centers or clinical trials.
All of this can make it harder to collect enough evidence to establish treatments.
But research continues.
The NCI maintains information about uterine sarcoma treatment and clinical trials, including studies evaluating new approaches.
Modern cancer research is also increasingly interested in treatments based on molecular characteristics that can occur across different cancer types.
The medical landscape continues to change.
Artificial Intelligence May Help Research, but It Does Not Replace Doctors
Artificial intelligence and large medical datasets may eventually help researchers identify patterns, organize molecular information, and study rare patient populations more efficiently.
But AI cannot determine the correct treatment for an individual patient by itself.
The quality of the data matters.
The clinical evidence matters.
The exact tumor finding matters.
The patient's medical history matters.
The patient's goals matter.
AI may become another tool in research and clinical decision support.
It does not eliminate the need for oncologists, pathologists, pharmacists, genetic counselors, researchers, and informed patients.
I Was NED, but I Still Needed a Plan
The scan showed no evidence of disease.
I was not trying to minimize that wonderful result.
I celebrated it.
But I was also thinking about what came next.
I wanted a plan that included:
Continued surveillance
Laboratory monitoring when appropriate
Attention to long-term treatment effects
Use of the tumor information we had
A maintenance approach I could tolerate
Options to consider if the cancer returned
NED was not the end of my cancer story.
It was a new stage of it.
A Support Person Can Change the Appointment
Bringing my daughter-in-law helped me feel prepared.
A support person can help by:
Taking notes
Remembering medication names
Asking for clarification
Making sure questions are answered
Helping compare benefits and side effects
Providing emotional support
Reviewing the plan afterward
Remembering follow-up tasks
The person does not need to be a medical professional.
The most important qualities may be:
Calmness
Listening
Respect for the patient's choices
Willingness to speak only when needed
Ability to remember details
A support person should strengthen the patient's voice—not replace it.
Questions to Ask After Tumor Testing
If you receive a tumor-testing report, consider asking your oncology team:
What exact biomarkers were found?
Was the tumor ER positive?
Was it PR positive?
What exactly does the ALK result say?
Is the ALK finding a fusion, rearrangement, mutation, amplification, or protein-expression result?
Is any finding considered actionable?
Does any finding affect treatment now?
Could it affect treatment if the cancer returns?
Is there a clinical trial?
Would a molecular tumor board review be useful?
Should the tumor be tested again later?
Could any result suggest an inherited genetic condition?
Do I need separate blood or saliva testing?
Can I have a complete copy of the report?
Do not settle for:
“It was positive.”
Ask:
“What was positive, exactly, and what does that mean for me?”
Questions to Ask About Maintenance Treatment
You can ask:
Is maintenance treatment used for my specific cancer?
Is there evidence that it reduces recurrence?
Would this be standard, off label, or experimental?
What are the possible benefits?
What are the risks?
How long would I take it?
How would we monitor it?
What scans or laboratory tests are needed?
What side effects should I watch for?
What happens if the side effects become intolerable?
Are there medications in the same family?
Would insurance cover it?
Should I obtain another opinion?
Is there a clinical trial that might be appropriate?
The answer may still be no.
But patients deserve an explanation they can understand.
Questions to Ask When Side Effects Become Severe
Tell your medical team:
Where the pain occurs
How severe it is
When it began
Whether it affects sleep
Whether it limits walking or work
Whether it changes after taking the medication
What other medicines or supplements you take
Whether there is swelling, weakness, fever, or another concerning symptom
Then ask:
Could the medication be causing this?
Do we need to evaluate another possible cause?
Is a dose adjustment appropriate?
Is a temporary treatment interruption appropriate?
Is another medication in the same class an option?
Is another treatment approach available?
Which symptoms require urgent medical attention?
Never assume severe or new symptoms are something you simply have to endure.
What I Wish Someone Had Told Me
I wish someone had explained sooner that inherited testing and tumor testing answer different questions.
I wish someone had explained every line of the tumor report instead of leaving me to research unfamiliar terms on my own.
I wish I had known that reaching NED could bring both relief and fear.
I wish I had known that asking about maintenance treatment was a conversation I could have, even if the ultimate answer might be no.
I wish I had known that medications within the same general treatment family can sometimes affect people very differently.
Most of all, I wish I had not needed to fight so hard simply to have my questions taken seriously.
Self-Advocacy Is Not Refusing Medical Advice
Self-advocacy does not mean rejecting professional medical advice.
It means participating in your care.
It can mean:
Asking why
Requesting understandable explanations
Reporting side effects honestly
Seeking another opinion when appropriate
Bringing a support person
Requesting copies of records
Understanding available choices
Asking about clinical trials
Participating in treatment decisions
Doctors bring medical education, clinical experience, and knowledge of the evidence.
Patients bring their values, goals, symptoms, treatment experiences, concerns, risk tolerance, and lived experience.
Good medical decisions need both.
Hope for Today
My first PET scan showed no evidence of disease.
The surgery and chemotherapy had done what we hoped they would do.
I could have stopped asking questions and simply waited for the next scan.
Instead, I looked at the information from my tumor testing and asked whether it could help us think about what came next.
My inherited testing had not revealed a known inherited cancer finding.
My tumor had revealed ER, PR, and ALK-related information.
Those findings did not promise a cure.
They gave us more pieces of the puzzle.
I brought my daughter-in-law to the appointment.
I asked about maintenance treatment.
I kept asking after the first answer was no.
I tried the first medication.
The pain became unbearable.
I contacted the oncology pharmacist.
I switched to exemestane.
The side effects did not disappear, but they became more tolerable.
That experience changed the way I approached medications afterward.
The first drug is not always the only drug.
The first answer is not always the end of the conversation.
A clear scan is not necessarily the end of treatment planning.
And a patient asking informed questions is not being difficult.
She is trying to survive.
Frequently Asked Questions
What does no evidence of disease mean?
No evidence of disease means current examinations or tests have not found detectable evidence of cancer. It does not guarantee that cancer can never return, which is why follow-up care may still be recommended.
What is inherited genetic testing?
Inherited, or germline, testing looks for genetic changes a person may have been born with. Some findings can affect a person's cancer risk or have implications for biological relatives.
What is tumor biomarker testing?
Tumor biomarker testing examines genes, proteins, receptors, and other biological features of cancer. The results may sometimes help doctors consider treatments or clinical trials.
Are inherited genetic testing and tumor testing the same?
No. They answer different questions. Tumor testing looks at characteristics of the cancer, while inherited testing looks for genetic changes present in a person's noncancerous cells.
What does ER or PR positive mean?
It means cancer cells contain estrogen receptors, progesterone receptors, or both. In some cancers, hormone-related signaling can influence tumor growth, and hormone-directed treatment may be considered depending on the cancer and clinical evidence.
What is an aromatase inhibitor?
An aromatase inhibitor is a type of hormone-therapy medication that blocks aromatase, an enzyme involved in estrogen production. Examples include letrozole, anastrozole, and exemestane.
Is hormone therapy standard maintenance treatment for uterine leiomyosarcoma?
Treatment is individualized. Hormone therapy is included among treatment options for uterine sarcoma in NCI's treatment information, but evidence and recommendations depend on the specific disease, stage, tumor characteristics, previous treatment, and individual circumstances.
Do tumor biomarkers guarantee that a targeted treatment will work?
No. A biomarker may identify a potential treatment target, but the treatment may not be appropriate, available, tolerated, or effective for an individual patient.
Can I switch medications if the first one causes severe side effects?
Sometimes another medication in the same treatment family may be considered. Do not stop or switch cancer treatment on your own. Report severe side effects to your oncology team and ask whether another option is appropriate.
Should I take someone to an oncology appointment?
A trusted support person can take notes, help remember information, and provide emotional support. The patient should remain at the center of the conversation and decision-making whenever possible.
Support on Your Journey
A clear scan can bring enormous relief while still leaving questions about what happens next.
Surviving Life Lessons Community Groups are being formed to help people connect with others who understand treatment decisions, medication side effects, fear of recurrence, and the challenge of speaking up during medical appointments.
Peer support does not replace oncology care.
Sometimes, though, having someone listen can help you find the words you want to take into the next appointment.
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.
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
National Cancer Institute — Biomarker Testing for Cancer Treatment
https://www.cancer.gov/about-cancer/treatment/types/biomarker-testing-cancer-treatment
National Cancer Institute — Uterine Sarcoma Treatment (PDQ®), Patient Version
https://www.cancer.gov/types/uterine/patient/uterine-sarcoma-treatment-pdq
National Cancer Institute — Uterine Sarcoma Treatment (PDQ®), Health Professional Version
https://www.cancer.gov/types/uterine/hp/uterine-sarcoma-treatment-pdq
National Cancer Institute — Tumor Markers Fact Sheet
https://www.cancer.gov/about-cancer/diagnosis-staging/diagnosis/tumor-markers-fact-sheet
National Cancer Institute — Genetic Testing Fact Sheet
https://www.cancer.gov/about-cancer/causes-prevention/genetics/genetic-testing-fact-sheet
National Cancer Institute — Hormone Receptor Positive, NCI Dictionary of Cancer Terms
https://www.cancer.gov/publications/dictionaries/cancer-terms/def/hormone-receptor-positive
National Cancer Institute — Aromatase Inhibitor, NCI Dictionary of Cancer Terms https://www.cancer.gov/publications/dictionaries/cancer-terms/def/aromatase-inhibitor
National Cancer Institute — Letrozole https://www.cancer.gov/about-cancer/treatment/drugs/letrozole
National Cancer Institute — Targeted Therapy to Treat Cancer https://www.cancer.gov/about-cancer/treatment/types/targeted-therapies
National Cancer Institute — Follow-Up Medical Care https://www.cancer.gov/about-cancer/coping/survivorship/follow-up-care
National Cancer Institute — Exemestane Following Tamoxifen Reduces Breast Cancer Recurrences and Prolongs Survival https://www.cancer.gov/types/breast/research/exemestane-prolongs-survival
National Cancer Institute — Treatment Clinical Trials for Uterine Sarcoma https://www.cancer.gov/research/participate/clinical-trials/disease/uterine-sarcoma/treatment
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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