When My Cancer Doctor Would Not Listen, I Found One Who Would
- Deborah Ann Martin
- 3 days ago
- 15 min read
Why Persistent Symptoms, Changing Test Results, and a Rare Cancer Led Me to Seek a Second Opinion
Almost four years into my cancer journey, I had learned enough about uterine leiomyosarcoma to recognize when something did not feel right.
I was not a doctor.
I did not believe that reading research made me qualified to diagnose myself or choose treatment without medical guidance. I did understand my own history, including how my cancer had appeared before, how quickly it could grow, and which changes needed to be taken seriously.
That knowledge became important when a PET scan showed a suspicious area in my spine.
Around the same time, my Signatera blood test, which normally showed little or no detectable circulating tumor DNA, began showing an increase.
Then I developed severe, unrelenting pain in my lower back, buttock, and legs.
I needed my cancer doctor to look at all those pieces together.
Instead, I felt as though I had to fight to make anyone listen.
My Cancer Doctor Left and I Had to Start Over
I had been receiving care through a large cancer center about an hour from my home in Virginia.
It was a respected center with extensive programs for patients and survivors. It offered specialists, support services, research, education, and many resources that smaller facilities might not have.
My concern was not with the entire cancer center.
My concern was with what happened after my established oncologist left and I was assigned to a new doctor.
Building a relationship with a new oncologist is difficult under ordinary circumstances. It is even harder when the patient has a rare, aggressive cancer and a complicated treatment history.
I needed someone willing to review that history carefully.
The First Warning Was How She Treated a Medical Student
At one appointment, a medical student came into the room before the oncologist.
The student was considering dermatology as a future specialty. While she gathered my history and information, I explained that leiomyosarcoma does not occur only in the uterus.
I told her that some soft-tissue tumors may first appear as a lump or bump under the skin.
My own recurrence had included a painful bump on my back that grew to approximately the size of a golf ball before it was identified as cancer.
I was not trying to take over the appointment.
I was sharing something about a rare cancer that the student might encounter one day as a dermatologist.
After she left the room, I heard the new doctor criticize her for spending too much time with me.
The message seemed to be that she needed to get into the room, complete the required tasks, and get out faster.
That interaction bothered me.
The student had been listening.
She had been learning from a patient whose disease was rare enough that many clinicians might never see it during training.
Instead of encouraging that curiosity, the doctor appeared to treat the extra conversation as wasted time.
I Began to Feel Dismissed Too With Cancer Doctor Not Listening
When I tried to discuss my cancer research with the new oncologist, I did not feel respected.
I did not expect her to agree with everything I read. A cancer doctor not listening when you know your history, your symptoms, and you've done your research.
I wanted her to listen, explain where I might be wrong, and discuss the medical evidence with me.
Instead, I felt as though she assumed I could not understand the conversation because I was the patient.
That approach did not work for me.
By that point, I had spent years reading about uterine leiomyosarcoma, tumor biomarkers, treatment options, recurrence, maintenance medicines, and my own medical results.
I knew the difference between bringing a reasonable question and pretending to hold a medical degree.
I wanted a doctor who understood that difference too.
My PET Scan Showed Something in My Spine
A PET scan performed around August or September showed activity involving an area of my spine.
A PET scan identifies areas where a radioactive tracer collects more strongly. Cancer may cause increased uptake, but inflammation, infection, healing, and some noncancerous conditions may also produce activity.
A PET finding is therefore not always a final diagnosis.
It is one piece of the puzzle that may lead to MRI, biopsy, repeat imaging, or another form of evaluation. PET and CT together can help doctors locate suspicious areas and monitor possible cancer, but findings still need clinical interpretation.
Because I had Stage IV uterine leiomyosarcoma, a suspicious spinal finding could not be treated as an ordinary incidental observation.
It needed the correct follow-up.
The Wrong MRI Was Ordered
The new doctor appropriately marked the MRI request as urgent.
I appreciated that.
However, when I traveled an hour to the cancer center for the appointment, the radiology staff reviewed the order and told me it did not cover the area that needed to be evaluated.
The wrong test had been ordered.
I had made the long trip, prepared for the MRI, and arrived expecting an important question to be investigated.
Instead, I was sent home.
Radiology notified the doctor that different imaging was needed.
The Replacement Was Scheduled Months Away
The corrected imaging involved more than one MRI.
The appointments were scheduled together, which could have required me to remain inside the scanner and imaging department for many hours.
They were also scheduled months into the future.
For someone with a slow, stable condition, that delay might have been acceptable.
I had an aggressive rare cancer, a suspicious PET finding, changing blood-test information, and increasingly serious symptoms.
Waiting several months did not feel safe to me.
The Pain Became Debilitating
During this period, I began experiencing severe pain through my lower back, buttock, and legs.
It was not occasional soreness.
It felt like a knife had been driven into my body.
The pain was sharp, constant, and disabling.
At times, it caused my body to buckle underneath me. I went to the emergency room more than once because I ended up on the floor and could not get up.
I needed help with basic activities, including getting into and out of the shower.
My son, who has helped care for me throughout my cancer journey, had to take on more responsibility because I had lost so much mobility.
A Massage Therapist Found a Large Mass
During a massage appointment, the therapist felt a large mass in my lower back or buttock area.
He outlined the area so I could show the medical team exactly where it was.
I took a picture and sent the information to the oncologist.
Her response was essentially to apply heat.
I asked whether she would look at the mass.
She declined and repeated the heat recommendation.
That answer was not acceptable to me.
My Previous Cancer Had Appeared as a Bump
I reminded her that I had uterine leiomyosarcoma.
I reminded her that one of my earlier cancer sites had first appeared as a bump on my back.
I explained that the new mass was accompanied by severe, constant, disabling pain.
I was not saying:
“This must be cancer.”
I was saying:
“My history means this cannot safely be dismissed without an examination.”
New or worsening physical problems that interfere with daily life should be reported during cancer follow-up care. Survivors should tell their doctors about symptoms, medication changes, functional problems, and other health changes rather than assume that surveillance scans alone will reveal everything.
I Called Every Day for an Earlier MRI
I asked a nurse to help place the correct orders at a facility closer to my home.
Then I began calling.
I called the original cancer center.
I called the closer Riverside facility.
Some days I called two or three times.
I asked whether there had been a cancellation.
I called again the next day.
I was not trying to push another patient out of an appointment.
I was asking to be placed into an opening that otherwise might go unused.
Through that persistence, I moved the imaging from late fall to the beginning of October.
A Radiology Professional Encouraged a Second Opinion
When I went to Riverside for the MRI, a radiology professional reviewed the situation and was surprised that the necessary studies had initially been grouped into one prolonged appointment.
He listened to what had been happening.
He knew a cancer doctor within the Riverside network and suggested that I consider seeking another opinion.
That suggestion helped me take the next step.
I already knew the relationship with my oncologist was not working.
Now another healthcare professional was telling me that a second review might be wise.
Seeking a Second Opinion Is Normal Cancer Care
Cancer patients sometimes worry that requesting another opinion will offend their doctor.
The National Cancer Institute explains that second opinions are common and that most doctors welcome them. A second doctor may agree with the first plan, identify another option, provide more information, or raise questions that need further investigation.
I did not seek a new doctor because I wanted someone who would automatically agree with me.
I needed someone who would examine me, review all the evidence, and discuss the possibilities respectfully.
The New Doctor Took the Painful Mass Seriously
The Riverside cancer doctor evaluated the situation and referred me to a general surgeon.
Within about two weeks, I had seen the cancer doctor, met the surgeon, and developed a plan to remove the mass.
The mass had been causing debilitating pain for approximately three months.
It was pressing in an area that affected nerves and movement.
The surgeon removed it and sent it to pathology.
It turned out to be a lipoma, which is a benign fatty growth.
Benign Did Not Mean Unimportant
The mass was not cancer.
That did not mean removing it had been unnecessary.
It had been pressing on a nerve and causing extreme pain.
After it was removed, the knife-like pain improved significantly.
I still had muscle and mobility problems, but I was no longer living with the same relentless nerve pressure.
This became an important lesson:
A cancer survivor’s new lump does not have to be cancer to deserve an examination.
Doctors should not assume every symptom is a recurrence.
They should also not use the possibility of a benign explanation as a reason to refuse an evaluation.
The Lipoma and the Spinal Finding Were Separate Questions
Removing the lipoma did not answer the concern raised by the PET scan.
There was still a suspicious area involving my spine.
There was still an increase in the circulating tumor DNA detected by my Signatera test.
There was still my history of metastatic uterine leiomyosarcoma.
My new medical team continued evaluating the spinal area.
The Biopsy Was Inconclusive
A biopsy was attempted.
Because of the area’s location and the difficulty of reaching it, the result was inconclusive.
An inconclusive biopsy does not prove that a suspicious area is cancer.
It also does not prove that it is benign.
It means the tissue obtained did not provide a definite answer.
The doctors then had to consider the complete picture rather than relying on one result.
Signatera Was Another Piece of the Puzzle
Signatera is a personalized, tumor-informed circulating tumor DNA test.
My assay was created from selected DNA information from my tumor. Later blood samples look for matching tumor DNA fragments.
Before this episode, my results had generally shown very little or no detectable tumor DNA.
Around the time the spinal concern developed, the result increased.
A positive or rising ctDNA result does not reveal exactly where cancer is located and does not replace imaging or biopsy. Natera states that a positive result indicates that matching tumor DNA was detected, while a negative result cannot guarantee cancer will never be detected later. The result is additional information for the doctor to interpret with imaging, symptoms, and medical history.
In my case, it was one more piece that made the spinal finding harder to ignore.
The Doctors Had to Make a Decision Without Perfect Proof
The medical team considered:
My history of Stage IV uterine leiomyosarcoma
The PET scan activity
The MRI findings
My symptoms
The rise in my personalized ctDNA result
The inconclusive biopsy
The location of the suspicious area
The risks of waiting
The risks and possible benefits of treatment
No single piece gave complete certainty.
Together, they created a strong concern that the area represented metastatic disease.
Medicine does not always provide a perfect biopsy, a perfect scan, and a perfectly clear answer before action is needed.
Sometimes doctors must make an individualized decision from the best evidence available.
I Received Five Strong Radiation Treatments
Because the suspicious area was not immediately beside certain vital organs, my team determined that focused radiation could be given in five strong treatments.
That was my individual radiation plan.
Other patients may receive different doses, numbers of treatments, or forms of radiation depending on the tumor’s location, size, previous radiation, nearby organs, and overall health.
I experienced some skin irritation, nausea, and other effects.
The burns were not as severe as I had feared.
Given the same circumstances, I would make the decision again.
Changing Doctors Was Necessary
By that point, I knew I could not continue with a doctor who did not listen to me.
The issue was not that she had failed to agree with every conclusion I reached.
The issue was the pattern:
I felt talked down to.
The wrong imaging was ordered.
Corrected testing was scheduled months away.
Severe symptoms were dismissed.
A newly identified mass was not examined.
My rare-cancer history was not given enough weight.
I could not have a collaborative discussion about the research I brought.
I needed another oncologist.
Changing doctors was not an act of revenge.
It was part of protecting my life.
Rare-Cancer Patients Need Doctors Willing to Learn
No physician can know every fact about every rare cancer.
Uterine leiomyosarcoma is uncommon.
Evidence may be limited.
Treatment plans may depend on case reports, small studies, tumor biology, expert opinion, drug-compendia information, and careful reasoning.
I did not need a doctor who pretended to know everything.
I needed one willing to say:
“Let us look at the evidence together.”
That is what I found in the new doctor.
We Discussed My ALK-Positive Tumor Finding
My original tumor testing showed that the cancer was ER positive, PR positive, and ALK positive.
I was already using exemestane to address the hormone-receptor-positive part of the cancer.
I wanted to discuss whether the ALK-positive finding offered another treatment direction.
I researched professional information about ALK-targeted therapy and brought what I found to my new doctor.
We talked through the reasoning.
He did not dismiss me because I was the patient.
He did not prescribe the medicine simply because I asked.
We examined the information together and decided that trying lorlatinib was reasonable as an individualized, off-label approach.
The VA Needed Evidence Before Approving It
Lorlatinib is an extremely expensive medicine.
It is approved for certain ALK-positive lung cancers, not specifically for uterine leiomyosarcoma.
The VA pharmacy reasonably wanted a medical justification before agreeing to provide it for my rare cancer.
My doctor submitted the prescription.
Then the VA requested more details about:
My diagnosis
My medical history
My tumor-testing results
The ALK-positive finding
The research and reasoning behind the request
Why this treatment was appropriate for me
This was not a routine prescription.
It required evidence.
A Regional VA Cancer Clinician Joined My Team
The review brought a regional VA gynecologic cancer clinician into my care.
I sent the relevant records.
The team received copies of my tumor and genetic testing.
I explained the reasoning we had used.
The additional review resulted in another knowledgeable person becoming part of my medical network.
That was valuable because my treatment was not standard.
I needed more eyes on the plan, not fewer.
Individualized Treatment Requires Individualized Monitoring
Lorlatinib brought significant side effects, including severe mental effects at the original dose, major blood-sugar changes, cholesterol problems, weight gain, and neuropathy.
My dose was reduced from 100 milligrams to 50 milligrams after discussion with my doctors.
I also remained on exemestane.
The combination is part of my individualized maintenance plan.
Because the plan is unusual, my care team monitors more than whether a standard guideline says to continue.
They monitor me.
I Have Remained NED
Since the radiation and the development of my individualized maintenance approach, I have remained no evidence of disease on my surveillance.
NED does not prove that every cancer cell is gone.
It means that current testing has not shown detectable active disease.
For someone with my history, that is still worth celebrating.
I have survived more than five years with Stage IV uterine leiomyosarcoma after morcellation, multiple recurrences, spinal involvement, radiation, and long-term maintenance treatment.
I do not take that time for granted.
Advocacy Is Not Practicing Medicine Without a License
Patient advocacy does not mean diagnosing yourself.
It does not mean demanding every test.
It does not mean refusing every professional recommendation.
It means:
Learning your diagnosis
Keeping your records
Knowing your previous cancer locations
Reporting new symptoms
Tracking changes
Asking what a test covers
Checking that the correct body area was ordered
Asking why waiting is considered safe
Seeking another opinion when concerns remain unresolved
Bringing credible research to appointments
Participating in the decision
A well-informed patient and a skilled physician do not have to compete.
They can work together.
Sometimes the Patient Has More Time to Study One Rare Cancer
Doctors care for many patients with many diseases.
I live with one rare cancer every day.
I have more time to research uterine leiomyosarcoma than a general oncologist may have between appointments.
That does not give me the doctor’s clinical training.
It does mean I may discover a study, treatment reference, side-effect report, or patient question worth discussing.
A good medical conversation respects both forms of knowledge.
The doctor brings medical education and clinical judgment.
The patient brings lived experience, symptom awareness, priorities, and focused research.
Why I Created the Ultimate Cancer Guide
I created the Ultimate Cancer Guide because I know how hard it is to manage all this information.
During the spinal episode, I was in severe pain and had lost much of my independence.
My son was helping me shower, move safely, attend appointments, and keep track of what was happening.
A caregiver cannot help effectively when the medical information is scattered across portals, notebooks, loose papers, and memory.
The guide is meant to help patients and caregivers track:
Diagnosis and stage
Pathology
Tumor biomarkers
Genetic testing
Scans
Blood-test trends
Symptoms
Blood pressure
Blood sugar
Medications
Side effects
Appointments
Questions
Treatment decisions
Doctors’ contact information
Emergency information
I did not create it because paperwork cures cancer.
I created it because organized information can improve conversations and reduce confusion.
Questions to Ask When a New Symptom Is Dismissed
When going to your oncologist or specialty doctor, it is always important to let them know what symptoms you are experiencing, how long, and anything else you can tell them. Track it.
Could this symptom be related to my cancer history?
What other causes are possible?
Have you physically examined the area?
What would make you order imaging?
Does the imaging order cover the correct location?
Why is it medically safe to wait?
What symptoms should send me to the emergency room?
Would another specialist be appropriate?
Can I have a second opinion?
May I receive copies of the order and report?
What should I do if the symptom worsens?
Who should I contact if I cannot reach you?
Reasons to Consider Another Oncology Opinion
A second opinion may be appropriate when:
The cancer is rare.
The diagnosis is uncertain.
The biopsy is inconclusive.
A major treatment decision is being made.
Symptoms and test results do not fit together.
The patient does not understand the plan.
The doctor repeatedly dismisses important concerns.
Communication has broken down.
A clinical trial or targeted treatment may exist.
The patient no longer trusts that serious symptoms will be evaluated.
Second opinions are a normal part of cancer care, not a personal attack on the original physician.
What I Wish Someone Had Told Me
I wish someone had told me that I was allowed to change oncologists.
I wish I had known that an urgent order could still be the wrong test.
I wish someone had told me to ask which body area an MRI actually covered before making the trip.
I wish I had understood that calling for cancellations was a reasonable way to move an urgent test forward.
I wish someone had told me that a benign mass could still cause disabling pain and deserve removal.
I wish more doctors understood that rare-cancer patients may bring valuable, credible research into the room.
Most of all, I wish someone had told me:
“You are not required to remain with a doctor who makes you afraid that your next serious symptom will be dismissed.”
Hope for Today
My painful mass was a lipoma.
I was relieved that it was not cancer.
I was also relieved that someone finally removed it.
The suspicious area in my spine was more complicated.
The biopsy could not provide a clear answer.
My doctors looked at the PET scan, MRI, symptoms, Signatera increase, cancer history, and risks. Together, we made a decision to treat it with five focused radiation sessions.
Then I found a cancer doctor who listened.
He was willing to review my research about ALK-targeted treatment.
He was willing to reason through an individualized plan.
The VA asked for evidence, and we supplied it.
A regional VA cancer clinician became part of my team.
The pharmacy reviewed the request.
The treatment was approved.
I have remained NED.
I do not know which single decision gave me these years.
Cancer care rarely works as one isolated moment.
It was the imaging.
It was the repeated phone calls.
It was the surgery.
It was the pathology.
It was the radiation.
It was the tumor testing.
It was the second opinion.
It was the new doctor.
It was the VA review.
It was the maintenance treatment.
It was the team.
It was also my refusal to remain silent when my body was telling me something needed attention.
Support on Your Journey
Being dismissed by a healthcare professional can make a cancer patient question her own judgment.
Surviving Life Lessons Community Groups are being formed so patients and caregivers can discuss rare cancer, second opinions, medical records, symptoms, treatment research, and rebuilding trust after a poor medical experience.
You do not have to know the diagnosis before asking to be examined.
You only need to know that something has changed.
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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.
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References
National Cancer Institute. “Finding Cancer Care.”https://www.cancer.gov/about-cancer/managing-care/finding-cancer-care
National Cancer Institute. “Definition of Second Opinion.”https://www.cancer.gov/publications/dictionaries/cancer-terms/def/second-opinion
National Cancer Institute. “Questions to Ask Your Doctor About Treatment.”https://www.cancer.gov/about-cancer/treatment/questions
National Cancer Institute. “Follow-Up Medical Care.”https://www.cancer.gov/about-cancer/coping/survivorship/follow-up-care
National Cancer Institute. “Computed Tomography (CT) Scans and Cancer.”https://www.cancer.gov/about-cancer/diagnosis-staging/ct-scans-fact-sheet
Natera. “Signatera Frequently Asked Questions.”https://www.natera.com/oncology/signatera-advanced-cancer-detection/faq/
Natera. “Signatera for Patients.”https://www.natera.com/oncology/signatera-advanced-cancer-detection/patients/
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