Treating a Spinal Lesion When the Biopsy Was Inconclusive
Updated: 1 day ago
When the biopsy doesn’t give a clear answer, the decision becomes even harder.
Why an Inconclusive Biopsy Made Waiting More Difficult
The tests did not give us one perfect answer.
The PET scan showed increasing activity at T11. The MRI described a lesion that could represent a Schmorl’s node or metastatic disease. The bone scan showed increasing uptake in the same area. My Signatera test, which had previously shown no or very little detectable tumor DNA, became positive.
The spinal biopsy was inconclusive. The inconclusive biopsy left me without a clear answer. The PET scan, MRI, symptoms, and my cancer history all had to be considered before deciding what to do next.
On paper, the doctors could not say with complete certainty that the lesion was uterine leiomyosarcoma. From my perspective, every important piece pointed in the same direction.
I had a rare, aggressive cancer known to spread through the bloodstream. I had severe pain. I had changing imaging. I had tumor DNA detected in my blood. I did not believe waiting several more months for the cancer to become easier to prove was the safest choice.
When the Biopsy Was Inconclusive: Sometimes Cancer Care Requires a Decision Before Certainty
I understand why doctors want proof before exposing a patient to another treatment.
Radiation has risks.
A suspicious image is not always cancer.
Schmorl’s nodes are changes involving spinal discs and nearby vertebral bone. They may sometimes create findings that resemble other conditions on imaging, and Cancer can cause a Schmorl's node.
But I was not a person with no cancer history and one unexpected spot on a scan.
I had already been diagnosed with metastatic uterine leiomyosarcoma. My cancer had returned before. It had appeared in more than one area of my body. My personalized Signatera blood test had changed from negative or nearly undetectable to positive.
That history changed how I viewed the uncertainty.
“If It Walks Like a Duck”
I often explained my thinking this way:
If it walks like a duck and sounds like a duck, it is probably a duck.
That did not mean I believed I knew more than the radiologist, pathologist, or oncologist.
It meant I believed the complete pattern mattered.
One test suggested metastatic disease as a possibility.
Another test showed increased activity.
Another showed increasing uptake.
My blood test detected DNA matching my cancer.
The biopsy could not rule cancer in or out.
My symptoms were severe.
You have had a friend with it in her spine who passed.
When all those pieces were placed together, I believed the probability of cancer was too high to justify waiting And when you witnessed another friend being NED, and three months later it spread to a lot of places, and she passed shortly after learning it was back. Waiting for 100% confirmation on all tests can cause you to
My Cockroach Comparison
I think of aggressive cancer somewhat like discovering a cockroach in the house.
One cockroach may seem manageable.
If it is ignored and allowed to multiply, the problem can become much harder to control.
Cancer is not literally a pest infestation, and treatment is far more complicated than spraying pesticide. The comparison explains the urgency I felt.
I would rather address one suspected area while it was still small and treatable than wait until several obvious tumors appeared.
Once a fast-growing cancer spreads into multiple locations, controlling it may become much harder.
Waiting Also Has Risks
People often discuss the risks of treatment.
Waiting has risks too.
For me, waiting could have meant:
Allowing a small metastatic area to grow
Giving cancer time to reach another location
Increasing damage to the vertebra
Allowing pain or neurological symptoms to worsen
Losing the opportunity to use focused treatment on a limited area
Reaching a point when treatment became more complicated
Losing mobility
No one could promise that any of those things would happen.
No one could promise that they would not.
That was the decision we faced.
We Chose Focused Radiation
My new cancer team looked at the entire situation.
Because the area was limited and could be treated without exposing nearby vital organs to an unacceptable amount of radiation, we chose five strong, focused radiation treatments.
The goal was to treat the suspicious area before it had the opportunity to become a larger problem.
I experienced nausea and some radiation-related skin effects.
The treatment was not pleasant.
I would make the same decision again!!!!!!!!
What Happened After Radiation
After radiation, the area stopped showing the same continued increase in uptake.
That does not provide absolute proof that the lesion had been cancer.
It also does not erase the reasons we treated it.
It tells me that the suspicious area was addressed and has not continued behaving the way it had before treatment.
For my doctors and me, that outcome supported the decision we made from the evidence available at the time.
I Do Not Need the World to Agree
Some people may believe we should have waited for it to be proven 100%
Others may believe treatment was the obvious choice.
They were not living inside my body.
They were not carrying my cancer history.
They were not watching several test results change at the same time.
They were not facing a rare, fast-growing cancer that had already returned more than once.
I do not need every reader to analyze the decision as though it were a medical courtroom.
I need them to understand the larger lesson:
When a rare and aggressive cancer is involved, waiting for perfect certainty may carry its own serious risk.
The Decision Was Individualized
My treatment decision was not based on one test.
It was based on the whole picture.
I had a history of metastatic uterine leiomyosarcoma. I had experienced recurrence before. I had severe pain. My imaging was changing. My PET scan showed increasing activity at T11. My MRI showed a lesion that could represent either a Schmorl’s node or metastatic disease. A later bone scan showed increasing uptake in the same area. My Signatera result had changed from negative or nearly undetectable to positive.
And then there was the biopsy.
It was inconclusive.
That meant we did not have the one piece of evidence that might have made the decision feel simple.
But medicine does not always give doctors, or patients, every piece of the puzzle.
Sometimes the Puzzle Is Missing Pieces
I have learned that one of the hardest parts of cancer is accepting that there may not be a perfect answer.
Some people want 100% assurance before making a decision.
I understand that.
If someone tells me there is a suspicious spot in my body, I want to know exactly what it is.
Is it cancer?
Is it benign?
Do I need treatment?
Can I safely wait?
Those are reasonable questions.
But sometimes medicine cannot answer them with absolute certainty.
Doctors have to take the information that is available and put the pieces together.
They look at imaging.
They look at pathology.
They look at laboratory results.
They look at symptoms.
They look at the patient's medical history.
They consider previous cancers and previous treatments.
They consider how quickly something has changed.
They consider the location of the abnormality and what could happen if it grows.
They consider the patient's overall health and other medical conditions.
They consider what treatment would involve and what risks it carries.
Then they have to make a judgment about what is most reasonable with the information available at that moment.
Sometimes all the puzzle pieces fit together.
Sometimes they do not.
And sometimes a decision still has to be made.
That is what happened to me.
There Are Risks on Both Sides
One thing I wish more people understood is that choosing treatment is not always choosing between risk and no risk.
Sometimes the choice is between two different kinds of risk.
If I treated the lesion and it turned out not to be cancer, I could experience side effects from a treatment I ultimately did not need.
That was a real risk.
Radiation has risks. I experienced some of them.
But if I waited and the lesion was cancer, there was another possibility: the cancer could grow, spread, cause more damage, create more symptoms, or become more difficult to treat.
That was also a real concern.
Neither choice came with a guarantee.
Treatment did not guarantee that the lesion was cancer.
Waiting did not guarantee that it was benign.
Treatment carried potential harms.
Waiting carried potential harms.
That is why these decisions can be so difficult.
The Question Is Not Always “What Is It?”
Sometimes the question has to become:
“Given everything we know right now, what is the safest and most reasonable thing to do?”
Those are not always the same question.
If doctors had been able to prove with certainty that the lesion was cancer, the decision might have been easier.
If they had been able to prove with certainty that it was a benign Schmorl’s node, the decision might also have been easier.
But neither happened.
We were left in the middle.
And being in the middle does not mean doing nothing is automatically the safest choice.
It means the risks and benefits of each option have to be considered.
Why Treatment Is So Individualized
Cancer treatment cannot always be reduced to:
“This test says this, so everyone should do the same thing.”
Two people can have similar-looking findings and receive different recommendations.
Their cancers may behave differently.
Their previous treatments may be different.
Their other medical conditions may be different.
Their age and overall health may be different.
The location of the suspected disease may be different.
The potential benefit of treatment may be different.
The potential harm may be different.
And the patients themselves may have different goals.
One person may be willing to accept significant treatment risks for even a possibility of controlling a suspicious area.
Another person may decide that the risks of treatment are greater than the possible benefit and choose surveillance.
Neither person is necessarily making the wrong decision.
They may simply be making different decisions based on different circumstances and different values.
That is one reason cancer treatment is so individualized.
What Should a Patient Ask?
When there is uncertainty, I think patients deserve to understand both sides of the decision.
Not just:
“What happens if we treat this?”
But also:
“What happens if we don't?”
Some questions I would encourage a patient to ask are:
What are the possible explanations for this finding?
What makes you think it could be cancer?
What makes you think it might not be cancer?
What information are we still missing?
How reliable is the biopsy or other test in this particular situation?
What are the risks of treating it now?
What are the risks of waiting?
If we wait, what are we watching for?
How soon would we repeat the imaging or testing?
What changes would make you recommend treatment?
Could waiting make treatment more difficult later?
What is the goal of treatment if we decide to proceed?
How will we know whether the treatment worked?
Is there another test, specialist, or second opinion that could help?
What would you recommend if this were your patient or someone in your family?
Most importantly, “What would you recommend for me, considering my entire medical history?”
Ask About the Risk of Waiting
I think this question is especially important.
We are accustomed to hearing about the risks of treatment.
We hear about radiation side effects.
We hear about surgery complications.
We hear about chemotherapy side effects.
But patients should also be able to ask about the possible consequences of waiting.
Sometimes waiting is exactly the right decision.
When a petscan lit up and we did the MRI and they didn't see a mass. I have waited before.
Sometimes surveillance is safer than immediate treatment.
Sometimes additional testing can provide the missing puzzle piece. I have talked to the doctor and requested additional test before. Every situation is different based on the test and the doctors explaination.
And sometimes waiting may allow a disease to progress.
The important thing is not to assume that waiting is automatically the cautious choice.
Waiting is also a decision.
It should have a reason, a plan, and a way to determine when the plan needs to change.
Ask What You Are Waiting For
One question that can be especially helpful is:
“What are we hoping to learn by waiting?”
If the answer is that another scan could clarify the situation, ask when that scan should happen.
If the answer is that the lesion needs to change before treatment is recommended, ask what kind of change would matter.
If the answer is that the risks of treatment currently outweigh the possible benefit, ask what would change that balance.
There is a big difference between:
“Let's wait and see.”
and:
“Let's monitor this closely because we believe the risks of treatment currently outweigh the risks of waiting, and here is exactly what we will do next.”
The second gives the patient a plan.
A Second Opinion Can Be Part of the Puzzle
When a decision feels uncertain or especially important, asking another qualified specialist to review the situation can also be reasonable.
A second opinion does not necessarily mean that the first doctor was wrong.
Sometimes it simply provides another set of eyes.
Cancer is complicated, and different specialists may look at the same information from different perspectives.
A medical oncologist may think about the cancer as a whole.
A radiologist interprets the imaging.
A pathologist interprets tissue.
A radiation oncologist considers whether and how an area can be treated safely.
A surgeon considers whether an operation is appropriate.
Bringing those perspectives together can sometimes help complete more of the puzzle.
I Had to Decide What Risk I Was Willing to Take
Eventually, I had to stop asking whether I could get absolute certainty.
I couldn't.
The better question became:
Which risk was I more willing to accept?
Was I more willing to accept the possibility of treating a lesion that might not be cancer?
Or was I more willing to accept the possibility of leaving cancer untreated while waiting for stronger proof?
For me, the answer was clear.
Because of my history, the changing tests, my symptoms, the positive Signatera result, and what I had personally witnessed with another woman who had the same rare cancer, I was not comfortable waiting.
My doctors considered those factors along with the risks and benefits of radiation.
We made the decision together.
This Is Where Personal Experience Enters the Decision
I know some people may look at my story and say:
“But the biopsy was inconclusive. How could you treat it?”
That is a fair question.
My answer is that the biopsy was only one piece of the puzzle.
It did not give us a definitive diagnosis.
But it also did not erase everything else that was happening.
My cancer history mattered.
My symptoms mattered.
The changing imaging mattered.
The Signatera result mattered.
The location mattered.
The possibility that the lesion could become more difficult to treat mattered.
My personal experience mattered too.
I had seen someone with my rare cancer develop serious spinal disease.
Her experience did not prove what my lesion was.
But it changed what I was willing to risk.
Patients are not blank medical charts.
We bring our experiences, our fears, our hopes, and our understanding of what we are willing to endure into these decisions.
That does not mean fear should make the medical decision.
It means our experiences are part of understanding what the risks mean to us.
There Is No Perfect Decision
I think one of the hardest lessons in cancer is that sometimes there is no choice that feels completely safe.
You can treat and worry that you treated too soon.
You can wait and worry that you waited too long.
You can undergo another test and worry that it still will not provide an answer.
You can choose surveillance and worry about what might be growing while you watch.
You can choose treatment and worry about side effects.
Those feelings do not necessarily mean you made the wrong decision.
They may simply mean the decision was difficult.
The goal is not always to find the choice with zero risk.
Sometimes the goal is to understand the risks of each option as honestly as possible and choose the path that makes the most sense for that patient, at that time, with the information available.
What I Wish Someone Had Told Me
I wish someone had told me that cancer decisions are not always made with complete certainty.
I wish I had known that a biopsy could be inconclusive even when several other findings remained concerning.
I wish someone had explained that doctors sometimes have to make decisions using an incomplete set of puzzle pieces.
I wish I had understood sooner that treatment and waiting can both carry risks.
I wish someone had told me that asking about the risk of waiting is just as legitimate as asking about the risk of treatment.
I wish someone had encouraged me to ask:
“What are we waiting for?”
“What could happen while we wait?”
“What would make you change the plan?”
“What would you recommend if this were you?”
And most of all, I wish someone had told me:
You do not have to pretend uncertainty feels safe simply because there is not enough evidence to give you 100% certainty.
Sometimes there are missing puzzle pieces.
Sometimes the decision still has to be made (treat or wait). Both are decisions.
And when that happens, the best decision is not necessarily the one with no risk.
It may be the one that makes the most sense when you consider the entire picture.
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References
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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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