My First Year With Stage IV Uterine Leiomyosarcoma
First Year With Uterine Leiomyosarcoma: Surgery, Doxorubicin, Pneumonia, and Learning How to Survive One Day at a Time
My first year with Stage IV uterine leiomyosarcoma did not begin when a doctor said the word cancer.
It began with a mass.
On August 25, 2020, an ultrasound found something that should not have been there. A CT scan on September 3 showed a large mass and another mass under the skin near my chest wall and back.
On September 9, a biopsy confirmed metastatic leiomyosarcoma.
In the span of a few weeks, I went from living my ordinary life to learning that I had a rare cancer that had already spread.
The Cancer Had Been Hiding Behind the Word Fibroid
Two years earlier, in September 2018, I had undergone a total laparoscopic hysterectomy for what was believed to be a fibroid uterus.
The uterine tissue was removed through morcellation.
At the time, the pathology was reported as benign. I believed the surgery had solved the problem, and I returned to my life.
I did not know that I would later be diagnosed with uterine leiomyosarcoma.
Available testing cannot reliably distinguish every uterine leiomyosarcoma from a benign fibroid before surgery. The FDA also warns that morcellation of an unsuspected uterine sarcoma can spread cancerous tissue within the abdomen and pelvis.
By 2020, this was no longer a question about a fibroid.
It was metastatic cancer.
The Diagnosis Changed Everything at Once
There is no slow, gentle way to absorb a Stage IV diagnosis.
One minute, you are thinking about work, family, groceries, bills, and plans. The next minute, your mind is trying to understand words such as metastatic, sarcoma, tumor grade, chemotherapy, survival, and recurrence.
I had to accept that the doctors were talking about me.
I had to tell my children.
I had to listen to medical information while part of my mind was still asking:
“How can this be happening?”
Cancer did not wait for me to become emotionally prepared.
Appointments were scheduled.
Tests were ordered.
Surgery had to happen.
Decisions had to be made.
The Tumors Were Large
On September 23, 2020, I underwent surgery.
The doctors removed two very large pelvic masses, measuring approximately thirteen centimeters and twelve centimeters. They also removed other pelvic masses, including a two-centimeter mass that was benign.
The final diagnosis was Grade II uterine leiomyosarcoma.
Uterine leiomyosarcoma develops from smooth muscle in the uterus. Surgery is a central part of treatment for uterine sarcoma, sometimes followed by or combined with chemotherapy or radiation depending on the disease and the patient’s circumstances.
For me, surgery was not the end of treatment.
It was the beginning.
Tumor Testing Gave Us More Information
Tissue from my cancer was sent for Caris tumor profiling.
The results showed that my tumor was:
Estrogen-receptor positive
Progesterone-receptor positive
Microsatellite stable
Positive for an ALK fusion
My family, or germline, genetic testing did not identify an inherited cancer finding.
That distinction mattered.
The tumor contained biological features that could influence treatment discussions, but my inherited testing did not show that I had received a known cancer-causing genetic change from my family.
At the time, I did not yet understand how important the ER, PR, and ALK results would become.
Years later, they helped guide my long-term maintenance treatment and my advocacy for lorlatinib.
I Needed Another Surgery
The mass under the skin near my back also had to be removed.
That surgery took place on October 13, 2020.
The lump had seemed separate from the pelvic problems, but it was part of the metastatic cancer.
That experience permanently changed the way I respond to new lumps.
Years later, when another painful mass appeared in my upper buttock and a doctor dismissed it without examining it, I remembered this first back mass.
I knew that my cancer had already appeared that way once.
There Was Barely Time to Recover Before Chemotherapy
Two days after the back surgery, I began doxorubicin chemotherapy.
My treatments ran from approximately October 15, 2020, through January 28, 2021.
Doxorubicin is an anthracycline chemotherapy drug used in the treatment of several cancers, including advanced or metastatic leiomyosarcoma. It damages cancer-cell DNA and interferes with processes the cells need to divide and repair themselves.
I knew chemotherapy was intended to fight the cancer.
I also knew it was powerful enough to affect the rest of my body.
That is the difficult balance of cancer treatment.
The medicine that may help keep you alive can also make you very sick.
The First Day of Chemotherapy Was Frightening
The first chemotherapy treatment carried its own fear.
I did not know exactly how my body would respond.
I did not know whether I would have an immediate reaction.
I did not know how sick I would become later.
I did not know whether the treatment would work.
People sometimes describe chemotherapy as though the patient simply sits in a chair while medicine enters the body.
The physical act may look quiet.
The emotional experience is not.
You are sitting there while a powerful drug enters your bloodstream, hoping it destroys the cancer without causing damage your body cannot recover from.
I Continued Working
During chemotherapy, I continued working.
My employer allowed me to flex my schedule around treatments, bloodwork, and appointments.
That accommodation helped me protect my job and income.
It also meant I often made up the missed hours in the evenings or on weekends.
The flexibility did not create extra time.
It moved work into the hours when I might otherwise have rested.
I was trying to survive cancer while still earning enough money to pay for life and treatment.
My body was tired from chemotherapy.
My mind was tired from fear and medical information.
My schedule was tired from appointments.
Normal responsibilities continued anyway.
I Had a Port Placed
On October 19, 2020, a port was placed so chemotherapy and other treatments could be delivered without repeatedly using the veins in my arms.
A port can make long-term treatment more manageable.
Mine also created a painful complication.
By November 4, the port was pressing against or irritating a nerve.
I went to radiology, where a nurse repositioned it.
The movement was extremely painful.
Even helpful medical devices can create problems.
The patient may feel grateful to have the port and still hate what it is doing to her body.
The Back Surgery Developed a Seroma
On November 21, 2020, I went to the emergency room because the surgical area on my back had developed a seroma.
A seroma is a collection of fluid that can form after surgery.
The wound had to be opened enough to drain and then packed or wicked so it could heal from the inside.
Wound packing is not a small inconvenience.
It requires repeated care.
It can hurt.
It can interfere with movement, sleep, bathing, clothing, and daily life.
I was already receiving chemotherapy.
Now I also had a wound that needed regular attention.
Cancer Treatment Was Not One Problem at a Time
Before cancer, I imagined medical treatment as a sequence.
A person has surgery.
She recovers.
Then she starts chemotherapy.
Then she manages the side effects.
My experience was not that orderly.
I was recovering from pelvic surgery.
I had another surgery on my back.
I had a port placed.
The port irritated a nerve.
The back wound developed a seroma.
I was receiving chemotherapy.
I was working.
I was managing insurance and appointments.
Several problems existed at the same time.
That is part of what makes the beginning of cancer so overwhelming.
There is no space between the emergencies.
Food Became Difficult
Doxorubicin changed the way food tasted.
Foods I had enjoyed could taste unpleasant, metallic, bitter, or simply wrong.
I did not always feel like eating.
My body still needed nutrition.
It needed calories and protein to heal.
It needed iron and other nutrients to make blood cells and support treatment.
It needed energy to fight infection and recover from chemotherapy.
Eating stopped being only about hunger or enjoyment.
Sometimes eating became another treatment task.
I Ate According to What My Body Needed
My primary-care doctor monitored my iron and other health measures.
When my bloodwork showed that I was becoming deficient, I tried to eat foods that helped replace what my body was losing.
I did not treat food as a cure for cancer.
I used it to support my body while medical treatment fought the disease.
I kept homemade high-iron trail mix around the house.
Instead of forcing myself to eat a large meal, I could grab a handful several times during the day.
Small amounts were easier to manage.
They helped me continue eating when food had lost much of its appeal.
Protein Shakes Did Not Work for Me
People often recommend protein shakes to patients undergoing chemotherapy.
At the time, I did not like them.
The taste and texture were not something I could tolerate easily.
Today, there are more choices and better-tasting products, but every patient is different.
What sounds simple to someone else may be impossible for a person whose taste, stomach, blood sugar, or appetite has changed.
I had to find foods I could actually consume.
A perfect nutrition plan that remains untouched on the counter does not help.
My Primary-Care Doctor Still Mattered
I thought of my medical roles clearly.
I went to the cancer doctor for all things cancer.
I went to my primary-care doctor for all things health and medical.
The cancer center was focused on surgery, chemotherapy, scans, blood counts, and cancer response.
My primary-care doctor continued watching my asthma, nutrition, infections, iron, and overall health.
Cancer did not make every other condition disappear.
If anything, cancer treatment made ordinary health problems more dangerous.
A False-Positive TB Test Led to a Pneumonia Diagnosis
Near the end of December 2020, my son was starting a job at a restaurant.
He received a positive tuberculosis screening test and needed a chest X-ray.
His X-ray was clear, and the screening result was ultimately considered a false positive.
Because we lived together and I was receiving chemotherapy, I became concerned about possible exposure.
I had already completed my chemotherapy for that three-week cycle.
It was December 31, the final day of the insurance year.
I had already met my out-of-pocket maximum, and I knew my high deductible would begin again the next day.
I went to my primary-care doctor and asked whether I could also receive a chest X-ray.
She agreed.
I Did Not Have Tuberculosis
My X-ray did not show TB.
It showed pneumonia.
I had asthma, so I had not recognized that my breathing symptoms were something different.
I do not know exactly how long I had pneumonia.
Fortunately, it was mild enough to be treated at home with antibiotics.
I was not hospitalized.
Some chemotherapy treatments lower infection-fighting white blood cells and can make infections more dangerous, particularly during periods when neutrophil levels are low. Patients receiving chemotherapy are advised to report signs of infection promptly because infections can sometimes become serious quickly.
I was grateful the pneumonia had been found before it became worse.
I Was Grateful for an Unusual Chain of Events
My son’s positive TB screening created worry.
His chest X-ray was clean.
My own request for an X-ray uncovered something neither of us expected.
I was grateful his result was a false alarm.
I was grateful my doctor agreed to my unusual request.
I was grateful the pneumonia was mild.
I was grateful we found it before the insurance year restarted.
Sometimes one strange event leads to the test that reveals a completely different problem.
I Had Received the Pneumonia Shot
I had previously received what I called the pneumonia shot, more precisely known as a pneumococcal vaccine.
Pneumococcal vaccines protect against certain infections caused by pneumococcal bacteria. They do not prevent every possible cause of pneumonia.
I cannot prove what organism caused my pneumonia or whether the vaccine was the reason my case remained mild.
I can say I was glad I had received it.
My doctor reminded me that vaccines help prepare the body to recognize and fight particular germs.
During chemotherapy, I was grateful for every reasonable form of protection available to me.
I Made It Through the Final Chemotherapy Treatment
My doxorubicin treatment continued through January 28, 2021.
Reaching the last treatment did not mean I immediately felt normal.
It meant I had completed one important part of the plan.
My body still had to recover.
My blood still needed monitoring.
My heart needed attention.
My cancer still needed surveillance.
Long-term treatment decisions still had to be made.
The last infusion was not the end of the journey.
It was the end of one section.
Doxorubicin Brought Heart Concerns
Doxorubicin can affect the heart.
Certain cancer treatments, including anthracycline chemotherapy such as doxorubicin, can damage the cardiovascular system and may contribute to problems such as reduced heart function, abnormal rhythms, high blood pressure, or heart failure.
After chemotherapy, I developed heart concerns that required further evaluation.
In April 2021, I underwent a stress test and cardiac catheterization.
My recorded ejection fraction was 57 percent, with a reported partial reduction involving the anterior and inferior segments.
I am careful not to interpret the cardiology report beyond what my doctors told me.
The important point is that finishing chemotherapy created a need for continuing cardiac care.
Treatment Created More Doctors
Before cancer, I did not imagine that one diagnosis could create an entire medical network.
I needed:
Gynecologic oncology
Medical oncology
Surgery
Radiology
Pathology
Primary care
Cardiology
Laboratory services
Pharmacy
Wound care
Imaging
Genetic and tumor testing
Each specialist handled a different part.
I had to make sure the pieces connected.
Cancer care requires the patient to become a coordinator at the same time she is physically and emotionally exhausted.
Hormone Maintenance Began With Letrozole
My tumor was estrogen-receptor and progesterone-receptor positive.
That finding supported a discussion about hormone-based maintenance treatment.
From approximately February through April 2021, I took letrozole.
Letrozole is an aromatase inhibitor. It lowers estrogen production in the body and is commonly used in hormone-sensitive cancers, although treatment decisions for rare uterine leiomyosarcoma must be individualized.
For me, letrozole caused significant side effects.
I experienced severe muscle cramps and pain in both lower extremities.
The pain affected my ability to function.
A Maintenance Medicine Still Has to Be Livable
The goal of maintenance treatment is not only to prescribe a medicine.
The patient must be able to remain on it.
If side effects become unbearable, the treatment may need to be adjusted, changed, paused, or reconsidered by the medical team.
I did not stop believing in hormone treatment.
I needed a different medicine.
In May 2021, I changed from letrozole to exemestane.
I have remained on exemestane as part of my maintenance plan.
It has also caused muscle and joint problems, but the experience has been different enough that I have been able to continue with monitoring and support.
Bone Health Had to Be Measured
Before beginning aromatase-inhibitor treatment, my doctors obtained a bone-density test as a starting measurement.
That baseline mattered because lowering estrogen can affect bone strength over time.
The scan gave my doctors something to compare against later.
This was another example of how one cancer treatment created the need for another type of monitoring.
My cancer was being treated.
My bones also had to be protected.
My First Year Was Not One Straight Victory
Looking back, it would be easy to summarize that year in one sentence:
I was diagnosed, had surgery, completed chemotherapy, and began maintenance treatment.
That sentence would be true.
It would also leave out most of the experience.
The first year included:
Learning that the presumed fibroid had been cancer
Being diagnosed with metastatic uterine leiomyosarcoma
Having two very large pelvic tumors removed
Having a metastatic back mass removed
Receiving tumor profiling results
Starting doxorubicin almost immediately after surgery
Having a port placed
Experiencing severe port-related nerve pain
Developing a postsurgical seroma
Requiring wound packing
Continuing to work
Losing normal taste
Eating despite not wanting food
Developing nutritional deficiencies
Discovering pneumonia by accident
Taking antibiotics during chemotherapy
Completing doxorubicin
Undergoing cardiac testing
Trying letrozole
Changing to exemestane
Beginning long-term surveillance
That was the first year.
I Could Have Died More Than Once
When I later held my purple one-year survival party, I was not celebrating an abstract date.
I understood that I could have died during major surgery.
I could have had a dangerous reaction during the first chemotherapy treatment.
The pneumonia could have become more severe.
The wound complication could have become infected.
The cancer could have continued growing despite treatment.
Several moments could have changed the outcome.
I had made it through all of them.
Survival Required More Than Being Positive
People often tell cancer patients to remain positive.
Hope mattered to me.
Faith mattered.
Love mattered.
Positive thinking did not remove the tumors.
It did not administer chemotherapy.
It did not pack the wound.
It did not diagnose pneumonia.
It did not check my heart.
Survival required medical treatment, careful monitoring, family help, primary care, insurance knowledge, transportation, nutrition, work accommodations, and the willingness to keep attending the next appointment.
I did not survive because I smiled enough.
I survived through a combination of treatment, care, support, persistence, and things no one can completely explain.
I Learned to Live in Three-Week Sections
Chemotherapy changed how I viewed time.
Instead of planning far into the future, I began thinking in treatment cycles.
When was the next infusion?
When would my blood counts fall?
When might I feel the worst?
When would I need laboratory work?
When could I work?
When could I eat?
When would I have enough energy to do something with my family?
A three-week cycle became its own small life.
Then I started again.
My Family Helped Me Through the First Year
All four of my children were still part of my life during that first year.
My youngest son lived at home and helped with daily needs.
My other sons helped him when they could.
My daughter called from another state and did yoga stretches with me.
My oldest son’s wife helped me understand ordinary medications.
Friends shared their own cancer experiences so I would know what to research and what might happen.
My friend Glenda provided hands-on care after surgery.
Friends, church members, and coworkers brought meals.
Coworkers collected money for wigs and hats.
My grandchildren found their own ways to show love.
I did not make it through that year alone.
I Also Learned That Help Changes
The support available during the first crisis does not always remain for the entire journey.
At diagnosis, people call.
After surgery, they bring meals.
During chemotherapy, they ask for updates.
As the months and years pass, many people return to their usual lives.
The patient may continue living with side effects, scans, medicines, fear, and chronic illness.
The first year taught me to appreciate help when it came.
Later years taught me that support can change or disappear.
Cancer Made Me Grieve My Old Life
My first year required me to grieve more than health.
I grieved the body I had before surgery and chemotherapy.
I grieved normal taste.
I grieved energy.
I grieved privacy.
I grieved a calendar that did not revolve around doctors.
I grieved the assumption that I had plenty of time.
The person I had been before September 2020 did not return unchanged.
Cancer Also Made Love Easier to See
Fear and grief were everywhere.
Love was there too.
Love looked like a friend helping me bathe and dress.
It looked like a child calling every day.
It looked like grandchildren shaving their heads.
It looked like meals arriving at my door.
It looked like coworkers buying hats and wigs.
It looked like my son being nearby.
It looked like someone taking me kayaking during chemotherapy so I could remember that the world still contained water, trees, sunlight, and ordinary beauty.
Cancer took away the idea that time was guaranteed.
It also made me pay closer attention to what people did with the time we had.
I Stopped Waiting for Life to Become Perfect
There was no perfect moment coming.
There would always be another appointment.
There would always be another test.
There would always be another bill, side effect, or worry.
If I waited for cancer to disappear completely before living, I might spend the rest of my life waiting.
I began taking joy where I could find it.
A small walk counted.
Sitting outside counted.
Cooking counted.
A call from my daughter counted.
Time with my grandchildren counted.
Kayaking slowly during chemotherapy counted.
Life did not have to be easy to contain something good.
What I Wish Someone Had Told Me
I wish someone had told me that cancer treatment would not happen one problem at a time.
I wish I had known that surgery complications, chemotherapy, work, insurance, nutrition, and ordinary illness could all overlap.
I wish someone had explained that finishing chemotherapy would not mean finishing medical care.
I wish I had known how much my primary-care doctor would still matter.
I wish someone had warned me that a familiar asthma symptom could hide pneumonia.
I wish I had understood that eating might become work.
I wish someone had explained that maintenance medicines could create their own difficult side effects.
I wish someone had told me that survival would involve learning an entirely new medical language while exhausted and afraid.
Most of all, I wish someone had said:
“Do not try to understand the entire journey today. Get through the next decision, the next treatment, and the next day.”
Hope for Today
My first year with Stage IV uterine leiomyosarcoma was not graceful.
It was frightening, painful, expensive, exhausting, and confusing.
I had two huge pelvic tumors removed.
I had a metastatic mass removed from my back.
I began doxorubicin two days after that surgery.
I had a port press against a nerve.
I developed a seroma that required wound packing.
Food tasted terrible.
My blood showed deficiencies.
I developed pneumonia without realizing it.
I continued working and made up hours on weekends.
I underwent heart testing after chemotherapy.
I tried one maintenance medicine and had to change to another.
I survived the year.
That does not mean I handled every moment perfectly.
It means I kept moving through the moments.
Sometimes I moved with strength.
Sometimes I moved with fear.
Sometimes I needed someone to help me.
Sometimes moving forward meant eating a handful of trail mix.
Sometimes it meant calling the doctor.
Sometimes it meant showing up for another infusion.
Sometimes it meant sitting near the water and remembering that I was more than a cancer patient.
I could not control everything happening inside my body.
I could participate in my care.
I could ask questions.
I could accept help.
I could choose the next step.
That was how I survived the first year.
One appointment.
One treatment.
One problem.
One meal.
One day at a time.
Frequently Asked Questions
When was I diagnosed with metastatic uterine leiomyosarcoma?
A biopsy confirmed metastatic leiomyosarcoma on September 9, 2020.
What was removed during surgery?
On September 23, 2020, surgeons removed pelvic masses measuring approximately thirteen and twelve centimeters, along with additional masses. A separate metastatic mass near my back was removed on October 13.
What chemotherapy did I receive?
I received doxorubicin from approximately October 15, 2020, through January 28, 2021.
Did I continue working during chemotherapy?
Yes. I used flexible scheduling and made up missed work hours during evenings and weekends.
Was I hospitalized with pneumonia?
No. The pneumonia was mild enough to be treated at home with antibiotics.
How was the pneumonia found?
My son received a positive TB screening for a new job. His chest X-ray was clear, but his result prompted me to request an X-ray because I was receiving chemotherapy. My X-ray showed pneumonia.
Why did I not recognize the pneumonia?
I already had asthma, and the early symptoms did not feel clearly different from breathing issues I had experienced before.
Did I have heart problems after chemotherapy?
I developed concerns that required cardiology evaluation, including a stress test and cardiac catheterization. My reported ejection fraction was 57 percent.
Why did I begin hormone maintenance treatment?
My tumor tested positive for estrogen and progesterone receptors, which supported discussing hormone-based treatment as part of my individualized plan.
Why did I stop letrozole?
It caused significant muscle cramps and pain in both lower extremities.
What medicine replaced letrozole?
I changed to exemestane in May 2021 and have continued it as part of my maintenance plan.
Was the ALK fusion used during the first year?
The ALK fusion was identified through tumor profiling in 2020, but it became especially important later when I advocated for targeted treatment with lorlatinib.
Support on Your Journey
The beginning of cancer can feel as though a person has been dropped into a new country without a map.
Surviving Life Lessons Community Groups are being formed so patients, survivors, and caregivers can discuss diagnosis, surgery, chemotherapy, side effects, primary care, nutrition, work, insurance, and the emotional shock of the first year.
You do not have to understand the whole cancer journey today.
You only need enough information and support to take the next step.
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References
(references should have the author, article name and website url. Psychology Today. "Life without anxiety." www.phsycologytoday.com
**National Cancer Institute. “Uterine Sarcoma Treatment.”**
**National Cancer Institute. “Trabectedin and Doxorubicin Effective for Leiomyosarcoma.”**
**National Cancer Institute. “Infection and Neutropenia During Cancer Treatment.”**
**National Cancer Institute. “Investigating the Cardiac Side Effects of Cancer Treatments.”**
**National Cancer Institute. “Experimental Drug Prevents Doxorubicin From Harming the Heart.”**
**U.S. Food and Drug Administration. “Perform Only Contained Morcellation When Laparoscopic Power Morcellation Is Appropriate.”**
**U.S. Food and Drug Administration. “Laparoscopic Power Morcellators.”**
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