Five Years After Stage IV Cancer: A Milestone I Was Grateful to Reach but Never Took for Granted
Five Years After Stage IV Cancer: A Milestone I Was Grateful to Reach but Never Took for Granted
On September 9, 2020, a biopsy confirmed that I had metastatic leiomyosarcoma.
By September 2025, five years had passed since the day cancer officially received its name.
Five years.
Those words once felt almost impossible to imagine.
When I first heard **Stage IV uterine leiomyosarcoma**, I did not know whether I would reach the next year. I did not know whether I would survive surgery, tolerate chemotherapy, respond to treatment, or see my grandchildren grow.
I did not know whether I would ever be able to say:
“It has been five years.”
Five Years Is More Than a Number to Me
Cancer statistics often use periods such as one year, two years, or five years to describe survival among groups of patients.
That can make five years sound like a finish line.
It is not a personal expiration date, and it is not a medical guarantee.
The National Cancer Institute explains that survival statistics describe groups of people and cannot predict exactly what will happen to one individual. Five years is commonly used as a statistical period, but the meaning of that number depends on the cancer, stage, treatments, and person.
For me, five years was not simply a statistic.
It represented every appointment, treatment, complication, ordinary day, and difficult decision that happened between September 2020 and September 2025.
I Did Not Reach Five Years in One Leap
Five years sounds large when viewed from the beginning.
I did not survive all five years at once.
I reached the first surgery.
Then the next surgery.
I reached the first day of doxorubicin.
Then I reached the last infusion.
I recovered from pneumonia.
I managed a painful port complication.
I treated a surgical wound and seroma.
I tried letrozole and changed to exemestane.
I continued working.
I went through heart testing.
I managed chronic illness.
I watched scans, blood tests, and symptoms.
I faced a suspicious spinal lesion and an inconclusive biopsy.
I underwent focused radiation.
I advocated for lorlatinib.
Five years was built from one next step at a time.
The First Year Was About Immediate Survival
During the first year, most of my energy went toward staying alive and completing treatment.
I did not have the luxury of understanding the whole journey.
There were appointments to attend, records to gather, medicines to take, and symptoms to report.
The decisions came quickly.
I was still trying to understand how a presumed fibroid became Stage IV uterine leiomyosarcoma.
The first year was physical, emotional, financial, and administrative survival.
Later years created different challenges.
The Medical Work Did Not End
I reached five years, but cancer did not leave my calendar.
I still had:
* Oncology appointments
* Imaging
* Signatera testing
* Bloodwork
* EKGs
* Echocardiograms
* Bone-density monitoring
* Port care
* Medication reviews
* Diabetes appointments
* Eye and foot examinations
* Primary-care appointments
* Specialist visits for treatment-related conditions
The National Cancer Institute describes cancer survivorship as including follow-up care, possible late effects, fear of recurrence, quality of life, and monitoring for ongoing health needs.
Five years did not mean the medical work was complete.
It meant I had lived long enough to see how much long-term work survival can require.
NED Did Not Mean Cured
I have experienced periods of no evidence of disease.
I am deeply grateful for them.
NED means that the testing being used does not currently show detectable evidence of cancer.
It does not mean that doctors can promise there are no cancer cells anywhere in the body.
It does not mean monitoring should stop.
It does not mean every future test will remain clear.
I celebrate NED without changing it into a guarantee it was never meant to provide.
My Cancer Had Already Returned Once
My cancer journey began with tissue that had originally been considered benign.
Approximately eighteen months after the hysterectomy, masses were found.
By the time the biopsy was performed, the cancer had spread.
That history changed the way I understood reassurance.
I had already lived through the difference between what doctors believed at one time and what later information revealed.
I could be grateful for good results while remaining attentive to my body and follow-up plan.
Five Years Included Another Serious Cancer Scare
The road to five years was not smooth.
In 2024, I developed severe pain in my lower back and upper buttock. The pain traveled down my leg and into my foot.
Imaging showed a concerning lesion at the T11 vertebra.
My Signatera result became positive after previously being negative or nearly undetectable.
A bone scan showed increased activity.
The biopsy was inconclusive because of the location.
My medical team and I had to decide whether to continue waiting or treat the suspicious area based on the total pattern.
I Chose Focused Radiation
I received five strong, focused radiation treatments from December 24, 2024, through January 16, 2025.
That was close to my five-year milestone.
I was not approaching five years as someone who had forgotten what cancer could do.
I was approaching it after another period of uncertainty, advocacy, testing, and treatment.
That experience made the milestone feel even more significant.
I had not simply waited for five years to pass.
I had continued making difficult decisions throughout them.
Five Years Did Not Restore My Old Body
I survived.
My body still carried the cost.
Treatment contributed to long-term problems involving my muscles, joints, nerves, blood sugar, cholesterol, weight, heart monitoring, bone health, fatigue, and mobility.
I learned to use a walker, rollator, or scooter when needed.
I learned to plan around pain and energy.
I learned that a survivor can be alive, grateful, and physically limited at the same time.
Survival does not erase disability.
I Had More Than Twenty-Three Medical Professionals
By the time I reached five years, my health involved more than twenty-three doctors and other medical professionals.
Some managed the cancer.
Others managed the consequences of cancer treatment or conditions that became more difficult during treatment.
Survivorship care may require attention to late and long-term effects, chronic health conditions, emotional health, and coordination among oncology and primary-care professionals.
My body could not be divided neatly between cancer care and regular care.
Everything had to work together.
Five Years Was Not a Return to Before
There was no return to September 8, 2020.
I could not go back to the person who did not know what uterine leiomyosarcoma was.
I could not return to a body that had not undergone major surgery, chemotherapy, radiation, and years of maintenance medicine.
I could not forget the friends who died.
I could not unlearn the fear of an abnormal scan or positive blood result.
Five years did not restore the old life.
It gave me five years of a changed life.
The Changed Life Still Contained Joy
Those five years were not only medical.
I bought my own home.
I threw myself a purple one-year survival party.
I cooked for people I loved.
I watched my grandchildren grow.
I walked with my grandson.
My grandsons shaved their heads when I shaved mine.
I traveled.
I visited Ireland.
I wrote and published books.
I created Surviving Life Lessons.
I learned that a medically complicated life could still contain creativity, purpose, laughter, and adventure.
I Had Once Wondered Whether I Would See These Years
At diagnosis, the future became uncertain.
Every ordinary event took on new meaning.
A birthday was not simply another birthday.
A holiday was another holiday I was present to experience.
A new grandchild memory was something I had once feared I might miss.
Finishing a book meant I had lived long enough to complete another idea.
Reaching five years allowed me to look back at experiences that did not exist when I was first diagnosed.
I Did Not Want to Waste the Milestone
Reaching five years gave me a reason to pause.
I did not want to move through it as though it were an ordinary workday.
At the same time, I did not need a perfect celebration.
The importance came from recognizing what the years contained.
There had been pain, medical uncertainty, financial pressure, broken relationships, chronic illness, and grief.
There had also been love, help, travel, writing, family memories, and moments I never expected to have.
Gratitude Was Complicated
I was grateful to be alive.
That sounds simple.
It was not always simple.
Gratitude existed beside pain.
I could be grateful for survival and angry about what treatment did to my body.
I could be grateful for the people who helped and grieve the people who left.
I could celebrate my own milestone and miss the cancer friends who did not reach theirs.
I did not need to choose one emotion and reject the others.
Five Years Did Not Erase Survivor’s Guilt
I had known women who faced uterine leiomyosarcoma and did not survive.
Tina, Sheila, and Denise shared knowledge, support, and understanding with me.
They knew what it was like to live with a rare cancer that many people had never heard of.
When they died, their absence remained.
Reaching five years reminded me that they were not reaching the milestone beside me.
I had already learned that their deaths were not caused by a lack of courage and my survival was not proof that I fought harder.
Cancer outcomes are not rewards for effort.
I Could Honor Them Without Punishing Myself
I wanted their lives to continue mattering.
I could honor what they taught me.
I could continue raising awareness.
I could support other patients.
I could tell the truth about this cancer.
I could not turn every surviving day into a debt I had to repay.
Five years gave me more time.
It did not require me to spend every minute proving I deserved it.
My Definition of Survivor Changed
Some people define survivorship as beginning when treatment ends.
For me, treatment never completely ended.
I moved from chemotherapy to hormone maintenance.
Later, I added an individualized targeted medicine.
I continued surveillance and management of side effects.
The National Cancer Institute recognizes that people with advanced or metastatic cancer may live for many years while going on and off treatment or remaining on long-term treatment.
I was both a patient and a survivor.
The two identities existed together.
Long-Term Survival Can Be Invisible
A newly diagnosed patient may receive attention and immediate support.
Five years later, other people may believe the cancer story is over.
They may see that I am alive and assume I have returned to normal.
They do not always see the medicines, pain, medical calls, laboratory testing, side effects, and fear that continue.
Long-term survivorship can look ordinary from the outside.
Inside, it may still require daily management.
The Anniversary Could Trigger Fear Too
A diagnosis anniversary can bring pride and gratitude.
It can also return the patient to the day everything changed.
I could remember the biopsy.
I could remember the word metastatic.
I could remember telling my children.
I could remember not knowing whether treatment would work.
NCI notes that anniversaries, follow-up visits, symptoms, and other reminders can cause fear of recurrence even years after treatment.
A milestone can feel joyful and frightening on the same day.
I Did Not Want Fear to Own the Date
Cancer had already taken control of enough dates.
I did not want September to belong only to diagnosis.
I wanted the milestone to represent everything that came afterward.
The date could remind me of cancer.
It could also remind me that I continued living.
I could remember the fear without allowing it to erase the survival.
Five Years Made Me Look at My Priorities
The milestone caused me to ask:
* What do I want the next years to contain?
* Which relationships bring peace?
* What work matters most?
* What am I still postponing?
* What can I simplify?
* What stress no longer deserves my energy?
* What does my body need?
* How do I continue raising awareness without exhausting myself?
* What memories do I still want to create?
Five years was not only a look backward.
It became a place to consider what came next.
I Wanted to Preserve My Mental Peace
By that point, I understood how much stress my life contained.
There was work stress, family stress, medical stress, financial stress, household stress, and unexpected problems.
I became more willing to set boundaries.
I cut off toxic relationships.
I protected empty days.
I organized appointments by location.
I prepared meals ahead.
I paid for practical help when I could.
Survival made peace feel less optional.
I Wanted to Keep Living, Not Merely Remain Alive
Remaining alive is the foundation.
Living adds meaning.
Living may include:
* Time with family
* Writing
* Travel
* Faith
* Purpose
* Rest
* Cooking
* Helping others
* Learning
* Celebrating
* Trying something new
* Protecting peace
Five years made me grateful for medical survival.
It also made me ask whether I was using the life treatment helped preserve.
I Still Had Plans
Cancer did not remove my ability to plan.
I continued thinking about retirement.
I developed books.
I built my website.
I planned articles and resources.
I considered travel.
I managed my home.
Planning meant I still believed in a future.
The plans remained flexible because cancer taught me that life can change quickly.
I Did Not Need to Pretend the Future Was Guaranteed
Hope does not require certainty.
I can plan another book without knowing exactly what my next scan will show.
I can think about retirement while understanding my health may affect the timeline.
I can arrange a trip while purchasing travel protection and planning around mobility.
I can expect good things without claiming they are promised.
That is how hope changed after cancer.
The Medical Team Still Needed to Watch for Late Effects
Cancer treatment can cause problems that appear or continue months or years later.
My follow-up care was not only about searching for cancer.
It also involved monitoring the effects of chemotherapy, hormone treatment, radiation, and targeted therapy.
A follow-up or survivorship care plan may include a treatment summary, ongoing testing, possible late effects, and which healthcare professionals are responsible for different parts of care.
Reaching five years increased the importance of long-term care.
It did not remove it.
My Primary-Care Doctor Remained Important
Oncology followed the cancer.
Primary care helped manage the rest of me.
At five years, the rest of me had become complicated.
I still needed vaccinations, routine screening, diabetes care, thyroid care, asthma care, blood-pressure monitoring, cholesterol management, and treatment for ordinary illnesses.
Cancer history affects care.
It does not replace all other care.
Five Years Did Not Mean Every Symptom Was Cancer
After living with metastatic cancer, it is easy to fear that every new symptom represents recurrence.
Over five years, I also learned that not every lump, pain, or abnormal result was cancer.
A painful upper-buttock mass was removed and found to be a benign lipoma.
That benign mass still caused severe nerve pain and needed treatment.
The goal was not to label everything as cancer.
The goal was to take changes seriously and investigate them appropriately.
Five Years Strengthened My Trust in Myself
I learned to listen to my body.
I learned to keep asking questions when something felt wrong.
I learned that I could change doctors.
I learned that an inconclusive answer was not always the end of the investigation.
I learned to gather records and understand reports.
I learned to bring research into respectful medical conversations.
I did not become my own oncologist.
I became a more informed participant in my care.
I Also Learned That I Could Be Wrong
Advocacy does not mean assuming every fear is correct.
A lump can be benign.
A scan can show inflammation.
A symptom can come from medication, diabetes, arthritis, or another condition.
Strong advocacy includes being willing to hear the evidence.
It means asking doctors to take the concern seriously and then working through the possibilities together.
Five Years Changed My Relationship With Strength
At diagnosis, strength looked like making the next appointment.
During chemotherapy, it looked like showing up for treatment and continuing to work.
After surgery, it looked like accepting help.
During the spinal episode, it looked like calling repeatedly, changing doctors, and pursuing answers.
Later, strength sometimes looked like doing nothing for a day.
It looked like setting a boundary.
It looked like admitting I was tired.
My definition of strength became wider.
Strength Was Never the Whole Explanation
I am proud of how I advocated for myself.
I am proud of the research I completed and the questions I asked.
I am proud that I continued through difficult treatment.
I also understand that effort alone does not control cancer.
I received surgeries, chemotherapy, radiation, hormone therapy, targeted therapy, surveillance, and care from many professionals.
I had support.
My tumor had certain treatment targets.
My body responded in ways that could not be guaranteed.
I am alive through a combination of medicine, persistence, support, faith, biology, and circumstances I cannot fully explain.
Five Years Was a Gift, Not a Promise
The milestone gave me something real.
It gave me the five years I had already lived.
No future result could take away the fact that those years happened.
I had been present for them.
I had used them.
I had survived their hardest days.
I had also filled parts of them with meaning.
The milestone could be celebrated without pretending it promised another five.
I Wanted Newly Diagnosed Patients to Know This
A Stage IV diagnosis can make five years feel unreachable.
I cannot promise another patient my outcome.
I cannot say that one treatment plan, diet, attitude, or advocacy strategy will produce the same result.
I can say that a stage is not an exact personal expiration date.
Treatments continue changing.
Tumors differ.
Patients differ.
Some people live with advanced cancer for years while receiving ongoing treatment and managing the disease as a long-term condition.
There can be life between diagnosis and whatever comes later.
What Five Years Did Not Mean
Reaching five years did not mean:
* I was guaranteed to be cured
* Surveillance could stop
* My treatment side effects disappeared
* My chronic illnesses went away
* I no longer feared recurrence
* Every relationship healed
* Medical costs ended
* I had to feel grateful every minute
* My cancer friends were forgotten
* I no longer needed help
* I returned to my old body
The milestone was important without carrying meanings that did not belong to it.
What Five Years Did Mean
It meant:
* I survived five years after a Stage IV diagnosis
* I lived through major surgery and chemotherapy
* I managed complications
* I reached periods of NED
* I treated a concerning spinal lesion
* I remained involved in my care
* I created memories
* I watched my grandchildren grow
* I traveled
* I published books
* I created Surviving Life Lessons
* I learned to protect my peace
* I became more intentional about time
* I was still here
That was enough reason to pause.
Questions to Ask at a Long-Term Follow-Up Visit
* What does my current disease status mean?
* What surveillance do I still need?
* How often should imaging be performed?
* Which blood tests remain important?
* What symptoms should I report immediately?
* What late effects should we monitor?
* Who is responsible for each part of my care?
* How long should I continue maintenance medicine?
* How are my heart and bone health being monitored?
* Are my diabetes and cholesterol affected by treatment?
* Do I need a written survivorship or follow-up care plan?
* Which routine screenings should continue?
* What emotional support is available?
* What information should my primary-care doctor have?
The answers should be individualized.
A five-year anniversary does not create the same plan for every cancer survivor.
Ways to Recognize a Cancer Milestone
A milestone does not require a large party.
A person might:
* Have a meal with loved ones
* Take a trip
* Wear the cancer color
* Write a letter to her earlier self
* Make a photo album
* Donate or volunteer
* Plant something
* Create art
* Rest
* Attend church
* Share the story
* Keep the day private
* Begin a new project
* Do something ordinary with gratitude
There is no correct way to mark survival.
The person who lived the years can decide what the date means.
What Loved Ones Should Understand
A five-year anniversary may not be a simple celebration.
The survivor may feel:
* Relief
* Gratitude
* Fear
* Grief
* Anger
* Pride
* Exhaustion
* Survivor’s guilt
* Hope
* Uncertainty
Loved ones do not need to correct those emotions.
They can ask:
“What does this milestone feel like to you?”
Then they can listen.
What I Wish Someone Had Told Me
I wish someone had told me that reaching five years would not feel like crossing a clear finish line.
I wish I had known that NED and cured were not the same thing.
I wish someone had explained that long-term survival could include ongoing treatment, disability, chronic illness, and many doctors.
I wish I had known that an anniversary could bring gratitude and fear together.
I wish someone had told me that I did not have to perform happiness because I reached a milestone.
I wish I had understood that the years would contain ordinary life, not only medical survival.
I wish someone had told me that I could celebrate myself without disrespecting the friends who died.
Most of all, I wish someone had said:
“Five years is not a promise about the future. It is five years of life that cancer did not prevent you from living.”
Hope for Today
I reached five years after being diagnosed with Stage IV uterine leiomyosarcoma.
There was a time when I did not know whether that would happen.
I reached it through surgeries, doxorubicin, pneumonia, hormone therapy, radiation, targeted treatment, scans, blood tests, side effects, fear, advocacy, and more medical appointments than I could count.
I reached it with help.
I reached it while working.
I reached it after losing people.
I reached it with a body that no longer moved or felt the way it once did.
I also reached it with books, travel, grandchildren, a home, a purple party, faith, laughter, cooking, and Surviving Life Lessons.
Five years did not erase cancer.
Cancer did not erase those five years.
I do not know what every future test will show.
I know that I was here for these years.
I lived them.
I learned from them.
I created inside them.
I loved people during them.
I grieved during them.
I kept moving.
That is what my five-year milestone means to me.
Frequently Asked Questions
When did I reach five years after diagnosis?
My metastatic leiomyosarcoma biopsy was confirmed on September 9, 2020. Five years later was September 9, 2025.
Does reaching five years mean I am cured?
No. Five years is an important personal and statistical milestone, but it does not create a guarantee that cancer will never recur.
What does NED mean?
NED means no evidence of disease was detected through the testing being used at that time. It is not the same as a promise that no cancer cells exist anywhere.
Did my cancer treatment end before the five-year mark?
No. I continued maintenance treatment, surveillance, management of side effects, and later received focused radiation and lorlatinib.
Why did the milestone feel complicated?
I felt grateful to be alive while also grieving friends, managing chronic illness, fearing recurrence, and living with treatment-related limitations.
Do people with advanced cancer sometimes live for many years?
Yes. NCI recognizes that a growing number of people live with advanced or metastatic cancer for long periods while receiving ongoing or intermittent treatment.
Why do I still need follow-up care?
Follow-up care monitors for recurrence, ongoing treatment needs, late effects, chronic health conditions, and quality-of-life concerns.
Can cancer anniversaries trigger fear?
Yes. Diagnosis anniversaries, scans, symptoms, and follow-up appointments may bring back fear even years later.
Did reaching five years remove survivor’s guilt?
No. I still missed the women who had not reached the milestone, but I learned that honoring them did not require me to feel guilty for being alive.
How did I use the five years?
I spent them receiving treatment, managing health, working, writing, traveling, building Surviving Life Lessons, creating memories, and spending time with family.
Support on Your Journey
Cancer milestones can bring celebration, fear, grief, relief, and questions about what comes next.
Surviving Life Lessons Community Groups are being formed so patients, survivors, and caregivers can discuss diagnosis anniversaries, long-term treatment, NED, late effects, fear of recurrence, changing priorities, and the complicated emotions of reaching another year.
Neighbor Chat offers a quieter place to talk when a milestone feels heavier or more complicated than other people expect.
Next Step Coaching can help organize long-term follow-up questions, treatment history, health goals, and the next practical step. It does not replace oncology, primary care, mental-health care, financial planning, or medical case management.
A milestone does not have to promise the future to deserve celebration.
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References
**National Cancer Institute. “Cancer Survivorship.”**
**National Cancer Institute. “Living With Advanced Cancer for a Long Time.”**
**National Cancer Institute. “Life After Cancer Treatment.”**
**National Cancer Institute. “Follow-Up Medical Care.”**
**National Cancer Institute. “Questions to Ask Your Doctor When You Have Finished Treatment.”**
**National Cancer Institute. “Understanding Cancer Prognosis.”**
**National Cancer Institute Dictionary of Cancer Terms. “Survivorship.”**
**National Cancer Institute Dictionary of Cancer Terms. “Follow-Up Care Plan.”**
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**Disclaimer:** This article shares my personal cancer experience and general educational information. It is not medical, oncology, survivorship, mental-health, statistical, or treatment advice. Survival statistics cannot predict an individual outcome. NED does not necessarily mean cured, and follow-up needs vary by cancer, stage, treatment, and personal health. Discuss prognosis, surveillance, maintenance treatment, late effects, and symptoms with qualified healthcare professionals.
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