NED Cancer Survivorship: Life After Cancer Treatment Journey

NED gives me room to plan ahead, but protecting that future still takes surveillance and daily care.

NED Cancer Survivorship: How I Manage Cancer Surveillance and the Future I Still Want to Live

I am currently "no evidence of disease," also called NED, and this is an important part of my NED cancer survivorship journey.

Those words mean more to me than I can explain.

After Stage IV uterine leiomyosarcoma, morcellation, large abdominal tumors, a cancerous mass on my back, spinal involvement, chemotherapy, radiation, and years of maintenance medicine, I am grateful every time current testing does not show active disease.

But NED does not mean I am finished with healthcare or the cancer.

It does not mean my body returned to the condition it was in before cancer.

It does not mean I can ignore new symptoms or stop completing the ordinary preventive care that people need as they age.

My work now is to remain as healthy as possible so I can continue fighting the good fight.

My Daily Goal Is Maintenance

I am no longer living in the earliest crisis of diagnosis.

My days now involve maintenance.

I try to keep my laboratory levels within safer ranges.

I manage blood sugar.

I monitor blood pressure.

I take medicine for cholesterol.

I have my thyroid checked.

I watch the effects of exemestane and lorlatinib.

I attend cancer appointments.

I complete scans.

I track Signatera results.

I report symptoms.

I work with pharmacists.

I go to cardiology, eye care, podiatry, primary care, oncology, and other specialists.

My goal is to keep the rest of my body healthy enough to continue the treatment intended to help hold the cancer back.

NED Is Not the Same as Cured

No evidence of disease means that the tests being used do not currently show detectable cancer.

It does not prove that no cancer cell remains anywhere in the body.

It does not guarantee that cancer will never return.

For someone with a history of metastatic uterine leiomyosarcoma, NED is a present condition rather than a promise about the future.

I celebrate it while continuing surveillance.

Every Day Is a Learning Experience

I continue learning from my body.

I learn which symptoms appear after sitting too long.

I learn how my blood sugar responds to medication changes.

I learn when neuropathy is worsening.

I learn how much activity my knees and muscles can handle.

I learn from my doctors.

I learn from my laboratory reports.

I learn from scans.

I learn which problems require action and which can be watched.

Cancer survivorship has made me a lifelong student of my own health.

I Can Enjoy Life Between Appointments

My calendar is filled with healthcare.

That does not mean every moment belongs to illness.

Between appointments, I write.

I work on Surviving Life Lessons.

I spend time with family.

I see my grandchildren.

I travel when I can.

I plan books, articles, journals, and other resources.

I laugh.

I rest.

I have ordinary days.

Cancer has a place in my life, but I do not want it occupying every room.

A Recent PET Scan Showed Activity in My Sigmoid Colon

During a recent PET scan, an area in my sigmoid colon showed increased activity.

The sigmoid colon is part of the large intestine near the end of the colon.

Because of my cancer history, a new area of PET activity creates immediate concern.

My mind naturally asks:

• Is this another recurrence?

• Is it a new cancer?

• Is it inflammation?

• Is it something benign?

• What test will tell us more?

A PET scan is sensitive to changes in metabolic activity, but increased uptake is not automatically cancer. Imaging findings often require another form of evaluation to determine the cause.

The PET Scan Did Not Give the Final Answer

My doctors recommended a colonoscopy.

During the evaluation, a mass or polyp was identified.

When the medical team performed the procedure to remove and examine the growths, they found several additional polyps.

Pathology showed that they were polyps rather than metastatic uterine leiomyosarcoma.

Some were precancerous.

That was both a relief and another warning.

They were not my rare cancer.

They still needed to be removed.

“Just Polyps” Does Not Mean They Did Not Matter

A precancerous polyp is not colorectal cancer.

It is an abnormal growth that has changes that could potentially develop into cancer over time.

Removing these growths can prevent some colorectal cancers before they begin.

The CDC explains that colorectal cancer often develops from abnormal growths called polyps. Screening can find and remove precancerous polyps before they become cancer.

I was grateful that the pathology did not show another active cancer.

I was also grateful the growths were found before they became something worse.

Having One Cancer Does Not Protect Me From Another

A person who survives one cancer can still develop:

• Ordinary age-related conditions

• Precancerous growths

• A different cancer

• Heart disease

• Diabetes

• Arthritis

• Eye disease

• Kidney problems

• Thyroid changes

• Other unrelated illnesses

Cancer does not create a protective shield against everything else.

My medical team must continue watching for uterine leiomyosarcoma.

I must also continue the routine screenings appropriate for my age, sex, health history, family history, previous results, and treatment exposure.

Cancer Surveillance and Routine Screening Are Different

Cancer surveillance watches for recurrence or progression of a cancer that has already been diagnosed.

Routine screening looks for certain cancers or precancerous changes in people who may not have symptoms.

Those systems may overlap, but they are not identical.

My PET scans and Signatera testing are connected to my uterine leiomyosarcoma history.

My colonoscopy evaluates the colon directly and can identify and remove polyps.

A PET scan does not replace colonoscopy.

A Signatera test based on my uterine leiomyosarcoma does not screen me for every other kind of cancer.

Signatera Looks for My Known Tumor Signal

My Signatera assay was designed from my original tumor.

It looks for selected circulating DNA changes matching that cancer.

It is not a universal blood test that tells doctors whether I have any cancer anywhere in my body.

A negative result does not prove that I have no colon polyp, skin cancer, breast cancer, or any other disease.

It is one additional tool for monitoring the cancer profile it was designed to track. Natera states that ctDNA results provide additional information and that a negative result does not guarantee cancer will never be detected later.

That is why ordinary screening still matters.

Routine Care Can Get Lost During Cancer Treatment

Cancer appointments can take over the calendar.

Patients may spend so much time seeing oncologists that other healthcare is delayed.

A person may think:

“I am already being scanned. Surely they would see anything important.”

That assumption can be dangerous.

Different tests are designed to answer different questions.

A cancer survivor still needs to discuss appropriate care such as:

• Colorectal screening

• Breast screening

• Skin examinations

• Eye examinations

• Dental care

• Bone health

• Vaccinations

• Heart monitoring

• Diabetes care

• Blood-pressure checks

• Cholesterol monitoring

• Other age-based or risk-based care

The exact schedule should be individualized.

Colorectal Screening Can Prevent Cancer

Current United States guidance generally recommends that adults at average risk begin colorectal cancer screening at age forty-five and continue through age seventy-five. Decisions after that age are individualized.

People with previous polyps, family history, inflammatory bowel disease, genetic syndromes, symptoms, or other risks may need earlier or more frequent evaluation.

Colonoscopy can identify polyps, allow them to be removed, and provide tissue for pathology.

Because precancerous polyps were found in my colon, my future colonoscopy schedule will be based on the pathology, number and type of polyps, quality of the examination, and my doctors’ recommendations.

Every Abnormal Result Is Not Another Recurrence

After several cancer recurrences, it is difficult not to expect the worst.

A PET flare in my sigmoid colon sounded frightening.

The mass sounded frightening.

The discovery of additional growths sounded frightening.

Pathology ultimately showed polyps rather than metastatic uterine leiomyosarcoma.

That experience reminded me that abnormal findings can have several explanations.

It also reminded me that they still need to be evaluated.

The correct lesson is not:

“Do not worry because it is probably nothing.”

The better lesson is:

“Do not decide what it is before the proper evaluation is complete.”

Pathology Still Matters

Imaging can identify something suspicious.

Pathology examines tissue.

The final answer may require removing or biopsying the abnormal area and allowing trained professionals to evaluate the cells.

My cancer journey began with a uterine mass believed to be a fibroid.

That history taught me never to treat pathology as an unimportant detail after a procedure.

The tissue diagnosis matters.

My Body Continues Aging

I am living with a rare cancer that often affects women around or after midlife.

At the same time, I am aging like everyone else.

My knees have severe degeneration.

I have diabetes.

I have high blood pressure and high cholesterol.

I have hypothyroidism.

I have asthma.

I have neuropathy.

I have mobility limitations.

I have had precancerous colon polyps.

Some concerns are related to cancer treatment.

Some are connected to family history.

Some are connected to age.

Some may have several causes.

My healthcare cannot be divided into “cancer” and “everything else” as though those two lives never touch.

My Laboratory Results Help Guide Daily Decisions

Laboratory monitoring has become part of how my doctors keep me safe.

Depending on the treatment and condition, they may watch:

• Blood counts

• Blood sugar

• A1C

• Cholesterol

• Triglycerides

• Kidney function

• Liver function

• Thyroid levels

• Iron

• Electrolytes

• Other treatment-related measures

A result outside the desired range does not automatically mean a medical emergency.

It may show that a medication needs adjustment, a side effect needs attention, or another condition requires follow-up.

Keeping copies of trends helps me ask better questions.

Symptoms Still Matter When Scans Look Good

A scan is a picture taken at one point in time.

It cannot replace living inside the body every day.

I still need to report:

• A new lump

• Persistent pain

• Neurological symptoms

• Changes in walking

• Bowel changes

• Unusual bleeding

• Shortness of breath

• Severe fatigue

• Unexplained weight changes

• New voice or swallowing problems

• Vision changes

• Foot injuries

• Other changes from my normal health

Follow-up care for cancer survivors includes reporting physical problems that interfere with daily life, new medicines, emotional concerns, and changes in personal or family medical history.

My Goal Is to Stay Healthy Enough to Continue Treatment

My maintenance medicines are not easy on my body.

Exemestane contributes to severe muscle and joint stiffness.

Lorlatinib has been followed by blood-sugar problems, high cholesterol, weight gain, neuropathy, and other effects.

I work with my doctors to manage those problems because the cancer treatment is part of why I have remained NED.

The question is not only:

“Is the medicine helping control cancer?”

The question is also:

“Can we keep the rest of my body healthy enough for me to continue receiving the benefit?”

My Healthcare Team Has Grown

I now have several cancer-related doctors.

I also have or use:

• Primary care

• Cardiology

• Diabetes care

• Pharmacy monitoring

• Eye care

• Podiatry

• Massage therapy

• Myofascial-release care

• Thyroid monitoring

• Asthma care

• Gastroenterology

• Other specialists as needed

This is not excessive care for the sake of collecting appointments.

Each person handles another part of the body that cancer, treatment, age, or chronic illness has affected.

Someone still needs to help coordinate the whole picture.

My Son Remains Part of the Care Team

My son has lived with me and helped care for me during some of the most difficult periods.

During the severe pain and spinal episode, I needed assistance with showering and mobility.

He needed information that was simple and organized.

Caregivers cannot help well when they do not know:

• Which medicine is taken when

• Which symptom is new

• Which doctor manages which condition

• Which number requires a call

• Where the reports are kept

• What to bring to the hospital

• What questions remain unanswered

That experience influenced the way I created the Ultimate Cancer Guide.

Organizing My Records Gives Me Some Control

Cancer involves uncertainty.

Organization does not eliminate that uncertainty.

It helps me act when something changes.

I can compare:

• Current and previous scans

• Signatera trends

• A1C results

• Medication changes

• New symptoms

• Blood pressure

• Weight

• Appointments

• Pathology

• Procedures

• Questions for the next visit

A patient should not have to remember an entire medical history while frightened, exhausted, or in pain.

Writing it down protects important details.

Remaining NED Requires Work

People sometimes imagine NED as the point when the patient walks away from cancer care.

For me, it means:

• Continuing maintenance medicine

• Completing scans

• Giving blood

• Watching ctDNA results

• Managing side effects

• Attending specialist appointments

• Completing preventive screenings

• Reporting new symptoms

• Adjusting diabetes treatment

• Protecting heart health

• Managing pain and mobility

• Keeping records

• Living with uncertainty

NED is not doing nothing.

It is maintaining everything we have achieved.

The Recent Colon Scare Made Me Think About My Future

Seeing another area flare on a PET scan brought the old fear back.

I have already experienced more than one recurrence.

Each suspicious scan reminds me that my future is not guaranteed.

At the same time, the colon findings turned out to be precancerous polyps rather than metastatic uterine leiomyosarcoma.

That gave me another opportunity to think.

What do I want to do with the time I have?

My Children Are Grown

My children are adults.

The years when every decision had to be built around raising young children are behind me.

I am still a mother and grandmother.

I still care about their lives.

But I am also at a point when I can ask what I want the next part of my own life to contain.

Cancer has made that question more urgent.

Retirement Is Getting Closer

I am approximately two years from the retirement point I have been considering.

That creates both hope and uncertainty.

Work provides:

• Income

• Health benefits

• Structure

• Purpose

• Professional identity

• Social contact

• Financial preparation for retirement

Work also requires energy that I may not always have.

Appointments, pain, diabetes, medication effects, mobility problems, and recovery from procedures compete with the demands of a full-time schedule.

I am no longer deciding only when I am financially allowed to retire.

I am considering what my health will allow and what I want to do with the time available to me.

I Used Short-Term Disability

I went out on short-term disability to give myself time to address several health needs.

I needed to recover from the colon procedure and the removal of the polyps.

I needed to work on diabetes control.

I needed time to manage symptoms and medication changes.

I needed to heal.

Short-term disability became more than time away from work.

It created space to evaluate whether my body could continue carrying the same workload in the same way.

That experience deserves its own article because medical leave involves employment rules, income, paperwork, identity, guilt, and decisions about returning to work.

Medical Leave Is Not a Vacation

Time away from work for illness is often filled with:

• Procedures

• Recovery

• Pharmacy calls

• Doctor visits

• Laboratory tests

• Medication changes

• Side effects

• Insurance paperwork

• Disability forms

• Fatigue

• Pain

• Decisions about the future

A person may be home without receiving rest.

The body may be doing the hardest work it has done in years.

My short-term disability was not an escape from responsibility.

It was part of my treatment and recovery.

Cancer Changed How I Think About Retirement

Before cancer, retirement might have seemed like a financial milestone.

Now it also feels like a health and time decision.

I ask myself:

• How long can I continue working safely?

• What income and benefits would I lose?

• What healthcare coverage will I need?

• How will retirement affect my VA and other care?

• What do I want to accomplish before stopping work?

• How much energy do I want to reserve for family and writing?

• What if the cancer returns?

• What if I remain NED for many more years?

• Am I preparing to live, or only preparing for another crisis?

There may not be one perfect answer.

Planning for the Future Is Not Giving Up

Talking about retirement, disability, or recurrence does not mean I expect to die soon.

Ignoring those subjects would not make me safer.

Planning gives me options.

I want to prepare for the possibility of living many more years.

I also want my affairs, healthcare information, finances, and priorities organized because cancer has taught me that life can change quickly.

Hope and preparation can exist together.

I Want More Than Medical Survival

My goal is not simply to accumulate NED scans while spending every available day in waiting rooms.

I want to:

• Continue writing

• Build Surviving Life Lessons

• Help other patients

• Publish books

• Spend time with family

• Travel

• Enjoy my grandchildren

• Rest without guilt

• Use what I learned

• Decide what matters most

Staying medically stable gives me the chance to do those things.

The appointments support the life.

They are not supposed to become the entire life.

Questions Cancer Survivors Should Ask About Routine Care

• Which screenings do I still need for my age?

• Does my cancer history change the schedule?

• Do my treatments increase other health risks?

• When is my next colon screening?

• Do previous polyps require earlier follow-up?

• What breast screening is appropriate?

• Do I need skin examinations?

• How should my heart be monitored?

• How often should my eyes and feet be checked for diabetes?

• Which vaccines are appropriate with my treatment?

• Who is coordinating preventive care?

• Which symptoms should go to oncology, and which should go to primary care?

Questions to Ask After Precancerous Polyps

• What type of polyps were found?

• How many were removed?

• Were they removed completely?

• Did pathology show dysplasia or another concerning change?

• When should my next colonoscopy occur?

• Does the number or type affect my family members?

• Do I need genetic counseling?

• What symptoms should I report?

• Could any medicine affect future procedures?

• Who will track the follow-up date?

The answers depend on the pathology and the patient’s risk factors.

What I Wish Someone Had Told Me

I wish someone had told me that being NED would still require so much work.

I wish I had understood that PET scans can raise concerns that need another test before anyone knows the answer.

I wish someone had reminded me that my uterine cancer surveillance could not replace ordinary colon screening.

I wish I had known that I could feel both relieved and frightened after precancerous polyps were removed.

I wish more survivors understood that routine care is still important even when oncology appointments dominate the calendar.

Most of all, I wish someone had said:

“Being NED does not mean you stop taking care of your body. It gives you another reason to protect the life you fought to keep.”

Hope for Today

My recent PET scan showed activity in my sigmoid colon.

The colonoscopy and follow-up procedure found several polyps.

Some were precancerous.

They were removed.

They were not another uterine leiomyosarcoma recurrence.

That was good news.

It was also proof that ordinary health maintenance still matters.

I continue taking my cancer medicines.

I continue monitoring my blood.

I work on my diabetes.

I attend my appointments.

I watch my heart, eyes, feet, thyroid, cholesterol, blood pressure, muscles, nerves, and bones.

I try to keep symptoms under control.

I learn from my body.

I learn from my doctors.

Then I try to enjoy my life between the appointments.

I am approximately two years from a possible retirement.

My children are grown.

I have survived several recurrences.

I have work I still want to do.

I have stories I want to tell.

I have people I want to help.

I cannot control how many years remain.

I can participate in how I use them.

NED is not the end of my cancer story.

It is the space in which I am trying to build the next part of my life.

Support on Your Journey

A clear scan can bring relief without ending the fear or medical burden of survivorship.

Surviving Life Lessons Community Groups are being formed so survivors and caregivers can discuss NED, recurrence fears, routine screenings, chronic illness, future planning, retirement, and the challenge of enjoying life between appointments.

Find Your Community

No one should have to face life's challenges alone. At Surviving Life Lessons, we believe in life survivors helping life strugglers. Explore our growing Community Groups to connect with others who understand your journey, share encouragement, and find hope through meaningful conversations. You'll also have the opportunity to introduce yourself and share your own story of overcoming. Your story matters. It may be the encouragement someone else needs to keep moving forward, reminding them that they are not alone and that hope is always possible.

Your Story Matters

We need your nice comments below! Your thoughts, experiences, and lessons learned might be exactly what someone else needs to hear today.

Drop a comment, Say Hello, and join the conversation.

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References

• Centers for Disease Control and Prevention. “Screening for Colorectal Cancer.”Screening for Colorectal Cancer — CDC

• Centers for Disease Control and Prevention. “Use of Colorectal Cancer Screening Tests.”Use of Colorectal Cancer Screening Tests — CDC

• Centers for Disease Control and Prevention. “Reducing Risk for Colorectal Cancer.”Reducing Risk for Colorectal Cancer — CDC

• National Cancer Institute. “Computed Tomography (CT) Scans and Cancer.”Computed Tomography (CT) Scans and Cancer — NCI

• National Cancer Institute. “Follow-Up Medical Care.”Follow-Up Medical Care — NCI

• National Cancer Institute. “What Cancer Screening Tests Check for Cancer?”What Cancer Screening Tests Check for Cancer? — NCI

• Natera. “Signatera Frequently Asked Questions.”Signatera Frequently Asked Questions — Natera

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.