Why I Chose Exemestane for My ER/PR-Positive Rare Cancer
- Deborah Ann Martin
- 3 days ago
- 21 min read
How Tumor Testing Helped Guide My Treatment and What Estrogen-Lowering Medicine Has Done to My Body
When I was first diagnosed with Stage IV uterine leiomyosarcoma, I knew very little about tumor receptors, biomarkers, or targeted treatments.
I knew I had a rare and aggressive cancer.
I knew I had undergone major surgeries and chemotherapy.
I also knew that I did not want to reach the end of chemotherapy and simply wait for someone to tell me the cancer had returned.
I wanted to know whether testing could reveal anything about my particular tumor that might help my doctors and me make another treatment decision.
That testing showed that my tumor was estrogen receptor positive and progesterone receptor positive, often shortened to "ER positive and PR positive".
Those results helped lead to my decision to take an estrogen-lowering medicine.
I first tried letrozole, sold under the brand name Femara.
Because of the severe muscle and joint symptoms I experienced, my medical team later changed me to exemestane, sold under the brand name Aromasin.
Exemestane has become part of my long-term attempt to keep my rare cancer from returning.
It has also changed the way my body feels and moves every day.
We Did More Than One Type of Genetic Testing
People often use the words "genetic testing" to describe several different tests.
They are not all the same.
I underwent inherited, or germline, genetic testing. That type of testing usually uses blood or saliva to look for genetic changes a person may have inherited from a parent. Those results may provide information about inherited cancer risk and sometimes about risks to relatives.
My inherited genetic testing did not find an inherited explanation for my cancer.
I also had testing performed on my tumor.
Tumor testing may be called:
Tumor genetic testing
Somatic testing
Molecular profiling
Biomarker testing
Tumor sequencing
Tumor testing looks for genes, proteins, receptors, and other features inside the cancer itself. Those features may help explain the tumor’s biology or suggest treatments that could be considered.
The National Cancer Institute explains that inherited genetic testing is different from tumor biomarker testing. Inherited testing looks for changes passed through a family, while tumor testing examines changes or characteristics found in cancer cells. Tumor findings can sometimes help guide treatment, but they do not guarantee that a useful treatment will be found.
The Tumor Test Gave Us More Pieces of the Puzzle
My tumor testing found that my uterine leiomyosarcoma was:
Estrogen receptor positive
Progesterone receptor positive
ALK positive
The ALK finding became part of a later treatment decision involving lorlatinib. That medication deserves its own article because it has a different purpose, a different side-effect profile, and a different monitoring plan.
This article focuses on the ER and PR results and my decision to use hormone treatment.
Testing did not give me a guarantee.
It did not tell us with certainty that a medicine would prevent recurrence.
It gave my oncology team and me additional information about my tumor.
With a rare cancer, each reliable piece of information can matter.
What Does ER Positive Mean?
"ER positive" means that testing found estrogen receptors on or inside the cancer cells.
A receptor can be thought of as a place where a signal connects with a cell.
When estrogen connects with estrogen receptors, it may send signals that encourage certain hormone-sensitive cancer cells to grow or function.
That does not mean estrogen caused my cancer by itself.
It means my tumor showed a biological feature that suggested estrogen might be one of the signals affecting it.
What Does PR Positive Mean?
"PR positive" means that the tumor cells also had receptors for progesterone.
Estrogen and progesterone receptors are often tested together because they can provide information about whether a cancer may respond to hormone-related treatment.
ER and PR positivity are most commonly discussed in breast cancer care, where hormone therapy is well established.
My cancer was not breast cancer.
It was uterine leiomyosarcoma.
Using an aromatase inhibitor in my situation was an individualized decision based on my rare cancer, my tumor’s receptor findings, my medical history, and conversations with my oncology team.
Why Use an Estrogen-Lowering Medicine?
After chemotherapy, my scans showed no evidence of disease.
I was grateful.
I was also afraid of a plan that involved doing nothing but waiting for visible cancer to return.
Because my tumor was ER and PR positive, I asked whether reducing the amount of estrogen available in my body might give us another way to act on what we had learned about the tumor.
An aromatase inhibitor lowers estrogen production by blocking an enzyme called aromatase.
After menopause, the ovaries are no longer the main source of estrogen. The body can still produce estrogen in other tissues through the aromatase enzyme.
Aromatase inhibitors block much of that production.
The general idea is that reducing estrogen may reduce a growth signal used by hormone-sensitive cancer cells.
Aromatase inhibitors are FDA approved mainly for hormone receptor-positive breast cancer. Their use for a rare cancer such as uterine leiomyosarcoma is based on an individualized oncology decision and may be considered off label. The fact that a medicine is used off label does not mean it is automatically inappropriate. It means the use is outside the FDA-approved labeling and requires medical judgment based on the patient’s circumstances and available evidence.
My First Aromatase Inhibitor Was Letrozole
I first began taking "letrozole".
Letrozole is the generic name.
"Femara" is the brand name.
Letrozole is an aromatase inhibitor that lowers estrogen levels.
I understood why we were trying it.
My tumor was hormone receptor positive, and I wanted to use every reasonable piece of information we had found.
But my body did not tolerate letrozole well.
I developed severe muscle and joint pain.
The pain was strong enough that I needed to talk with my oncology team about whether another option was available.
Letrozole Works Well for Many People
My experience with letrozole does not mean everyone who takes it will have the same experience.
Many people use letrozole without developing the level of pain I experienced.
Some people have mild symptoms.
Some have several symptoms.
Some have few or no noticeable problems.
The manufacturer’s prescribing information lists possible adverse effects, but a list of possible effects does not mean every patient will experience them.
How a person responds may depend on many factors, including:
General health
Other medical conditions
Age
Other medications
Previous treatments
Bone and joint health
Individual biology
Length of treatment
Novartis warns that Femara may decrease bone mineral density and recommends considering bone-health monitoring. Reported adverse reactions include joint pain, hot flashes, fatigue, sweating, swelling, headache, dizziness, bone pain, back pain, nausea, and other effects. The complete manufacturer information should be reviewed for the full list, warnings, and precautions.
Side Effects Should Be Reported, Not Silently Endured
Cancer patients may believe that suffering is simply part of treatment.
Some discomfort may be expected.
That does not mean the care team should be kept unaware of it.
The oncology team needs to know:
When a symptom began
How severe it is
Whether it is worsening
Whether it interferes with walking
Whether it affects sleep
Whether it prevents work
Whether it creates a fall risk
Whether it affects medication adherence
Whether there are new or emergency symptoms
A symptom that sounds manageable on a standard list may be disabling in everyday life.
“Joint pain” on paper may mean a person can no longer rise safely from a chair.
“Muscle stiffness” may mean walking along the wall to reach the kitchen.
The words do not always show the full effect.
My Oncology Pharmacist Helped Me Change Medicines
When letrozole became too difficult for me to tolerate, I did not simply stop taking it and make the next decision alone.
I spoke with my oncology care team.
An oncology pharmacist helped me understand that another aromatase inhibitor might be an option.
I changed from letrozole to exemestane.
That is one reason patients need to become comfortable communicating with their oncology team.
A care team may be able to suggest:
A different medicine
A change in timing
Supportive treatment
Physical therapy
Pain-management options
Additional testing
A temporary interruption when medically appropriate
Another way to manage a particular effect
Patients should not change or stop cancer medication without speaking with their prescribing team.
Exemestane Is Not the Same Drug as Letrozole
Exemestane and letrozole are both aromatase inhibitors.
They both reduce estrogen production.
They are not identical medicines.
Letrozole and anastrozole are often described as nonsteroidal aromatase inhibitors.
Exemestane is a steroidal aromatase inhibitor.
A person who has difficulty tolerating one aromatase inhibitor may sometimes have a different experience with another.
That does not guarantee the second medicine will be easy.
For me, exemestane was a medicine I could continue, but I still developed significant side effects.
Exemestane for ER/PR-positive rare cancer
"Exemestane" is the generic name.
"Aromasin" is the original brand name.
The FDA-approved prescribing information for Aromasin is written for its approved use in certain hormone receptor-positive breast cancers.
My use of exemestane for ER/PR-positive rare cancer, uterine leiomyosarcoma, is an individualized treatment choice.
The medication lowers estrogen.
That may help reduce hormone signaling to cancer cells that use estrogen receptors.
It also means estrogen levels throughout the body are reduced.
Estrogen has roles beyond reproduction.
It is involved in bone health and may influence joints, muscles, body temperature, sleep, sexual health, and other body systems.
Lowering it can create effects that extend far beyond the cancer.
My Decision Was a Tradeoff
I did not choose exemestane because it was easy.
I chose it because I wanted to use the information provided by my tumor testing.
My tumor was ER and PR positive.
The medicine gave my doctors and me a way to respond to that information.
I understood there could be side effects.
Understanding that a risk exists is different from living with that effect every day.
I chose to continue because, for me, the possibility that the medication might help control hormone-sensitive cancer was worth trying to manage the physical burden.
That is my personal decision.
Another patient may have different tumor results, symptoms, risks, treatments, or priorities.
My Body Feels Stiff Like Cardboard
One of my greatest problems with exemestane has been severe muscle and joint stiffness.
I work at a computer.
Sitting for an eight-hour workday can leave my body feeling almost locked in place.
When I stand, I sometimes feel like a piece of cardboard trying to bend.
My joints and muscles do not immediately move the way I want them to.
I may have to hold onto a wall.
I may need my cane.
I take careful steps until my body begins loosening enough to move more normally.
The longer I sit without moving, the worse it can become.
No Movement Can Feel Crippling
A desk job may look physically easy.
For me, staying in one position can be damaging.
When I sit too long, my body becomes painfully stiff.
Standing to get lunch or use the restroom can become a process.
I may need to pause before taking the first step.
I may walk along the wall to steady myself.
I may depend on my cane while I wait for my muscles and joints to begin moving.
The medicine may be one part of why I am still alive.
Living with the medicine can still be hard.
The Manufacturer Lists Muscle and Joint Effects
Pfizer’s prescribing information lists several common adverse reactions reported with
Aromasin, including:
Hot flashes
Fatigue
Joint pain
Headache
Insomnia
Increased sweating
Nausea
Dizziness
Depression
Shortness of breath
Abdominal pain
Visual changes in some patients
Muscle and bone-related symptoms
The label also warns that exemestane can reduce bone mineral density over time. Pfizer recommends evaluating vitamin D levels before aromatase inhibitor treatment and addressing deficiency when appropriate.
This list does not mean every patient will experience all these effects.
It also may not describe every effect a particular person experiences.
Patients should review the complete prescribing information and discuss new symptoms with their oncology team.
Side Effects Are Different for Every Person
This point needs to be repeated.
My experience is not a prediction of someone else’s experience.
A person may take letrozole or exemestane and continue normal activities with limited difficulty.
Another person may experience hot flashes but no serious pain.
Someone else may develop sleep problems, fatigue, joint pain, or bone loss.
Another may need to change medications.
The existence of side effects does not mean the medication is unsafe for everyone.
The absence of side effects does not mean the medication is not working.
A patient’s treatment should be evaluated by qualified healthcare professionals who know the person’s diagnosis, medications, health history, laboratory results, bone health, and other risks.
I Take Exemestane at Night
I take my exemestane at night.
That schedule works as part of my medication routine.
Patients should follow the directions provided by their prescriber and pharmacist.
Pfizer’s prescribing information recommends taking Aromasin once daily after a meal for its approved indications. The exact timing and instructions for an individual patient should come from the prescribing team.
Taking it at night does not make every side effect disappear.
It helps me keep the medicine within a routine I can remember and manage.
I Use Magnesium
I take magnesium as part of the plan I use to manage muscle stiffness.
Earlier in treatment, I also used Epsom salt baths.
Epsom salt contains magnesium sulfate.
The warm water and bathing routine helped me feel less stiff.
However, my personal experience does not prove that magnesium supplements or Epsom salt baths will reduce aromatase-inhibitor symptoms for everyone.
Supplements can cause side effects, interact with medicines, and be unsafe for some people, particularly those with kidney problems or other medical conditions.
Patients should ask their physician, oncology pharmacist, or another qualified professional before starting magnesium or any supplement.
A Helpful Bath Became a Safety Risk
As my stiffness and mobility problems progressed, getting into a bathtub became more dangerous.
I was afraid I might lower myself into the tub and be unable to get back out.
That changed the risk and benefit.
The Epsom salt bath may have helped my muscles.
It was no longer worth the possibility of falling, becoming trapped, or needing one of my sons to lift me from the bathtub.
A supportive method is not helpful if using it becomes unsafe.
One of My Sons Has Lived With Me
Since my cancer diagnosis, one of my children has lived with me to make sure I am all right.
Having someone in the house gives me reassurance.
It also shows how much long-term treatment can affect a family.
I am an adult who values independence.
I do not enjoy the idea that I might need one of my sons to help me out of a bathtub.
That is part of why I stopped taking that risk.
Accepting safety help is not weakness.
It is adapting to the body I now have.
Frequent Movement Matters to Me
Long periods without movement make my stiffness worse.
I try to stand and move when I am able.
Even small movement breaks may help me avoid becoming completely locked in one position.
A movement plan should fit the patient’s health, balance, pain level, surgical history, bone health, and fall risk.
A doctor or physical therapist may suggest:
Gentle range-of-motion exercises
Short walking breaks
Chair exercises
Stretching
Strength training
Balance exercises
Changes to the workstation
A sit-to-stand desk
Physical therapy
Occupational therapy
Exercise recommendations need to be personalized.
A patient with weak bones, metastases, recent surgery, severe pain, or balance problems may require special precautions.
Massage Therapy Helps Me
I eventually received massage therapy to help manage some of the pain and stiffness associated with my long-term treatment.
Massage does not treat the cancer itself.
For me, it is supportive care.
It helps address what the treatment does to my body.
Massage should be discussed with the medical team, especially for patients with:
Low platelets
Blood clots
Bone weakness
Bone metastases
Lymphedema
Recent surgery
Skin injury
Neuropathy
Infection
A port
Other medical risks
Cancer-informed massage professionals may need to adjust pressure, positioning, and technique.
Exemestane Can Affect Bone Density
One of the most important long-term concerns with exemestane is bone loss.
Estrogen helps maintain bone strength.
Lowering estrogen can speed the loss of bone mineral density and increase the risk of osteoporosis and fractures.
Pfizer’s prescribing information warns that reductions in bone mineral density occur over time with exemestane and recommends attention to vitamin D status.
That is why bone health has become part of my ongoing cancer care.
Baseline Bone-Density Test
Before beginning long-term aromatase-inhibitor treatment, my medical team obtained a baseline bone-density test.
The test I was trying to remember is called a "DEXA scan"or "DXA scan".
DEXA stands for dual-energy X-ray absorptiometry.
It is a low-dose X-ray test commonly used to measure bone mineral density, often in the hip and spine.
The baseline showed where my bone density was before years of estrogen-lowering treatment.
Without a baseline, it would be harder to know whether my bones were changing and how quickly.
Yearly Bone-Density Testing
As part of my personal medical plan, I receive regular bone-density testing.
My team has monitored me yearly.
That schedule is specific to my medical history and treatment plan.
Not every patient taking an aromatase inhibitor will need a DEXA scan every year.
The timing may depend on:
Baseline bone density
Age
Menopause status
Previous fractures
Family history
Other medications
Calcium and vitamin D levels
Kidney or thyroid conditions
Length of aromatase-inhibitor treatment
Other osteoporosis risks
MedlinePlus identifies long-term aromatase-inhibitor use as one reason a healthcare professional may recommend bone-density testing.
Patients should ask their care team when testing should begin and how often it should be repeated.
What the DEXA Scan Measures
A DEXA scan produces bone-density measurements that are commonly reported as:
A "T-score"
A "Z-score**
The healthcare professional interprets those results along with age, health history, medications, fracture history, and other risk factors.
Patients should ask:
What was my baseline score?
Has it changed?
How much has it changed?
Do I have normal bone density?
Do I have osteopenia?
Do I have osteoporosis?
What can I do to protect my bones?
Do I need additional treatment?
Do not compare only one number without medical interpretation.
I Take Calcium and Vitamin D
My medical team has me take calcium with vitamin D.
Vitamin D helps the body absorb calcium.
Calcium is needed for bones as well as muscles, nerves, and other body functions.
My care team also strongly encourages me to obtain as much calcium and vitamin D as reasonably possible from everyday foods.
That may include foods such as:
Milk
Yogurt
Cheese
Fortified nondairy milk
Fortified foods
Certain fish
Some leafy vegetables
Other calcium-containing foods
The correct amount depends on the individual.
Too much calcium or vitamin D can also create problems.
Supplements should be discussed with a healthcare professional, especially when the patient has kidney disease, kidney stones, heart problems, thyroid treatment, several medications, or abnormal blood levels.
Bone Health Requires More Than Supplements
Calcium and vitamin D are only parts of bone-health care.
Depending on the person, the medical team may also discuss:
Weight-bearing activity
Strength training
Balance exercises
Fall prevention
Smoking cessation
Alcohol limits
Protein intake
Bone-strengthening medication
Dental evaluation before certain bone medicines
Repeat DEXA testing
Laboratory monitoring
Exercise must be adapted to the patient.
My mobility limitations mean I cannot assume that every standard exercise recommendation is safe for me.
Falling Is a Serious Concern
When a medication may reduce bone density, preventing falls becomes even more important.
My stiffness can make the first few steps after sitting difficult.
I may use walls or a cane for support.
That combination of stiffness, reduced mobility, and possible bone loss increases my need to think about safety.
Helpful changes may include:
Keeping walkways clear
Using appropriate mobility aids
Improving lighting
Wearing supportive footwear
Adding secure grab bars
Avoiding loose rugs
Standing slowly
Using a shower chair
Asking for help when needed
Working with physical therapy
Patients should use equipment recommended and fitted for them rather than selecting a device based only on appearance or convenience.
My Job Makes the Symptoms Harder
I spend much of the workday seated at a computer.
An eight-hour desk job can be physically punishing when every period without movement leads to more stiffness.
People may see a seated job and assume it is easier on the body.
For me, it can be almost crippling.
The body was not designed to remain in one position all day.
The medication-related stiffness makes that reality harder.
Workplace accommodations may include:
Movement breaks
Flexible scheduling
An adjustable desk
An ergonomic chair
Remote work
A footrest
Time for physical therapy
Parking changes
Modified duties
The right accommodation depends on the job and the person.
Cancer Treatment Can Create Another Chronic Condition
Exemestane is intended to address a feature of my cancer.
Its effects have become part of my chronic health story.
I now manage:
Pain
Stiffness
Mobility problems
Fall concerns
Bone-density monitoring
Supplements
Movement needs
Specialist care
Supportive treatment
This is why cancer survivorship is not always a return to the body a person had before treatment.
Sometimes survival means learning how to manage the body treatment left behind.
I Still Chose the Medicine
It would be easy to read only about the side effects and ask why I continue taking exemestane.
I continue because my tumor was ER and PR positive.
Tumor testing gave us that information.
I wanted to use the information rather than ignore it.
The medication represents a choice I made with my oncology team to act on a possible weakness in my cancer.
That does not mean the medicine is guaranteed to prevent recurrence.
It means the potential benefit matters enough to me that I continue trying to manage the burden.
Treatment Decisions Are Personal
Another patient may make a different decision.
Someone may have:
Different receptor results
Different cancer behavior
More severe side effects
Greater fracture risk
Different health conditions
Another treatment option
A different tolerance for risk
A different oncology recommendation
There is no value in shaming someone for taking a medication.
There is also no value in shaming someone whose medical team decides the medication should be changed or stopped.
The decision belongs between the informed patient and qualified healthcare professionals.
Do Not Stop Because of Something You Read Online
Online information can help patients prepare questions.
It should not replace medical guidance.
A patient reading about side effects may become frightened and stop treatment suddenly.
Another patient may assume that every symptom is normal and fail to report something serious.
Both situations can be dangerous.
Contact the prescribing team when:
Pain becomes severe
Walking changes
A fall occurs
A bone may be fractured
Symptoms interfere with taking the medicine
New swelling develops
Breathing changes
Chest pain occurs
Vision changes
Depression becomes severe
Any symptom feels urgent or unusual
The medical team can decide whether the symptom is related to the medicine, another health condition, or an emergency.
The Manufacturer’s Information Matters
A blog, patient group, or social media post can describe lived experience.
The manufacturer’s prescribing information provides the official list of warnings, precautions, adverse reactions, interactions, and approved uses reviewed for the medicine.
Patients should review the manufacturer’s information with their medical team or pharmacist.
The Pfizer prescribing information for Aromasin contains the full official information for exemestane.
The Novartis prescribing information for Femara contains the full official information for letrozole.
Those documents are included in the Trusted References section below.
Questions to Ask Before Starting an Aromatase Inhibitor
Why is this medicine being recommended for my cancer?
Is this an FDA-approved or off-label use?
What did my tumor testing show?
Is my tumor ER positive, PR positive, or both?
What benefit are we hoping for?
How long might I take it?
What are the common side effects?
Which symptoms require an urgent call?
What should my baseline bone-density testing include?
Should my vitamin D level be checked?
Do I need calcium or vitamin D?
Could the medicine interact with my other drugs?
What should I do if joint or muscle pain becomes severe?
Are there other aromatase inhibitors available?
What happens if I cannot tolerate this one?
Questions to Ask During Treatment
Could my new pain be related to the medicine?
Should my bone density be checked again?
Has my vitamin D level changed?
Am I taking an appropriate amount of calcium?
Would physical therapy help?
Is massage medically safe for me?
Could another medicine or supplement interact with exemestane?
Would changing when I take it help?
Is another aromatase inhibitor an option?
Could another medical condition be causing the symptoms?
What can I do to reduce my fall risk?
Should I speak with a bone-health specialist?
Keep a Symptom Record
A simple record can help the care team understand what is happening.
Write down:
The date
The medication and dose
The time it was taken
The symptom
Severity
How long it lasted
What activity made it worse
What helped
Whether it affected sleep
Whether it affected work
Whether it affected walking
Any falls or near falls
A statement such as “I hurt” matters.
A detailed pattern may give the team even more information for decision-making.
What Loved Ones Should Understand
When someone takes a long-term cancer medication, loved ones may think the dangerous part is over.
They may not see the daily stiffness.
They may not see how hard it is to rise from a chair.
They may not understand why the patient uses a cane one day and appears to move better another day.
They may not know that a bathtub has become unsafe.
They may not realize how much courage it takes to swallow a medicine that helps fight cancer but also causes pain.
Helpful support may include:
Allowing extra time
Offering an arm without pulling
Helping with household tasks
Driving to appointments
Installing safety equipment
Encouraging movement without pressure
Listening without dismissing the pain
Attending medical appointments
Respecting the patient’s treatment decision
What I Wish Someone Had Told Me
I wish someone had explained the difference between inherited genetic testing and testing the tumor itself.
I wish I had known sooner that the ER and PR findings could help guide a treatment decision.
I wish someone had explained in everyday language how an aromatase inhibitor lowers estrogen.
I wish I had understood that “joint pain” on a side-effect list could mean struggling to stand after sitting at my desk.
I wish I had known that one aromatase inhibitor might affect me differently from another.
I wish someone had told me to establish a baseline bone-density measurement before years of treatment.
I wish I had known that a helpful Epsom salt bath might eventually become unsafe because of my mobility.
Most of all, I wish someone had said:
“You do not have to silently accept every side effect. Tell your oncology team. There may be ways to help, monitor the risks, or consider another option.”
Hope for Today
Tumor testing did not hand me a cure.
It gave me information.
My tumor was ER positive and PR positive.
That meant estrogen and progesterone receptors were part of my cancer’s biology.
My doctors and I used that information to consider hormone treatment.
I first tried letrozole.
My body did not tolerate it well.
I spoke with my care team and changed to exemestane.
Exemestane has not been easy.
My muscles and joints become painfully stiff.
After sitting at my desk, I can feel like cardboard trying to walk.
I may hold the wall.
I may use my cane.
I take magnesium with my medical team’s knowledge.
I take calcium and vitamin D.
I used Epsom salt baths until getting in and out of the tub became unsafe.
I receive regular bone-density testing based on my medical plan.
I try to move.
I accept help.
I tell my doctors what the medicine is doing to my body.
And each night, I take the medication I chose because my tumor testing gave us a possible way to keep fighting.
I do not know whether exemestane will be the reason my cancer remains away.
No one can promise me that.
I know why I chose it.
I chose to use every reasonable piece of information we had.
I chose to balance possible protection against real side effects.
I chose to remain involved in the decisions about my own body.
That is what personalized cancer care should look like.
It is not a test result followed automatically by a pill.
It is information, medical judgment, honest conversation, careful monitoring, changing plans when needed, and a patient who understands why she is making the choice.
Frequently Asked Questions
Is inherited genetic testing the same as tumor testing?
No. Inherited, or germline, testing looks for genetic changes passed through a family. Tumor testing examines genes, proteins, receptors, and other features of cancer cells that may help guide treatment.
What does ER positive mean?
It means the tumor cells tested positive for estrogen receptors. Those receptors may allow estrogen to send signals that affect the cancer cells.
What does PR positive mean?
It means the tumor tested positive for progesterone receptors. ER and PR findings can help doctors evaluate whether hormone-related treatment may be appropriate.
What is an aromatase inhibitor?
It is a medicine that blocks the aromatase enzyme and lowers estrogen production in the body.
What are the generic and brand names?
Letrozole is the generic name for Femara. Exemestane is the generic name for Aromasin. Anastrozole is the generic name for Arimidex.
Is exemestane approved specifically for uterine leiomyosarcoma?
Its FDA-approved indications are for certain hormone receptor-positive breast cancers. Use for uterine leiomyosarcoma is an individualized oncology decision and may be off label.
Does everyone develop severe side effects?
No. Side effects vary widely. Some people have few problems, while others experience pain, stiffness, fatigue, hot flashes, sleep problems, bone loss, or other effects.
Can a patient change from one aromatase inhibitor to another?
Sometimes. A person may tolerate one differently from another. Any change should be made with the prescribing oncology team.
Why are bone-density tests important?
Aromatase inhibitors may reduce bone mineral density and increase osteoporosis or fracture risk. Baseline and follow-up testing can help the medical team monitor changes.
What is a DEXA or DXA scan?
It is a low-dose X-ray test used to measure bone mineral density, commonly at the spine and hip.
Should everyone taking exemestane receive annual DEXA scans?
Not necessarily. My yearly schedule is part of my individual care plan. Testing frequency should be determined by the medical team based on personal risks and results.
Can magnesium or Epsom salts treat aromatase-inhibitor pain?
They are not proven solutions for every patient. Supplements and baths may also create risks. Discuss any supportive treatment with the medical team.
Should a patient stop exemestane because of joint pain?
Do not stop or change the medicine without contacting the prescribing team. The team may evaluate other causes, suggest supportive care, or discuss another treatment option.
Support on Your Journey
Living with a long-term cancer medication can feel lonely.
Other people may see that you are NED and assume treatment is over.
They may not see the pain involved in standing after a workday, the fear of falling in a bathtub, the supplements, the bone scans, or the calculations behind choosing to take another dose.
Surviving Life Lessons Community Groups are being formed to help people discuss cancer treatment, chronic side effects, mobility, family support, work, and the decisions that continue long after chemotherapy.
You deserve treatment information you can understand.
You also deserve a care team that listens when the treatment meant to protect your life changes how you live it.
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
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Drop a comment, Say Hello, and join the conversation.
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References
National Cancer Institute. “Biomarker Testing for Cancer Treatment.”
National Cancer Institute. “Genetic Testing for Inherited Cancer Risk.”
National Cancer Institute. “The Genetics of Cancer.”
National Cancer Institute. “Off-Label Drug Use in Cancer Treatment.”
National Cancer Institute. “Anastrozole.”
Pfizer. “AROMASIN® (Exemestane) Full Prescribing Information.”
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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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