Fibroid or Cancer? A Guide to the Signs I Almost Missed
Updated: 3 days ago
When a Fibroid Is Not Just a Fibroid
Most women who hear the word fibroid are told not to worry. Fibroids are common, and the vast majority are benign. That is exactly what I was told. I had a hysterectomy for what everyone believed were benign fibroids, and afterward, life seemed to return to normal.
Then something felt off. An unusual pain would not go away. I almost talked myself out of mentioning it. Instead, I asked one more question, and that question changed everything. A phone call followed. A doctor had found a mass. An MRI showed multiple masses. Weeks later, the word finally came: uterine leiomyosarcoma, a rare and aggressive cancer that can look like a fibroid before surgery.
If you are reading this because you have fibroids, are facing a hysterectomy, or just received a confusing scan result, I want you to know two things. First, most fibroids really are benign, and this guide is not meant to frighten you. Second, rare does not mean impossible, and the questions you ask now matter.
This guide is the first stage of my Cancer Journey collection. It covers what I wish I had known about fibroids, uterine morcellation, and rare uterine cancers, plus the hardest part of the beginning: waiting for answers.
Fibroid or Cancer? Why the Line Can Be Hard to See
Uterine fibroids are noncancerous growths of muscle tissue in the uterus. They are very common, especially as women reach their thirties and forties. Many cause no symptoms at all.
Others cause heavy bleeding, pelvic pressure, pain, or frequent urination.
Uterine leiomyosarcoma, often called LMS, also grows from the smooth muscle of the uterus.
Because fibroids and LMS start in the same type of tissue, they can look similar on imaging.
There is no simple test that can always tell the difference before surgery. That is one reason LMS is sometimes discovered only after a fibroid is removed and the tissue is examined under a microscope.
Doctors may consider certain factors more carefully, such as a growth that is getting larger quickly, new growth after menopause, or symptoms that do not fit the usual pattern. None of these automatically means cancer, but they are worth discussing with your doctor.
What I Wish I Had Known About Morcellation
Morcellation is a technique used during some minimally invasive surgeries to cut tissue into smaller pieces so it can be removed through small incisions. It can make recovery easier for many patients.
The concern is what happens if a growth that looks like a fibroid is actually an undiagnosed cancer. If cancerous tissue is broken up inside the body, there is a risk it could spread. Because of this, the U.S. Food and Drug Administration has issued safety communications about power morcellation, and many surgeons now use containment methods or other approaches when appropriate.
I did not know to ask about morcellation before my surgery. I share what I learned so that you can ask your surgeon clear questions, like:
Will morcellation be used during my surgery?
If so, will it be contained?
What is your plan if the tissue turns out to be cancerous?
Are there any signs that my fibroids need extra evaluation before surgery?
Asking these questions does not make you a difficult patient. It makes you an informed one.
Questions to Ask Before Fibroid Surgery
If you are preparing for a hysterectomy or myomectomy, it helps to go into your appointment with a list. Many patients feel rushed or overwhelmed in the exam room, and writing questions down ahead of time keeps you from forgetting what matters most. Consider asking:
How sure are we that these growths are fibroids?
Has anything about my imaging or symptoms raised extra concern?
What type of surgery do you recommend, and why?
How will the tissue be removed, and will it be sent for testing?
When and how will I receive the pathology results?
Who should I call if I have unusual pain or symptoms after recovery?
Bring someone with you if you can. A second set of ears can help you remember what was said and ask follow-up questions when you are too overwhelmed to think clearly.
Why a Rare Cancer Specialist Matters
Uterine leiomyosarcoma is rare, which means many doctors may see only a few cases, if any, in their careers. That is not a criticism of them. It simply means that rare cancers often benefit from the experience of specialists who treat them regularly, such as gynecologic oncologists and sarcoma centers. If you are told you have an unusual growth, it is reasonable to ask whether a specialist should review your imaging or pathology.
When Normal Life Returns, but Something Is Off
After my hysterectomy, I went back to work, family, and everyday life. That is what recovery is supposed to look like. But slowly, I noticed a pain that did not feel like normal healing.
It is easy to dismiss symptoms after surgery. You may tell yourself it is scar tissue, stress, or just getting older. Sometimes that is true. But your body knows when something is different. If a symptom keeps coming back, gets worse, or simply does not feel right, it deserves attention.
I Asked One More Question
One of the most important things I ever did was ask one more question about a symptom that did not feel right. I could have stayed quiet. I could have waited. Instead, I spoke up, and that led to the imaging that found the masses.
Many patients worry about bothering their doctors or being seen as anxious. Please do not let that fear keep you silent. You know your body. Describe what you are feeling clearly, say how long it has been happening, and ask what else could be causing it. If you do not feel heard, ask for a second opinion.
The Phone Call That Changed Everything
Then came the call. A doctor had found a mass. In a single moment, life divided into before and after.
If you have received a call like that, you know the shock. Your mind races through every possibility. You may feel numb, terrified, or strangely calm. All of those reactions are normal. You do not have to know what to do next right away. Take a breath. Write down what the doctor said.
Ask when you will hear more and who you can call with questions.
When Your Doctor Refers You to a Specialist
After an abnormal scan, you may be referred to a specialist, such as a gynecologic oncologist or a sarcoma center. That referral can feel frightening, but it is often a very good step. Specialists have experience with rare conditions and can order the right tests.
For rare cancers like uterine leiomyosarcoma, seeing a specialist who has treated it before can make a real difference. That may mean traveling. For me, it meant a six-hour drive.
The Six-Hour Drive and Finding Faith Before I Had Answers
That drive gave me hours to think, pray, and wonder what was coming. I did not have a diagnosis yet. I did not know how bad it was. What I found on that drive was faith before I had answers: a sense that whatever came next, I would not face it alone.
Faith can look different for everyone. For some, it is prayer. For others, it is hope, family, community, or simply the decision to keep going. Whatever gives you strength, hold onto it during the waiting.
Hurry Up and Wait
One of the hardest parts of the beginning is waiting. You wait for appointments, for scans, for biopsy results, for specialists, and for someone to finally tell you what is happening. It can feel unbearable, especially when you are imagining the worst.
Waiting is exhausting because it takes away your sense of control. Your mind fills the silence with fear. You may search online late at night and find frightening statistics that do not reflect your situation.
How to Cope While You Wait for Answers
You cannot rush the process, but you can take small steps to make the waiting a little easier:
Write down your questions as they come up so you are ready for your next appointment.
Keep a simple symptom journal with dates and details.
Choose one or two trusted people to update, instead of everyone.
Limit late-night searching, or stick to trusted sources like the National Cancer Institute.
Plan small things that bring you comfort, like a walk, a favorite show, or time outside.
Ask your care team how long results usually take and when to call if you have not heard back.
Small Steps When Answers Feel Far Away
This stage can feel like one huge, overwhelming problem. The heart of Surviving Life Lessons is breaking big problems into small, manageable steps. Here are some SMART-style examples:
"Before my next appointment, I will write down every symptom and when it started."
"This week, I will call the specialist's office once to check on my appointment status."
"Before surgery, I will ask my surgeon three questions about morcellation and tissue testing."
"Each day while I wait, I will take a ten-minute walk or do one calming activity."
If a step feels too big, make it smaller. If a time frame feels too short, give yourself more time.
Making These Steps Fit Your Situation
Every patient's path is different. Your symptoms, your doctors, your insurance, and your support system will shape what is possible. Before you try a step, ask yourself whether it fits your energy and your situation right now. If something does not work, the plan needs adjusting, not you. You can also learn from others who have been there. That is why we have free community groups, where people share their experiences and practical advice.
A Note About Medical Information
I am not a doctor, and this guide is based on my personal experience and what I learned. Most fibroids are benign. If you have concerns about fibroids, surgery, or a scan result, talk with your doctor or a gynecologic oncologist.
Where to Start in This Series
If you have fibroids or are facing surgery, start with Can a Fibroid Actually Be Uterine Leiomyosarcoma? and What Is Uterine Morcellation?
If something feels off after surgery, read Life After a Hysterectomy for Fibroids and I Asked One More Question.
If you are waiting for answers, read Hurry Up and Wait and How to Cope When You're Waiting.
Frequently Asked Questions
Can a fibroid turn out to be cancer?
Most fibroids are benign. In rare cases, a growth believed to be a fibroid is found to be uterine leiomyosarcoma after surgery. Talk with your doctor about any concerns.
What is uterine morcellation?
Morcellation is a surgical technique that cuts tissue into smaller pieces for removal through small incisions. If the tissue is an undiagnosed cancer, it may carry a risk of spreading it, so ask your surgeon how it will be handled.
What should I do if I feel something is wrong after a hysterectomy?
Tell your doctor clearly what you are feeling and how long it has been happening. Ask what could be causing it and whether imaging is needed.
How can I cope while waiting for a diagnosis?
Write down questions, keep a symptom journal, limit late-night searching, lean on a few trusted people, and plan small comforts each day.
Journal Prompts for This Stage
What symptom or question have I been afraid to bring up?
What do I want to ask at my next appointment?
Who can I lean on while I wait?
What helps me feel calmer when my mind races?
Your Questions Matter
If I had not asked one more question, my story might have been very different. Trust what your body is telling you. Ask the questions you are afraid to ask. And while you wait, be gentle with yourself. You do not have to have all the answers today. You only need to take the next small step.
Posts in This Series
These posts make up the first stage of my Cancer Journey: the fibroid diagnosis, the questions I wish I had asked, and the long wait for answers.
Life After a Hysterectomy for Fibroids: When Normal Life Returned But Something is Off
Can a Fibroid Actually Be Uterine Leiomyosarcoma? What Patients Need to Know
Fibroids and Morcellation: What I Wish I Had Known Before Surgery
What Is Uterine Morcellation? What I Wish I Had Known Before My Hysterectomy
Fibroid Morcellation: What Patients Need to Know Before Surgery
When My Doctor Found a Mass: The Phone Call That Changed Everything
The Six-Hour Drive That Changed My Life: Finding Faith Before I Had Answers
Hurry Up and Wait: Waiting for a Cancer Specialist After an Abnormal MRI
How to Cope When You're Waiting for Test Results, Appointments, or a Diagnosis
This guide is part of my full cancer story. See every stage in the Stage IV Cancer Journey Guide: I Was Kept Alive to Live.
Where to Go From Here
Waiting for answers is easier when you are not waiting alone. At Surviving Life Lessons, we believe in life survivors helping life strugglers. Our Healthcare Self-Advocacy Support Group is a place to learn how to speak up for your care, and our Cancer Support Group connects you with others who understand what you are facing. You can also browse our Community Groups Catalog to find every group that fits where you are right now.
Next, read Can a Fibroid Actually Be Uterine Leiomyosarcoma? What Patients Need to Know or Stage IV Cancer Journey Guide: I Was Kept Alive to Live.
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References
National Cancer Institute. Uterine Sarcoma Treatment (PDQ), Patient Version. cancer.gov
U.S. Food and Drug Administration. Laparoscopic Power Morcellators: Safety Communications. fda.gov
American College of Obstetricians and Gynecologists. Uterine Fibroids. acog.org
National Leiomyosarcoma Foundation. nlmsf.org
Office on Women's Health. Uterine Fibroids. womenshealth.gov
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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