Honoring Leiomyosarcoma Awareness Day: Sharing Patient Stories

Today, July 15, 2023, we’re honoring leiomyosarcoma (LMS) Awareness Day by sharing some firsthand perspectives on the journey living with this rare cancer.

LMS is a type of soft-tissue sarcoma, referred to as a malignant smooth muscle tumor, which can arise in several locations within the body. This rare cancer often presents as enlarging masses and is highly unpredictable and resistant to treatment.

PTC is committed to investigating innovative therapies for this condition. We are currently developing unesbulin, an investigational treatment for LMS, and studying the treatment in SUNRISELMS, a placebo-controlled, registration-directed study of the efficacy and safety of unesbulin and dacarbazine in patients with advanced LMS.

Read on to hear more from people living with LMS. To learn more about our clinical trial, click here.

“I was diagnosed with uterine leiomyosarcoma in 2019 after a routine hysterectomy for a large ‘fibroid’. Pathology a week later told a different story. I went on to have my ovaries removed and underwent three-month scans until 14 months later, it metastasized to my lungs. I then had two lung surgeries and have undergone almost a year of chemo. I’m still fighting.

It’s been quite a journey as I’ve lost both my parents since diagnosis. I’m now living life day by day, working part time while going through treatment.”

Rare diseases call for patients and doctors to think outside the box. When I was diagnosed in 2002, with a very rare cancer of the involuntary smooth muscles, leiomyosarcoma (LMS), there was little research and only one standard chemo approved for it.

My LMS started in my uterus, hidden as a common fibroid. Uterine fibroids grow with estrogen and will typically shrink with menopause. Of women receiving hysterectomies for troublesome fibroids, one in 250 women will be diagnosed with LMS instead.

There was little do after surgery for my uterine LMS. I was offered the standard chemo but declined. From what I read, there was only a mere 26% response rate. I also declined general pelvic radiation. The permanent damage to healthy tissue was permanent and there was no evidence that it extended survival for LMS.

As predicted, the LMS metastasized to my lungs, making me a stage 4 patient. I had the tumors surgically removed.

After reading about breast cancer and aromatase inhibitors, a light went on for me. If breast cancers are estrogen sensitive, then surely the uterus is estrogen sensitive too. I asked my oncologist to test my primary tumor tissue for estrogen receptors. He replied, “Sure. There’s nothing else I can do for you.”

The pathology report came back. My LMS tumor was 99% positive for both estrogen and progesterone receptors. This meant that estrogen was driving my cancer to grow. The hope was that an aromatase inhibitor (only approved for breast cancers) would also block the estrogen my body made after menopause.

It worked! After taking the aromatase inhibitor for seven years, I have been tumor free for the last 19 years. I always urge patients to think outside the box when they feel stuck for options.

Since the time I was diagnosed, 21 years ago, I have dedicated my life to advocating for research and educating LMS patients and loved ones as the president of the Leiomyosarcoma Support & Direct Research Foundation (LMSDR). Thanks to LMSDR, we have accelerated research, leading to more trials and treatment options for LMS. We are proud to partner with PTC Therapeutics to help announce their innovative work and trials. You can learn more about leiomyosarcoma on LMSDR’s website at www.LMSDR.org .

“I didn’t know I had LMS until LMS told me it was there. Maybe I was overlooking some subtle signs, but then again, I wasn’t looking for them. But LMS shouted loud enough one day that my whole body heard.  LMS had been lurking in the shadows for up to three years, before it finally got bored.

Lie O My O Sar Co Ma

Almost sounds musical… Do Re Mi Fa So La Ti Do. It is poetic and I like the way it rolls off my tongue as I spread word of its abhorrent presence in my life. I tell everyone who wants to know, proud to be the storyteller: my story of how LMS crashed into my life and swiftly left, leaving debris for me to build back up into a life resembling normality.

Within eight months of being unwillingly acquainted with LMS, I’d lost my hair from grueling chemo, had surgery and said goodbye to a few important body parts, and found who my real friends are. 

I had control. I associated Leiomyosarcoma with my strength and positivity. I felt superhuman to know I was the brave hero who sent LMS far from those shadows; far away where it couldn’t shout or hurt or stalk me.

Did I have control? LMS creeps along under dank hedges and abandoned subways, avoiding surveillance, head down, everything hush-hush.

For five months I had that superpower. Five months I felt strong, regardless of my body weak from this kryptonite. Five months I’d read ‘Leiomyosarcoma’ and puff out my chest, victoriously; my cape flapping in the wind.

LMS is already whispering to me. The sound low and the tone more aggressive, spiteful almost. The bully is back. Uglier and meaner than ever before. Surgery can no longer be the sword at my side. LMS is stubborn.

I’ve been punched hard, in the stomach and the heart. I don’t know if I can stand up to this bully so soon. The sadness is heavy. The powers have diminished. I know LMS is going to be poking me, jabbing hard with its long unforgiving finger forever, relentlessly reigning misery over me.

‘Leiomyosarcoma’ haunts me. I see the word and wish I’d never encountered this evil trespasser. It brings the panic to the immediate present. I’m never going to be able to move on and leave it only in my darkest memories.

If anyone has a superhuman cloak I can borrow for a while, please let me know.”

I am a rare cancer caregiver since 2010, when my husband, a physician, was diagnosed with Leiomyosarcoma (LMS) – one of 70+ types of sarcoma. Sarcomas are almost 1% of all cancers.

I have now dedicated my life to honoring his survivorship through helping other patients to survive the challenging LMS journey.

Being a caregiver involves looking inside yourself to see what you have to give to a new and frightening life lesson. It is a lesson in how to approach such a needed supportive role for your spouse, how to be effective in that role, and how to make caregiving count for your loved one’s well-being into survivorship, both during and after treatment. Survivorship is said to begin at the initiative diagnosis stage, according to the medical community.

I realized I must be strong in mind, spirit, and determination to show my husband that I am in full control of myself as a source of needed support when he needs it most. But truth be told, I really was not as strong as I would have liked to be – he showed me the way forward in this. Other patients who have shown me their ability to be resilient through courage and hope have also illuminated my path to better caregiving.

Patients and their families are pillars of strength, and I always admire their ability to put it all into perspective in order to keep moving forward toward well-being, quality of life, and survivorship.

As a patient advocate with the National Leiomyosarcoma Foundation, I am here to advocate, support, find good resource assistance, and fund the much-needed research for LMS. If I can help any patient with any type of sarcoma or cancer, I never hesitate to do so. I just want to give back to them, and give what they need most: a heart to help them in any way possible. It feels so right to be able to contribute to their challenging journey in their quest for the cure.

PTC and National Leiomyosarcoma Foundation’s collaborative partnership to share information, research updates and educational support for patients and families is most appreciated – an important component of the Foundation’s ever-present patient-centric mission. Visit https://nlmsf.org/.

It was November 2021, and my position in one city had ended. As I was driving to a new city to begin a new job, I began to feel ill. Upon reaching my destination, I went to the doctor where I was told I had stage IV Leiomyosarcoma of the small bowel with mets to liver. Being alone in this new city, I made the decision to go back to the state where my family lives and where I could have treatment at a local hospital. 

It was a tough journey on many fronts. Being in the hospital for four days and chemo every three weeks was exhausting and debilitating.

Then, three months after my diagnosis, my mom had a heart attack and passed over. To make things worse, I contracted COVID-19 and had a kidney stone all in the same month.

These past 19 months have been very rough. Here are some tips that have helped keep me going:

1. Call upon your higher power.

For me, that is God. For others it may be the Universe, the Divine, or something else bringing them peace and connection. I’ve had so many people reach out, say prayers for me, and start prayer chains. Some of these people I don’t even know and I feel so blessed. Try to keep a positive attitude, even in the worst of times. It helps.

2. Set up a free Caring Bridge website (CaringBridge.org) for communication.

You can direct your family and friends to this website so they can read updates about your journey and feel connected. Appoint a person to set up, update, and monitor this website if that is easier for you.

3. Become a student of your diagnosis.

I did a lot of research to learn everything available regarding LMS and the chemotherapies recommended. ChemoCare.com has all of the chemotherapies listed along with possible side effects.

I also investigated genetic testing. I had my notes ready when meeting with my sarcoma oncologist. If you’re not a researcher, recruit a family or friend to do this for you. You are your own advocate. This way I was prepared and felt I possessed some power over this beast.

Annie and Mitch at NLMSF have been a huge help. Anytime I have questions about a medical procedure, Mitch is there to translate so I can understand. They are on top of the latest clinical trials and always available to chat.

4. Embrace self-care.

I visited an acupuncturist to help ease side effects, worked with someone to help with meditation healing and visualization, and I do yoga when able. There are free videos on YouTube to help with stretching as well.

5. Practice healthy nutrition.

I always ate healthy and continued doing so after my diagnosis. This helps keep your energy level up so you can bounce back quicker.

6. Listen to your own intuition and inner knowing.

Well-meaning friends would make suggestions try this, stop this, or do this. I still struggle with how to respond to them at times.

7. Accept that you will have bad days.

There are days I don’t want to get out of bed. I allow myself to feel sorry for my situation. Sometimes even taking a shower will help move your energy a bit higher.

Whether it is talking to a counselor or a friend, watching a comedy, or going for a walk, try to be kind to your mind, body, and spirit. Mother yourself in a tender and nurturing way; it’s a good way to help you move past the sadness, stress, and anxiety.

I now have over 50 liver mets that have crowded my stomach so it’s difficult to eat. Some of my ribs have been pushed out from these lesions.

I am blessed to have a great medical care team, NLMSF, family and friends who are there to support me. I am not dying of cancer, but rather living with cancer.

Wishing you all the best on your LMS journey.