How Rare is Leiomyosarcoma?

How Rare Is Leiomyosarcoma? Photo courtesy by rawpixel-623459-unsplash

Googling the type of cancer you may have at the moment, you will easily find the information across different cancer websites such as Cancer.Net, National Cancer Institution, or WebMD.

However, not in the case of Leiomyosarcoma.

In, How Did I Get My Cancer, you can read how I found out my cancer, signs, and symptoms and how does my cancer look like.

Whenever you have the same diagnosis and you are reading this, the reason why I am writing this article is first, to share my experience with Leiomysarcoma and also to share what I had gathered from every research that I did in the past. The basis in writing this is not to compare everyone’s experiences with this kind of cancer. We may have the same diagnosis, yet, cancer can never be the same.

Remember: No matter how rare and how deadly Leiomysarcoma is, together we are strong.

If you are really keen to do your self-advocacy, Leiomyosarcoma can be found in websites that focus on a different kind of rare disease. Here are the recommendations of the website where you can get reliable information about your Leiomyosarcoma:

  1. National Organization for Rare Disorders
  2. National Center for Advancing Translational Sciences
  3. Mayo Clinic
  4. Sarcoma Foundation of America

The exact cause of leiomyosarcoma is UNKNOWN.

We are told about this fact for the nth times. BUT, when you ask all patients and survivors what are the symptoms, it varies and they are not the same! In my own experience, like what I talked in “How Did I Get My Cancer” a small lump that keeps growing and on the 9th-10th months, the pain grew stronger and it numbed my legs.

What are your symptoms? Let The Cancer Voice Asia know in the comments so that everyone could know how rare our cancer is.


My name is Cielo, the author of “The Cancer Voice Asia”, a blog that aims to support and inspire anyone who is facing cancer. I know how it feels to be diagnosed with a rare and aggressive type of cancer, Leiomyosarcoma, at the age of 29. I know the challenges, the fears, the hopes, and the joys of living with cancer. I want to share my story with you and connect you with others who understand what you are going through. Together, we can empower ourselves and fight against the disease. Join me on this platform and let’s make our healing journey a meaningful one.

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