Are there any women out there living with Leiomyosarcoma cancer with secondaries.

Is there anyone here suffering from leiomyosarcoma cancer?

It is a really rare cancer effecting women and seems to be connected to fibroids in peri menopause stages but the the time it was diagnosed I already had secondaries in my lungs. I  have been having  chemo on and off now for 3 years. I am doing well as far as I know but its not been easy and have had to deal with a lot of trauma with operations and infections. I think even the strongest of people would find it hard to endure such ongoing treatment and side effects.  I would say I have tried hard to stay positive and have a strong desire to live as long as possible. I am blessed to have good family and friends but its been a hard journey and I don't wish to over burden people close to me when they remain so worried a lot of the time.

Wishing you all the best. 

  • Hi Christywith, 

    A very warm welcome to Cancer Chat. Thank you for coming here and sharing your experience dealing with leiomyosarcoma cancer. You will find information on our website on the different types of soft tissue sarcomas including leiomyosarcoma. I hope that the chemotherapy treatment has been going well - I can imagine it has not always been easy for you going through treatment for 3 years and dealing with a lot of traumatic experiences and all the operations and infections. It is a lot to have to endure and I hope you haven't suffered too much from the side effects. 

    It is hard to constantly stay positive when dealing with this type of cancer and prolonged treatment. You have come to the right place though to meet others who can truly understand what you are going through and sometimes even though we are surrounded with supportive friends and family, we want to talk to someone else who really gets it for the simple reason that they are going through a similar journey themselves. I hope that you will find others on here who are living with leiomyosarcoma cancer and that you will be able to share experiences. I did a little bit of digging around the forum looking for threads that might be of interest to you and I found  's uterine leiomyosarcoma thread from last year which you are welcome to respond to if you wish to do so and  also posted a thread on metastatic leiomyosarcoma and more recently  posted this thread about being diagnosed with stage 4 leiomyosarcoma - these are just a few examples which I hope you will find interesting to read and potentially engage with. 

    Hopefully someone who has had direct experience of living with leiomyosarcoma will be along shortly to share their story with you and I hope that it will help you to talk to someone else on here who understands what you've been going through in the last three years. 

    Best wishes, 

    Lucie, Cancer Chat Moderator