Leiomyosarcoma - LMS Research UK

22/09/2025

“For Kate, this wasn’t just about the scenery. After being diagnosed with stage 4 uterine Leiomyosarcoma, a rare cancer, she decided to walk while she could - raising funds and awareness for the only UK charity dedicated to researching the disease.”
Thank you for sharing Kate’s story Macs Adventure

🌟 Meet Kate 🌟

Kate has always loved walking - from the rolling hills of Shropshire where she grew up, to the faraway trails of the Andes and Tasmania. But this year, she and her sister Susie set out on a journey closer to home: the wild Northumberland Coastal Path.

For Kate, this wasn’t just about the scenery. After being diagnosed with stage 4 uterine Leiomyosarcoma, a rare cancer, she decided to walk while she could - raising funds and awareness for the only UK charity dedicated to researching the disease.

Over sweeping beaches, under castle shadows, through long days and tea breaks, Kate and Susie discovered not only the beauty of Northumberland but also the power of shared time and purpose.

This is Kate’s story of courage, sisterhood, and finding joy in the moment.

👉 Click to read Kate’s full story: https://zurl.co/KatesStory

22/09/2025

Leiomyosarcoma Research UK is making strides to ensure LMS research in the UK is joined up. We created the UK’s first LMS network of experts; The LMS Pathway Network. Members include Sarcoma Oncologists, Research Clinicians and LMS researchers from around the country. Plans include setting up a virtual LMS tissue bank, meaning researchers across the country will have access to this important data set. Your donations directly help projects such as these. As a small, volunteer run charity we have very low overheads, meaning your donations go further. Thank you for your support!

20/09/2025

Today is World Gynecologic Oncology Day. Let’s get rid of stigma!
Whilst Leiomyosarcoma can form anywhere in the body, the most common primary tumour is in the uterus (uLMS). This cancer is so rare it is often left out of discussions on gynaecological cancers. We’re here to raise awareness of leiomyosarcoma in all its forms. Our LMS Pathway Network will be looking at diagnostic pathways, ultimately aiming to shorten times to diagnosis by increasing awareness of this aggressive cancer amongst healthcare professionals and the public.
If you have had a diagnosis of uterine leiomyosarcoma please feel free to add your experience of diagnosis in the comments.

18/09/2025

This is a topic that seems frequently ignored in discussions about cancer treatment side effects. Thank you Menopause and Cancer Support for launching the first

18/09/2025

“My story began on 30 May 2024 when I was showering and discovered a lump in my “nether regions”. “Weird” was my first thought - where has that come from?? I took myself to the doctors the next day and she sent me to the gynae ward at our local hospital. Most people there were puzzled by this lump and its sudden appearance - they thought a Bart cyst but it didn’t seem like it normally would. Anyhow, after everyone and their granny examining me, it was decided it WAS a Bart cyst and the doctor proceeded to cut me and squeeze out the golf ball size mass. That, I thought, was the end of it- but then I received a call from the hospital asking me to go in. I knew immediately - but nevertheless wandered in by myself - to be told I had cancer. When I asked what kind, the doctor said soft tissue and that I’d have a tough few months ahead. I was sent for a CT and MRI scan and back to the gynae doctor for results. By this point, which was a couple of weeks later, the lump had reappeared and was growing out of my body making it difficult to sit (think piles at the front but larger 😱). The doctor told me it had spread from my womb to my lymph nodes and it was now in my lungs. There was nothing they could do for me, so I was referred to Oncology.
I discovered that the leiomyosarcoma cancer had started in a large fibroid. I knew about the fibroid and was being monitored by my GP as I was bleeding a lot, but was told that’s menopause. It wasn’t and so of course the cancer had spread. I was with my hubby and had honestly felt ok re cancer until then, but knew I was in trouble and nearly passed out. At the first meeting with oncology they agreed to do radiation on the tumour that was “protruding” as it was getting larger and larger and walking was even becoming an issue - sorry everyone for the graphic images!!!! 😜.
I was also told to get my affairs in order, that I only had months to live. The devastation that I saw on my family’s face was awful - I felt worse for them than for me - it’s cruel. My twin daughters were 19 at the time and I would have done anything not to have put them in that situation. So I had 10 rounds of radiation to reduce the mass and it worked - yippee!!!
I then had 6 rounds of Doxorubicin and Trabectadin from Nov 2024 which showed stability and some shrinkage. I moved onto maintenance chemo of Trabectadin, but unfortunately that’s not working, so I’m starting Gem:Tax. I believe this can be quite tough, but I’ll embrace it and let it work its magic on the wee buggers inside me!
Since my diagnosis I have cashed in my pensions and lived life to the fullest I can - holidays - meals - family time - friend time - just grabbing life with both hands! My daughters encouraged me to start a Tik Tok page to document my journey and it is quite therapeutic. I generally feel really well and luckily have no pain since my outside tumour disappeared.
Chemo can be tough and I get a sore tummy and I’m tired, but I’m here so I’m lucky. My family is always wanting me to look for alternates and I will and I am. I intend to be here for as long as possible and do my affirmations morning and night to reaffirm that. Although it’s rotten, I’m really lucky as have a brilliant and huge family and a great circle of friends so the support and love has been incredible. I used to worry about things - now I don’t. I’m impulsive now! I recently bought a puppy and a campervan and today I’ve just booked a weekend to Rome with one of my daughters. I’m living my life and making memories - none of us know how long we’ve got. I’m so happy I’m here now!! Sending love & hugs to you all!!” Gail, UK 🥰❤️😍

16/09/2025

16/09/2025

Our 500th mile for Leiomyosarcoma - LMS Research UK

THANK YOU TO EVERYONE WHO HAS SUPPORTED US!

16/09/2025

Join Maisie live at 7pm to celebrate her final mile of
Our Chairperson has been walking EVERY DAY for 500 days, often bringing family, friends and dogs on the journey. Motivated by the urgent need to improve outcomes for Leiomyosarcoma patients she’d love you to show your support by;
a. Donating whatever you can afford if you are able (every £1 makes a difference!)
b. sharing these posts. Link to fundraiser in comments.
Thank you and tune in at 7pm!

14/09/2025

Hi, I’m Maisie to all those who don’t know me. My family and I have been walking a mile every day for 498 days so far to raise money for LMS Research UK. Here is today’s fun post.

A picture is worth a thousand words….
This is Sunday 14th Sept 2025…. Two days before the final day of 500miles.

Today yet again has been a very busy day.
The husband is not impressed. He’s been ill in bed all weekend, it’s cold, wet and windy. It is also 10pm as we set out to do our Daily Mile!

Literally feeling exhausted from doing this every day. Two more days and we finish. Yay!

I’m still 100% glad to raise money for Leiomyosarcoma - LMS Research UK and super proud of our achievement so far. There are so many amazing things planned for the use of the money raised by the charity.

Keep the cheering on coming…. This is the final stretch of our journey…. Pass us the jelly babies to keep us going :-)

https://www.justgiving.com/page/maisie-england-1734164015874?utm_medium=FR&utm_source=CL

13/09/2025

5 more days to go!!!! I complete 500miles on Tuesday where the challenge will come to an end!I’m now at £3477 and was hoping to get to £5000 by my 500th day. Please can you help me get to my target for Leiomyosarcoma - LMS Research UKThank you xhttps://www.justgiving.com/page/maisie-england-1734164015874?utm_medium=FR&utm_source=CL