Leiomyosarcoma - LMS Research UK

25/07/2025

We love this cute video!
Our fundraisers are a trustworthy lot. How did our “Purple Day” fundraising heroes ensure the winners were picked fairly?

24/07/2025

Personal stories of Leiomyosarcoma are powerful. Do you have your own story regarding LMS that you’d be willing to share on social media? Or would you like to comment on a specific aspect of your journey - for example - your diagnosis, your treatment plan, or how you cope with scan days? Your stories can be shared anonymously if preferred.

We are also looking for UK based patients or carers who are willing to talk to the media on behalf of LMS Research UK, to spread awareness of LMS and help raise the profile of our new charity. Could this be you?

Please get in touch via PM if you would like a chat about either of the above.

Thank you! The LMS Research UK Team

22/07/2025

Men get Leiomyosarcoma too!
“Elements of my story that I am sure will resonate with many fellow LMS patients – misdiagnoses, mis-recording of details, being passed between various medical units – but currently NED so, so far so good.
My story started in January 2020 when I noted a small lump on my upper right arm and saw my GP whose notes reflect the lump being “about 5 – 6 mm raised nodule, no active inflammation, non-tender, no signs of infection”. The GPs notes also include “Reassured. Review if starts becoming red, big, pus or any other changes”
In September 2021 I had a further GP appointment as the lump hadn’t changed but hadn’t gone away. This was a telephone appointment due to Covid restrictions. From the photographs I provided (which included a coin for scale), the GP concluded the lump was a “2 – 3 cm cyst” and referred me to a local Dermatology clinic. Note this recorded increase in size from 5 – 6 mm to 2 – 3 cm is nonsense. The lump hadn’t changed size in the intervening 18 months or so.
In October 2021 the Doctor at the local Dermatology Clinic took no more than 10 seconds to look at the lump using a magnifying torch to diagnose Basal Cell Carcinoma for which excision was scheduled for January 2022.
In February 2022 the results of the biopsy of the lump confirmed LMS but because “completion of excision at the deep margin cannot be confirmed” I was referred to a Plastic Surgery Clinic whose records indicate I needed “a wide local excision with 2 cm margin and follow up for 2 years”.
In March 2022 the wide local excision was completed with results showing “no residual LMS is seen”.
I then had a series of regular follow-up appointments at the same hospital in either their Dermatology or Melanoma clinics. There seemed to be no pattern as to why I was assigned to which clinic for any given appointment.
It was around the summer of 2022 started educating myself about LMS and the importance of regular scans and during an appointment in September that year at a Melanoma Clinic I asked to have a schedule for scans. The Doctor advised they don’t do scans for LMS patients. Having researched the best place and best Doctor for looking after folks diagnosed with LMS I set about having my care transferred to being under Professor Robin Jones at Royal Marsden, Chelsea and this move completed in February 2023. I now undergo regular (started with quarterly, now reduced to 6 monthly) Chest, Abdomen and Pelvis CT scans with contrast.
Between my 1st GP visit in January 2020 and being under cover of Royal Marsden just over 3 years later I saw 11 different Doctors – I never saw the same one more than once. Now I am at Royal Marsden it is immensely reassuring to have a consistent and familiar routine meeting the same faces who have a detailed and comprehensive understanding of both me and my history and the disease.
I am convinced that there is a cure for LMS and that medical science will unearth it. The solution may not be found tomorrow or next week but without research it will remain hidden. This is why I am proud to be a part of LMS Research UK.” Colin, Trustee LMSRUK

20/07/2025

“Dr Arthur’s Bill aims to boost research by removing barriers and paving the way for new ways to incentivise the drug companies. It will place a duty on the Secretary of State to promote research into rare cancers,; it will increase patient access to clinical trials by making it easier to register and by building a central database of willing patients; and it will instigate a review to explore how pharmaceutical companies could be encouraged to trial existing drugs used for other types of cancer to treat rare cancers, or when they are trialling new drugs on more common cancers to trial them on rare cancers too.”
Thank you Dr Scott Arthur MP - from all of us in the community.

It's not every MP who finds themselves piloting legislation through the Commons within their first year in the job.

19/07/2025

Nearly 450 days!!!
Doing my daily mile for Leiomyosarcoma - LMS Research UK…. Decided I would do it first thing in the morning to take in the fresh air and soak up the good sun rays.

Currently at £2802 of my £5000 target. Have been going since May 4th 2024.
I’m still going and not planning to finish until I reach my target 😉

Help maisie england raise money to support Leiomyosarcoma Research UK

18/07/2025

Fundraising is as individual as you are.

Which category below is your fundraising style?

- Culinary Creative: Host a curry night, bake sale or pot luck dinner.

- Adrenaline Ju**ie: Skydive, abseil or bungee jump.

- Deprive yourself: Give up cheese, chocolate or talking!

- Endurance challenge: Complete an ultra marathon, triathlon or a gaming challenge.

Whatever you decide to do, we’re on hand to support you. We are a small, volunteer run charity with low overheads, so you can be sure your fundraising will go directly to Leiomyosarcoma research and education, such as our LMS Pathfinder Project (details in the comments). Thank you! 💜

18/07/2025

SCANXIETY
A word every cancer patient knows. How do you manage it?
Colin, LMSRUK Trustee, attending his latest scan at the , accompanied by our mascot (more on Penny later 🥰)

17/07/2025

"Supporting my amazing sister on her bucket list walking challenge means the world to me.
We got to spend precious time together, enjoyed the gorgeous scenery, and we’re raising funds and awareness for a cause that means a lot to us both.”

A St Albans woman has walked the Northumberland coastline to support her sister who has been diagnosed with incurable cancer.

17/07/2025

The sun has set for 2025, but we will continue to raise awareness and funds to improve outcomes for Leiomyosarcoma patients. A HUGE thank you to every single person who has supported our small - but growing - charity, so far. Every like, share or donation really does make a difference 💜
We extend a warm welcome to all our new followers - it’s lovely to see you!

15/07/2025

Just for fun and to wrap up Leiomyosarcoma Awareness Day, one of our younger followers has set us a challenge! Can you find the LMSRUK ribbon in all 5 pictures? Please comment when you’ve found them.

15/07/2025

One of our younger supporters sporting a purple swimming hat to raise awareness on 💜💜💜