A fundraising champion from Chichester is celebrating hitting a £50,000 goal for Sarcoma UK.
Mel de Lacy was working as a physiotherapist when she received a diagnosis of sarcoma, a cancer that affects the connective tissues in the body. She had unknowingly been living with the disease for several years, due to a misdiagnosis of a fibroid sample taken during Mel’s hysterectomy. Mel is determined to help other women to achieve better outcomes and get the right care: “When I’m not walking and running, I’m busy campaigning for increased awareness of uterine sarcoma for all women diagnosed with fibroids. I’ve upped my campaign in a bid to make changes to the way gynaecologists approach the treatment of fibroids.
“My misdiagnosis was a pathological error; the pathologist failed to take adequate samples, failed to ask for a second opinion and failed to take care when making a difficult diagnosis.
“I believe this was due, in part, to the perceived low risk of Leiomyosarcoma (LMS), lack of information regarding red flag signs and absence of preoperative screening for sarcoma. I believe that, had the gynaecologist recognised worsening bleeding and a sudden increase in fibroid size as red flags, then the pathologist might have taken more care with his diagnosis.
“I was not told, at any time during a long history of fibroids and infertility, that there was any risk of malignancy. I had no idea that I had anything other than “just fibroids”. I had never been told that there was a small chance of LMS arising directly from an existing fibroid or what constituted “red flag signs”. I am a physiotherapist and was working in women’s health and I didn’t know the risks.
“I believe that, had I known that there was an underlying risk of LMS when my symptoms worsened suddenly, I would have been empowered to ask the right questions which may have alerted the gynaecologist resulting in an earlier, correct diagnosis.
“Preoperative screening is not currently used for sarcoma despite the existence of a valid Sarcoma Score from Japan that utilises age, serum LDH, MRI and advanced cytology. For some reason, probably due to its “rarity”, it has become acceptable for fibroids only to be biopsied postoperatively, meaning that the margin for diagnostic error due to lack of awareness and possible morcellation is greater. It also means that the risk of upstaging the disease by spreading the tumour into the abdomen is greater.”
Mel has been raising funds for both Sarcoma UK and Southampton Hospitals Sarcoma Fund, and is working to improve awareness of the disease through her campaign ‘Let Me Be Me’.
Mel’s fundraising campaign has involved many different events, including a charity 40th birthday ball (organised by friend Kerry Dutton) at Fishbourne Community Centre which raised nearly £6,000, a triathlon at Bishop Luffa School which raised £1,204.77, a netball tournament at Oakwood Prep School which raised more than £500, and a 100km walk from London to Brighton which raised more than £4,000.
This week (July 2-8) is Sarcoma Awareness Week. Mel’s fundraising campaign continues, and a sky dive and tandem bike ride are set to take place.
She said: “We are still waiting to do a team Spire Hospital Sky Dive (cancelled three times) and rescheduled for mid August. I have been given medical clearance to jump too! We are also planning a tandem bike ride of 100km on the Isle of Wight this summer if I stay well enough, and my husband, two triathlon friends and my sarcoma nurse specialist are doing a channel relay swim in 2020!
“I really still can’t believe the amount of continuing support from the community and take great strength from knowing that so many people out there care and want to help make a difference.”
Find out more at www.justgiving.com/fundraising/melsstory.