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July is Sarcoma Awareness Month

3 replies

Decoart · 30/06/2024 15:04

Hi
July is Sarcoma awareness month.
On the Teen Cancer Trust where my DD is treated I would say 50% or more have Sarcomas and many primary bone sarcomas. These are rare cancers in the general population but not among teenagers and children.
The story is the same, children in pain for months sometimes years, being dismissed as sports injuries or just a lump or bump. This means many are diagnosed too late. GPs are not aware of NICE guidelines for fast track system in place for suspected sarcomas in teens and children. My DD was in such pain but it was over 4.5 months for a diagnosis and the cancer has spread.
The treatment for these cancers such as Ewing Sarcoma and Osteosracoma uses drugs that are over 50 years old. Most cancer research funding goes to older Adult illness and our young people who have had no life are left to die. It shouldn't be a competition for resources but sadly it is.

Could Mumsnet team up with Sarcoma UK and the Bone Cancer Research Trust to do pinned post on awareness this month? It is likely too late for my DD but if it helps just a few children getting an early diagnosis and surviving it is worth it.

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ThisIsClearlyMe · 30/06/2024 15:10

I'm so sorry about your DD, I hope she is one of the lucky ones. We lost my cousin to synovial sarcoma, it was horrific.

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DawnMumsnet · 02/07/2024 12:03

Hi @Decoart thanks for raising this.

We're so very sorry for what your DD is going through. We're getting in touch with Sarcoma UK to see if they can collaborate with us to help raise awareness.

We'll come back to the thread as soon as we have an update, but in the meantime we're sending good wishes from all at MNHQ.

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Decoart · 02/07/2024 16:14

Thank you. Vina at The Bone Cancer Research Trust is also amazing and work with Sarcoma UK. My daughter has Ewing Sarcoma which is a primary bone cancer and Osteosarcoma is also a primary bone cancer.

Two families raising money after losing their children to sarcomas bone and soft tissue are:
Love Beth
Just George
Leah Smith the famous Tik Tok teen star from Liverpool died in March this year from Ewing Sarcoma.

Anything you can do to raise awareness is fantastic.