A new white paper has been published by Epithelioid Sarcoma Collaborative, addressing the challenges of those with this rare type of cancer. Currently, there is very little awareness of this type of cancer, mostly known to affect younger adults.
So, what is Epithelioid Sarcoma, what challenges do patients face, and what solutions did the white paper reveal? Find out everything you need to know below…
What is Epithelioid Sarcoma?
Epithelioid Sarcoma is a very rare form of slow-growing cancer. It affects the soft tissues, usually beginning in the hand, finger, forearm, foot, or lower leg. Starting out as a single painless lump, it often develops into multiple lumps by the time patient’s see their GP.
Occasionally, this type of cancer can present as ulcers that don’t heal. It tends to mostly occur in adolescents and young adults. There is an even rarer form of Epithelioid Sarcoma that mostly affects adults. This is known as large-cell Epithelioid Sarcoma.
While it starts out in a single location, it can spread to other parts of the body. It also has quite a high recurrence rate. Due to how rare this form of cancer is, it is better to seek help from an Epithelioid Sarcoma specialist.
What challenges does it present?
Patients with Epithelioid Sarcoma face a lot of challenges compared to those diagnosed with more common cancers. The main challenges include:
- The time it takes to receive a diagnosis
- A lack of awareness of the cancer
As Epithelioid Sarcoma is slow-growing, you often won’t realise there is something wrong until the condition progresses. When you do start to recognise the symptoms, it can be difficult to get a correct diagnosis.
As, it may be difficult to diagnose, in particular for primary carers, you should see advice if you have any of these symptoms: a lump that is 5cm or bigger (the short side of credit card), rapidly growing, deep, painful or recurrent
There is very little awareness about this type of cancer. While it may be rare, awareness does need to be raised to ensure patients get the help they need in a timely manner. While Epithelioid Sarcoma is slow-growing, it will spread to other areas if it isn’t treated.
These are the main challenges patients face when getting diagnosed and treated for this rare form of cancer. When it is diagnosed, there are effective treatment options available.
How is Epithelioid Sarcoma treated?
The recommended treatment option is a wide surgical resection. Marginal resection was once the preferred method, but it has shown to have a recurrence rate of 77%.
Wide surgical resection removes the entire cancerous area. It is recommended as a treatment option for cancer that hasn’t spread into the deeper tissues. In rare cases where recurrence keeps happening, the affected limb may need to be amputated. This will stop the cancer from spreading to other areas of the body.
Mr Myles Smith is an expert in the management of rare soft tissue sarcomas and is part of a specialist multidisciplinary team at the Royal Marsden Hospital (RMH). In fact, RMH Sarcoma Unit is one of the largest in the world.
If you are concerned about Epithelioid Sarcoma, call 020 7808 2785 to book a consultation with Mr Smith at the Royal Marsden Hospital. The earlier it is detected, the more successful treatment will be.