Merkel Cell Carcinoma: the hidden skin cancer
22 June 2016
As a teenager, Marjorie hated being fair and remembers spending a lot of time in the sun. When she grew up, she quickly learnt the dangers of UV exposure and became accustomed to noticing and investigating moles on her body, always on the look-out for melanoma.
"Over the years I've had many of what I would call fairly standard skin cancers - BCCs and squamous - but I've never had a melanoma. Then last July I got what was initially diagnosed as a squamous on my lower left leg. When it started behaving differently and getting a lot bigger, I became anxious," she recalls.
"That's when I first heard of Merkel cell carcinoma. It was completely new to me and my family and friends."
In the months following her diagnosis, the 77-year-old underwent several surgeries and radiation therapy to remove tumours but the carcinoma metastasised quickly and more tumours appeared. Unable to be treated with more radiation in her case, Marjorie is now under the care of district nurses who come regularly to her home.
Shocked by the aggressive nature of merkel and the lack of information and advice to help others spot this potentially fatal cancer, Marjorie is sharing her story to encourage others to not ignore anything that suddently grows or changes colour on their body.
Only formally recognised in the early 1970s, Merkel cell carcinoma is a rare and deadly type of skin cancer. It's incidence is 30 times less common than melanoma. Without any particular features, it can be hard to diagnose.
"Many Merkel cases resemble black moles and may look benign, but they actually act very differently to other skin cancers, " says Dr Alex Guminski (pictured), Medical Oncologist from MIA.
"Merkel cell carcinomas are quite aggressive and have a high risk of spreading."
Because of the rarity of the cancer Dr Guminksi explains there is still debate around the cause and treatment pathways. Sun exposure is believed to be a cause, and in the last 10 years, a virus known as the polyoma virus, has also been linked to Merkel cases. However, with limited samples, there are no big clinical trials to guide treatment and management, and referral pathways can be complicated. This may be one reason Marjorie had difficulty finding out more about the nasty cancer.
"Merkel cell carcinoma is relatively uncommon. Even the clinicians who see a lot of them don't see a lot them," Dr Guminski explains, adding that it's very difficult with rare diseases to get access to new treatments.
"But with our aging population, incidences of Merkel cell carcinoma are slowly rising and pathologists are getting better at recognising this particular cancer. This is generating more interest in the disease, which we hope will lead to more research and knowledge."
An immune therapy clinical trial for patients with Merkel cell carcinoma that has spread to other parts of the body is planned to run later this year at Royal North Shore Hospital.
If you have a mole that has changed colour, shape or size in any way, don't ignore it. Visit your GP for an examination.