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A MUM who spent 20 years trying countless creams for her ‘eczema’ was shocked when doctors told her she had been living with a rare type of blood cancer.
Vivian Neil first noticed the itchy rash across her body in her early 20s and says doctors always told her it was eczema.
Vivian Neil first started to get a rash when she was in her early 20s and doctors said it was eczemaCredit: Jam Press
What both doctors and Vivian thought was eczema spread all over her body (Vivian’s legs pictured above)Credit: Jam Press
The patches spread all over Vivian’s back and progressively got worse over the yearsCredit: Jam Press
The 43-year-old was given a range of different creams to help and would try and wear clothes that covered the patches.
Mum-of-two Vivian said: “The doctors always thought it was eczema but now, with the diagnosis, they realised that it was the cancer all along,” Vivian told Jam Press.
“It steadily got worse over the years but it is so hard to diagnose. I lost count of the different creams I have been given over the years.”
Vivian, who lives in Dunfermline, Scotland said as the patches spread it also impacted her confidence.
“If I was wearing skirts or dresses, I always wore tights. I never ever showed my bare legs as they were the worst.”
But when one of the patches turned a ‘browny colour’ in February 2018, Vivian began to worry and decided to book in to see her GP.
Her doctor was concerned with the changes and Vivian was referred to a dermatologist at Queen Margaret Hospital for a biopsy.
The test revealed she was living with mycosis fungoides, a variant of a blood cancer called cutaneous T-Cell lymphoma.
She said: “I was in complete shock when I got told I had cancer and then to be told it was a rare incurable blood cancer.
“It took me a long time to come to terms with it.
“When you hear cancer you automatically think the worst and I thought my life was over in my 40s.”
While the cancer is not terminal unless tumors grow on the patches, Vivian will live with the cancer for the rest of her life.
She will be monitored and her symptoms managed and doctors have said she could live for up to another 30 years.
What is Mycosis fungoides?
Dr Fiona Child, consultant dermatologist who treats patients with Mycosis fungoides explains.
Mycosis fungoides is a rare type of T-cell lymphoma that involves the skin.
It can occur at any age but is most frequently diagnosed after the age of 50 years.
It often mimics other conditions such as eczema and psoriasis and therefore diagnosis can sometimes be delayed.
It usually presents with dry, scaly patches of skin that may have irregular shapes.
The patches may develop into thicker lesions, known as plaques, and sometimes nodules or tumours may occur, which can break down to form painful ulcers.
In a small number of patients, the skin may become red all over.
Although it is a lymphoma, in the majority of people it is an indolent disease, does not spread beyond the skin and is associated with a normal life span.
However, in a minority of patients it can become more aggressive and ultimately spread beyond the skin.
In those with very widespread disease, where the skin barrier is damaged, there may be an increased risk of significant and life-threatening infections.
The aim of management is to improve symptoms and control the disease as there is currently no cure.
Treatments can clear the rash, but it usually recurs. In the early stages, skin directed therapies are favoured and include topical steroid creams or ointments and phototherapy (ultraviolet light therapy).
Low doses of radiotherapy may also be used for individual lesions and can be used to treat the whole skin surface (total skin electron beam therapy) in those with more widespread disease.
If skin directed therapies fail to control the disease effectively, other treatments may be needed which can range from immunotherapy (drugs which encourage the body’s immune system to fight the lymphoma cells) to chemotherapy.
There are also a number of targeted antibody therapies currently in development or being assessed in clinical trials.
Many research groups from around the world are working together to understand the causes of mycosis fungoides and why it behaves more aggressively in some patients.
The ongoing research will lead to more effective management strategies and improved outcomes for our patients
She said: “This cancer is classed as a lazy cancer but knowing that tumours are very possible is still very scary. It is always in my mind.”
In 2019 she was given UVB light treatment but had a severe allergic reaction and was waiting to start an alternative called PUVA, which involves taking a drug called Psoralens (P) and then exposing the skin to long wave ultraviolet radiation.
Sadly her appointments were cancelled due to the coronavirus pandemic and she was told it would be monitored until after the pandemic.
At the start of 2021, her skin was getting much worse, with patches covering 90 per cent of her body, and although the light therapy could not go ahead, she was offered a chemotherapy tablet called Methotrexat which is usually used for arthritis as it reduces inflammation.
“It did help with the inflammation on my skin but it made me feel absolutely awful.
“I took six tablets a week and it made me feel extremely nauseous, I had severe headaches, extreme fatigue, hair thinning and swollen and bleeding gums.
“I also had to have my bloods checked every week as the Methotrexate can damage your liver”, she said.
Vivian knew she was at risk of losing her hair and decided to shave it off before having treatment.
She said: “I did it to raise funds for Peacock in Pittencreiff Park where I volunteer as Assistant Peafowl Warden as I wanted to make a positive out of a negative and we raised £1800.
“I went into a very dark deep depression for about six months at the beginning of 2019 as I had an operation in my back as well to fix my sciatica.
“The Peacocks in Pittencreiff Park saved me. The birds were my therapy and also the volunteers have been amazing with me.”
Sadly, the chemotherapy didn’t work as well as doctors hoped and Vivian was offered a type of radiotherapy called Total Skin Electron Beam Therapy at the Freeman Hospital Cancer Centre, Newcastle.
She is being treated as an outpatient, which has come at great expense with Vivian having to pay for both hotels and travel costs.
She travelled to Newcastle earlier this month and will stay for two weeks.
She has been raising money to fund the extra expense but says that any money left over will go back to Peacock in Pittencreiff Park.
She said: “So far, I’m starting to feel tired, sicky and my skin is so sore and extremely itchy.”
“I am never one to ask for help. I am always the one who offers help but I felt I had no option to raise the money that I needed to travel to get my treatment.
“I was completely overwhelmed with the response I had. It actually reduced me to tears seeing how generous people were.
“I have not had the easiest life for the last four years old and it just amazes me that there are lovely people out there that will do that for someone.”
Vivian is hoping this treatment will reduce the patches that are over 90 per cent of her body and slow down the progression of cancer.
“Doing so will give me a better quality of life by reducing the fatigue, itchiness and confidence in my body that I have not had in a long time”, she added.
Vivian said she knew she would lose her hair and decided to shave it off firstCredit: Jam Press
Vivian has been having various treatments to help with the condition and is currently an outpatient in NewcastleCredit: Jam Press
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