Ellie shares her experiences with the rare disorder cutaneous T-cell lymphoma (CTCL)

What is cutaneous T-cell lymphoma (CTCL)?

I have a rare condition called CTCL. It has two parts: a blood malfunction that manifests itself in my skin, like psoriasis with very sore skin; and it also feels like having flu. At this point people usually say: “I bet that’s awful”. Then I know that they understand my situation.

People ask me: “your skin looks sore, what does it feel like?” I explain: “have you ever had a carpet or gravel burn or bad scrape? Imagine a paper cut and how irritating that is...but it’s on your entire body.”

Can you describe your path to diagnosis?

For several years, I had skin conditions, which were treated as psoriasis and eczema. Then I was diagnosed with Hodgkin’s lymphoma. When treated for this with chemotherapy, my skin condition cleared up. When the skin condition reappeared later, my GP saw that it may be something else and I was referred to a dermatologist who diagnosed CTCL.

It was a long journey: from my first skin problems in 2004, to diagnosis in 2010 and transfer to my current consultant in 2014. I was in a grey area for almost ten years.

How did you cope with your diagnosis?

I was confused. In the beginning they called it Mycosis fungoides. I asked “...what’s that?” and the dermatologist responded that it’s a form of cancer not in your skin, but in your blood. That totally confused me as I didn’t understand what they were saying. I kept seeing a dermatologist and it wasn’t until much later that I met my current consultant who explained that I had CTCL, a rare cancer.

During this time, my husband was my main support. He works as a formulations chemist and so he did a lot of research with me. My consultant, Dr Richard Azurdia, has been absolutely key to changing my life with CTCL. My family, friends and work colleagues are understanding. With this strong support, I feel I’m well placed compared to many others with CTCL.

What have you been told about your prognosis?

I have been told that it is not curable but they can treat the symptoms.

What treatment have you received?

My treatment journey started with topical creams and GP appointments with no referrals. After my diagnosis with Hodgkin’s lymphoma, the chemotherapy had a positive effect on my skin condition and we tried many different medications over several years.

Side effects stopped some treatments, as I’m hypersensitive to many medications. To date, we have not been able to find an effective treatment as I have not been able to tolerate most of them. I have undertaken lots of radiotherapy – full body electron beam therapy, localised ‘spot welding’ and UV light box. However, because I’m in my mid-50s, radiotherapy cannot be done indefinitely as it puts radiation in the body.

Treatment options are very limited to me now, with only chemotherapy or radiotherapy unless something new comes on the market, such as injectables. I’ve tried everything else and I have been informed that I have now reached the end of all the available possibilities they can try on someone with CTCL.

How does the disorder affect your day-to-day life?

It depends at what stage the condition is. If I am having an ‘episode’ where my skin is very bad, that affects my life massively, due to pain and presentation on the skin.

I love swimming and go four times a week, but at certain times I can’t for two reasons: I can’t bear the presentation of it in public, and during these times, it makes my skin very sore. I also have pain like arthritis and joint pain. This situation affects my well-being and emotional state and I go through periods of feeling incredibly low and apathetic. It makes you ask yourself, “what’s the point?”.

I see my life in cycles and hope that my situation will be better at the end of this treatment in three months’ time. With CTCL, you live your life in chunks of time – good and less good moments.

What keeps me going is the hope that I will get through this situation and back to more normality in my life. For me, normality is to be able to pursue my interests and wear what I want. For example, when CTCL is aggressive, you can’t wear clothes that irritate the skin.

My life is fantastic in every other area and I won’t be defined by this condition. When I am not in a lot of pain, CTCL is a part of my life that I put in a box and put to one side.

What would you say is the greatest challenge living with this disease?

Every time I am in a new care situation, I have to explain to people in the profession my entire backstory. This happens frequently and is frustrating.

If I visit a GP or specialist outside my centre, I need to explain my situation from the beginning. We stopped a medication that was ineffective, I had to explain the whole story to the pharmacist.

I tell few people that I have CTCL because it is a nightmare to give the full explanation to everyone you meet. No one knows what it is – even doctors, GPs or specialists.

Whenever I go to an appointment where they look at my condition, the doctors ask their colleagues to come in because this is not something that anyone has ever seen. I think more information and materials are needed to explain CTCL to people.

Are you satisfied with the medical care you have received in the UK?

Initially, they did not do many things well as it took so long for me to get to diagnosis.

Since diagnosis, things generally went well, apart from one issue in 2008-2010 when communication broke down between two hospitals, leaving me stuck in the middle. From 2010, my clinical team did amazing work: keeping me informed, updated and putting together treatment plans with me. This good situation is because I moved to the cancer services treatment centre.

I am now assertive on what I want. I told the team that I am not going anywhere else. I am in control of this situation now and will stay in this service. If they propose to refer me to another service, I will tell them I will stay here with this team.

Do you think the information available to the public on CTCL is adequate?

Today, there is so little information about CTCL and people living with the condition that I have actually become the specialist.

I gathered information on CTCL with my husband. We researched it on the internet, which I know is not always the best place to look. When I was first diagnosed, I was told: “we have information somewhere, but don’t know where it is because we’ve never had to give it out before”. So, we decided to look at CTCL issues for ourselves.

When I was diagnosed, I had never met anyone else with the condition. If you search the national cancer group websites, there is no information on CTCL. They discuss blood and skin cancer but not CTCL itself.

What advice would you give to someone newly diagnosed?

For people and those working in healthcare services: find someone like me who can articulate what it feels like in plain language, for others to appreciate what it’s like to live with CTCL day-to-day.

We talk about patient journey. The journey for others living with CTCL is not so different from mine. Whether you live here in the UK, in Australia, Spain or anywhere else, you will have similar symptoms.

As CTCL is multifaceted, the best approach is to have a lead consultant as your primary contact, who links to other specialists. Cancer care centres are the best place for CTCL patients.

Have you ever taken part in any clinical trials, if not – would you consider it?

No I haven’t but I would be prepared to.