Richard’s Story: Living with CTCL


Meet Richard. Six years ago he was diagnosed with cutaneous T-cell lymphoma (CTCL), a rare condition in which malfunctioning T cells result in uncontrolled skin growth that appears as patches of red scales or thickened plaques. It sometimes involves tumour growth and can involve the lymph nodes and internal organs if it reaches an advanced stage.

Interviewed by CSPA Board member Preet Bhogal

Tell us about yourself and where you live. I’m 40 years old and live in Toronto. I work in the finance industry and have a wife and three kids.

How long have you been a CTCL patient? I was diagnosed about six years ago, but probably had the condition for three or four years before being diagnosed.

How does it affect your daily living? It doesn’t affect my daily living significantly. I get occasional rashes; I use creams I get from the doctor. At one point I went for light treatment three times a week for a half hour— that was a bit of a hassle, but not really a big impact.

How does CTCL affect your personal relationships? At first there was a high stress level around the initial diagnosis because of the shock of a cancer diagnosis, but now that we know more about it the stress level is much lower. It is more of a chronic condition that needs to be managed.

Have you ever been on the receiving end of comments about your condition? It’s not very obvious. Rashes occur mainly on my hips and arms, so I’m very fortunate.

What kind of education have you received on effective management? I was very lucky to have access to the Phototherapy and Education Research Centre (PERC) at the Women’s College Hospital in Toronto. They were very helpful, and once I learned more about the condition it became manageable. The Cutaneous Lymphoma Foundation (CLF) was also very helpful [see page 21 for more information on this organization]. I actually became a volunteer with the CLF.

What steps do you take to manage your condition? Vigilant monitoring and regular check-ups. I see my doctor at least once a year.

What kinds of support help you most? Access to doctors with experience— and the doctors on the advisory board of the CLF—helped the most because this is a rare condition. CTCL is often diagnosed as eczema, so having specialists that are familiar with the condition is a big help.

What kinds of support do you wish you had? I really don’t feel like I’m missing anything because I’m lucky enough to be living in a major city like Toronto. I have access to PERC. It’s more convenient than if I lived in a rural area and had to travel or did not have access to the doctors that I do.

What would you like people to know about being a CTCL patient? The initial stress, worry and shock will subside—and rarely does it become life-threatening for the vast majority of patients. It is a manageable disease. As time goes by you learn to deal with it. The CLF is a resource.

 

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