Supporting patients living with chronic cancer

Susan Thornton's story

 
Video narrated by Susan Thornton, Patient and
CEO, Cutaneous Lymphoma Foundation

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I’ve been living with cutaneous lymphoma for more than 25 years and it took me at least the first 10 years to really wrap my head around it and to be able to live with it.

It’s a rare lymphoma—a blood cancer—that affects the skin. It’s unusual in that it looks like psoriasis or eczema, and in most patients it is very treatable and does not progress beyond an early stage. You often hear that this is a disease you will die with versus a disease you will die from.

And yet it is challenging to treat; there’s an art to finding the right treatment at the right time. I am in a small percentage of people whose disease progressed and became very aggressive and life threatening - I’ve been in and out of a variety of different treatments. You might go back to a treatment that didn’t work previously or did work and then stopped.

Because the disease is chronic, there’s a massive emotional component that no one really talks about. Living with a chronic disease—especially a cancer—has had a huge impact on my quality of life. Having a community of medical professionals and fellow patients is invaluable, and patient advocacy has blended from my personal into my professional life.

Dr. Stuart Lessin treated me for nine years. It’s really critical to work directly with someone who understands the disease, has seen a lot of it, and is staying up to date with new treatments. It’s been so important to have a strong relationship with my dermatologist—it has enabled us to manage the disease so I can live a productive life.

The Dermatologist's perspective

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When I met Susan, she had already been through a remarkable journey battling this chronic recurrent disease, but it never sidelined her. Together we worked on her treatment plan, and all the while she was involved in patient advocacy. It struck me that an important part of treatment for patients is preventing isolation and creating a community that understands and supports patients. Realizing this prompted me to become very active in patient advocacy groups as well.

– Stuart R. Lessin, MD
Medical Director, KGL Skin Study Center

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