With any rare disease diagnosis comes a lot of questions. Sometimes it can be hard to know where to start. Here are some frequently asked questions (FAQs) so you can feel more confident taking the next steps in your CTCL journey.
What is CTCL?
- Cutaneous T-cell lymphoma, or CTCL, is a rare cancer that affects a type of white blood cells (T cells) in your body. Let’s break it down to understand more:
- C: Cutaneous. Related to or affecting the skin.
TC: T cell. A white blood cell that is part of your immune system—your body’s way of fighting germs.
L: Lymphoma. A type of cancer that affects the lymphatic system, which is part of your immune system.
What are the symptoms of CTCL?
- CTCL can be easy to mistake as a skin condition since the most noticeable symptoms appear on the skin. Overall, symptoms can include redness, rashes, plaques, patches, dry skin, and itching. But symptoms can be slightly different depending on the type of CTCL you are diagnosed with.
What is Mycosis Fungoides (MF)?
- Mycosis Fungoides (MF) is the most common type of CTCL. Symptoms on your skin will likely be the most noticeable, but it’s important to know that Mycosis Fungoides doesn’t always stop there. Many people with Mycosis Fungoides only experience skin symptoms at the beginning of their disease, but it is possible for the cancer to spread to other parts of your body. Finding the right treatment can help manage symptoms and slow the spread.
What is Sézary Syndrome (SS)?
- Sézary Syndrome (SS) is a less common, but more aggressive type of CTCL. People with Sézary Syndrome typically experience skin symptoms covering most of their body, but this cancer also affects the blood. Treatment can help manage symptoms and slow the spread.
Does CTCL only affect the skin?
- To understand CTCL, you need to look deeper than the skin. Although skin symptoms are hard to ignore, CTCL is a cancer that can also affect your blood, lymph nodes, and other organs in your body. Tracking your symptoms and regular tests will be important to fully understand how your CTCL affects you.
How can CTCL change over time?
- Although you probably first noticed CTCL on your skin, the disease doesn’t always stop there. Your cancer can change without you being able to see or feel a difference. It’s possible for your CTCL to spread to other parts of your body, which is why it’s so important to work closely with your care team to monitor your symptoms.
How can I track my CTCL symptoms?
- Start by paying attention to your stage, symptoms, and treatment side effects. Once you know what you’re looking for, you can track changes by keeping a journal, taking pictures, or even using our downloadable doctor discussion guide. There’s no right or wrong way to do this, just find what works for you!
What specialists help treat CTCL?
- During your CTCL journey, you will work closely with many healthcare specialists to give you the most comprehensive care. These specialists may include a dermatologist (skin doctor), a hematologist (blood doctor), and an oncologist (cancer doctor). These doctors will play a key role in your care plan along with the help of other medical professionals.
What tests do I need for CTCL?
- Regular testing will be an important part of your CTCL journey. It’s likely that your doctor already performed some tests to help confirm your diagnosis, so you may be familiar with what you can expect, such as physical exams, blood tests, biopsies, and scans. Each of these tests will help you and your care team track if or how your cancer is changing.
What can I do to prepare for doctor visits?
- Our number 1 tip here is communication. Your voice plays a huge role in your care! Be honest with your doctors, ask questions, take notes, and don’t be afraid to follow up. Learn about tips to help keep your conversations on track like bringing pictures, a log of your symptoms, or even our downloadable doctor discussion guide.
What are some different treatment approaches?
- While there is no cure for CTCL, there are different treatments that can help you manage your disease. These treatments fall into 3 categories: topical (directly applied to skin), systemic (works throughout your whole body), and combination (any 2 or more therapies). By working closely with your care team, you can explore different options or combinations of options to find the treatment that works best for you.
Are there chemo-free treatment options?
- Yes! There are a handful of chemo-free treatment options available. If you’ve tried a treatment that didn’t work or if your CTCL got worse while using it, don’t give up hope. Learn more about a chemo-free treatment option for CTCL.
How do I find a treatment center?
- By going to a treatment center, you have access to a full care team to manage your CTCL. There are treatment centers located throughout the United States where you can find a full care team all under one roof. Find a treatment center near you, reach out, and get started on finding your care team of experts.
How can I support my loved one during their CTCL journey?
- Caring for someone with CTCL can feel really overwhelming, but simply being there for them means the most. Try not to put too much pressure on yourself as you and your loved one navigate this new phase of your relationship. You can start by keeping open communication, lending a hand whenever you can, and staying informed on the latest CTCL information.
Are there organizations that offer support for patients with CTCL?
- Yes! Although CTCL is rare, remember, you are not alone. There are organizations that can help connect you with any information you may need. Plus, they can help you find opportunities to meet other people diagnosed with CTCL. Learn more about these organizations.
