Navigating My Diagnosis

Newly Diagnosed

Receiving a cutaneous lymphoma diagnosis can be overwhelming. Learning about the disease, how it's diagnosed, staged and treated can help to reduce anxiety when you're newly diagnosed. Being well-informed can empower you to live successfully with this rare disease.

Navigating My Disease

Which Type of Doctor Should I See and When?
Being diagnosed with cutaneous lymphoma can be a difficult time. Determining which physician (dermatologist, oncologist or hematologist) to work with can be confusing. Dr. Laura McGirt provides guidelines for choosing.
Navigating My Disease

OBTAINING A PROPER CUTANEOUS LYMPHOMA DIAGNOSIS
Uncommon diseases pose a number of challenges, including difficulty getting an accurate diagnosis. A definitive diagnosis will help inform treatment decisions and potentially yield better patient-related outcomes over time.
Answers from the Experts

Cutaneous lymphoma 101
Knowing where to start when you learn you have cutaneous lymphoma can be a challenge. Cutaneous lymphoma specialist Dr. Stuart Lessin provides an overview of the important information and concepts every patient with cutaneous lymphoma and caregivers should know.

Basics of Cutaneous Lymphoma - International Conference Recordings
The "Basics of Cutaneous Lymphoma" provides an overview of the diagnosis and treatment of the disease in a video format in English, Dutch, French and Italian languages. Presentations are also provided with captions in Dutch, French, German and Spanish. All of the presentations were originally given at the 2022 International Patient Conference.

Overview of Cutaneous Lymphomas Including Diagnosis & Staging
September 2020 - A discussion covering the topics of the immune system and how it relates to cutaneous lymphoma, how cutaneous lymphoma is diagnosed, and an explanation of the staging system for cutaneous lymphoma.
Navigating My Disease

Staging Cutaneous T-cell Lymphoma
Staging describes how much of the body is affected by cutaneous lymphoma and where. Identifying your stage is important in determining appropriate treatment.
Answers from the Experts

IMPORTANT QUESTIONS TO ASK
Becoming informed when diagnosed with cutaneous lymphoma is important, but knowing what questions to ask your physician can be a challenge. Our clinical experts provide their recommendations.
Physician & Patient
Patient Resources

Questions to Ask After Your Diagnosis
If you or someone close to you has been given a diagnosis of cutaneous lymphoma, you probably have many questions and concerns. You may not even be sure about what kinds of questions to ask. Having a prepared list of questions for your healthcare provider can help you get the information you need to make informed decisions.

Overview of Cutaneous Lymphomas Including Diagnosis & Staging
September 2020 - A discussion covering the topics of the immune system and how it relates to cutaneous lymphoma, how cutaneous lymphoma is diagnosed, and an explanation of the staging system for cutaneous lymphoma.
Navigating My Disease

Modified Severity-Weighted Assessment Tool (mSWAT)
The mSWAT (Modified Severity-Weighted Assessment Tool) is one of several tools a health care provider uses to monitor active cutaneous T-cell lymphoma (CTCL). Learn more about what it measures and how.
Navigating My Disease

Lab Tests in Staging Cutaneous Lymphoma
Laboratory studies are an important part of accurate diagnosis of cutaneous lymphomas.
Answers from the Experts

EARLY STAGE DISEASE Q&A
A question and answer session related to early stage cutaneous lymphoma. Question topics include:
-How do I know my stage? Will my stage change?
-What prompts a skin biopsy?
-Why does it take so long to diagnose?
-What is proper skin care?
-Do patches and plaques present themselves differently?
-Does the disease always need to be treated with early-stage?
-Is it common to feel "uncomfortable" and "lethargic"?
-How does the relationship between the clinical and pathology effect diagnosis?

Recorded at the 2017 2-Day Patient Conference in New York, NY.

Answers from the Experts

DO I NEED TO SEE A SPECIALIST?
If a treatment center that has cutaneous lymphoma specialists isn't located nearby, what are your options? How important is it to see a specialist? Cutaneous lymphoma experts provide answers to the question: "Should I visit a specialty center and what if there isn't a specialty center close to me?"
Answers from the Experts

DO I NEED TO SEE AN ONCOLOGIST, DERMATOLOGIST OR BOTH?
Cutaneous lymphoma affects white blood cells that live in the skin, so do you need to see a dermatologist or oncologist or both? Our cutaneous lymphoma experts provide answers to the question: "When should I see a oncologist vs. dermatologist?"
Finding Support
Patient Resources

Finding Support
Cutaneous lymphoma will present you with challenges. But, try to remember that you do not have to cope with your illness alone.
Answers from the Experts

GETTING A SECOND OPINION
When is getting a second opinion a good decision? Our panel of experts offer their recommendations on when you should seek out another professional opinion.
Health care team
FROM GUIDE CONTRIBUTORS
Patient Resources

Working With Your Healthcare Team
The best way to manage a disease like cutaneous lymphoma is by assembling the right team of physicians and support individuals to guide your treatment course and help you through each stage of the journey. 
Patient Resources

What Next? Next Steps After Diagnosis
What are the next steps after being diagnosed with an incurable, or long term disease?
Patient Resources

EMPOWER YOURSELF WITH COMPREHENSIVE MEDICAL DOCUMENTATION
Empowered patients are those who become active members of their healthcare team. Obtaining and keeping copies of your medical records and lab results is good advice for any person receiving medical attention.
Conversation
Daily Living

HOW TO TALK TO YOUR FAMILY AND FRIENDS ABOUT CUTANEOUS LYMPHOMA
A question that often arises when newly diagnosed patients call the Cutaneous Lymphoma Foundation is: “What and how should I tell my friends and family?” There is no One-Size-Fits-All answer to this. Social worker, Leora Lowenthal offers some guidelines that allow each reader to come up with their own best solution.
Friend Support
FROM GUIDE CONTRIBUTORS
Daily Living

LIVING WITH A DIAGNOSIS OF CUTANEOUS LYMPHOMA
You have cancer. Those three words can unleash a riptide of emotions, from disbelief to anger to sadness to fear. All those emotions and more are normal and can be allayed by asking questions, gaining information, and talking with individuals who have either experienced the disease or understand its normal course of action.