Navigating My Diagnosis

When you've been diagnosed with a rare disease like cutaneous lymphoma, it can be difficult to digest all the information you may need to know. We've provided a wealth of information to help you navigate to your best life while living with cutaneous lymphoma.

Managing Your Cutaneous Lymphoma When a Specialist Isn't Nearby

Being diagnosed with cutaneous lymphoma while living far from a specialist may present innumerable challenges. However, there are some strategies for patients to utilize that may be employed to effectively handle these situations.
Health care team
FROM GUIDE CONTRIBUTORS

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. 

What Next? Next Steps After Diagnosis

What are the next steps after being diagnosed with an incurable, or long term disease?
Physician & Patient

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.  

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

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.
Doctor & Patient

HOW TO GET WHAT YOU REALLY NEED FROM YOUR DOCTOR

This…is…your…life. You have the right, indeed the obligation to yourself and to those who love you, when speaking to your doctor, to ask any questions you have, to get clarity about anything that has been said and to feel free to keep the conversation open until you are satisfied that in the days to come you can ask about any aspect of your treatment.
Friend Support
FROM GUIDE CONTRIBUTORS

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.