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Living With a Diagnosis of Cutaneous Lymphoma
Excerpted from "A Patient's Guide to Understanding 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.

Many patients say they experience denial when they first hear the diagnosis. “What do you mean I have cancer?” Cutaneous lymphoma does not seem like cancer, feel like it or look like cancer the way we have come to understand it. Other patients feel an intense desire to fix it – find the treatment or medication that can make it go away. The reality is that cutaneous lymphoma is a chronic disease with a high survival rate but no cure – at least not yet.

Over the course of your disease, there may be times when symptoms are present and quite intense and other times when you may experience a period of remission, sometimes many years long. At those times, patients feel that this is a disease that is entirely livable. However, during the outbreaks, it can be uncomfortable, debilitating and depressing. Be prepared for a roller coaster of emotions and physical feelings.

Also be prepared to try a variety of treatments before finding the one or combination of treatments that work for you at that point in time.  Treatments may change over the course of living with cutaneous lymphoma and new options are steadily becoming available.  

Make sure to work closely with your healthcare team to determine the best course of treatment.   When outbreaks do occur, realize that you may find lesions or plaques or other presentations that appear in places that others can see. Patients who were formerly confident about their appearances may become self-conscious when they find skin lesions on noticeable areas like the face, neck or leg.

Any chronic disease changes your life significantly, and cutaneous lymphoma is no different. You may face physical, logistical, and emotional hurdles because of your disease. Talking with trusted friends and family, your healthcare team, and others close to you can ease the challenges and make it easier for you to ride the waves of your disease.

Physically, you may experience discomfort or pain at times – from the illness itself or from treatment methods. Here are some common physical problems patients experience:

  • Severe itching – you may lose sleep because of it.
  • Skin may feel hot and sore – which can be a sign of infection.
  • Skin may flake or burn.
  • Skin tumors may become inflamed.
  • Sleeping can be difficult because of itching or discomfort.
  • You may have trouble finding comfortable clothes.
  • Following your normal routine may take extra time because of additional skin care steps.
  • You may have trouble using your hands because of scaling and cracking.
  • You may not want to work or exercise because of fatigue or the condition of your skin.

In every situation, talk with your health care providers about how to manage or ease symptoms.  There are ways to control symptoms and side effects and treat infections. Ask your doctor about medications that can help calm these discomforts.

In addition to treating symptoms and discomfort, distract yourself with music or an energizing walk outdoors. Keep a diary to record your feelings and symptoms. Share this information with your support team. Some people find that the cancer itself does not make them sick but medications or treatments might. Communicate this to your physician so that you can try other treatment methods to alleviate negative side effects.

Cutaneous lymphoma is a disease that can change the way you look. Dry patches, skin redness, plaques, skin ulcers, and tumors can show up anywhere on the body. Chronic itching and discomfort, plus a change in appearance, can alter how you feel about yourself. You may lose interest in socializing, which can lead to feelings of loneliness or depression. That’s when it is extra important to talk with someone and share your feelings with others who’ve experienced what you’re going through.

Some patients feel at first like they are broken individuals. Eventually, they come to accept their diagnosis and not let it define them. Attitude does affect treatment outcomes.

Ultimately, know that it’s ok and normal to have fears, concerns, and feelings of frustration. You do not have to face this disease alone. Gathering supportive friends and family around, and asking others for help, are two ways to ease fears and challenges.

Consider hiring someone to take care of household or yard chores when you are not feeling up to it. And if things get increasingly difficult, your healthcare provider or insurance company can recommend skilled-care individuals to help with skin care, dressing changes, or to check on your condition.

Emotionally, you may feel a roller coaster of feelings over the course of your disease. At times you may:

  • Feel fear, anger, or concern
  • Not believe you have cancer
  • Feel out of control and unable to care for yourself
  • Feel sad, helpless, guilty, or lonely
  • Wonder if you will live or die
  • Become depressed

These and other feelings are normal and they are ok. Nothing is wrong with you if you experience a variety of intense emotions as you learn to live with a chronic disease.  

There are many ways to help yourself, including the following:

  • Learn as much as you can about your diagnosis and treatment options. Knowledge is empowering and can help you feel more in control of your situation. Ask questions!
  • Find a support group. Like-minded individuals who have experienced or are experiencing the same things can be great to share feelings with, offer coping tips, and learn more about disease and treatment options. The Cutaneous Lymphoma Foundation is a great resource for finding support.
  • Talk with someone one-on-one – a doctor or nurse, counselor, spiritual advisor, close friend or relative.
  • Have hope. Some research suggests that hope may actually help the body face cancer and heal. Remember: more people are surviving cancer today than in the past, and many people with cutaneous lymphoma lead active, normal lives, even during treatment.