Anaplastic Large-Cell Lymphoma: What To Ask Your Doctor

Medically Reviewed by Dr. K on 13 May 2022.

Anaplastic Large-Cell Lymphoma

ALCL stands for anaplastic large-cell lymphoma, which is a rare form of blood cancer. It is more common in the younger population and affects men more than women. It is not a genetic disorder.

ALCL is a life-threatening disease. It may develop quickly and often recurs. Medications are available to help you in treating it. Other treatments can be able to assist you with symptom control.

Researchers are also looking for new and improved treatments for both the disorder and the effects.

Lymphocytes, which are white blood cells, multiply out of control when you have lymphoma, becoming cancerous. These are white blood cells that fight infection in most cases. In ALCL, they build up in tiny glands called lymph nodes or other areas of the body, such as your lungs or skin…

ALCL will manifest itself in two ways:

  • In the skin, it's known as cutaneous ALCL in the blood. It grows slowly in most cases.
  • In lymph nodes and other organs, it's known as systemic ALCL.  It frequently spreads rapidly.

Doctors would still need to determine if cancer contains a protein known as ALK.

  • ALK-Positive: Young people are more likely to develop ALK-positive cancers, which normally respond well to chemotherapy.
  • ALK-Negative: Cancers that are ALK-negative are more prevalent in people over the age of 60. Since it is more likely to recur, this form may need more aggressive care.


It is still unknown as to what causes ALCL, but it is not an inherited disease.


Swelling in the neck, armpit, or groin is often the first symptom of systemic ALCL.

You may also notice the following signs and symptoms:

  • Fever
  • Unintentional weight loss
  • Night sweats
  • Fatigue
  • Loss of appetite

In cutaneous ALCL, there may be one or more red raised bumps on the surface of the skin that do not go away. These bumps are tumors and can develop into itchy open sores.


Getting a Diagnosis

The following are questions your doctor will ask you:

  • When did you first notice your symptoms?
  • Do you have any swollen bumps?
  • Are you in pain? If so, where?
  • Have you experienced any changes to your weight?
  • How is your appetite?
  • Are you more tired than normal?
  • Do you have any new skin bumps? Are they itchy?
  • Do you have night sweats?

Doctors can take a biopsy from a swollen lymph node to see whether you have ALCL. It's straightforward and doesn't necessitate a stay in the hospital. Doctors use a needle to collect a sample to create a minor cut through the skin to scrape any or half of the lymph node. They use a microscope to study the cells.

Other assessments, such as the following, may be required:

  • Blood tests
  • Bone marrow biopsy: Doctors scrape a tiny volume of the soft substance within the bones with a special needle to check for cancer cells.
  • Chest X-ray: A chest x-ray utilizes low-dose radiation to create images of the organs in the chest.
  • CT: CT scans are high-resolution X-rays that provide clear images of the interior of your body.
  • MRI: MRI, which creates images of organs and bodies using strong magnets and radio waves.
  • PET scan: PET scan: a test that uses radioactive tracers to look for tumors.

Both tests are used to determine where cancer has developed and how far it has spread. This is referred to as staging. It aids you and your doctor in determining the best course of action.

  • Stage 1: Cancer is located in lymph nodes in just one region of the body, such as the neck or the groyne, in stage I.
  • Stage 2: Cancer is present in two or three groups of lymph nodes in stage II. The lymph nodes are located just above or below the diaphragm, a muscle that connects the chest and stomach.
  • Stage 3: Cancer is located in lymph nodes above and below the diaphragm in stage III.
  • Stage 4: ALCL has spread to other organs, such as the liver, bones, or lungs, at this point.

Questions to Ask Your Doctor

  • What stage is cancer?
  • Where is cancer?
  • Is the cancer ALK-positive?
  • Have you treated someone with ALCL before?
  • What treatments are available?
  • What are the side effects?
  • How and when will we know if it works?
  • What if it doesn't work?
  • Could I be in a clinical trial?
  • How do I connect with other families facing ALCL?


There are therapies for ALCL that will benefit you, no matter what kind of ALCL you have. Researchers remain optimistic that new and improved options will emerge in the future.

The type of ALCL you have and where it is primarily found will determine your treatment options.

Chemotherapy is the most common treatment for systemic ALCL, which occurs after cancer has spread to the lymph nodes and other organs.

Both ALK-positive and ALK-negative ALCL are treated with CHOP chemotherapy. The first letters of the medications used in the treatment are Cytoxan, hydroxydaunorubicin, Oncovin, and prednisolone.

Doctors can use CHOP at higher doses if the cancer is ALK-negative.

If CHOP does not work, you might be given another medication named brentuximab vedotin (Adcetris).

A stem cell transplant might be an option for you, but it is a dangerous and difficult treatment. It's normally only used when the other options have failed. Doctors inject stem cells into the bloodstream to aid with the growth of new cancer-free cells. Your own stem cells or those from a similarly related donor are used.

Treatment options for primary cutaneous ALCL include:

  • Radiation: high-energy rays to kill cancer cells
  • Surgery: to remove the tumors

If cancer has spread to several areas of the skin, a variety of chemotherapy drugs might be needed.


Taking Care of Yourself

When you're diagnosed with cancer, you can feel as though you've lost control. Keep in mind that you are in control of your treatment and how you manage your life.

You may not feel the best when undergoing therapy. Most treatments, such as chemotherapy, have side effects. You may feel weak or exhausted, and you may have nausea and abdominal discomfort.

To help you feel stronger, do the following:

  • To maintain weight and strength, eat enough calories and protein per day. Instead of a few large meals, try a few smaller ones.
  • Inquire with the doctor or nurse for how to alleviate fatigue and other treatment-related side effects.
  • Family, family members, psychologists, or friends can all help. You may even find a support group for ALCL sufferers.
  • Continue to be active. Exercise when you feel ready. Consult the doctor to determine what is best for you.
  • Make an effort to get adequate sleep.
  • Hands must be washed frequently, and keep a distance from unwell people.

Ensure you go to all your doctors' appointments. They're crucial for determining how well the treatment is working and if any adjustments are needed.


What to Expect

While each case is unique, treatment for ALCL may be successful. Cancer will reemerge at any time. Inquire with your doctor on what to look out for, and pay attention to your body.

Treatments can cause pain. Be sure the doctor is aware of your symptoms. Keep track of other medications that will make you sleep better and relieve your symptoms.

Chronic disease affects the whole family. It's normal for you to have doubts, queries, and frustrations. Find the support you need and ask for it when you need it.


Getting Support

The Lymphoma Research Foundation's website has further detail on anaplastic large-cell lymphoma. It includes access to support groups for ALCL patients and their families, as well as clinical trial details.


Referenced on 2.3.2021:

  1. Blood and Lymphatic Centers Leukaemia Care: “Anaplastic Large Cell Lymphoma."
  2. Canadian Cancer Society: “Anaplastic large cell lymphoma."
  3. Focus on Large Cell Lymphoma: “Treatment Options."
  4. Leukaemia Foundation: “Fact Sheet: Anaplastic Large Cell Lymphoma."
  5. Lymphoma Research Foundation: “Anaplastic Large Cell Lymphoma."
  6. FDA: “Anaplastic Large Cell Lymphoma (ALCL) In Women with Breast Implants: Preliminary FDA Findings and Analyses."
  7. Lamant, L. Haematologica, March 2010.
  8. National Cancer Institute: “What You Need to Know About Non-Hodgkin Lymphoma."

Previous Post


Next Post

Bartter Syndrome: Symptoms, Causes, Diagnosis, Treatment

Related Posts