Everyone talks about cancer as “The Big C” and that it is something to be feared. Yes, it is scary at times but it is not all bad. Here you will find more information about NHL and will hopefully answer some of those questions you have. I’m still finding out new things all the time so it is never ending.
Understanding Non-Hodgkin’s Lymphoma
All of the medical words are now second nature to me now. If you’re not sure what something means, then check out the “Terminology” section which will explain everything. (I hope!!).
What is cancer?
Our bodies are made up of millions of cells that work together to support thousands of structural and biological functions. As these cells age and wear out, they are replaced by just enough healthy new cells to keep the body in good repair. Cell reproduction is controlled by genes, which are present in all cells and are the basic building blocks of heredity. Genes can be compared to the director of a movie. Just as the director controls the content and quality of a movie, genes direct and coordinate the activities and production of each cell in the body.
From the time we are born, we are constantly under attack by a wide variety of germs, pollutants, and toxins that attempt to destroy or take over control of our body. The threat comes not only from these outside invaders, but also from within. When cells divide, errors can sometimes occur in the genes. These errors, also called mutations, result in an abnormal cell that does not work properly. Cancer occurs when an abnormal cell grows in an uncontrollable fashion that cannot be contained by the body’s natural defenses. These abnormal cells can multiply and eventually form a mass called a tumour.
What is the Immune System?
Despite continuous attacks from outside and inside the body, most people remain reasonably healthy for most of their lives. When we do get sick, it is usually temporary and we are able to heal ourselves in a relatively short time. Our ability to survive exposure to external invaders and internal mutations depends largely on the immune system. Non-Hodgkin’s Lymphoma (NHL) is a disease that starts in and affects the immune system. It is important to know how the healthy immune system functions when we try to understand Non-Hodgkin’s Lymphoma and it’s treatment.
The immune system is a collection of cells, structures, and organs that exist to identify, contain and destroy foreign invaders (such as bacteria or viruses) or abnormal cells before or after they harm the body. The immune system can be thought of as a small army that is always “on guard” to protect the body. Invading organisms and abnormal or cancerous cells are generally identified by the immune system through proteins known as antigens that are located on the surface of all cells, whether they are normal or malignant. Special receptors located on the immune cells lock on to those antigens. Just as a lock will only close with the right key, an antigen will only lock with a specific cell from the immune system. When an antigen and an immune cell lock together, the immune response begins, and the body acts to destroy, remove, or wall off the foreign invaders or abnormal cells.
What is the Lymphatic System?
The lymphatic system is part of the body’s defense system. It protects the body from disease and infection and is one of the most important parts of the immune system. The lymphatic system is made up of a series of thin tubes called lymph vessels that branch into all parts of the body. Lymph vessels carry lymph, a watery fluid that contains white blood cells called lymphocytes. Within the vast network of vessels are groups of small, bean shaped organs called lymph nodes. Thousands of nodes are found in almost all places in the body, including the elbows, groin, neck and under the arms. Lymph flows through the lymph nodes and specialised lymph tissues such as the spleen, tonsils, bone marrow and thymus gland.
Lymph nodes filter lymph fluid, and thus bacteria, viruses and other foreign substances are removed. If a large number of bacteria are filtered through a node or series of nodes, they may swell and become tender to the touch. For example, if you have a sore throat, the lymph nodes under your jaw and in your neck may swell. Most swollen nodes are a reaction to infection and are not cancerous.
What are Lymphocytes?
Lymphocytes are a type of white blood cell that help the body fight infections. They are made in the bone marrow, and circulate in the blood and lymph vessels. Lymphocytes recognise foreign cells and act quickly to destroy them. There are two types of lymphocytes: B-lymphocytes and T-lymphocytes. B-lymphocytes develop into cells (called plasma cells) that make specific substances (called antibodies) that circulate in the blood and react with toxins, bacteria and some cancer cells. The body can then identify and remove these unwanted substances.
However, some invaders can evade B-lymphocytes by growing inside the body’s own cells. That is where T-lymphocytes come in. They sense when the body’s own cells have become infected and destroy them directly. T-lymphocytes help the body fight viral infections and destroy abnormal or cancerous cells.
What is Lymphoma?
Lymphoma is a type of cancer that can occur when an error occurs in the way a lymphocyte is produced, resulting in an abnormal cell. These abnormal cells can accumulate by two mechanisms: (a) they can duplicate faster than normal cells, or (b) they can live longer than normal lymphocytes. Like normal lymphocytes, the cancerous lymphocytes can grow in many parts of the body, including the lymph nodes, spleen, bone marrow, blood or other organs.
There are two main types of cancer of the lymphatic system. One is called Hodgkin’s Disease, while the other is called Non-Hodgkin’s Lymphoma.
What is Non-Hodgkin’s Lymphoma?
Non-Hodgkin’s Lymphoma (NHL) is not a single disease, but rather a group of several closely related cancers that affect the lymphatic system. Although the different types of Non-Hodgkin’s Lymphoma have some things in common, they differ in what the cancer cell looks like under a microscope, how the cell grows, and how the tumour affects the body.
Non-Hodgkin’s Lymphoma is broadly divided into two major groups: B-cell lymphomas (which develop from abnormal B-cell lymphocytes) and T-cell lymphomas (which develop from abnormal T-lymphocytes).
Lymphoma is one of the most complicated forms of cancer and is the third fastest growing cancer of the past 20 years. So what is it?
Lymphoma is a cancer of the lymphatic system that embraces the bone marrow, spleen, thymus gland, lymph nodes and tonsils. Lymph is a colourless watery fluid that contains white blood cells that are important for fighting disease. It is carried in the lymph glands and vessels, and the infection fighting cells are stored in the lymph nodes in the neck , under the arms, in the groin area and the abdomen.
When cancers spread, they are carried in the Lymphatic Syste. Lymphoma occurs when tumours build up in areas such as the bone marrow or lymph glands.
There are many different types of lymphoma, but the main groups are Hodgkin’s disease (HD) and Non-Hodgkin’s Lymphoma (NHL).
The two forms have similar symptoms, but contain different cell types. NHL is the most common form of the disease and has 15 types. It usually affects people aged between 30 and 70.
How do Non-Hodgkin’s Lymphoma develop?
Non-Hodgkin’s Lymphomas can start in lymph nodes, in a specialised lymphatic organ such as the spleen, or in lymph tissue found in organs such as the stomach or intestines. Since lymphocytes can circulate to all parts of the body through the lymphatic vessels and bloodstream, abnormal lymphocytes can reach any part of the body. Therefore, Non-Hodgkin’s Lymphoma can start in or spread throughout the body in a similar fashion. Although some Non-Hodgkin’s Lymphomas are localised to one area, many have spread to other parts of the body by the time the diagnosis is confirmed.
What causes Non-Hodgkin’s Lymphoma?
The exact causes are unknown. Doctors often cannot explain why one person gets Non-Hodgkin’s Lymphoma and another does not. We do know that lymphocytes are not caused by an injury and that you cannot get Non-Hodgkin’s Lymphoma by being in contact with someone who has the disease.
What are the signs and symptoms of Non-Hodgkin’s Lymphoma?
A symptom is anything out of the ordinary that could be caused by a disease. Non-Hodgkin’s Lymphoma symptoms are not specific to lymphomas and are, in fact, similar to those of many other illnesses. The most common presentation of Non-Hodgkin’s Lymphoma is usually a painless swelling of lymph nodes that often occurs in the neck or under the arms.
Some people may also experience swelling of lymph nodes in other parts of the body. For example, enlarged lymph nodes in the groin can cause a swelling in the legs or ankles, while enlarged lymph nodes in the abdomen can cause abdominal discomfort or a feeling of bloating. Less commonly, patients with Non-Hodgkin’s Lymphoma may present without swollen lymph nodes.
Other patient complaints that may indicate the presence of Non-Hodgkin’s Lymphoma can include fever, unexplained weight loss, sweating (often at night), chills, a lack of energy or itching. There is usually no pain involved, especially when the lymphomas is in the early stage of development. Most people who have these non-specific complaints will not have lymphoma. However, it is important that anyone who has persistent symptoms be seen by a doctor to make sure that lymphoma is not present.
Common symptoms of Non-Hodgkin’s Lymphoma
What will the doctor look for during a physical examination?
If you have symptoms suggesting Non-Hodgkin’s Lymphoma, a complete physical examination will be performed. During this examination, the doctor will look for swollen lymph nodes under the chin, in the neck and tonsil area, on the shoulders and elbows, under the arms and in the groin.
The doctor will also examine other parts of the body to see whether there is a swelling or fluid in your chest or abdomen that could be caused by swollen lymph nodes. You will be asked about pain and examined for any weakness or paralysis that could be caused by an enlarged lymph node pressing against nerves or the spinal cord. Your abdomen will be examined to see whether any internal organs are enlarged, especially the spleen.
If the doctor suspects lymphoma after reviewing your symptoms and performing a physical examination, he or she may order other tests to help confirm the diagnosis. These tests should include a biopsy, and may include blood tests, x-rays and other imaging tests, scans, bone marrow evaluation and perhaps an examination of the cerebrospinal fluid.
Common tests used to evaluate Non-Hodgkin’s Lymphoma
What is a biopsy and how is it performed?
A biopsy is a procedure in which a piece of tissue from an area of suspected cancer is removed from the body for examination under a microscope. The information provided by this tissue sample is crucial to diagnosing and treating Non-Hodgkin’s Lymphoma.
After a tissue sample as been removed, it is examined by a pathologist (a doctor who studies tissues and cells to identify diseases). Pathologists look at the tissue under a microscope and then provide the oncologist with a detailed report. Information obtained from a biopsy indicates the type of Non-Hodgkin’s Lymphoma.
What are the imaging tests and how to they help evaluate the cancer?
Doctors will often order imaging tests that provide pictures of the inside of the body. Most of these tests are painless, and no anaesthetic is required. Several types of imaging procedures may be needed, and the necessary tests will be chosen to help best evaluate your cancer, including:
X-rays:
x-rays use radiation to take pictures of areas inside the body.
CT or CAT scan (Computerised Axial Tomography):
A CT scan takes x-rays from different angles around the body. The pictures that are obtained are then combined using a computer to give a detailed image. People with Non-Hodgkin’s Lymphoma often have CT scans of the neck, chest, abdomen and/or pelvis. Depending on the symptoms, other areas of the body may also be examined. This test is useful in determining whether lymphocytes that appear abnormal are present, and whether internal organs are affected by Non-Hodgkin’s Lymphoma.
MRI (Magnetic Resonance Imaging):
An MRI scan is similar to a CT scan but uses magnets and radio frequency waves instead of x-rays. An MRI scan can provide important information about tissues and organs that is not available from other imaging techniques. An MRI may be ordered when the doctors wants to get clear images of the brain and spinal cord to see whether the cancer has spread to these areas.
Gallium (isotope) scan:
Radioactive gallium is a chemical that collects in some tumours. A gallium scan may be used when a patient is diagnosed with Non-Hodgkin’s Lymphoma. This scan is performed by injecting a small amount of radioactive gallium into the body. The small amount of chemical used is not harmful. The body is then scanned from several angles to see whether the gallium has collected in a tumour. If the tumour attracts this chemical, the scan can be repeated after treatment is completed to help determine if the tumour has completely disappeared or become inactive.
PET scan (Positron Emission Tomography):
PET scans may be used instead of or in addition to gallium scans or lymphangiograms to identify areas in the body that are affected by Non-Hodgkin’s Lymphoma. This test evaluates metabolic activity in different parts of the body. A positron camera is then used to detect the radioactivity and produce cross-sectional images of the body.
What is a bone marrow examination?
Bone marrow, the spongy material found inside our bodies, contains immature cells called stem cells, which develop into three types of cells found the body; red blood cells that delivery oxygen to all parts of the body and take away the waste product carbon dioxide; white blood cells that protect the body from infection; and platelets that help blood clot. Non-Hodgkin’s Lymphoma can spread to the bone marrow, or start in the bone marrow, therefore doctors may want to examine part of the marrow to see whether cancer is present.
Bone marrow is obtained by numbing the skin, tissue and surface of the bone with a local anaesthetic, and then inserting a thin needle into the hip or another large bone and withdrawing a sample. The procedure can be painful (in my case read long drawn out and extremely painful!) when the marrow is withdrawn.
How is Non-Hodgkin’s Lymphoma classified and graded?
By examining the tissues from a biopsy, doctors can determine which of the many types of lymphoma are present. Each type of lymphoma is further classified according to how aggressively the tumour is growing. This is called the grade of the tumour. The classification is important because if affects both the rate at which the disease is likely to progress and the treatments likely to be effective
What do the classification and grade mean?
The grade of the tumour is important because it helps doctors determine the kind of treatment that should be prescribed. Chemotherapy works best against tumours that are growing rapidly and is therefore best for aggressive tumours. Low-grade lymphomas as a group are often called indolent lymphomas because they tend to grow very slowly and need treatment less urgently.
Indolent Lymphomas are rarely cured and may be widespread at the time of diagnosis. Patients usually live for a long time with a good quality of life. Some indolent lymphomas can transform over time into a combination of indolent and aggressive lymphoma. In these patients, more aggressive treatment is needed.
Intermediate- and high-grade Non-Hodgkin’s Lymphoma’s are often classified as aggressive because these tumours can generally grow rapidly and treatment is needed soon after diagnosis. Although people with more aggressive lymphomas often require more immediate intensive treatment, their cancers may be curable.
What is cancer staging and what does it mean?
Stage is the term used to describe the extent of tumour spread in the body. Non-Hodgkin’s Lymphoma is divided into 4 stages, depending on how far the disease has spread. Stages I and II are localised, while Stages III and IV are advanced, widespread, or disseminated. Stage is one important piece of information that helps to predict outcome or prognosis and determine approaches to treatment.
What do the letters “A”, “B” or “E” after the stage mean?
Each stage of Non-Hodgkin’s Lymphoma is further divided into “A” and “B” categories depending on the symptoms patients have when they are diagnosed. Some patients have symptoms that affect their entire body (called systemic symptoms). Examples of these include fever, night sweats, and weight loss. Patients who have these symptoms will have the letter “B” after the stage of their disease.
The “A” category is used to designate a person with no systemic symptoms. These patients may have a slightly better prognosis than those with systemic symptoms.
The category “E” is used when the disease spreads directly from a lymph node into an organ. “E” can also be used when the disease involves a single organ outside the lymphatic system with no other lymphatic involvement.
Stages of Non-Hodgkin’s Lymphoma
The stage describes whether the cancer has spread in the body:
Stage I (early disease). The cancer is found only in a single lymph node region OR one organ or area outside the lymph node.
Stage II (locally advanced disease). The cancer is found in two or more lymph node regions on one side of the diaphragm (the breathing muscle that separates the abdomen from the chest), OR the cancer is found in one lymph node region plus a nearby area or organ.
Stage III (advanced disease). The disease involves lymph nodes both above and below the diaphragm OR one nodal area and one organ on opposite sides of the diaphragm.
Stage IV (widespread disease). The lymphoma is outside the lymph nodes and spleen AND has spread to one or more organs such as bone, bone marrow, skin or other organs.
General questions you may want to ask about your treatment
Chemotherapy
What is chemotherapy and how does it work?
Chemotherapy for Non-Hodgkin’s Lymphoma usually consists of several drugs given together, called combination chemotherapy. Combinations are used because different drugs damage or kill cancer cells in different ways. This provides a better mechanism for killing more tumour cells because using the drugs together (syngergism) rather than individually, may help them work better. In addition, drugs added together in lower doses, help reduce the likelihood of side effects without reducing the overall amount of effective chemotherapy.
For e.g., the combination CHOP is currently considered standard therapy and uses drugs with smaller amounts of toxicity while sustaining a full capacity to destroy Non-Hodgkin’s Lymphoma.
A chemotherapy regimen is a combination of anticancer drugs given at a certain dose in specific sequence according to a strict schedule.
Why are several doses of chemotherapy given?
A single dose of chemotherapy kills only a percentage of the cancer cells, and multiple doses are therefore necessary to try to kill all of the cancer. Chemotherapy is scheduled as frequently as possible to minimize tumour growth, prevent the development of resistant cancer cells, and achieve the best outcome.
Chemotherapy is usually given in cycles, that is, each treatment is followed by several weeks of rest and recovery during which no treatment is given. Together, each period of treatment and non treatment is called a chemotherapy cycle.
How is chemotherapy given?
Depending on the chemotherapy regimen, you may receive drugs in pill form, as an injection or as an intravenous drip.
CHOP and the drugs within it
Why does chemotherapy cause side effects (toxicity)?
Chemotherapy is generally most effective at killing cells that are dividing rapidly, such as cancer cells. But these drugs are not selective and can also kill or damage normal cells, especially cells that are fast growing such as hair cells or those in the mouth, the gastrointestinal track, or the bone marrow. When this occurs, it can cause toxicity (side effects).
Common side effects
Hair loss:
For many patients, hair loss is a troublesome side effect. Thinning or loss of hair can occur at any place, including the scalp, eyebrows, eyelashes, arms, legs and pelvis. The loss of hair may be variable. All of your scalp hair may fall out, or you may just notice a thinning. When hair loss occurs, if often starts two to three weeks after the first chemotherapy. Hair loss due to chemotherapy is usually temporary, and you hair will probably grow back when the chemotherapy is over. At first, new hair may be slightly different texture or colour than it was before, but it usually returns to normal.
Gastrointestinal effects:
Chemotherapy may cause nausea or vomiting. Nausea most frequently occurs on the day you receive chemotherapy, but also can start one or two days later.
Diarrhoea:
Diarrhoea can be a side effect of chemotherapy. The most important thing to do is avoid dehydration (loss of body fluids).
Mouth sores:
The membranes of your mouth may become red, sore or irritated during chemotherapy. You can obtain medications to help alleviate the symptoms from your doctor. Some people experience a change in the way foods or beverages taste. Familiar foods taste differently. Some foods have a metallic taste. These side effects are temporary and typically disappear after chemotherapy is completed.
Fatigue:
Fatigue is a common side effect of chemotherapy. Fatigue should go away after treatments are over, but it can take weeks or months until it is completely gone. Extreme fatigue may be a sign of anaemia.
Other side effects:
Some of the other possible side effects of chemotherapy include a cough, a decrease in lung or heart function, skin rashes and weakness. Hiccups and memory loss are also a lesser-known side effect. Some drugs also cause damage to the nervous system. Nerve damage can cause side effects such as constipation or a tingling sensation in the fingers and toes. Other possible side effects include jaw or throat pain and a loss of balance or co-ordination. Many of these effects are temporary, but some may continue for an extended period of time. Always inform the doctor when you experience any side effects. In many cases they can help you to avoid or minimise the effects.
Questions to ask about your chemotherapy
Radiation Therapy
How does radiation therapy work?
Radiation therapy (also called radiotherapy) uses high-energy x-rays to kill cancer cells and shrink tumours. Radiation is a local therapy, which means it only affects cancer cells in the treated area. Depending on the circumstances radiation can be used alone or in combination with chemotherapy.
To prepare for radiotherapy, the skin will be marked with tiny ink dots so the exact same area will be treated every time. Before the first treatment, the team will devote a substantial amount of time to marking your body to make sure that specific areas receive radiation. Normal tissues around the radiation field are shielded by lead, which is designed to block the path of stray radiation beams.
You will lie on a table beneath a large noisy machine that delivers the radiation. You must remain still during the treatment. Props and supports with plastic forms, pillows and rolled blankets will help keep you in the proper position. Once the proper preparations have been made, it takes only a few minutes to deliver the prescribed dose. The total dose of radiation is usually divided and given over one to six weeks.
What are the side effects of radiation therapy?
Radiation is painless and will not make you radioactive, but you may experience some side effects, such as the following:
Questions to ask before radiotherapy
What are the long-term side effects of cancer treatment?
Most patients live long and healthy lives following successful treatment for Non-Hodgkin’s Lymphoma. Despite a long-term disease-free survival, you may experience some health problems related to the disease or therapy that may not be apparent until months or years after the treatment has ended.
Possible long term consequences of chemotherapy include sterility and premature menopause. The risk will vary depending on the type of treatment and amount of chemotherapy.
Patients who are treated for Non-Hodgkin’s Lymphoma may be at a higher risk for developing a second type of cancer, including leukaemia, melanoma and tumours in the lung and other organs.
Patients who receive radiation therapy have an increased chance of developing another type of cancer in the areas that were radiated within the following 20 years.
When should I call the doctor?
You must let your doctor and nurses know if you experience any side effects, changes in your health status or other problems during therapy. Fever is a danger signal that warrants calling your doctor at once.
You should tell your oncologist about any other medication you take or are considering taking. This includes any medications prescribed by other doctors as well as any medications that you take without a prescription.
Alert your doctor if you experience any of the following:
How can I deal with the emotional side of cancer?
The side effects of cancer treament can usually be controlled effectively by medications. The emotional and psychological impact of dealing with cancer also need attention. Some common conditions include:
Feeling unattractive: Hair loss and other changes in appearancee caused by treatment make many people feel unattractive. Some of these feelings may be addressed by learning how to improve your appearance, how to hide hair loss, and how to manage temporary changes such as dry skin, brittle nails and a blotched complexion.
Depression: Patients with cancer may feel depressed. Depression can be caused by anxiety over your disease, but can also be caused by some medications. You should not be embarrassed to seek advice and assistance from your team.
Living in remission: Can be a source of both relief and anxiety,. Relief that the tumour is gone and anxiety that it may recur. You may feel that successful treatment has given you another chance at life. It is not uncommon for the cancer experience to change people’s priorities or career directions. It is important for you to deal with changes in your attitude toward your life, your relationships and yourself. Therefore, take the appropriate steps to maintain your health and following your doctor’s recommendations for follow-up visits.
Coping with relapse and recurrence: Relapse may occur in Non-Hodgkin’s Lymphoma. If you experience relapse, you may feel even worse than when you were first diagnosed because you hoped and believed that the cancer was cured. However it may actually be easier for you to cope with the second time around. You already know what to expect, how to find support, and how to manage your disease. Remember, if your cancer was successfully treated once, it may be successfully treated again.
Four steps to feeling better during cancer therapy
STEP 1: tell your doctor or nurse if you have side effects from the treatment
STEP 2: ask your doctor or nurse before you take any other medicines
STEP 3: take care of your health
STEP 4: talk about your feelings!