- Signs and Symptoms
- Common symptoms of lymphoma
- B symptoms
- Swollen lymph nodes
- Unexplained weight loss
- Night sweats
- Difficulty getting over infections
- Chest symptoms
- Abdominal (tummy) symptoms
- Skin symptoms
- Brain and nerve symptoms
- Swelling in the arms or legs
- Accurately Diagnosing Non-Hodgkin Lymphoma
- Donna, Hodgkin Lymphoma Survivor
- Lymphoma Symptoms: Recognizing Them Early Aids Prompt Diagnosis
- Questions Your Doc Might Ask During the Appointment
- Why It’s So Important to Spot Symptoms
- Celgene is now part of Bristol-Myers Squibb
- Types of Non-Hodgkin’s Lymphoma
- Continued scientific advancements are providing additional options for patients
- I Knew… If Only the Doctors Had Listened to Me
- My diagnosis with non-Hodgkin lymphoma
- Bud L.
- That’s it?
- Different care
- No longer watch and wait
- Living my life
- Connie’s story
Signs and Symptoms
The most common symptom of Hodgkin lymphoma is one or more enlarged (swollen) lymph nodes. The enlarged lymph node may be in the neck, upper chest, armpit, abdomen or groin. The swollen lymph node is usually painless.
Other signs and symptoms of Hodgkin lymphoma may include:
- Drenching night sweats*
- Unexplained weight loss*
- Unexplained fever*
- Persistent fatigue
- Persistent cough and shortness of breath (if the Hodgkin lymphoma is located in the chest)
- Itchy skin
- Decreased appetite
- Abdominal pain or swelling and feeling of fullness (due to an enlarged spleen)
- Occasional pain in lymph nodes after drinking alcohol (uncommon but specific symptom).
*B symptoms. Fever, drenching night sweats and loss of more than 10 percent of body weight over six months are sometimes termed “B symptoms.” These symptoms are significant to the prognosis and staging of the disease.
Some Hodgkin lymphoma symptoms are associated with other, less serious illnesses. However, if you’re troubled by any of the above symptoms, see your doctor.
- Download or order The Leukemia & Lymphoma Society’s free booklet, Hodgkin Lymphoma.
Lymphoma is a group of blood cell tumors that begin in cells of the body’s immune system. In the United States, about 79,990* new cases of lymphoma are diagnosed every year. In lymphoma, cancer cells are found in the lymphatic system, which is comprised of the bone marrow, lymph nodes, spleen, stomach, intestines and skin. Because lymph tissues are present in many parts of the body, lymphoma can start almost anywhere.
Normal lymph nodes are tiny, beanlike structures that trap cells containing poisons and waste materials. They also serve as a reservoir of cells that supply microorganism-fighting antibodies. Tubelike vessels carrying milk-colored fluid called lymph connect lymph nodes to each other. Lymph allows white blood cells (lymphocytes) to circulate. When white blood cells multiply abnormally, they cause masses to form and lymph nodes become enlarged. Some lymphomas may affect the bone marrow and interfere with its making of blood cells. The result is anemia, or low red blood cell count.
*American Cancer Society, Cancer Facts & Figures 2014
Classification of Lymphomas
Lymphomas are graded as low, intermediate and high depending on the kind of lymphoma cells present and how they affect lymph nodes and chromosomes. Some lymphomas grow faster and require specific treatment. Classifying them is complex because many kinds of lymphocyte cells can be involved.
These grow so slowly that patients can live for many years mostly without symptoms, although some may experience pain from an enlarged lymph gland. After five to 10 years, low-grade disorders begin to progress rapidly to become aggressive or high-grade and produce more severe symptoms.
This type progresses fairly rapidly without treatment. With treatment, remission can be induced in between 50 to 75 percent of cases. Initial treatment has been so successful that people who stay in remission for three years after diagnosis are often considered cured. Stage I disorders are treated with radiotherapy.
Without treatment, these can progress rapidly regardless of stage. They are treated aggressively. With treatment, between 50 to 75 percent of patients enter remission. Those who stay in remission one year can look forward to a life free from recurrence. Treatment consists of intensive combination chemotherapy, which is sometimes supplemented with radiation therapy. Drug regimens used are determined by a number of factors, the most important being tissue study.
Types of Lymphomas
Based on the course of disease and the kind of lymphocytes affected, lymphomas are divided into two types: Hodgkin disease and non-Hodgkin lymphoma.
About 75 percent of those diagnosed with Hodgkin disease recover fully. About 90 percent of all people diagnosed with early-stage illness and more than 50 percent of those with more advanced stage are now living longer than 10 years with no signs of the disease coming back. The stage of the disease at diagnosis is critical in planning treatments. Sometimes giving the patient aggressive chemotherapy and then introducing young cells from the bone marrow (bone marrow transplantation) may increase chances of the patient living longer. A bone marrow transplant should be considered for every patient whose disease comes back after undergoing chemotherapy.
In the past 10 years, this disease has become easier to treat as more procedures are found to be effective. Overall, 50 to 60 percent of patients with non-Hodgkin lymphoma now live five years or longer without a recurrence. While a number of factors determine the best treatment for these disorders, the most significant is tissue classification followed by determination of the disease’s stage.
Common symptoms of lymphoma
Watch Dr Andrew Davies, Consultant in Medical Oncology, talk about the most common symptoms of lymphoma
There are over 60 types of lymphoma, broadly divided into Hodgkin lymphoma and non-Hodgkin lymphoma. These lymphomas can start almost anywhere in the body and can have many different symptoms. The exact symptoms they cause depend on the type of lymphoma and where it is in the body.
Most of the symptoms of lymphoma can also be symptoms of many other illnesses. These are often mild illnesses such as infections but they can sometimes be more serious conditions.
Because the symptoms of lymphoma are very general, it can sometimes be difficult to diagnose.
The most common symptoms of lymphoma are:
The most common sign of lymphoma is a lump or lumps, usually in the neck, armpit or groin. They are usually painless. These lumps are swollen lymph nodes. Lots of things that aren’t lymphoma can cause lumps – and not all lymphomas cause obvious lumps.
Fatigue means being exhausted for no obvious reason or feeling washed out after doing very little. It is not the same as normal tiredness; fatigue is overwhelming and doesn’t usually feel better after sleep or rest. Fatigue can be caused by many different things. Lymphoma is just one of them.
Unexplained weight loss means losing a lot of weight quite quickly when you’re not trying to. It can be a symptom of lymphoma – but it can be caused by other things, too.
Lymphoma can cause night sweats that make your nightclothes and bed sheets soaking wet. The night sweats are often described as ‘drenching’. They can happen with any type of lymphoma and can also happen during the day. Night sweats can also have causes other than lymphoma.
Itching (‘pruritus’) without a rash can be a symptom of lymphoma but it can have many other causes. It can be very troublesome, particularly in hot weather.
Lymphoma affects everybody differently. For example:
- You might have lots of symptoms, only a few symptoms, or no symptoms at all. (Sometimes lymphoma is discovered during tests for something else.)
- You might have symptoms in one area (local symptoms) or symptoms that affect your whole body (systemic symptoms).
- You might feel well or you might become very unwell quickly.
Local symptoms and systemic symptoms
Some symptoms of lymphoma affect the area in and around the lymphoma itself. These are called ‘local symptoms’. The most common local symptom is a swollen lymph node or nodes. Other local symptoms are caused by swollen nodes pressing on nearby tissues. The symptoms you experience depend on where the swollen lymph nodes are. You might have:
- chest symptoms, such as cough or breathlessness
- abdominal (tummy) symptoms, such as a sense of fullness
- skin symptoms, such as a rash or itching
- pain (although this is uncommon)
- brain and nerve symptoms (again, these are uncommon), such as fits (seizures), dizziness or weakness in an arm or leg
- swelling in your arms or legs
- anaemia (low numbers of red blood cells), which can make you feel tired.
Some symptoms of lymphoma affect your whole body. These are called ‘systemic symptoms’. They are caused by the chemicals produced by the lymphoma itself and your body’s reaction to the lymphoma. Systemic symptoms include:
- weight loss
- night sweats
- frequent infections.
Around 1 in 4 people with Hodgkin lymphoma and 1 in 3 people with high-grade non-Hodgkin lymphoma may have systemic symptoms. Systemic symptoms are less common in people with low-grade non-Hodgkin lymphoma.
What should I do if I have symptoms of lymphoma?
Most of the symptoms of lymphoma can occur in other, more common illnesses as well. Having one or more of these symptoms doesn’t necessarily mean you have lymphoma.
If you think you might have lymphoma, or you are worried about any aspect of your health, visit your GP.
You can also find helpful information and advice about your health on NHS Choices or Patient.Info.
If you have a diagnosis of lymphoma and you’re finding it difficult to manage your symptoms, we have some general guidance for coping with some of the common symptoms of lymphoma. Speak to your doctor for advice about managing your individual symptoms.
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You may hear the term ‘B symptoms’, especially when your lymphoma is being staged. Staging is the process of working out how many different parts of your body are affected by lymphoma. The following symptoms are referred to as B symptoms:
- unexplained weight loss
- night sweats
Doctors will take into account whether you have any B symptoms when they plan your treatment.
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Swollen lymph nodes
Lymph nodes help to fight infection. They can become swollen for lots of reasons, even when they’re working as they should.
A swollen lymph node or nodes is the most common symptom of lymphoma – but lymphoma is not the most common cause of swollen lymph nodes. Most people who have swollen lymph nodes do not have lymphoma. More common causes of swollen lymph nodes include:
- infections, such as coughs, colds, ear and throat infections
- illnesses that affect the immune system, such as rheumatoid arthritis
- severe skin diseases such as eczema or psoriasis
- some medicines.
Swollen lymph nodes caused by infections are usually sensitive or painful to the touch. The swelling normally goes down within 2 or 3 weeks.
Swollen lymph nodes caused by lymphoma:
- are most commonly found in the neck, armpit or groin
- are usually smooth and round
- tend to be mobile (they move out of the way when you press on them)
- have a ‘rubbery’ texture
- are usually painless – although they can sometimes ache or cause pain in nearby areas (for example, if they’re pressing on a nerve)
- rarely, can become painful a few minutes after drinking alcohol (this affects up to 5 in 100 people with Hodgkin lymphoma and is probably due to blood vessels in the lymph node widening in response to alcohol).
Having swollen lymph nodes does not necessarily mean you have lymphoma. If you notice a lump that doesn’t go away within 2 to 3 weeks, or you find that a lump is getting bigger, see your doctor.
Lymph nodes in the neck, armpit or groin are close to the surface of the skin and are easy to see and feel. Others, such as those deep inside the abdomen (stomach) or the chest, can’t be felt from the outside. If these swell, they might cause pain if they press on internal tissues, or they might only be found on a scan.
Around 2 in 3 people with lymphoma have swollen lymph nodes that they can feel. It might be the only sign that anything is wrong.
You might have swollen lymph nodes:
- in just one area of your body, which can happen with any type of lymphoma
- spread throughout your body (known as ‘generalised lymphadenopathy’), which is more common in non-Hodgkin lymphoma than Hodgkin lymphoma.
Swollen lymph nodes in lymphoma are caused by a build-up of cancerous cells in the lymph nodes. Sometimes the disease is active, making lots of cancerous cells, while at other times it quietens down and some of the cells die. This means the swollen lymph nodes can sometimes grow and shrink, especially in people with low-grade non-Hodgkin lymphoma.
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Fatigue is overwhelming physical, emotional or mental exhaustion for no obvious reason. It isn’t relieved by sleep or rest. People describe it as feeling drained of energy, or being so tired you can’t do your normal activities. Sometimes even simple daily tasks, such as getting dressed, can feel too much.
Many conditions can make you feel fatigued, including anaemia (low red blood cell count), underactive thyroid, depression and anxiety, chronic fatigue syndrome and glandular fever. If you feel fatigued, it does not necessarily mean that you have lymphoma.
Exactly why lymphoma causes fatigue is not known. It is likely that there are several reasons for it.
If you are experiencing fatigue, speak to your doctor. We also have some suggestions that may help you cope with fatigue.
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Unexplained weight loss
‘Unexplained’ weight loss means losing weight over a short period of time without trying to. The NHS advises that you see your GP if you lose more than 5% of your normal body weight over 6 to 12 months. For an average person, this means losing around half a stone (7lbs) or more. People with lymphoma might lose more than this: over 10% of their body weight within 6 months. For example, a person who usually weighs 11 stone (70kg) might lose 15lbs (7kg) or more.
Weight loss can happen in people with lymphoma because cancerous cells use up your energy resources. In addition, your body uses energy trying to get rid of the cancerous cells. Weight loss is more common with lymphomas that grow very quickly and put a sudden demand on your body.
As with many other symptoms, weight loss can happen for a lot of other reasons, such as stress, depression, diseases of the digestive tract, or overactive thyroid. Lymphoma is just one of the possible causes of unexplained weight loss.
Contact your doctor if you lose more than 5% of your body weight over 6 to 12 months without trying to.
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If you have night sweats, it does not necessarily mean you have lymphoma. Night sweats can also be caused by other conditions, such as a viral infection, anxiety, menopause or some medicines.
Doctors don’t know exactly why lymphoma causes night sweats. One possible reason is that they are your body’s natural reaction to your temperature rising above a normal level (fever). Night sweats may also be a response to some of the chemicals produced by the lymphoma cells.
Lymphoma can cause night sweats that are severe enough to make your nightclothes and bed linen soaking wet. They are often described as ‘drenching’. They can happen with any type of lymphoma. Although they are usually called night sweats, they can also sometimes happen during the day.
There are things you can do that might help you to cope with night sweats, but do also speak to your medical team for advice.
Contact your doctor if you have night sweats that regularly wake you up or if you also have other symptoms, such as fever or unexplained weight loss.
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Itching (also known as ‘pruritus’) can be caused by many different conditions, including allergies, skin conditions such as eczema, skin infections or menopause. It is not usually serious. Although itching is common in people with lymphoma, having itchy skin does not necessarily mean you have lymphoma.
Itching affects around 1 in 3 people with Hodgkin lymphoma and 1 in 10 people with non-Hodgkin lymphoma. It can affect:
- areas of skin near lymph nodes that are affected by lymphoma
- patches of skin lymphoma
- the lower legs
- the whole body.
Itching in lymphoma is thought to be due to chemicals released by your immune system, as part of its reaction against the lymphoma cells. These chemicals irritate the nerves in your skin and make it itch.
Itching due to lymphoma can be severe. It may also cause a burning sensation. It is not usually associated with an obvious rash unless you have skin lymphoma.
Itching can be very difficult to tolerate, especially in hot weather. It is usually worse at night in bed. If you have a diagnosis of lymphoma and you are struggling to cope with itching, there are some things you could try that might help. Also speak to your medical team for advice.
Contact your GP if you have itching that affects your whole body or lasts for more than 2 weeks.
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Fever is a rise in your body temperature above the normal level. It is almost always caused by an infection, but there are a few other much less common causes, including lymphoma.
Lymphoma causes fevers because the lymphoma cells produce chemicals that raise your body temperature. Lymphoma usually causes mild fevers – a body temperature over 38°C or 100.4°F. These are described as ‘low-grade’ fevers. They usually come and go.
Contact your doctor if you have a fever without an obvious infection that lasts for 2 weeks or more.
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Difficulty getting over infections
Having lymphoma can mean that your immune system doesn’t work as well as it should.
Normally, white blood cells fight infections. If you have lymphoma, cancerous white blood cells (that make up the lymphoma) are produced instead of the healthy, ‘good’ white blood cells. This can make you pick up infections more easily. The infections could be more severe or last for longer than they would normally.
Infections often cause a high temperature and make you feel hot and shivery. Other symptoms depend on where in your body you have the infection – for example, you might have an earache, a cough, a sore throat, pain when you have a wee, or sickness and diarrhoea.
See your GP if you’re worried that you’re not getting better after a minor infection.
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Any type of lymphoma can cause swollen lymph nodes in the chest but they are especially common in Hodgkin lymphoma and some types of high-grade non-Hodgkin lymphoma (where the cells appear to be dividing quickly). Around 1 in 2 people with Hodgkin lymphoma have swollen lymph nodes in their chest.
Swollen lymph nodes in the chest can press on your airways, lungs, or blood vessels. They can also make fluid collect around your lungs. This can cause:
- a dry cough
- shortness of breath
- noisy breathing
- pain behind the breastbone
- a feeling of pressure in the chest.
These symptoms may be worse when you lie down.
It is important to remember that all these symptoms can happen with many other illnesses, especially lung diseases. Having these symptoms doesn’t necessarily mean you have lymphoma.
Visit your GP if you’ve had a cough lasting more than 3 weeks or shortness of breath lasting more than 4 weeks.
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Abdominal (tummy) symptoms
Lymphoma can develop in lymph nodes in the abdomen (tummy) or lymphatic tissue in your liver or spleen. It can also develop outside your lymphatic system (‘extranodal’ lymphoma). The gut is the most common place for extranodal lymphoma to develop.
Symptoms of lymphoma in the tummy depend on what part of the tummy is involved. For example:
- If your spleen is very swollen, you might have pain behind your ribs on the left side, or you might feel bloated or full after eating only small amounts of food. You or your doctor might be able to feel the swollen spleen as a lump in the top left hand side of your tummy.
- If you have lymphoma affecting your liver, your tummy might become swollen, the whites of your eyes and your skin might develop a yellow tinge (jaundice), or you might notice a build-up of fluid in your abdomen. This can make you feel bloated.
- Lymphoma in the stomach can cause inflammation of the stomach lining (gastritis), which may cause pain, nausea (feeling sick) and vomiting.
- Lymphoma in the bowel can cause abdominal pain, diarrhoea or constipation.
See your GP if you have blood in your poo, diarrhoea for more than 7 days, green or yellow vomit, vomiting lasting more than 2 days, or if you are dehydrated and you are unable to keep liquids down.
See your GP urgently if your skin or the whites of your eyes look yellow.
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Swollen lymph nodes themselves are not usually painful but lymphoma can press on the tissues around the nodes and cause pain. Where you feel the pain depends on where the lymphoma is.
Lymphoma in the bone itself is rare but when it does happen, it can cause pain in the affected bone. It is more common to have lymphoma in the bone marrow (the spongy part in the middle of some of our larger bones), but this doesn’t usually cause pain.
If you are worried about any aspect of your health, visit your GP.
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If you have skin lymphoma, you might get symptoms on your skin such as:
- flat red patches
- raised plaques with a scaly surface
Lymphoma in the skin can look a lot like other skin conditions, such as eczema or psoriasis. Skin lymphomas are usually low-grade lymphomas. Sometimes other parts of the body are also affected but for most people with skin lymphoma, it stays in the skin.
If you have a diagnosis of skin lymphoma and you are finding it hard to cope with your symptoms, there are some things you could try that might help. Also speak to your medical team for advice.
Contact your GP urgently if you have a rash that starts suddenly and spreads quickly, a rash that is all over your body, or a rash with other symptoms such as pain, fever or breathlessness.
Visit your GP if you have a rash that doesn’t go away within a few days or that is interfering with your normal life.
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Brain and nerve symptoms
Lymphoma that starts in or spreads to the brain or nervous system is very uncommon but can cause symptoms such as headaches, fits (seizures), memory problems, dizziness, sight problems, numbness, tingling or weakness in a limb. Many other conditions can also cause these symptoms, such as epilepsy, migraine or stroke.
Contact your GP if you have any of these symptoms.
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Swelling in the arms or legs
Swollen lymph nodes can sometimes block the lymphatic vessels that run through the body. This stops fluid called lymph draining properly from the body’s tissues. This fluid can build up, causing swelling and feelings of tightness, heaviness or soreness. This is called ‘lymphoedema’. It usually affects an arm or a leg, although other areas of the body can be affected depending on where your lymphoma is. Other conditions, such as infection, injury, or some types of surgery, can also cause lymphoedema.
It is important to know that lymphoedema is very uncommon and usually gets better once treatment is started. If you are finding it hard to cope with, there are some things you can do that might help.
See your GP if you have any symptoms of lymphoedema.
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Around 1 in 3 people with lymphoma have anaemia (low number of red blood cells). This can make you feel tired and breathless because your body has to work harder than usual to get enough oxygen. You might look pale and you may have heart palpitations.
Anaemia may be caused by lymphoma in the bone marrow or by bleeding due to lymphoma in the gut. If you have a swollen spleen, anaemia can also be caused by red blood cells collecting in the spleen or being destroyed in the spleen. Lots of other, less serious, conditions can also cause anaemia, such as heavy periods, pregnancy or stomach ulcers.
Contact your GP if you think you might be anaemic.
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Medically reviewed by Eric Jacobsen, MD
One symptom of lymphoma can be the development of lumps under the skin, usually in the neck, armpit, or groin. The lumps have a rubbery feel and are usually painless. Not all such lumps are a sign of lymphoma, but when they occur at these sites, it’s advisable to have them examined by a physician if they don’t go away in a week or two.
The lumps themselves are swollen lymph nodes. It’s normal for lymph nodes to swell as they fill with white blood cells as part of the body’s response to infection or cuts and scrapes. But when lymph nodes swell without an infection present, lymphoma can be one of the causes.
Lymph nodes are considered enlarged if they are more than about 1.5 cm in diameter, says Eric Jacobsen, MD, clinical director of the Adult Lymphoma Program at Dana-Farber. They often appear in groups, although there sometimes can be a single lump. They may be confined to a single area, such as the neck, or be present in multiple areas such as the neck, armpits, and/or groin. The occurrence of lumps at multiple sites makes a diagnosis of lymphoma more likely but many benign conditions can also cause enlarged lymph nodes in multiple locations.
Other possible causes
A variety of conditions other than lymphoma can give rise to similar-looking and -feeling lumps. Some turn out to be cysts, sac-like pockets within or under the skin. Some are lipomas, benign growths of fat tissue. Some are enlarged salivary glands under the chin.
Eric Jacobsen, MD, clinical director of the Adult Lymphoma Program at Dana-Farber.
Even when the lumps are swollen lymph nodes, lymphoma is not always the cause, Jacobsen notes. Such swelling can also be produced by certain autoimmune diseases, infection, inflammation, or can occur without an identifiable cause.
If the lumps are a symptom of lymphoma, the rapidity with which they arise and grow depends on the type of lymphoma that is present. In rapidly growing lymphomas, lumps can appear in a matter of days or weeks; in slower-growing types, it can take months or even years.
What to do in case of a lump
Jacobsen recommends that individuals see their doctor promptly when the lumps are accompanied by other potential symptoms of lymphoma, such as a fever, night sweats, or weight loss. If there aren’t other symptoms and the lumps aren’t growing, they should be checked by a physician within a couple weeks of their appearance.
I’m new to this forum, but ive read quite a few posts before deciding to post myself. I probably should stop reading posts to be honest, cause it just makes me worry more, haha!
And I know I should wait for my results before stressing more BUT i’d love to hear if anyone had similar experiences.
In April 2017, I noticed what I thought at the time was a lymph node under my jaw line, on the left side of my neck. This is a common occurrence and even though I wasnt sick at the time, I figured my body might be fighting something off and I ignored it.
After roughly 4 weeks.. the node was still there and the more I felt it, I realised it was two lumps next to eachother. One slightly smaller, but i could feel both easily and if i turned my head, they protrude slightly. They’re really hard, and not really mobile. I went to the doctor, and he put me on a course of strong antibiotics and put it down to an infection.
A week later, antibiotics finished, no change in lumps, the doctor put me on another, stronger course of antibiotics, still thinking infection. At this poing I’d not had any other symptoms of any kind.
Second course of antibiotics did nothing and now itd been 6 weeks. The doctor sent me for generic blood testing, not very concerned. Bloods all came back fine. I wanted him to do more, as i wasnt happy to just ignore this after so many weeks, so he did another set of bloods looking for more specific, but also broader things. Cat scratch fever etc. All came back fine again. At this point it’d been 8-9 weeks and no change, no results.
The doctor seemed unconcerned but he sent me for an ultrasound to set my mind to ease. The ultrasound didnt show anything obviously sinister. The lumps measured at 2cm in diameter and 2.5cm in diameter. He said most likely lymph nodes and to ignore them now. He said the next step would be an FNA but only if he thought there was some thing sinister going on and he didn’t.
So, I let it get off my mind, and I kind of forgot all about it for a bit. Fast forward to December 2018 and I notice the lumps are both still there. I notice ive been feeling tired, struggling to get up in the mornings, low in energy, not going to the gym, a day at work exhausts me etc. The lumps feel pretty unchanged, not sore but can be uncomfortable to lay on sometimes im not sure why. I figure the tiredness could be due to it being christmas and being busy at work but i dont even know.
I went to a different doctor, wanting more answers this time. Again a series of blood tests and again nothing showing up. The only thing that changes was that my thyroid flares up – TSH fluctuates between being in the 2s to being in the 6s, but doc says thats fine and cant be causing enlarged lymph nodes. I tell him they first popped up in April and he seems alarmed so once he sees a course of strong antibiotics dont help at all, he writes an FNA referral. I did the FNA on Wednesday and I’m waiting for the results. Should be in by Tuesday, but ever since i did it, ive felt so uneasy and nervous. I cant keep it off my mind.
Just some extra info that could be relevant
Age: 25, no health issues, no history of lymphoma in family (history of bowel cancer tho, granfather)
Generally lead a very healthy lifestyle, i eat well, i barely drink, i dont smoke
The only other thing that happened in April/May during the lymph node swelling was some face rashes – theyd last about a wk and nothing the doctors prescribed made them go down (steroid cream, antibiotics). It was red and blotchy with lumps on my cheeks and forhead mainly, hot and itchy. This hapoened three times, lasting a week to 9 days each time and then it stopped happening. Hasnt happened in months and unsure of cause. Other than this, no health problems.
Hoping to have some answers on Tuesday, but would love to hear if anyone had swollen lymph nodes for 6 months for no apparent reason and it was nothing to worry about?
Accurately Diagnosing Non-Hodgkin Lymphoma
A few weeks later, I had some extreme chest pain on my right side of my body, so I went to the emergency room not knowing what that could be. Doctors performed blood tests and chest X-rays and everything else. They thought I may have had an embolism or pulmonary embolism, and so they ruled all of those things out. My bloodwork seemed fine. They suspected that I had pulled a muscle, but there was nothing else there. I knew I hadn’t pulled a muscle, so I was very frustrated.
A few weeks later, the chest pain came back. My bloodwork was different this time. I tested high for what had showed that I had a blood clot. They did a bunch of tests for blood clots again, and that led me to a cardiologist who couldn’t find a blood clot. My heart was fine. All of my veins were fine, but I still had this swollen lymph node. Some of the scans that had been done in the emergency room had shown spots on my liver, so that was another sign. The cardiologist, even though that wasn’t his specialty, sort of took me under his wing. He said, “We’ve got to explore all of this.” One scan led to more things showing on other parts of my body. Then I had an MRI , a CT scan and an ultrasound of my abdomen. All of those tests showed little spots here and there but nothing that could clearly show what was wrong with me.
All of the bloodwork seemed to show that I had some sort of inflammation, but it didn’t point to a specific disease. The lesions and things that they were seeing on different organs — my spleen and my liver — just seemed like cysts and seemed benign, so they didn’t think much about it.
We finally did 2 tests that demonstrated that I was not OK. They did a nuclear bone density scan, which showed lots of reaction, which was very frightening. From that scan, I was originally diagnosed with osteoblastic metastatic disease. I made the mistake of looking that up, and that was very, very frightening.
The other test that we finally did was a biopsy of my lymph node. That also showed that I had cancer, but it showed that I had lymphoma. So, I had these two different diagnoses. I had one that showed that I had an aggressive secondary cancer that had metastasized into my bones, and I had this other diagnosis of lymphoma.
I reached out to a friend who worked at MD Anderson Cancer Center. They put me in touch with you, Dr. Nastoupil. You ran a series of other tests as my second opinion. We confirmed that I had diffuse large B-cell lymphoma. Originally, and with my presentation of the chest pain, you thought that I had a different form of B-cell lymphoma, but we finally got through everything and nailed it down. That’s my journey.
I noticed the lump in January of this year, and I started chemotherapy with you on June 12th. It seemed like a long time, but I think this took a relatively short time to figure out, considering what we were trying to find.
Loretta J. Nastoupil, MD: I think you illustrate some really important findings, and many patients have a very similar experience. I say that based off of the questions that I get. By the time I meet someone, there’s already some clue that there’s lymphoma present. I generally miss out on these months of tests and experiences going down different paths. Eventually, someone does a lymph node biopsy or a mass biopsy, and lymphoma is rendered as a possibility. That’s when an oncologist like myself comes into the scene.
You highlight a couple of important things. You knew this was a lymph node. Many people know they have a lump or a bump, but they don’t know what it is. Often, they will present to their primary care physician. They think it’s an infection. They get placed on antibiotics. Often, the lymph nodes will shrink temporarily and then they come back. That’s usually when additional testing is pursued.
The question I often get asked is, “I had these symptoms that were going on for so long. Why was there not a blood test or a CT scan or an ultrasound to pinpoint that this was lymphoma?” I think this happens because there are so many nonspecific findings.
You had lymph nodes that were enlarged. You had areas in the liver that looked suspicious. You had these lesions in the bone. Do you put all of that together into 1 disease? Or, like you said, did you have multiple things going on?
In general, when you’re thinking about cancer, when you have lymph node or bone involvement, the first thing that jumps out is: This is metastatic breast cancer or metastatic lung cancer or colon cancer — something much more common than lymphoma. Again, as frustrating as it is, your patient journey is pretty common in terms of what I see other patients go through. At the end of the day, the other question that often gets posed is, “If we had caught this earlier, would my outcome be different?” I try really hard to reassure patients that stage 4 diffuse large B-cell lymphoma is just as curable as something that is of a limited stage. It probably has nothing to do with the fact that it took 6 months to render a diagnosis. It just has to do with the fact that this is a blood cancer, and these cancer cells will be in numerous places.
You highlight another important feature: Most lymphomas happen in older patients. You’re a young female who was otherwise very fit. You were physically active. So, sometimes we will even be swayed. As a lymphoma expert, I thought you had a different type of lymphoma when I first met you without having all of the information. It’s important to finish your workup. Get a biopsy. Get a PET scan. In your case, we did a bone marrow biopsy before we defined what treatment you should receive.
At the end of the day, we found out that you had diffuse large B-cell lymphoma. It was stage 4. There are various types of large cell lymphoma. You had one that was easily treatable with standard treatment. As you mentioned, once we finally nailed all of that down, we got you started on treatment right away.
Transcript Edited for Clarity
Donna, Hodgkin Lymphoma Survivor
In 2007, I was smack dab in the middle of a mid-life crisis. At 45-years-old, I had the strong feeling that time was ticking and I needed to get moving if I was going to have any chance of fulfilling my long-held desire to do something significant with my life. Being a stay at home wife and mom of two sons, ages nine and twelve, was rewarding but something was missing. I thought that if I went back to practicing law – picking up the life I put on hold while raising children – I would have the chance to continue of my life path toward something big. But for months I was chronically ill with a severe cough, itchiness, night sweats, and afternoon fevers, and frankly, it left me withered.
The cough was so annoying that I decided to visit a doctor so she could give me something to hush it. For six months, the first doctor diagnosed my condition as either bronchitis or a super virus. The second doctor felt the lumps growing at the base of my neck and on my clavicle and said they were not cancerous tumors. Meanwhile, the symptoms were worsening. At the insistence of my husband, I consulted with a third doctor who recognized the symptoms of lymphoma right away. A CT scan and PET scan confirmed his suspicions and I was referred into one of my local cancer centers in Houston, Texas. More testing at the cancer center confirmed it was Hodgkin lymphoma, Stage IIB.
“By the time I was given the news, I was somewhat relieved. I finally knew why I was ill.”
People often ask me how I felt when I was told after the PET scan that I had cancer. I wasn’t shocked or horrified. I didn’t think “Why me?” Before my diagnosis, I had done a lot of self-diagnosis via the internet and figured something was very wrong. So, by the time I was given the news, I was somewhat relieved– I finally knew why I was ill. I called my husband and a dear friend who had just battled breast cancer and in a matter of hours laid out a plan to tackle my lymphoma. I visited the Lymphoma Research Foundation (LRF) website and got every bit of information I could sent to me. Knowledge is power and to beat this I knew I’d need to gather all the power I could.
But I waited a day to tell my family. I wanted to have a game plan before calling them. They would be terribly worried and I wanted to put their minds at ease. The hardest part was telling my two sons. My boys knew that I rarely made a promise I couldn’t keep. So, when I gently told them I was ill but that I would take my medicine, be brave and get better, my older one asked “Promise?” I hesitated. Who really knew if that was a promise I could keep? Yet I did. I promised.
I then worked hard to keep my promise. Because of my age and other indicators that were not working in my favor, my husband and I decided that the best option for me would be twelve infusions of ABVD chemotherapy, the highest dose, every other week for 24 weeks, followed by five and a half weeks of radiation. I didn’t tolerate the treatment well and was hospitalized twice. As horrible as I felt when I was being rushed into the emergency room, I was even more emotionally devastated because it meant leaving my boys home bewildered, afraid and even more out of their normal routines. But, as promised, I worked hard to beat the cancer and I did—and I’ve been in remission ever since.
“After my diagnosis and treatment, I formulated a new life path toward achieving something of significance.”
Recently, I received a call from a friend who had just found out that her mom was diagnosed with cancer. I told her what I tell most anyone who is newly diagnosed. “I’m so sorry you have to go through this. Take a deep breath. Accept where you are. Get through this one day at a time. Don’t look too far ahead. Stay positive. Cancer treatment is not a sprint to the finish. It’s a lengthy marathon with highs and lows. We can only hope to crawl over the finish line weak and weary but victorious.” I highly recommend new patients write down their concerns and how they can be addressed. Put the concerns into categories based on which are addressed by their doctors, their employer, their friends and their family. When they write it all down, they won’t feel as overwhelmed and can formulate a plan that will work for everyone.
The Lymphoma Research Foundation’s (LRF) mission is to eradicate lymphoma and serve those touched by this disease. I urge anyone who is coping with a diagnosis to let LRF serve them. Visit the website to find information about their specific lymphoma, listen to the webcasts, attend a local Ask the Doctor program or other educational program in their area. Call or write the Lymphoma Research Foundation Helpline for information on clinical trials or financial assistance. I’m grateful LRF was there for my family at the time of my diagnosis because it offered reliable information that we used to formulate my treatment plan together with my medical team.
I never did get back to my life path of practicing law. Instead, after my diagnosis and treatment, I formulated a new life path toward achieving something of significance. I decided to assist LRF in serving others with lymphoma by volunteering in the Houston area and I’m so happy I did.
It is a remarkable organization. The people involved, including the staff, the volunteers and the medical community who partner with LRF, are truly caring, intelligent and dedicated to serving those with lymphoma. During my time volunteering, I met many wonderful people, patients and medical professionals alike, who I would never have known had I not been involved with LRF. Moreover, helping LRF has positively touched the lives of others– and as I’ve now learned and I tell my sons, there is no more significant thing one can do with one’s life than to be a positive influence on the life of others.
In my case, my story will begin with how my cancer was NOT diagnosed. I was never one to go to doctors for little things, but in the fall of 1996, I began running a low grade fever, complete loss of appetite, general malaise and pelvic pain that persisted for seven months.
I went to my internist, who despite running a wide range of tests, wasunable to identify the reason, all tests were coming back relatively normal with only slight elevations in WBC and a few others. I had numerous colonoscopies and gastric tests, all coming back normal. My internist early on seemed to have decided that what ever was going on was psychological…yes, I was anxious and depressed, but, when one cant eat, has pain, feels sick and is being put thru test after test with long delays between each one, I don’t think this is out of the ordinary.
After a few months, this internist was going on sabbatical and she essentially fired me as a patient, saying “Your fine, I see no reason for you not to try to get pregnant, and I think its best if you don’t see another doctor in this practice while Im gone.” I responded angrily, “I am not fine and I really don’t think getting pregnant would be the best idea when I can barely eat and have pelvic pain.”
The GI doing all the procedures and tests never seemed to doubt me, and said things like– “They told us in medical school, you NEVER want to be a difficult-to-diagnose-patient,” “Something is definitely wrong, probably something autoimmune that is taking a while to show it self clearly.” In an attempt to alleviate the pain based on a hypothesis that something autoimmune was going on, he put me on a short course of steroids.
I’d lost a total of 35 pounds, looked like a concentration camp victim. Although my doctors couldn’t diagnose me, the mailman at my office was spreading rumors that I had cancer because of the massive weight loss.
I went to another internist, but the chart implying that I was nuts followed. This internist pulled me off the steroids as I was running a fever around 100 degrees. More tests including exploratory surgery. However, a day or two after the steroids were stopped, my pain stopped and gradually my appetite returned. (note: the steroids I was on are
included in lymphoma treatments–that’s why the symptoms stopped)
All throughout this entire episode, a groin node, where the leg meets the body was slightly enlarged- a little over 2 cm. The internists were aware of this but said it was nothing. It seemed to be growing and several months after the pain had stopped and my appetite had returned, I asked the internist to biopsy it. He insisted it was nothing and I had the feeling he thought I was nuts. I persisted and got the biopsy. It came back benign. I felt absolutely fine for two years.
In terms of public opinion, every last doc I saw thru this ordeal was on the published lists of “best docs” in the city. Do I take these lists seriously anymore– NO.
Then a 4cm node popped up on the other leg. This time the Drs were worried, did the biopsy pretty fast. First impression was lymphocyte predominant Hodgkins. The pathologist had compared it with the earlier tissue and told me that an error had been made– both biopsies looked the same. He was not 100% sure of his diagnosis and sent it to other
experts to review– came back as an aggressive NHL lymphoma difficult to classify or grade, either an unusual marginal zone or unusual bcl-2 cd10 neg follicular that looks like its been caught in the act of converting from indolent to aggressive lymphoma.
The third group of docs at the NCI cancer ctr where I was treated decided it was a follicular grade 3 lymphoma with diffuse areas. No other tumors were seen on CT or PET. I was put at stage 2 because the tumor that had been misdiagnosed was on the other leg. From what I heard from one of the docs, the tumor board was pretty outraged at the earlier
misdiagnosis- the cancer had been obvious- the one doc was annoyed as he felt they charted it so as to protect the first pathologist rather than put was actually said in the meeting about how blatant the error was.
The mailman was right, the doctors were wrong. I was not totally crazy, I had cancer. Although I was VERY angry and scared about what the misdiagnosis would mean in terms of my eventual outcome I did not sue for malpractice.
I had 3 rounds of CHOP, pelvic radiation and then rituxan. I had been trying to convince my doc to give me R-CHOP as Id read about it, and he initially refused saying it wasnt proven. Then he and my rad onc went to ASH 99 saw the abstracts and my rad onc suggested I should also have rituxan– I told him, he needed to talk to my onc about it, as Id already asked. After they discussed it, my onc agreed to give me a course of 4 rituxan after the radiation.
So far, its been close to 6 years, and, thankfully, I have stayed in remission.
My advice from my experience– ALWAYS GET SECOND OPINIONS ON BIOPSIES. Dont stay with doctors who get frustrated because they cant make a diagnosis and then treat you like a hypochondriac when your body is telling you something big time is wrong, youve lost 35 pounds, have pain and are running a low grade fever!!!
Lymphoma Symptoms: Recognizing Them Early Aids Prompt Diagnosis
Regular checkups are especially important for people who are at a greater risk of developing lymphoma, such as those with an autoimmune disease, someone who’s had previous cancer treatment, or an individual with human immunodeficiency virus (HIV). (7)
Questions Your Doc Might Ask During the Appointment
To determine if your symptoms are caused by lymphoma, your healthcare provider might ask you the following questions:
- What are your symptoms?
- When did your symptoms start and how long have they persisted?
- How severe are your symptoms?
- Do your symptoms come and go or are they consistent?
- Does anything you do tend to improve or worsen your symptoms?
- What other medical conditions do you have?
- Have you ever had any type of autoimmune disorder?
- Has anyone in your family ever had cancer? If so, what type?
- Have you or your family members ever been exposed to toxins?
- What medication are you taking?
It’s a good idea to write down your symptoms, any questions you have, and all the medicines you take before seeing your doctor. Sometimes, having a family member or close friend accompany you to your appointment is also helpful. (8)
Why It’s So Important to Spot Symptoms
The best way to identify lymphoma early on is to report any possible symptoms to your doctor.
Just like with other cancers, diagnosing lymphoma in its early stages can lead to a better outcome.
The sooner you can get an accurate diagnosis, the earlier you can start on effective treatments. (7)
Celgene is now part of Bristol-Myers Squibb
In 2006, pitcher Jon Lester of the Boston Red Sox was undergoing chemotherapy for anaplastic large cell lymphoma, a potentially fatal cancer of the immune system, yet seven years later he won two 2013 World Series games.
Like Lester, many of the more than 70,000 people diagnosed with lymphoma each year survive because of advancements in chemotherapy and other types of cancer treatments. However, most people don’t realize that this cancer is actually a large group of distinct diseases. Which therapies they receive and how well they will respond to treatment depend on the type of lymphoma they develop.
Lymphoma, the most common form of blood cancer, occurs when the immune system produces too many lymphocytes, cells that guard the body against viruses and bacteria. These cells multiply normally in the course of an infection, leading to swollen lymph nodes, such as in mumps or mono, but after the infection has subsided, the cells die off and the lymph nodes return to normal size. When these lymphocytes become malignant, they multiply continuously and lymph nodes become larger and larger even in the absence of an infection. Hodgkin’s lymphoma, one of the many subtypes of lymphoma, is a remarkable treatment success story. The vast majority of patients are cured with chemotherapy and or radiation therapy. Patients have more than an 80 percent chance of cure even when the cancer has widely spread throughout the body.
Hodgkin’s lymphoma is characterized by the presence of an abnormal cell called the Reed-Sternberg. All other lymphomas—those that do not have Reed-Sternberg cells—are lumped into a category called non-Hodgkin lymphoma (NHL).
Types of Non-Hodgkin’s Lymphoma
There are more than 30 different types of NHL. Some forms are treated differently than others. For example, anaplastic large cell lymphoma, the type of lymphoma that Jon Lester was diagnosed with, often responds well to a chemotherapy regimen called CHOP, which includes four drugs: cyclophosphamide, doxorubicin, vincristine and prednisone. CHOP also works against other NHL sub-types that fall within the same category as anaplastic large cell lymphoma, known as peripheral T cell lymphomas.
The most common type of NHL, diffuse large B cell lymphoma (DLBCL), is also treatable and potentially curable. This fast-growing lymphoma accounts for about one third of NHL cases. For this lymphoma, it is typical for lymph nodes to double in size every month, and patients often present within a few months of having noted an enlarged lymph node. The typical first line treatment is a modified version of CHOP, known as R-CHOP, that adds a “targeted therapy” called rituximab which is a monoclonal antibody, that homes directly to the cancer cells and promotes their destruction. Over 90 percent of patients with localized, early stage DLBCL will be cured with a combination of R-CHOP and radiation therapy and approximately 50 percent of patients with advanced stage DLBCL will be cured with R-CHOP. Unfortunately for those patients who are not cured by R-CHOP there are less attractive second line therapies, including chemotherapy or high dose chemotherapy followed by autologous stem cell rescue, also known as bone marrow transplant. Many fewer can be cured at that point and the majority of these patients will not survive their disease.
The second most common subtype of NHL, follicular lymphoma (FL), grows slowly, with lymph nodes doubling in size approximately every six to 12 months, and patients often get diagnosed a year or later after they first noted an enlarged lymph node. Many patients may not require treatment initially and can just be observed. A small fraction never require treatment, however, eventually, the vast majority of patients will require therapy which is typically rituximab combined with a chemotherapy. Unlike DLBCL, patients with FL are rarely if ever cured but may live many years because of the slow growth of the tumor cells and the ability to treat with multiple therapies. Eventually, however, most patients will die of their disease and in about 25 percent of them their FL will transform to DLBCL which is typically not responsive to therapy in this setting.
Another type of NHL that responds to chemotherapy is Burkitt’s lymphoma. Doctors first noticed this cancer in children in Africa, but it also strikes people infected with human immunodeficiency virus (HIV), organ transplant recipients, and others. Chemotherapy combinations cure about 50 percent of patients, meaning there are many who need other choices. This lymphoma is very rapidly growing, and lymph nodes double in size within a few days to a few weeks. While it is rapidly growing, it is curable in many patients when diagnosed early.
Mantle cell lymphoma (MCL) only accounts for about five percent of the cases of NHL but it is a very aggressive type of lymphoma and is typically diagnosed in very advanced stages of the disease. Treatments like R-CHOP have improved the prognosis for patients, who now survive for five to seven years on average, but the disease recurs in nearly all patients and cures are extremely rare.
Continued scientific advancements are providing additional options for patients
The picture however is continuing to improve for all of the lymphomas with the continued research and development of exciting therapies that specifically target the cancer cells, and agents that modify the immune system. These new therapies include monoclonal antibodies that target directly to the cancer cells and kill the cancer cells by a variety of immune mechanisms, monoclonal antibodies that are “packaged” with toxic chemicals that target directly to the cancer cells to deliver these toxic agents, and tyrosine kinase inhibitors that are small molecules that can be given orally and target different growth receptors in cancer cells and very effectively kill the cancer cells, and other agents to stimulate the immune system. This is perhaps the most exciting era in lymphoma history where basic science discoveries are becoming available to lymphoma patients with the hope of improving their survival and quality of life.
I Knew… If Only the Doctors Had Listened to Me
As I approach the one year anniversary of the end of my chemotherapy treatment for what was Hodgkin’s Lymphoma, I feel compelled to educate others about the signs of Hodgkin’s Lymphoma so that I might raise awareness and hopefully help someone out there who could be harboring the same disease and not know it. Perhaps I chose today to go public with my horrid story, or complete medical failure by the best of the best at all the world class hospitals, in a city known for world-class medical care, to get to a quick and proper diagnosis, because today I had my first official haircut after losing it all to chemo last year. I have sat on my story for a year wondering how to share it and when and with whom. Today is the day.
For a year, prior to my diagnosis, I struggled with a terrible, body-wide, intractable itch. It is often referred to as “The Hodgkin Itch” since 30 percent of people harboring this cancer also have severe itching. It’s the kind of itching that has no rash, other than the scabs and scars you give yourself since you feel like you are being attacked from the inside out and outside in. It often worsens with triggers such as being outdoors in the heat and sun or eating high histamine foods, since the mast cells are basically degranulating when reacting to the cancer in this way. Nothing would make it better and nothing would make it stop, until the first night of chemo when the itching came to a sudden near halt. It felt like a miracle, as I had gotten to the point where I was unable to sleep as the itching flared at night. It had gotten to the point where I had lost any quality of life.
For a year, I researched my own case. For a year, I consulted doctor after doctor, asking almost everyone, “Could this be Lymphoma? I think this is Lymphoma! Over 30 percent of patients present this way!” Initially, each meeting with each new doctor would go the same way. They asked me if I was a doctor after listening to my detailed, educated and articulate presentation of my medical case, my endless blood tests, skin tests, and various diagnoses (ranging from Mast cell disorders to Small Fiber Neuropathy to possible Lupus; all of which were wrong). Once the doctors found out that I was not a doctor myself, they stopped listening. I was fired by several for not fitting into their business model of “diagnose within ten minutes or get out of my office.” I was put on over 15 medications and creams, none of which made me better. All had negative side effects. I told those same doctors, “I have been getting worse not better since you put me on xyz medication. Did you see that last blood test? It is borderline low. It is another example of possible Lymphoma. Are you sure it isn’t Lymphoma?” Alas, I was dismissed as were my theories.
Six months after a world-famous, Harvard-affiliated doctor diagnosed me with a “Mast Cell Disorder,” I found an enlarged lymph node in my neck. It was close to my clavicle bone and apparently an ominous sign. My primary care doctor freaked the moment she was shown what I had found. She started pummeling me with questions: “When was your last colonoscopy? When was your last mammogram? You need this biopsied ASAP. We do not like enlarged lymph nodes in this area.”
I had dismissed it as a side effect of one of the meds I was on, even though Google pointed to it being yet another sign of Lymphoma. But since 25 doctors told me emphatically that cancer was not possible, I let it go for two months before showing the bump on my neck to my doctor. I had also begun coughing non-stop every time I drank or ate anything. I figured it was GERD but without the acid. Nope. It was masses pressing on my lungs and all over my chest cavity.
I woke up choking in the middle of the night. I thought maybe I had developed some sort of minor sleep apnea or snoring disorder in my “old age.” Alas, nope, it was the masses that had developed near my trachea that were pressing on it. My skin tone had changed to a grey ugly pallor that no makeup could help, no matter how much I applied. I thought that this might just be what happened as you aged. A neighbor even stopped me to ask if I was anemic. Turns out I was, but I have come to find out that the grey skin tone seems to be a common subtle sign of cancer. Halfway through chemo, my skin tone reverted by to normal. Many commented on it.
Eleven months after the itching began, I found myself lying on an operating table with the head of Oncology surgery at the Brigham and Women’s Hospital in Boston, as she attempted to remove the lymph node and send it for biopsy to determine if it was cancer and, if so, what kind. She escorted me to get a CAT Scan, horrified that not one doctor had ordered one in the year of my begging each one to consider my case and to consider that it could be cancer. I saw more than 25 doctors across three states, repeatedly asked them if I could have Lymphoma, and not one ordered a CAT Scan. Instead, they dismissed me, interrupted my analysis, halted my efforts to explain to them what I found online.
Six hours after the CAT Scan was done I found myself in front of the Mast Cell doctor as she sheepishly told me I had Lymphoma. It was not a Mast Cell disorder after all. She told me that I had five years to live.
My first reaction was total disbelief. “I asked you six months ago if this could be Lymphoma and you said no?” My eyes scanned the CAT Scan report, lingering on the word Masses, which littered the page. My doctor’s eyes avoided mine, in favor of the computer screen separating us. “So you can go eat a Lobster roll now as you do you not have a Mast Cell Disorder. It was the cancer making the mast cells act like that.” I thought to myself, “Seriously? All she can think to say is go eat a God damned Lobster roll? And how does she know I only have five years to live?” Not the things you say to a cancer patient and not accurate, thank God.
I worried about how I would tell my mother. She had lost everyone, including her granddaughter. I could not be yet another burden to her endless inventory of early family deaths.
Luckily for me, I “only” had Hodgkin’s Lymphoma, the most curable of cancers. Most of us will get to an 85% cure rate, usually with the help of 12 grueling rounds of ABVD chemotherapy (that is four different chemo agents given one after the other on chemo infusion days) and another month of Radiation.
After finally being diagnosed, one oncologist told me that I was the “poster child for Lymphoma” in terms of my symptoms: itching, night sweats, coughing and an enlarged lymph node ultimately, along with mild anemia, elevated SED rate, and absolute lymphocytes that were dropping like a rock over several years. She stated, “You could have had drive-through chemo if that had been caught earlier.” In other words, four maybe six rounds of chemo, not 12, and no radiation.
Unfortunately, by the time it was accurately diagnosed, I had stage four Hodgkin’s Lymphoma, and it had spread to my sternum. Therefore the need for radiation. Having heard and read about the horrid side effects of radiation, I opted for something called Proton Radiation which does much less damage to the body, since it hits the cancer target and falls off. Traditional radiation, on the other hand, goes through you while damaging everything in it’s path. For those of you who might be facing certain cancers (breast, prostate, brain and Lymphoma), I urge you to seek out proton radiation as a better alternative.
Fast-forwarding to post-treatment: I had a great six month CAT Scan and continue to be “cured”. I am lucky. But I still wish I had been diagnosed earlier. I suffered dearly for the full year leading up to the diagnosis, and now I continue to deal with the impact and side-effects of the chemo and radiation daily.
Unfortunately, the demise of our health care can be partially attributed to the demise of proper reimbursement of office visits by insurance companies. And to the increasing pressure the hospitals put on their doctors to see ten times the number of patients than they can possibly diagnose and treat properly. Doctors have hit burn out. Favoring “business models” over patient care and time to diagnose. The only answer is to demand to be heard and, if you ever think you have cancer, get yourself to a doctor that is affiliated with a cancer hospital ideally. Alas, the catch-22 here is that cancer facilities demand that you already be diagnosed with cancer prior to being seen. I keep asking myself what I could have done differently to have gotten anyone to hear me. No one seems to be listening. At least none of the doctors I went to. What could I have done to have gotten diagnosed earlier? Early diagnosis is half the battle in curing cancer.
What is the moral of this story besides learning the signs of Hodgkin’s Lymphoma? Trust yourself. You know your body and you will do ten times the research online than any doctor will do on your behalf (and if you are smart, you will look up the information on the correct reliable websites such as Mayo Clinic, for example, and not some blogger’s site). In my case, all I had to do was Google “causes of chronic itch”. The Lymphoma answer was on the first page of every Google search. Shame on the doctors that failed to even do this to rule in or out my own concerns. Alas, their lack of knowledge and clear lack of curiosity prevailed. For reference, most of my medical consults and doctors were in Boston – a city widely hailed as the top city for medical care in the country.
All that is now behind me. Luckily, one fabulous cancer facility does exist in Boston, called Dana Farber. They saved my life and did so with a kindness and compassion that I have never witnessed at any other medical facility anywhere. The first day I walked into Dana Farber, I was still in shock. I saw so many sick people in line for registration, in line to check in, in line to get bloodwork done. My reaction was immediate: “I am not a member of this club, I am not a member of this club.” Seven months later, as I had learned I was cancer-free, I entered the elevator and without realizing it, I said out loud, “Thank God for this place”. The 11 other people behind me piped in in unison with a chorus of “Amens.”
My diagnosis with non-Hodgkin lymphoma
CT scan and hospital admission
And so it began, as I was apparently not really that ‘symptomatic’, lots of reassuring words were used and the scan was arranged along with yet more bloods, I was wondering if I might start to resemble a sieve! oh how naive, this was just the beginning. Sadly the reassuring words seemed to miss the radiographer, who felt the need to tell me after my CT scan, that my confessed fear of needles was, “the least of my worries”. She was right. A not so little lymph-node attached to my bowel had put on weight and was considerably bigger than regulation size, lovely. A biopsy was needed, which meant an overnight stay in the clinic, great, I was hardly prepared and had not packed anything; after all everyone was telling me I was fine.
My protests of not wanting to go in an ambulance fell on deaf ears, and I walked to the ambulance in hiking boots and a white hospital gown; which I might add I was holding onto very tightly given they have no back! I’m sure there is a very important reason why this is but I’m convinced it’s purely for abject humiliation!
Biopsy & diagnosis confirmed
So what’s a biopsy? Well they needed to take a tiny sample of the node and send it away so that clever people could put it under a microscope and tell me exactly what was going on. The trouble was the offending node could not have been in a more difficult place, so it was back to the CT scan for a guided biopsy with one of only 3 doctors qualified in the UK to perform the surgery. The ‘surgery’ basically meant spending 45 minutes face down while somebody in another room slowly guided needle with the aid of the scanner…. To be honest not painful just weird… And having to lie still, and I mean still, has always been pretty difficult for me!
So I retired to my small little room to spend the night with a nurse who every 30 minutes checked her neat little biro circle that had been carefully drawn around a gauze which was covering my small wound, it became quite an event checking that I had not bled Beyond the biro boundary. During times of stress it is amazing how and what things affect you, this lovely nurse made a throw away comment that if there is going to be a “drama” it would be at 2.00am…as that was always the time for a drama, I did not sleep a wink before 2.30am.
The following morning, relieved that I had escaped the 2.00am curse,… my wound had behaved and I was ready to go home, a relief really, given my current situation was a secret, and no one in my family knew of the unfolding events; a longer absence would’ve been noticed.
I opened the front door relieved to be home and my eyes were drawn to a family picture staring back at me, The picture had been taken 18 months earlier, ironically on the same day I had received a letter saying a recent examination, arranged during one of my regular GP trips, has shown an enlarged spleen and lymph node, the following words seemed to jump out of the page ‘query lymphoma’.
Panicking I had called my surgery and arranged to see my GP… the letter had suggested referring me to haematology, but it was decided that there was nothing they could do that my own surgery could not…so I saw the practice nurse…a week later I was back, “It’s fine you have an excellent blood” I sighed with relief still clutching the letter, “go home and stop worrying”…… I’m sure I heard him mutter hypochondriac as I closed the doctor’s door.
But now on 23 December at 3:30 PM the results were in, my phantom nemesis had a name, Follicular non-Hodgkin’s lymphoma, Grade 4B. Now the grading was (and still is) a bit of a mystery to me, but it seemed to be linked to how far the ‘stuff’ had progressed… And mine was in my bone marrow, a pretty major organ by all accounts.
Read more about Wendy’s experiences of non-Hodgkin lymphoma
Find out more about non-Hodgkin lymphoma
For more than 20 years, I had a small lump on my back. I had it biopsied during that time, but the results always came back benign. In March of 2009 when I was 58 years old, my wife, Connie, noticed that the lump had changed in size and color. She was concerned.
I went to see a dermatologist near our home outside Columbus, Ohio, who did a punch biopsy of the area. The results indicated that I likely had skin lymphoma. The doctor recommended that I have additional tests performed at a nearby cancer center,which was a highly regarded facility.
At the cancer facility, I had a CT scan, blood tests and a bone marrow biopsy. The results revealed that the lymphoma was not cutaneous, or skin-based, as the dermatologist had believed. Rather, the disease was systemic, meaning it was in my bone marrow, with about 30 percent to 40 percent bone marrow involvement. Some lymph nodes in my abdominal area were enlarged, and my spleen was slightly enlarged. The diagnosis was low-grade B-cell non-Hodgkin lymphoma.
When I received the diagnosis, the doctor told me I was at stage where no treatment was needed until I experienced symptoms, such as night sweats, anemia or raised lymph nodes.
Hearing this recommendation, my wife, Connie, and I were a bit shocked. I had blood cancer. They told Connie and I not to worry about it, but how would that even be possible?
When we came home from the hospital, we decided to look for another facility to get a second opinion. Late one night, I found Cancer Treatment Centers of America® (CTCA) during a search online. I had a “live” chat with a representative, who was able to verify that my insurance would be accepted. Soon, I had an appointment scheduled.
From the start of my three-day consultation, I could see how CTCA® was different. The way we were greeted and the overall atmosphere were so welcoming. We received a schedule for the visit, found out about activities we could join while we were there and had virtually everything taken care of.
My primary oncologist at CTCA agreed with the previous recommendation that no treatment was needed at that point. The difference was he explained why no treatment was needed, and what would happen if treatment became necessary at some point.
I also met with a naturopathic oncology provider and a dietitian while at CTCA, both of whom suggested ways to keep my immune system strong. I have been following these approaches for several years now.
No longer watch and wait
In August 2015, I started having chest and arm pains after a walk. Throughout the “watch and wait” period, my red blood cell count and hemoglobin numbers were continuously decreasing. A bone marrow biopsy was scheduled and showed that 90 percent of my bone marrow was now involved. At this time, I chose to begin treatment.
At CTCA, I had four rounds of chemotherapy, combined with an antibody treatment for four months. The side effects from the treatment were very minor, and I continued to meet with my naturopathic oncology provider to discuss ways I could keep my immune system strong. In December 2015, Connie and I received a wonderful Christmas present: I was in remission and no further treatment was needed.
Living my life
Today, I am living my life to the fullest alongside my bride. Connie is my soul mate. We have been married for 45 years, and we plan on many more years together. We love spending time together with our children and our grandchildren. I am so thankful I am in good health after almost two years with no evidence of cancer.
Becoming part of the CTCA family has been wonderful. Connie and I joined the Cancer Fighters® Care Net together. And I participated in a Celebrate Life® event five years after my diagnosis in 2014. We enjoy our trips back to CTCA for my check-ups.
The beginning of Bud’s journey with cancer was frightening. Skin lymphoma is simple to treat compared to other types of cancer, so we did not do much research of our own after the initial diagnosis.
After Bud had the biopsy, we waited about five weeks for the results. Upon our return for the results, he had additional blood tests and I knew that Bud didn’t have skin lymphoma. I was sure that the cancer was in his whole system. I’m not a quiet person, but the diagnosis left me speechless. I was numb and had a hard time absorbing any information. When the doctor told us that no intervention was needed, I was very concerned.
Bud and I read more about non-Hodgkin lymphoma and came to understand that the disease can be slow to progress, but that it could become life-threatening in time. So, we wanted to explore other options.
I had mixed feelings about CTCA at first. As with any new experience, you don’t know what you’re going to encounter. However, from the start of his consultation, I was totally pleased. The reception was welcoming, we took classes, participated in the laughter club—it was fun and inspiring. The care was professional and also compassionate. The naturopathic oncology provider and dietitian told us what Bud could do in terms of diet and lifestyle changes that might help stop the disease or slow its progression. We were willing to try any intervention that might help, and I was grateful for the experts who were able to guide us in that direction.
Bud’s care team at CTCA always included me in the process. They gave me space to ask questions. No one was ever in a hurry. If there were aspects of his disease that I didn’t understand, they would patiently explain the details over and over. When we were meeting with clinicians, we felt that we were their number one and only priority for that moment. CTCA is an environment of caring.
As a caregiver, I have learned the importance of just being there—to be willing to listen, hold a hand, give a hug, whatever is needed. Support comes in many forms, but mostly it’s just about being there. When Bud was working, I was always making his meals and following his dietitian’s advice about what fruits and vegetables to add and what vitamins to take. I try to provide the support he needs at any time. Through it all, we have remained strong together, united by our faith and our wish to have many more years together and with our family.
The clinicians at CTCA have empowered Bud by being forthcoming with information and sharing it in the most positive light possible. They provide reassurance that if the cancer does progress, they are there to treat it.
I have taken the positivity we feel at CTCA and translated that into our life together. We seldom sit around on the couch watching TV. Instead, we get up and do things, keep active. Bud didn’t retire so he could come home and wait to get sick. We have our lives to live, and we are going to live our lives.