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Author: Anne Belott

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FAQ Hodgkin Lymphoma Non-Hodgkin Lymphoma

Types of Lymphoma

Types of Lymphoma, Symptoms and Diagnosis, and Treatment Options

Lymphomas refer to a broad class of blood cancers that affect blood cells, bone marrow, lymph nodes, and the lymphatic system in general. Leukemia, myeloma and myelodysplastic syndromes (MDS) are other common types of blood cancers, and there are more than 70 different types of lymphoma.

Learn more about the types of lymphoma, signs and symptoms, treatment options, and patient stories.

lymphoma
Table Of Contents
  1. Types of Lymphoma, Symptoms and Diagnosis, and Treatment Options
  2. What is lymphoma?
  3. Hodgkin lymphoma
  4. Non-Hodgkin lymphoma
  5. Lymphoma signs & symptoms
  6. Lymphoma Diagnosis
  7. Lymphoma Staging
  8. Lymphoma treatment
  9. Lymphoma survival statistics
  10. Want to share your story?

What is lymphoma?

Lymphoma is a type of blood cancer that affects the lymphatic system. The lymphatic system, or lymph system, refers to the circulatory and immune system organs and tissues that help support your body’s immune functions.

There are many different types of lymphomas, some of which are aggressive and others that are very slow growing. The more than 70 types of lymphoma are broadly put into one of two classes: Hodgkin lymphoma or non-Hodgkin lymphoma.

Both Hodgkin and non-Hodgkin lymphomas can occur in children and adults, and they generally develop from white blood cells called lymphocytes. Cancer develops in B lymphocytes and T lymphocytes (B cells and T cells, respectively) and can then travel to other parts of the lymphatic system and beyond.

Cancer cells can eventually form tumors in lymph nodes, bone marrow, the bloodstream, and other organs.

Hodgkin lymphoma

According to the Lymphoma and Leukemia Society, approximately 8,000 – 9,000 people are diagnosed with Hodgkin lymphoma (Hodgkin’s disease) annually.

Hodgkin lymphoma’s cellular hallmark is the presence of a particular type of tumor cells called Hodgkin Reed-Sternberg cells, a mutation of B lymphocytes. These abnormally large cells are confirmed through biopsy samples.

Hodgkin lymphoma is more common in young adulthood, particularly in adults in their early 20s. Hodgkin lymphoma may also present in late adulthood (55+). It affects both males and females.

Hodgkin lymphoma types

There are two main subtypes of Hodgkin lymphoma: classical and nodular lymphocyte predominant. Ninety percent of Hodgkin patients present with classical Hodgkin lymphoma.

Classical Hodgkin lymphoma can be broken into four subtypes:

  • Nodular sclerosis
  • Mixed cellularity
  • Lymphocyte-rich
  • Lymphocyte-depleted
Wade looking out over a lawn

In person I was told that it wasn’t cancer, that it was some sort of infection that was causing the lymph nodes to be inflamed, but they sent it in to a different place for a second opinion.

That came back as Hodgkin’s.

Wade W., classical Hodgkin lymphoma

Non-Hodgkin lymphoma

Non-Hodgkin lymphoma, sometimes abbreviated as NHL, is the more common class of lymphoma. It can occur at any age, though it is more common in older adults.

There are two major divisions of NHL: B cell lymphoma and T cell lymphoma.

B cell lymphoma

Approximately 80% of NHL diagnoses are B cell lymphomas. This can include:

T cell lymphoma

Although there are some rare T cell NHL cases, the more common T cell lymphomas account for approximately 15% of non-Hodgkin lymphomas, including:

  • Peripheral T cell lymphoma not otherwise specified 
  • Anaplastic large cell lymphoma
  • Angioimmunoblastic lymphoma
  • Autaneous T cell lymphoma

Lymphoma signs & symptoms

Lymphoma symptoms will vary based on the individual, but many patients report painless swelling of lymph nodes in the neck, armpits, or groin. Some other common symptoms include:

  • Fever
  • Rapid weight loss
  • Night sweats
  • Fatigue
  • Body itching

However, these symptoms may not necessarily mean cancer. Swollen lymph nodes are common when fighting infection or when you have a cold. If any symptoms persist without change (or they get worse), you should see a doctor so they can determine the root problem.

I think a lot of the cancer websites really get it right when they describe cancer fatigue as the fatigue that doesn’t go away when you sleep or you rest.

Luis V., diffuse large B cell lymphoma

I had an incredible hard time breathing through my nose (near 90 to 100%) blockage which led me to seek the ear, nose, throat (ENT) doctor to take a look.

As a result, I had the ENT in Santa Barbara diagnose the issue and help by having a simple procedure to remove the tissue. When they removed the tissue, he found some of the tissue suspicious and as a result, sent it in for a biopsy.

It was through this surgery that they first discovered Hodgkin lymphoma cells in the tissue removed from my adenoids. Before that, I had no idea that I had Hodgkin’s lymphoma.

Helicon K., Hodgkin lymphoma

Lymphoma Diagnosis

Because there are so many types of lymphoma and treatment varies based on type, making the correct diagnosis is critical. Your doctor will review your physical symptoms, but diagnosis is determined through a biopsy.

A biopsy is a procedure where a doctor removes a small piece of tissue for examination. A surgical biopsy is an outpatient procedure where the lymph node or diseased tissue is removed partially or in full.

A core needle biopsy involves using a hollow needle to remove a core tissue or fluid sample.

In addition to a biopsy, your medical team will order imaging tests to determine where the lymphoma is located and how far it has spread. Your doctor will also order a bone marrow biopsy to determine if the lymphoma has spread further.

Imaging and bone marrow biopsy will help determine staging, which will help inform and guide treatment.

In the following three weeks I had a needle biopsy, bone marrow biopsy, a port placed, a surgical biopsy because the cells from needle biopsy had dried up by the time they reached the Mayo Clinic, and a PET scan. 

I’ll be honest, the bone marrow biopsy hurt, but that was probably because she couldn’t get enough fluid so she had to do it four times. I don’t think that normally happens, but the surgical biopsy was probably the worst.  It hurt for weeks after and I’m now left with a decent sized dent on the right side of my chest where the scar is. 

Keyla S., Non-Hodgkin lymphoma

Lymphoma Staging

The Ann Arbor classification system was originally developed for Hodgkin lymphoma diagnosis but is now used to diagnose disease severity for all types of lymphoma.

  • Stage I – Stage I is localized to a single lymph node region or single organ.
  • Stage II – Stage II defines disease that has spread to two or more lymph node regions on the same side of the diaphragm.
  • Stage III – Stage III involves disease on both sides of the diaphragm and may or may not involve the spleen.
  • Stage IV – Disease has spread to multiple organs outside the lymphatic system.

Some hospitals consider Stage III and Stage IV as the same stage because treatment approaches are similar.

Lymphoma treatment

Treatment will vary based on the type of lymphoma, the staging, and how aggressive the disease is. Broadly speaking, these treatments are the most common:

Hodgkin lymphoma treatment

Hodgkin lymphoma is usually treated with chemotherapy and radiation therapy. The most common chemotherapy course is known as ABVD, named after the four drugs used in treatment:

The “red devil” was push chemo. That typically went by pretty fast. That one didn’t do a whole lot to me during the infusions. I only had two infusions of the bleomycin because it was destroying my lung function so bad. They had to cut it out.

Once I got to the vinblastine, I was just so exhausted. I pretty much slept through that and had the dacarbazine. That was light-sensitive, and it was wintertime thankfully, but any time I would go out in the sun, it was so sensitive. I had to wear long sleeves and hats. 

Madi J., Hodgkin lymphoma

I got ABVD chemo for the first two cycles, which was four rounds. For the rest of the eight treatments, it was just the AVD.

They took out the B drug (bleomycin) because my PET scan after the first four treatments showed that I had no evidence of disease. They were able to take out the bleomycin since it can be hard on your lungs.

Lia S., Hodgkin lymphoma

Once I got to the vinblastine, I was just so exhausted. I pretty much slept through that and had the dacarbazine. That was light-sensitive, and it was wintertime thankfully, but any time I would go out in the sun, it was so sensitive. I had to wear long sleeves and hats.

Madi J., Hodgkin lymphoma

Non-Hodgkin lymphoma treatment

Non-Hodgkin lymphoma is also often treated with chemotherapy, with R-CHOP being the most common chemotherapy course for B cell lymphomas:

The first round, the first week I just felt headache-y. I wouldn’t say I felt 100-percent but I felt fine, which is really weird. That was good, the first round, until about the third week. My hair started falling out.

I think in my third round, my doctor said rounds three, four, and five are the hardest. She was 100-percent right. Round two was okay, I felt gross the first week but nothing major. I felt nauseous but it was controllable.

Round three I felt really awful. Headache-y, so nauseous, everything tastes awful. I did get really bad mouth sores every round after that. It really hurt to swallow. Brushing my teeth was incredibly painful so that was really hard.

Emily G., Non-Hodgkin lymphoma

Lymphoma survival statistics

Since 1960, when data first became available, 5-year survival rates for Hodgkin lymphoma have doubled from 40% in the 1960s to almost 90% in 2016.

For people age 45 or younger at diagnosis, the 5-year survival rate is around 95%.

For non-Hodgkin lymphoma cases, the 5-year survival rate is around 75% as of 2016. In people with NHL diagnosed younger than 45, the 5-year survival rate is 84.7%.

And it’s not perfect, right? Because here I am. I’ll be six months in remission in a few days. Gee, that’s great, right? What does it mean? Well, it doesn’t really mean anything in and of itself. Doesn’t mean I’m cured, doesn’t mean that I’m going to be alive in 10 years, it doesn’t mean I’m going to be alive 20. What it means is that I’m six months in remission, and I’ve got today.

What am I going to do today? I’m going to help somebody today. How am I going to be seen today? How am I going to see other people today? That’s really important. And I would encourage people, when others say, “Live every day as if it was your last,” to really shut that message down. Because to me, that message works best when you cut it in half, and you just leave it at “Live every day.”

Luis V., Non-Hodgkin lymphoma

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Share your story with us!

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FAQ

Cancer Remission

Cancer Remission

Is cancer ever ‘cured?’ Cancer remission, cures, and coping with recurrence

Fighting cancer is a battle for life, but are you ever really ‘cured’? We’ve assembled stories from patients, caregivers, and medical professionals to talk about what remission really means and how to cope with the anxiety of follow-up scans (“scanxiety”) and the threat of recurrence.

But the short answer is recurrence is always something to celebrate!

Table Of Contents
  1. What does cancer remission mean?
  2. Cure vs. remission
  3. How do you get to cancer remission?
  4. Ways to help stay in remission
  5. Survival statistics
  6. Scanxiety
  7. Understanding recurrence
  8. Surviving cancer
  9. Want to share your story?

What does cancer remission mean?

After you’ve completed cancer treatment, your doctor may tell you you’re ‘in remission’. That’s awesome! But what does that mean? It means more than simply finishing treatment.

In general, remission broadly refers to a decrease or absence of cancer for at least one month. Doctors can monitor this through scans, bloodwork, and physical exams. You may also notice less pain and other symptoms of disease. It’s time to take a breath and enjoy the moment.

There are two types of remission: partial and complete.

Partial remission

Partial remission is often used to describe cancer that is still evident but has gotten smaller or is reduced overall. Patients with ‘chronic’ cancers (like certain types of leukemia) sometimes go into partial remission.

This means your oncologist may recommend a break from treatment while monitoring for any changes. Some people end up on a reduced treatment plan, meaning treatment may be less aggressive.

Complete remission

Complete remission is often listed on medical reports as ‘No Evidence of Disease’ (NED). There must be no evidence of disease for at least one month to be considered in complete remission.

Cure vs. remission

Doctors are hesitant to ever use the word ‘cured‘ following cancer treatment. Even though there may be no obvious evidence of cancer via scans and bloodwork, it is impossible to tell if the cancer is 100% gone.

It is possible for cancer cells to come back, and it’s most likely that it can come back in the first five years following cancer treatment. When it comes to complete remission, there is no special term for remission at the 5- or 10-year mark (or more!).

You may, however, hear the term ‘cancer-free’. Again, it doesn’t mean the cancer won’t come back, but doctors feel confident that there is no evidence of cancer.

It was crazy because two-and-a-half months earlier, my whole body was loaded with these cancerous white blood cells from top to bottom, stage four. And two-and-a-half months later, there’s no evidence of any disease in me? How is that possible? It was miraculous. 

Sheryl B.

How do you get to cancer remission?

That’s a complicated question. Cancer treatment is based on the stage at the time of diagnosis, the type of cancer, and other health considerations.

Your doctor will assess your unique case and determine a course of action. Some may choose more aggressive treatment. You may have one or a combination of the following treatments:

Even though these treatments may help kill or reduce cancer cells, they can also come with side effects that are challenging to manage and live with. Long-term side effects are another concern.

Ways to help stay in remission

Some patients undergo maintenance therapy, which could be low doses of cancer treatments to help keep the disease from advancing or returning. Not all cancer patients do maintenance therapy.

Since this is a cancer with no cure, this maintenance helps extend your remission time. I visit my oncologist every three months to look at my blood tests. I am hoping the cancer stays away for a long time.

Carlos C.
Carlos

After cancer treatment, many people try to adopt a healthier lifestyle in order to prevent recurrence. It’s not a guarantee, but the following lifestyle changes may help:

  • Eat more fresh fruits, vegetables, and whole grains
  • Quit smoking (or don’t start)
  • Maintain a healthy weight
  • Drink alcohol in moderate amounts
  • Exercise regularly
  • Try to maintain good mental health and stress management

It’s been years. I still feel like I’m healing and recovering, but at the same time, I surprisingly feel as healthy as I ever have. I practice yoga a lot these days, and I can bend in some fun ways.

Alicia B.

Survival statistics

When you’re dealt a cancer diagnosis, the natural question is: ‘What are my chances of survival?’ That’s not a one-size-fits-all question, but there are statistics that can help inform.

Survival statistics are based on large groups of people with the same diagnosis. You may see the following statistics:

  • Survival rate: This notes the percentage of people with a specific cancer alive for a certain amount of time after diagnosis (1, 5, 10 years, etc.)
  • Overall survival rate: The percentage of people with a specific stage and type of cancer who have survived for a certain period of time after diagnosis.

Most researchers look at 5-year survival rates because the chance of recurrence after 5 years is statistically lower for most cancer types.

When you’re first diagnosed, and you look up survival statistics, they’re terrifying. You act as if you should die before you finish reading the paragraph. The key thing is, in order to have survival statistics, they have to be based on old number because these are people who have already died. So, what’s going in the future must be better.

Dr. D. Ross Camidge

Scanxiety

Scanxiety is a term that grew out of necessity. It describes the anxiety that cancer patients and survivors feel leading up to X-rays, CT scans, MRIs, PET, and other diagnostic tools that will show cancer status. Some researchers believe that scanxiety may relate to post-traumatic stress disorder.

Learning how to cope with fear of the unknown can help ease this type of anxiety. Breathing and meditation exercises, healthy distractions, and therapy can all help reframe your mindset.

I took a mindfulness class that helped me slow down my reaction to thinking. I learned that you can’t control what you think and feel, but you can influence how you react to those thoughts and feelings. It calmed me down. 

Stephanie Chuang, The Patient Story founder

Understanding recurrence

In the months and years following cancer treatment, there is a chance that cancer can come back, which is known as ‘recurrence’. Recurrence can occur in the same location as the original cancer, but it could possibly occur elsewhere in the body.

Unfortunately, there is no way to know if you will experience a recurrence. It’s absolutely critical to follow your doctor’s advice and follow up with all recommended scans and lab work.

Coping with recurrence

A recurrence can revive old feelings of fear and anxiety, but there are ways you can cope.

You know more now than you did the first time. You know what to expect with scans and how to cope with treatment. Treatments have also likely improved since the first time. Cancer treatments are developing day by day.

Additionally, you know your healthcare team — and they know you! There’s comfort in knowing you have a team ready to support you. Because you’ve been through this before, you may already have some coping strategies in your back pocket like yoga, journaling, and support groups.

Surviving cancer

Survivorship means different things to different people, but the American Cancer Society uses the term ‘cancer survivor’ to describe anyone living who has received a cancer diagnosis. Other people use the term survivor to describe those who have completed treatment.

Some don’t wish to use the term at all. Life with and after cancer will manifest differently in everyone because our lives are all based on unique experiences.

Regardless of the language you choose to use (or not), remission is something to celebrate.

Want to share your story?

Feel free to fill out our Get to Know You form!

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FAQ Info

What is Myelofibrosis?

What is Myelofibrosis?

Symptoms, diagnosis and treatment

Myelofibrosis is a rare cancer of the bone marrow. Learn more about myleofibrosis symptoms, diagnosis, treatment and more.

Table Of Contents
  1. What is myelofibrosis?
  2. How rare is myelofibrosis?
  3. Should I go to the doctor?
  4. What causes MF?
  5. What are the risk factors?
  6. What are the possible complications of myelofibrosis?
  7. Pain
  8. Liver complications
  9. Secondary tumors
  10. Bleeding complications
  11. Acute myelogenous leukemia
  12. How is myelofibrosis diagnosed?
  13. How is myelofibrosis treated?
  14. Anemia treatments
  15. Enlarged spleen treatments
  16. Bone marrow transplant
  17. How to cope with myelofibrosis
  18. Advocate for yourself
  19. Find support
  20. Find your own coping strategies
  21. Other Cancer General Info Articles

What is myelofibrosis?

Myelofibrosis is a bone marrow cancer that disrupts blood cell production. It is an uncommon cancer sometimes generically known as bone marrow cancer or blood cancer. Myelofibrosis (MF) is considered a chronic disease and a type of leukemia.

A hallmark of this disease is that it causes scarring in the body’s bone marrow, which can lead to severe fatigue due to anemia. This scarring (fibrosis) reduces platelet counts, which can increase bleeding risk. MF can also result in an enlarged spleen.

There are two type of myelofibrosis: primary and secondary. Primary myelofibrosis develops on its own and secondary myelofibrosis develops in conjunction with another bone marrow disorder.

How rare is myelofibrosis?

myelofibrosis gene mutation

Myelofibrosis is considered rare or uncommon — There are fewer than 20,000 patients (men and women) in the US. It’s possible for myelofibrosis to occur at any age, but it is most often diagnosed in adults ages 60-67.

Symptoms of myelofibrosis

Because myelofibrosis is a chronic condition, some people may have it but may not experience symptoms right away. According to the Mayo Clinic, it’s unusual to feel signs or symptoms in the early stages.

More aggressive cases might require more immediate treatment.

The disease will progress over time and start to make a noticeable impact on blood cell production. Some of the more common signs and symptoms include:

  • Weakness, fatigue, and shortness of breath
  • Anemia
  • Pain below the ribs on the left side, or a feeling of fullness
  • Bruising easily
  • Bleeding easily
  • Night sweats
  • Fever
  • Bone pain

Should I go to the doctor?

If you are experiencing symptoms that do not get better, make an appointment to speak with your doctor. Because MF is not common, doctors will likely want to rule out more common diagnoses first.

What causes MF?

Like all cancers, myelofibrosis is, at its core, a mutation. Bone marrow stem cells have the ability to develop into red blood cells, white blood cells and platelets. These stem cells can develop mutations in their DNA, which can start to cause long-term blood cell production problems.

One of the most common issues is a lack of red blood cells and an overabundance of white blood cells, which causes anemia. Platelet production may reduce as well.

Bone marrow is normally spongy, but it scars in people with myelofibrosis.

In some cases, the Janus Kinase 2 (JAK2) gene mutation has been identified. Other mutations are the CALR and MPL genes. Some patients do not have an identifiable gene mutation and researchers do not know the root cause of these mutations.

If a specific gene mutation is associated with your diagnosis, it can help the medical team determine prognosis and treatment.

What are the risk factors for myelofibrosis?

What are the risk factors?

There are a few risk factors associated with MF:

  • Age: Most diagnoses occur in adults age 50 and older
  • Other blood cell disorder: MF is sometimes a complication that arises from essential thrombocythemia or polycythemia vera
  • Chemical exposure: Industrial chemical such as toluene and benzene have been linked to MF
  • Radiation exposure: There is increased risk of MF for people exposed to high levels of radiation

What are the possible complications of myelofibrosis?

This chronic condition can cause several complications.

Pain

Abdominal and back pain is the result of an enlarged spleen.

Liver complications

The spleen and the liver connect through the portal vein. An enlarged spleen leads to higher blood flow and thus higher blood pressure on the portal vein. Increased pressure can sometimes lead to ruptures and internal bleeding.

Secondary tumors

Blood cells may develop outside the bone marrow and create tumors that can lead to gastrointestinal bleeding, seizures and pressure on the spinal cord.

Bleeding complications

Thrombocytopenia (low platelet count) will likely occur as the disease progresses, which means patients are at risk for easy bleeding. Surgical procedures will require special consideration.

Acute myelogenous leukemia

Some patients with MF develop acute myelogenous leukemia, a type of blood and bone marrow cancer.

How is myelofibrosis diagnosed?

The first step from your doctor will be a physical examination and a discussion about your medical history and current symptoms. The doctor will also physically feel for an enlarged spleen.

You can also expect blood work, including a complete blood count (CBC). Indicators such as red blood cell count, white blood cell count, and platelet count can suggest anemia and elevated levels of uric acid, bilirubin and lactic dehydrogenase may also indicate MF.

Other tests that you may experience include:

  • Bone marrow biopsy: A needle removes a bone marrow tissue sample and can confirm diagnosis
  • Imaging: Ultrasounds, MRIs, and X-rays can help doctors fully visualize the disease
  • Gene mutation testing: Pathologists will examine blood cells for specific genetic mutations, which can help guide treatment

…I noticed an unexpected lump in my abdominal region, which my doctor informed me was an enlarged spleen. This ultimately led to my diagnosis of myelofibrosis (MF)…

David D.

How is myelofibrosis treated?

Myelofibrosis treatment focuses on treating symptoms and managing the disease. Your doctor will determine if aggressive treatment or symptom management is required. If you are symptom-free, you may not have any treatment for the time being.

That all being said, there are several options that treat symptoms and help improve quality of life.

Anemia treatments

Severe anemia may require a blood transfusion or androgen hormone therapy to encourage red blood cell production. Thalidomide (Thalomid) and lenalidomide (Revlimid) may improve blood cell counts.

I was taking 25mg orally of Revlimid (chemo) every day, and I was getting 40mg of dexamethasone (steroid) on the first day and 4mg the second day. I did all that from February to June. I stopped when they were happy with the way the numbers were moving to have a kyphoplasty. We squeezed that in and moved right into the stem cell transplant in July.

I had a lot of hypotension, which was the opposite of what we thought was going to happen. I had some minor diarrhea.

Scott C., multiple myeloma
Scott

Enlarged spleen treatments

Targeted drug therapy and chemotherapy are possible pharmaceutical treatment options. A surgical option would be a splenectomy (removal of the spleen). Radiation therapy may also be able to reduce spleen size.

Bone marrow transplant

A bone marrow transplant, also called a stem cell transplant, replaces diseased bone marrow with healthy blood stem cells from a donor. Although this could potentially cure MF, it also comes with life-threatening side effects such as graft-vs-host disease.

Because many MF patients are older or have other health problems, many don’t qualify for stem cell transplant.

Shari

My mom, my brother and my sister-in-law, and my aunt were all there to support me. The nurses come in to infuse me. It basically looks like a blood transfusion. It’s a blood bag they hang on a hook and then connected it to my Hickman port underneath my shirt.

Overall, it took them maybe half an hour. It felt like nothing. I had no sensation whatsoever from this infusion. 

Shari B. (Mantle Cell Lymphoma, Stage 4, Non-Hodgkin’s Lymphoma)

How to cope with myelofibrosis

Life with MF may involve pain, discomfort, fatigue, and side effects of continuous treatment.

Advocate for yourself

Because MF is an uncommon disease, it’s important to advocate for yourself and educate yourself as much as possible. Ask your doctor for more resources.

Be Your Own Advocate

– Laura, MF Patient

Find support

Lean on your family and friends and start to build a support network. There are support groups (virtual and in person) you can join. Broad cancer support groups may be helpful, but there are also groups just for myeloproliferative disorders like myelofibrosis.

Find your own coping strategies

From bloodwork to scans, to bone marrow testing, to chemotherapy, living with MF can be exhausting. Find activities that make you feel good and allow you a chance to process or put your mind on something else. Yoga, therapy and even adopting a flexible work schedule may help.

Other Cancer General Info Articles

What is Leukemia? What is Lymphoma?

Leukemia is a cancer of the white blood cells. Lymphoma affects lymphocytes–a type of white blood cell. What are the similarities and differences of leukemia and lymphoma? How are they diagnosed? How are they treated?...

What is Myelofibrosis?

Myelofibrosis is an uncommon bone marrow cancer that affects blood cell production. Learn more about this disease...
Categories
Diagnosis FAQ

Is Frequent Diarrhea a Sign of Cancer?

Is frequent diarrhea a sign of cancer?

Cancer-related causes of diarrhea and how to cope

Diarrhea is an unfortunate and uncomfortable illness that can affect anyone. If you’re lucky enough to be unfamiliar with it, diarrhea involves frequent, loose, or watery bowel movements.

Diarrhea is sometimes a side effect of certain cancer treatments, and it can also be a sign of a more serious problem. Diarrhea can even be a sign of cancer. Learn more about this unpleasant symptom and what you can do about it.

Table Of Contents
  1. What is diarrhea?
  2. What causes diarrhea?
  3. Is diarrhea a sign of cancer?
  4. Grades of diarrhea
  5. What causes diarrhea during cancer treatment?
  6. When should I call a doctor?
  7. Treating diarrhea at home
  8. Taking care of your skin
  9. Can medications help diarrhea?
  10. Questions to ask your health care team
What is diarrhea?

Diarrhea is a condition involving loose, watery, or frequent bowel movements. Diarrhea can affect anyone from infants to older adults, and the causes can vary wildly. Mild diarrhea is generally not serious, but severe or prolonged diarrhea can lead to complications like dehydration, which happens when the body loses too much water.

What causes diarrhea?

For most people, diarrhea is caused by any number of benign or more serious issues, including:

  • Bacterial infections 
  • Celiac disease 
  • Food or water contamination 
  • Food allergies 
  • Inflammatory bowel disease (IBD) or irritable bowel syndrome (IBS)
  • Lactose intolerance 
  • Viral infections such as the rotavirus or COVID-19

Certain medications, including some chemotherapy agents, can cause diarrhea as well.

Is diarrhea a sign of cancer?

Diarrhea can be a sign of cancer in rare instances. For most people diarrhea can be treated at home or with the assistance of medication. However, frequent or persistent diarrhea can be a sign of:

  • Colorectal cancer 
  • Lymphoma 
  • Medullary carcinoma of the thyroid
  • Neuroendocrine tumors 
  • Pancreatic cancer 

If cancer is the cause of diarrhea, it’s likely that you would experience other symptoms as well. For example, someone with pancreatic cancer might also experience weight loss and jaundice.

Lani S. had a feeling something wasn’t right.

It was right around Thanksgiving. I was staying with my aunt. We went to a pub, and I had to go to the bathroom. It was really urgent. I vomited profusely and had diarrhea. I blacked out.

Lani S.
Read Lani’s story

Rachel B. said it was when she saw blood in her stool that it was time to see a doctor.

I was nauseous and bloated all the time. My stomach just felt really off. The straw that broke the camel’s back was finding blood in my stool. 

Grades of diarrhea

The doctors at the National Cancer Institute developed a grade system for determining how severe your diarrhea is. The grade system is relative to your baseline bowel movements.

Although watery stools are a hallmark of diarrhea, it can also be defined as an increased frequency of stools. Treatment is based on the grade severity.

  • Grade 1. Pass up to 4 stools a day above your baseline
  • Grade 2. Pass 4 to 6 stools a day above your baseline.
  • Grade 3. Pass 7+ stools a day above your baseline. This may require in-clinic treatment.
  • Grade 4. Grade 4 is life-threatening and requires immediate medical treatment.
What causes diarrhea during cancer treatment?

Diarrhea is a cancer treatment side effect that affects some patients. Some of the main causes of diarrhea during cancer treatment include:

Cancer patients are often more susceptible to infections, including ones that cause diarrhea.

Dr. Kenneth Biehl is a radiation oncologist who explains that radiation therapy to the rectal or bowel area can result in diarrhea, among other side effects.

In the rectum you can have some diarrhea, some urgency with your bowel movements. With the bladder you can have some urgency with your bladder, feeling like you have to get to the bathroom right away. Sometimes you can have some burning with urination.

Monica

Monica H. was going through Adriamycin and Cytoxan treatment for breast cancer.

I had a lot of nausea and a lot of diarrhea.

The Darzalex made me feel extremely wiped out for a day or two after, but other than that and some diarrhea, it was okay. I tolerated it pretty well.

Jude A.
Jude

If you’re taking chemotherapy in pill form and you experience diarrhea, please speak to your oncologist. They will be able to determine if you should continue your course of chemotherapy pills.

When should I call a doctor?

Mild cases of diarrhea often resolve on their own. Some cases require a little more assistance through dietary changes or over-the-counter medications. However, if you experience any of the following, you should speak to a healthcare professional:
 

  • Diarrhea that lasts more than two days 
  • Black or bloody stools
  • Fever above 100.5 degrees Fahrenheit 
  • Severe abdominal or rectal pain
  • Weight loss due to diarrhea
  • Dizziness
  • Inability to control bowel movements
     

If diarrhea persists and goes untreated, the body can quickly become dehydrated and lead to electrolyte imbalances. This could lead to the need for IV fluids. Prescription medication may be required in certain instances.

Treating diarrhea at home

Luckily, there are ways to treat mild diarrhea at home, starting with what you eat.

  • Stick to clear liquids. Switch to clear liquids, such as water, clear broth, and clear juices. Milk and other dairy products could aggravate. You may need to drink 8-12 cups of liquids a day.
  • Low-fiber foods. Lows low in fiber will be gentler on your bowels. Try rice, bananas, and applesauce.
  • Small meals. Eat 5-6 small meals a day and include plenty of fluids.
  • Avoid irritating foods. Dairy products, spicy foods, alochol, caffeine, and highly acidic food and drink can irritate the digestive tract.
  • Probiotics. Probiotics are beneficial bacteria that aid normal digestion. Bone marrow transplant patients should check with their doctor first.
Taking care of your skin

Frequent bowel movements feel uncomfortable and can irritate the sensitive skin in the anal area. Use warm water or wipe with baby wipes/bathroom wipes. Gently pat dry.

Petroleum jelly and similar ointments applied to the area can repel water and reduce skin irritation.

Can medications help diarrhea?

Dietary changes can help in mild cases, but you may require medication in more severe cases. If you are already undergoing cancer treatment, don’t take over-the-counter drugs without checking with your doctor first. There may be dangerous interactions with chemotherapy drugs.

Opioids and anti-secretory agents are often prescribed for cancer patients with more severe diarrhea, but your doctor will determine the best course of treatment.

Questions to ask your health care team

If you’re concerned about diarrhea, it’s important to ask the right questions. It can be an embarrassing subject, but your health care team can’t help you if you don’t communicate.

  • Will any of my cancer treatment medications cause diarrhea?
  • Does the cancer itself cause diarrhea?
  • What should I do if I experience a change in bowel movements?
  • Should I keep track of bowel movements during cancer treatment?

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Inspirational Quotes From Cancer Survivors

Inspiring & Hopeful
Cancer Quotes

Many cancer patients find comfort and inspiration through the words and experiences of others. According to the American Cancer Society, connecting with other patients and sharing experiences — positive or negative — can make a difference in your mental health during and after treatment.

Read below for quotes from cancer patients and survivors about treatment and not losing hope.

Table Of Contents
  1. Staying Positive
  2. Hair loss quotes from cancer survivors
  3. Scanxiety
  4. Life After Cancer
  5. Advocacy
  6. Inspired by these stories?

Staying Positive

Going through cancer treatment is emotionally and physically exhausting, but “staying positive” is a double-edged sword. Cancer is hard. Really hard. Staying positive can be easier said than done, but making connections through cancer patient stories can help you cope. Read quotes from cancer survivors about staying positive while living with cancer.

From noticing those early symptoms to getting an official diagnosis, cancer presents a lot of uncertainty. Jillian J., a synovial sarcoma survivor, understands how difficult the diagnosis can be, but she offers words of hope.

When you’re diagnosed, that’s the worst of it. The initial diagnosis is so traumatic. All the unknowns and everything being so new is so hard.

It will get better.

Jillian J., synovial sarcoma

Jamie K., a papillary thyroid cancer survivor, understands that staying positive means more than just putting on a happy face. Staying positive means being in touch with your feelings and being open and honest.

Just stay positive. Let people in that are going to be there for you because it helps to talk, it helps to cry, it helps to laugh, just take it all in and realize that whatever happens, you’re going to be okay.

Jamie K., papillary thyroid cancer

Cancer patients have two choices: focus of the negative or acknowledge the negative and focus on the positive. Cindy S. chose the second option.

I knew I could start to fret and think about the negative. I could start worrying and wondering about what I did to cause it. I had a choice. I could do that, or I could stay positive.

I’m an optimistic person, anyway. I knew if I started dwelling on the negative, that was going to make it worse.

Cindy S., Waldenstrom macroglobulinemia

Jason F. adopted a Zen approach and has focused on the things he can change as opposed to the things he can’t.

What’s in my control is taking care of myself and being healthy. I’ve found peace and solace in knowing I’m doing my part and I’ve found this in the fact that whatever will happen will happen.

Jason F., Hodgkin lymphoma, stage 2A

Scott C. offers some words of wisdom for cancer patients. He says it’s equally important to embrace sadness and anger — without letting it consume you. Cancer caregivers want to support you but may not realize that staying positive doesn’t mean burying your other feelings.

Scott

Positivity is my magnetic north. It’s not a simplistic approach. It’s a very nuanced response. There are people I call the “Positivity Taliban.” They want to tell you that you can never feel anything negative and have to squash reality. That’s not true. 

You need to feel what you need to feel…You won’t get anywhere by suppressing them. You should feel sad. You shake hands with sad. You give it a cup of tea and sit down with it, but you just don’t let it move in with you. 

Feel it and when you have the cathartic moment of watching the sun come up the next day, that’s your cue. You have to get up and get going because you have things to do. 

Scott C., multiple myeloma
Don’t be afraid to ask for help

It’s okay to ask your loved ones for help and it’s okay to tell them what you need. It’s okay to join a support group. Research shows that cancer support groups and having a caregiver can improve your quality of life during and after treatment.

Let people help. People want to help you. This one woman I know said, “I just want you to know I’m thinking about you.” People will do what they can for you.

Susan R. ovarian cancer

Evan L., an ALL survivor, reminds us of the importance of using your support system.

You will get through it. If you have friends and family around you, definitely lean on them. They will be there for you no matter what the case may be.

Just keep your head up. Stay positive. I think it’s very important that you know you will get through it. It’s just time, it’s just patience, and protocol.

There are many great doctors and nurses out there that are on your side and they’re going to get you through it. It does get better.

Evan L., acute lymphoblastic lymphoma

Hair loss quotes from cancer survivors

A famous Joni Mitchell song reminds us that “you don’t know what you’ve got til it’s gone.” It wasn’t about hair loss, but the sentiment rings true for cancer patients.

Due to the follicle-killing power of certain chemotherapy drugs, approximately 65% of cancer patients will experience some form of hair loss and 47% of women cancer patients say that hair loss is one of the most challenging side effects of treatment. Genoa M. explains the complex emotions that accompany hair loss and making the decision to cut her hair.

I did not understand my relationship with my hair until I was diagnosed. I think the times I broke down and cried over my diagnosis were triggered because I knew my hair was going.

I needed to kind of get control back a little bit.

Genoa M., breast cancer

Callie M. knew it was coming. It was difficult, but she tried to make the most of it and have fun with her hairdresser.

I was trying to keep this brave face, but then the next morning I went to wash my hair, and it was coming out in clumps. I knew this was coming.

I had prepared. I had cut it short. Still, I bawled like a baby. You know it’s coming, you think you’re prepared, but it doesn’t sink in until it happens. 

I called my hairdresser, and she shaved it for me. She did a mohawk first. It was awesome to have fun with it, but the hair loss was probably the most emotional thing for me.

Callie M., breast cancer
A close up photo of Callie smiling
Learn how hair loss can be empowering

Amelia L. decided that hair loss was a time to take back power, regain control, and get ready for ‘battle’.

Amelia

When I lost my hair, I had a new confidence. I don’t know what it was, but maybe it was the ‘battle’ mentality. I was really confident with my short, buzzed haircut. That stuck with me for a long time. I don’t get nervous anymore. It’s almost like the opposite of the story of Samson. When they cut his hair, he lost his power, right? When I cut my hair, I felt like I gained so much power.

Amelia L., Breast cancer

Veronica experienced a similar transformation.

I used to cry when I asked for a trim and got more off than I expected. This time around, it wasn’t as big of a deal.

It was more liberating than anything.

It was more depressing for me to wake up with hair on my pillow than for me to just go ahead and get rid of it. 

Veronica B., acute lymphoblastic leukemia
Hair loss is temporary

For most patients, hair loss caused by chemotherapy is only temporary. Charlie B. offers some words of hope about hair loss.

Have faith that it will return. There were several times that I was unsure because of male pattern baldness in my family. I was scared that it wouldn’t come back as good as it once was. 

Do what you have to do to get through the now. Worry about that stuff later because it will likely come back. Hair loss is almost always a temporary thing. In the meantime, you can have fun with lots of different wigs. 

Charlie B., Hodgkin lymphoma

Choosing to see the positive can make a difference in how you look and feel about hair loss. Keyla S. made the best of a tough situation.

The hair loss on my face was more difficult because I have always had very thick eyelashes and eyebrows so I didn’t enjoy that by any means, but they start to grow back between each cycle so I know they’ll come back quickly. It’s definitely nice not having to shave my legs though!

Keyla S., non-Hogkin lymphoma

Cancer survivors on hats and wigs

Hats and wigs have the power to transform. Michele G. remembers having fun and wanting to feel beautiful.

[Losing hair] does take an emotional and mental impact, because you do want to feel beautiful. But having that support system is just so key in helping with that. I also did look into wigs and had fun with it…new day, new hair.

But also when people came to visit me, I’d just go bald or wear a hat. I’m very into hats and I have a collection now. 

Michele G., acute myeloid leukemia

Scanxiety

Many cancer patients experience a feeling known as ‘scanxiety‘, referring to the anxious feelings leading up to scans during and after treatment. Anxiety involves a surge of adrenaline that can create the ‘fight or flight’ response.

I have been in remission for two years, and the weeks leading up to a scan paralyze me. I become so scared because I do not want to fight this disease a third time. I fear losing my job, my hair, my school. I fear losing the sense of control.

Fabiola L., Hodgkin lymphoma

Even though scan anxiety is very real, William reminds us that having a positive outlook can help you go into your scan feeling a little more relaxed.

If you just say out loud the best and worst case scenarios, it helps you ground yourself and realize where you are. It’s something that every cancer patient faces.

Whenever you’re going back in to get a scan or check your status, it’s anxiety-ridden. The best way to cope is to keep a strong head and have a good mindset and believe that things will turn out the way they’re supposed to.

William Y., acute lymphoblastic leukemia

Shari turns an anxious moment into a positive. She advocates for doing something fun leading up to the scan. She and her spouse take a mini-vacation, which gives them something to look forward to, instead of dread.

We tend to plan our vacations around the time of the scans. Sometimes, we’ll go right before a scan. I might be on a two-week cruise and two days later, I’ll have a scan. Other times, we’ll schedule a trip for right after a scan. 

We do that because we figure if I get a really bad scan result, and I have to change my treatment, it’d be really nice to have a break from life beforehand. We have gone on a two-week trip every year since my diagnosis and a bunch of little ones in between. I would rather look forward to the next trip than dread the next scan. That’s helped both of us. It’s always in the back of your mind, but that helps.

Shari S., breast cancer
Shari

Heidi and Crystal look forward instead of looking back and make the most of every minute.

I do not assume that I am “cured.”  I do not know if that will ever be the case.  I live my best life from scan to scan, which has been a challenge during the pandemic. 

As scan day approaches, I do feel scanxiety, which is just a euphemism for anticipatory terror.

Heidi N., lung cancer

I don’t see my life as a regular timeline now. I see it as before, during, and after cancer. For me, I have a different outlook. I try not to take anything for granted because I know life can change in an instant.

Crystal Z., non-Hodgkin lymphoma

Life After Cancer

Survivorship is filled with joy and positivity, but also anxiety and guilt. Read survivors’ stories about life after cancer. Rach D., a breast cancer survivor, says that even if the cancer is gone, the effects linger, emotionally and physically.

Rach smiling

I thought in my mind, “Oh, you go through chemo and then you’re done.” No, because then you still have all these other treatments that can change you day to day. There’s a whole new world you go into now.

People assume you are done with everything, you’re cured. There’s no such thing as the word ‘cured,’ which is why there’s people advocating for more cancer research.

Rach D., breast cancer

Clay expresses gratitude for every day. He says that he came out of the cancer experience a stronger, renewed man.

Where I am today, oddly, is grateful. I’m thankful for all these things I’ve been through. They’ve made me a different and better person. Not totally different, but I’m a different version of myself. 

I got to decide who I wanted to be post-treatment. This person is a little bit different than I was before. 

Clay D., multiple myeloma
Clay

Advocacy

Advocating for yourself, for others, and sharing your story changes lives. Many patients find comfort and solace through shared experiences. Hugo found healing power through sharing his story.

It took me a while to realize how powerful it can be to share your story. I urge anyone out there, if you’re going through this yourself, I’ve found that it is really mentally healing to share. The people you can connect with make you realize you’re not alone.

Hugo T., Colon cancer

Through that shared experience, cancer patients and survivors can find understanding and empathy that even the most compassionate caretakers are unable to offer.

But when you connect with someone that also has just cancer in general, whether it be breast or any of it, we understand each other in a way that others can’t understand us and we understand a different outlook on life, that others can’t understand.

Ashley R., lung cancer

Becoming an advocate for yourself or for others can change lives. Cancer patients are sometimes afraid to speak up or don’t ask questions about treatment options. Survivors say — speak up!

You are your own person—the only person that will go through this physically, and you have every right to share and provide yourself with every ounce of control. Your voice is your power.

Nina L., non-Hodgkin lymphoma

Put your needs first. Take care of yourself. Be kind to yourself, says Maurissa, an ovarian cancer survivor.

I just want to say God bless you, and I’m really sorry that you’re dealing with this. It is a shocker you know, but I think in life things are never as bad as we imagine them to be.

Given a diagnosis is a gut punch for sure. You have to believe that you’re strong enough, that you’re able to get through it.

Advocate for yourself, this is the time. Particularly women, this is the time to be selfish and to think about yourself and to put your needs first.

Maurissa M., ovarian cancer
It’s okay to talk about it

Cancer sometimes feels like a taboo topic. The word scares many. The NIH even conducted a study on how the term can scare people into inaction. Talking about it can empower others in your community to get screenings and seek treatment when something doesn’t seem right.

I think self-advocacy is important, especially among men of color, because it’s something you just don’t talk about.

Clarence S., Prostate cancer

Many patients we have talked to say that being your own advocate is the best way to get the treatment and care you need and deserve. Although most patients have a support system, Greg S. reminds us that the power is in the patient’s hands.

Be prepared, write down your questions, be your own advocate because nobody else is going to do it for you.

Greg S., thyroid cancer

Steve’s message to men (and women) is that it’s okay to feel pain, and it’s okay to talk about your feelings. Downplaying the patient experience can be a destructive element.

It’s destructive to men to make them feel like they’re a wuss if they talk about their pain. I do not agree or subscribe to that at all. I live and speak very openly and encourage others to do the same.

Being an advocate is one of the ways I have made lemonade out of the lemons life has given me.

Steve R., prostate cancer

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