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Narrator

Many people with cancer, including those with non-Hodgkin lymphoma, have found that taking part in an educational support group can be helpful.  Support groups take many forms: some are designed to meet the needs of people with all kinds of cancers; others focus on one type of cancer.  Some groups aim to provide information while other groups offer emotional support to its members.  Some groups are led by nurses or social workers, and other groups are led by peers – people just like you who have lymphoma.  This educational support group for people with lymphoma, their family members, and other people in their lives, has been running for many years.  Some of its members have been living with their disease for quite a while, and then there are new members – people who have only recently found out that they have lymphoma.  Let's listen to the group's discussion during this meeting.

Carlotta (Social Worker)

Hello everyone.  I am Carlotta, and I'm an oncology social worker at the Cancer Center.  I've been helping for several years with this support group.  It's for people with questions and concerns around the illness known as non-Hodgkin lymphoma.  Tonight, our focus is on how the diagnosis of lymphoma is confirmed and how it is treated.  Dr. Griffin, a medical oncologist at our cancer center, is here to help us understand these issues.

Dr. Griffin

Diagnosing lymphoma is not always simple and straightforward.  The symptoms that usually bring people to the doctor in the first place are a painless and swollen lymph gland, often in the neck area or under the arms; weight loss, fever, extreme sweating at night or tiredness that won't go away.  Sometimes, a person has no symptoms and the lymphoma is discovered by accident – during a routine check-up.  If the lymphoma is in a place other than a lymph node, such as the gastrointestinal tract, skin, or lung, a person may have abdominal pain, skin lumps, or trouble breathing or chest pain. 

Carlos

Is lymphoma contagious?  Somebody told me lymphoma can be caused by a virus. 

Dr. Griffin

I'm glad you asked that question.  Some forms of non-Hodgkin lymphoma are linked to certain viruses and bacteria such as the Epstein-Barr virus and the H. pylori bacteria.  However, these viruses and bacteria are not contagious, so you cannot get lymphoma from another person.

Renee

Why does it take so long to find out if it's cancer?  I first noticed a lump by my collarbone when I was showering.  Other than a bad cold a couple of weeks before, I had been feeling great.  When I called the doctor, he told me if the lump was still there in two weeks or if it got bigger, I was to see him.  After two weeks, the lump was still there. When the doctor examined me, he gave me antibiotics to take.  He said it was likely an infection.  I took the antibiotics, but it didn't go away.  He said the next step was to do a biopsy.  That was when the lymphoma was found.  I often wonder why I had to wait so long.  Treatment could have been started sooner. 

Dr. Griffin

It's normal to wonder why it took so long, or even to feel angry about the delay.  Because the symptoms, like the lump you noticed, are most often not due to cancer, but are caused by infections or other health problems, the doctor will treat for an infection first.  If the doctor suspects the lump or swollen lymph node is lymphoma, a biopsy is needed to diagnose the lymphoma and determine the exact type.  There are more than  67 types of non-Hodgkin lymphoma.  Oncologists group them by how quickly or slowly the lymphoma grows.  Aggressive lymphomas grow quickly.  The most common type of aggressive lymphoma is diffuse large B-cell lymphoma.  Indolent lymphomas grow slowly.  The most common type of indolent lymphoma is follicular lymphoma.  In addition to the biopsy, other tests are needed to find out the stage or extent of the lymphoma.  CT scans of the neck, chest, abdomen, and pelvis are done to see if any of the lymph nodes in those areas are enlarged.  The scans will also show if the lungs, liver, or other organs are affected.  Another test is the PET scan.  PET stands for positron emission tomography.  A PET scan involves an injection of a radioactive tracer into the bloodstream.  Cancer cells pick up more of the tracer than normal cells.  Even if lymph nodes are not enlarged, the PET scan camera can still identify small areas of lymphoma.  A bone marrow biopsy – marrow cells are removed, usually taken from the hipbone – is often done to see if lymphoma is present.  Blood tests include counts of red cells, white cells and platelets, lactate dehydrogenase or LDH, beta 2-microglobulin and chemistry studies to check for kidney or liver damage.  The results of these tests are used to help figure out the stage of the lymphoma.  These tests are repeated from time to time to assess and monitor your disease.  You can find more information about the stages of non-Hodgkin lymphoma in the resource booklet that is included in this module of the Cancer Survival Toolbox®, on the Lymphoma Research Foundation website (http://lymphoma.org/), and by calling their Helpline 1-800-500-9976.

Ari

I was just diagnosed with lymphoma, so my doctor and I are now in the process of deciding what treatment I'll have.  My doctor told me there are several factors he uses to decide which treatment is best for me.  He said my heart problems would be important in his decisions about my treatment.  He also said because I have a slow-growing lymphoma and I don't have any symptoms, we might just watch and wait.  I'm not sure I like the idea of not doing anything. 

Dr. Griffin

Let's talk about making treatment decisions.  Besides the specific type and stage of lymphoma, other factors that are important to consider include your age, your general health, your life-style and your personal quality-of-life wishes, symptoms from the lymphoma and co-morbidities – those conditions or chronic illnesses that may limit what we use in treatment.  In general, patients are treated with a combination of chemotherapy and biotherapy medicines called "monoclonal antibodies."  Sometimes, radiation therapy is used alone to treat a distinct and isolated disease site, and other times, radiation is used along with chemotherapy or biotherapy.  A fairly new and promising form of treatment is "radioimmunotherapy" – in which radio-active materials are combined with  monoclonal antibodies.  Depending on the type of lymphoma, some patients are treated with stem cell transplants – in which stem cells are removed from the patient's blood — or sometimes from a donor's blood — treated, and given back to the patient.  For others, like you Ari, a watch and wait approach may be a choice. Watch and wait is sometimes used on slow growing cancers that will require treatment in the future.  Treatments are not usually given prior to cancer growth, but are saved for when more needed.  This approach involves careful and regular monitoring.  If you start having symptoms or if the CT scans should show changes in the lymph nodes, your doctor may then recommend treatment.  There are many treatments available now, and we try to use medicines that work together to achieve the best results and these are tailored for each and every patient. 

Carlos

I can attest to that!  With diffuse large B cell lymphoma, an aggressive type, my doctor told me I would need chemotherapy.  He also suggested I have a special IV line — a catheter called a central line - inserted into a large vein in my chest.  The catheter is used to give the chemotherapy and other medicines, fluids and blood, and to take blood samples.  There are different types of catheters and vascular access devices, so ask your doctor or nurse to explain the different devices and how the choice for the best device for you is made.  A vascular access nurse helped the surgeon choose the best access site for my catheter and helped me learn to take proper care of it.

My doctor ordered a combination of drugs called R-CHOP; it took me a while to be able to say all the drug names — rituximab, cyclophosphamide, doxorubicin, vincristine, and prednisone.  Rituximab is a monoclonal antibody, a type of biotherapy that targets B-cell lymphomas.  It worked.  My lymphoma was in remission for three years, but then my CT scans showed it was back.  So, the doctor suggested a different combination of chemotherapy drugs, then a stem cell transplant.  That was two years ago – so far so good.  I know it can come back, but my doctor says there are still more treatment options.  That's reassuring.  It's like – when one treatment plan stops working, we change to another. 

Renee

My story is a little different.  I was diagnosed with a lymphoma in my stomach, called a mucosa-associated lymphoid tissue lymphoma or MALT lymphoma.  It is caused by an infection from the H. pylori bacteria that can also cause ulcers.  The doctor ordered antibiotics to get rid of the infection and the lymphoma.  It's hard to believe my only treatment was antibiotics.  However, I'll still have to be watched regularly.

Dr. Griffin

Your stories are good examples of some of the different types of non-Hodgkin lymphoma and the differences in treatment.  The decisions that are made about treatment have to do with the exact kind of lymphoma we are dealing with, as well as other factors such as stage of the disease.  Researchers are continuing to look for better treatments, including new drugs and vaccines.  There are many clinical trials in progress now, a good sign that we will continue to see new forms of treatment for lymphoma.  We are very hopeful. 

Sam

When I was diagnosed five years ago, my doctor suggested I enroll in a clinical trial.

Ari – interrupting

Excuse me . . . What's a clinical trial?  My doctor talked with me about enrolling in a clinical trial, but I'm not sure I understand what it is.  It makes me a little nervous.

Carlotta (social worker)

Ari, I'm glad you asked that question.  Sam, would you describe your experience for us, and maybe Dr. Griffin can add some information, too.

Sam

On the clinical trial, I took a new drug and it worked great!  The study was what they call a "blinded study" – meaning that neither my doctor nor I knew for sure which drug I was actually getting – but it had to be at least standard therapy OR something known to be at least as good as the current standard therapy.  I only found out after the study ended that I was on the experimental drug and what it was.  My doctor recently told me the drug I was taking has since been approved by the Food and Drug Administration or FDA, – which means the clinical trials to study its effects are finished and it was shown to be effective.  It has helped – my doctor says my lymphoma is in remission now.   

Narrator

There is a lot of good information about lymphoma clinical trials on web sites offered by the National Cancer Institute (http://www.cancer.gov 1-800-422-6237), the Lymphoma Research Foundation (www.lymphoma.org), and the Leukemia and Lymphoma Society (www.lls.org/clinicaltrials 1-800-955-4572).  Each has a Clinical Trial Information Service that will help you search for clinical trials for your type of lymphoma  Additionally, the Cancer Survival Toolbox® program, "First Steps" provides information about finding clinical trials. 

Carlotta (Social Worker)

Ari, you are still trying to understand your illness and make decisions about your treatment.  Do you have questions or concerns that we can talk about tonight?

Ari

Well, yes, actually.  I feel sort of funny about this.  But, sometimes, I don't think my doctor is being straight with me.  Maybe I'm not communicating with him very well – but sometimes I think that I'm not getting enough information from him.  My daughter thinks I ought to get a second opinion, but I don't want my doctor to be offended either.  I don't know what to do.

Carlotta (Social Worker)

It is important that you are able to talk to your doctor – whoever it is – openly and honestly.  We can help you improve your communications skills – and again, one of the Toolbox programs focuses on communication.  This could help you be more assertive about meeting your own needs for information, and your relationship with the doctor could work much better for you.  As for a second opinion, it's almost always a good idea – even if the second opinion turns out to be exactly the same as the first.  And, the Toolbox's "First Steps" program suggests ways to go about setting up second opinions.  At least you may feel more comfortable with the treatment recommendations.  Or, it may turn out that you could have a better relationship with another doctor, and that is very important, too.  You and your doctor will have an ongoing relationship – and it's in your best interest that the two of you work well together.

Renee

I have one more suggestion for you, Ari.  Well, really, it's something we can all use, I think.  A couple of weeks ago, I took part in a Lymphoma Education Series teleconference provided by the Leukemia and Lymphoma Society (http://www/lls.org/nationaled).  They have these and also webcasts, and on the computer, you can get printed transcripts and audio recordings for an MP3 player.  People from all over the country were on the line just like I was, and we could ask questions to a panel of lymphoma experts.  I learned a lot about what's going on in lymphoma research, the newest anti-lymphoma drug that was approved by the FDA, and some information that helps me be as healthy as I can be.

Carlotta (Social Worker)

What a great resource!  Thank you, Renee.  And, thanks to everyone for your helpful comments.  Please know that there are people all around to help you through this – the people in this support group continually reach out to help each other.  It’s sort of like the “veteran” helping the “rookie.”  The oncology social workers and oncology nurses and doctors, too, are here to help you, along with other members of cancer care team.  You only have to let someone know you need help.  As Renee says, we all want to help you to be as healthy as you can be.

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