Your first appointment at Fred Hutchinson Cancer Center is a time for you and your hematologist-oncologist to meet. You might meet your advanced practice provider, too. You will talk about your diagnosis, subtype, disease stage and likely treatment. This visit is also a time for us to start getting to know you as a person. This helps us fit our recommendations to you. Together, you and your care team will decide what needs to happen next.
We encourage you to bring a family member or friend to your first appointment (and any future visits).
What to expect
First appointments usually last one to two hours. You will spend about one hour with your physician. The rest of your visit may involve checking in, being escorted to an exam room and getting settled in there, meeting other members of your team and setting up your next appointments. Here is what you can expect to happen.
To confirm your NHL diagnosis, an experienced Fred Hutch hematopathologist looks carefully at your pathology slides and finds your NHL subtype.
Knowing your subtype is important, because it helps your physician decide which treatments will likely work best for you and when your treatment should start. For example, some subtypes respond well to certain medicines but not others. Some subtypes are best treated early on; for others, treatment is still important, but it’s less urgent.
Our hematopathologists may run more tests on your tissue sample to confirm your diagnosis or to narrow down your subtype. At your first appointment, your physician will have your results and go over them with you.
Many patients who were diagnosed with NHL before coming to Fred Hutch have not had tests to stage their disease (check how far the disease has spread in their body). If you have had these tests and you already know the stage of your cancer, we will look at the test results before your appointment. If you have not had these tests, we will talk with you about which tests you need, why, how to get them and when you can expect results.
The treatment we recommend for you depends in large part on your NHL subtype and stage. If you have had a biopsy and we know your subtype, your physician will explain generally which treatments you are likely to need. After we have the results of your staging tests, we will meet with you again to talk about your personalized treatment in more detail.
These appointments are also a time for you to tell us about yourself. Each patient and family has their own needs and preferences. We want to get to know you so we understand the best way to care for you.
Starting with your first appointment (and after), we are here to answer your questions. We want to help you understand as much as you want to know about your disease, your treatment and how care happens at Fred Hutch. We invite you to bring a friend or family member with you to help keep track of your questions and the information that your team gives you. We also encourage you to talk with your care team about your hopes and concerns. Knowing more about you helps your team recommend the right treatment for you.
Before you leave, we will make sure you know what is going to happen next and how you can reach us if you have questions later. We will also schedule your next visit.
Staging means finding out how far NHL has spread in your lymph system or other parts of your body. Accurate staging helps your physician predict which treatments are most likely to control your disease or put it into remission.
Physicians use Roman numerals I (one), II (two), III (three) and IV (four) to name the stages of NHL. Stage I is the least advanced, and stage IV is the most advanced. All stages can be treated.
- Stage I: Cancer is only in one group of lymph nodes or is only in one place outside your lymphatic system.
- Stage II: Cancer is in two or more groups of lymph nodes, both above or both below your diaphragm. Cancer can also be in one organ and in lymph nodes in the same area (it can also be in other lymph nodes on the same side of your diaphragm).
- Stage III: Cancer is in lymph nodes on both sides of your diaphragm.
- Stage IV: Cancer has spread beyond your lymph nodes to other parts of your body, like your bone marrow, lungs or liver.
Your physician may add a letter to your stage to reflect details about your disease:
- E (as in “Stage IIE [two E]”): Cancer is outside your lymphatic system (it is extralymphatic).
- S (as in “Stage IIS [two S]”): Cancer is in your spleen.
- X (as in “Stage IIX [two X]”): You have a larger tumor (usually at least 10 centimeters across or at least one-third of the width of your chest). Physicians also call this “bulky disease.”
To diagnose the stage of your NHL, you need imaging tests and blood tests.
Imaging tests show which lymph nodes are bigger than normal, if other organs are affected and if you have any large tumors.
Blood tests check for lymphoma cells in your blood. They also check for other substances (like proteins) that can tell physicians how severe your disease is, if your organs are working well and how urgently you need treatment.
You will probably also have tests to check whether lymphoma is in your bone marrow.
Imaging tests to stage NHL
Imaging tests to stage NHL include:
- Chest X-ray
- CT (computed tomography) scan
- FDG-PET (fluorodeoxyglucose positron emission tomography) or PET (positron emission tomography) scan
- MRI (magnetic resonance imaging)
Blood tests to stage NHL
Blood tests to assess NHL may include:
- Complete blood count (CBC)
- Comprehensive metabolic panel
- Lactate dehydrogenase (LDH)
- Hepatitis testing
- Uric acid testing
- Antibody testing
Bone marrow aspiration and biopsy
After numbing the area so there is no pain, a physician uses a hollow needle to take a sample of marrow (bone marrow aspiration) and a small piece of bone (bone marrow biopsy). A pathologist checks these samples for signs of cancer.
Other tests you might need
Your physician recommends other tests based on your NHL subtype and your signs and symptoms. For example, if you have a type of lymphoma that affects the digestive tract, you may need an endoscopy to check your esophagus, stomach or small intestine. You may need a colonoscopy to check your large intestine. If it seems like lymphoma is affecting your brain or spinal cord, you may need a lumbar puncture.
A procedure in which a small sample of bone marrow is removed, usually from the hip bone, breastbone or thigh bone. A small area of skin and the surface of the bone underneath are numbed with an anesthetic. Then, a special wide needle is pushed into the bone. A sample of liquid bone marrow is removed with a syringe attached to the needle. The bone marrow is sent to a laboratory to be looked at under a microscope. This procedure may be done at the same time as a bone marrow biopsy.
Resources for patients and caregivers
Here are tips about how to prepare for your first appointment at Fred Hutch and what to bring.
Just like every patient’s situation is different, every caregiver may be asked to help with different tasks.
Learn how you can offer support during a first visit.
As a caregiver, you can give your loved one both emotional and practical support for their first appointment. Ask them if you can help with things like these:
- Helping them manage their stress, worry or other feelings.
- Planning how to get to and from the appointment, what time to leave home and where to park.
- Making a list of questions they want to ask the physician. Fred Hutch’s Guide to Your Care (PDF) has a list of questions they may want to ask the care team. At the appointment, make sure that all their questions get answered.
- Taking notes during the visit. The physician will be giving a lot of details, which can be hard to remember later without notes.
“We’re lucky to have Seattle Cancer Care Alliance (SCCA) in our backyard,” said Scott Lundberg, a survivor of non-Hodgkin lymphoma (NHL). Scott is a plaintiff’s personal injury lawyer who talks to many doctors in the course of his work. He is also a long-distance athlete whose strength and endurance proved invaluable during cancer treatment.
The day after Bellevue firefighter Eric Rickert completed the challenging Scott Firefighter Stairclimb in 2015, he began feeling unusual abdominal pain. He hoped it was just a stomach flu, but the sharp, cramping aches lasted for days. After weeks of seemingly endless tests and doctor appointments, Eric received life-changing news: He had stage 4 mantle cell lymphoma (MCL).