Your first appointment at Seattle Cancer Care Alliance (SCCA) 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.
Before coming to SCCA, you likely have already had a biopsy that shows you have Hodgkin lymphoma and know the subtype of your disease. 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.
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.
Most newly diagnosed patients have not yet had tests to stage their disease. Staging means finding out how far lymphoma has spread in your lymph system or to other parts of your body. Hodgkin lymphomas range from stage I to stage IV, with I being the least advanced and IV being the most advanced.
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 tests usually happen within 10 to 14 days.
The treatment we recommend for you depends on several things, including the subtype and stage of your Hodgkin lymphoma. 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 SCCA. 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 Hodgkin lymphoma
Staging means finding out how far Hodgkin lymphoma has spread in your lymph system or other parts of your body. This helps your physicians 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 Hodgkin lymphoma. Stage I is the least advanced, and stage IV is the most advanced. All stages can be treated, and even advanced Hodgkin lymphoma can often be put into remission.
- Stage I: Cancer is only in one group of lymph nodes or is only in one place outside your lymph 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.
Physicians may also add a letter after your stage to describe more about your disease.
- A (as in “stage IA”) means you do not have symptoms.
- B (as in “stage IB”) means you have B symptoms: fever, weight loss or night sweats.
- E (as in “stage IIIE”) means your cancer is outside your lymph system (extranodal).
- S (as in “stage IIIS”) means the cancer is in your spleen.
To understand your lymphoma and recommend the best treatment for you, your physician will think about many things, such as whether you have:
- A tumor in your chest bigger than a certain size
- Cancer in an organ other than your lymph nodes
- Three or more lymph nodes with cancer
- A high sedimentation rate (your red blood cells settle quickly to the bottom of a test tube in a sample of your blood)
- Certain levels of blood albumin, hemoglobin, white blood cells and lymphocytes
If your lymphoma comes back after treatment, it is called recurrent or relapsed. Your physician will ask for imaging tests or other tests to restage it. After restaging, your physician will work with you to make a new personalized treatment plan for your situation.
To diagnose the stage of your Hodgkin lymphoma, you need imaging 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 serious your disease is, if your organs are working well and how urgently you need treatment.
You will probably also have tests to check if lymphoma is in your bone marrow.
Imaging tests to stage Hodgkin lymphoma
Imaging tests to stage Hodgkin lymphoma may include one or more of the following :
- Chest X-ray
- CT (computed tomography) scan
- PET (positron emission tomography) scan
- MRI (magnetic resonance imaging)
Blood tests to stage Hodgkin lymphoma
Blood tests to stage Hodgkin lymphoma may include:
- Complete blood count (CBC)
- Comprehensive metabolic panel
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
If you have lymphoma, you may need more tests to identify the type. These can include:
- An immunohistochemistry study
- Immunophenotyping, or flow cytometry
- Cytogenetic analysis
Resources for patients and caregivers
Here are tips about how to prepare for your first appointment at SCCA 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.
Caregiving at the first appointment
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. (SCCA’s Guide to Your Care 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.