Diagnosis and treatment
PTLD is related to your transplant and immunosuppressants. Your transplant team needs to be aware so they can diagnose and treat it quickly.
How is PTLD diagnosed?
Your transplant team will review your medical and transplant history. They may also ask you to meet with other healthcare providers. You may have to go in for:
Biopsies
Common types of tissue samples taken:
- blood
- bone marrow
- cerebral spinal fluid (if the doctor suspects the central nervous system is involved)
Medical imaging
Common types of imaging:
- CT scan
- PET scan
- MRI
Afterwards, your transplant team will run tests on the tissue samples and analyze the results. Two important tests are immunophenotyping and looking at levels of EBV.
What you can do
Ask your transplant team if you have questions about PTLD. You can do this even if you haven't seen them in a while. They are the experts on your transplant history and the immunosuppressants you are taking.
If you can't see your transplant team right away, see your primary care provider, or if under 18, a pediatrician. They may be able to reach the transplant team for you.
Questions you can ask your transplant team
- What are the tests that I need to have done?
- What can I do to prepare for these tests?
- How long do these tests take and when will the results come back?
- Will insurance cover the procedures, imaging, and tests required for diagnosis? What can I do if they are not covered?
What are the types of PTLD?
PTLDs range from mild, benign growths to aggressive cancers.
When your transplant team is analyzing the results of diagnostic tests, they are trying to understand:
- the type of lymphocyte that is affected
- if EBV is involved
- the type of growth or lymphoma it is
These three factors, and whether the PTLD is new or has come back, will affect the treatment plan.
Lymphocyte type
PTLD affects your lymphocytes. In most cases, your B cells are affected, but PTLD can also affect T cells and natural killer (NK) cells.
EBV involvement
EBV can be linked to the development of PTLD. If there is a link to EBV, it's called EBV‑positive PTLD. If there is no link, it's called EBV‑negative PTLD.
Type of growth or lymphoma
The World Health Organization (WHO) has four categories for growths and lymphomas that are considered PTLDs. You may hear your doctor use these categories or the name of the growth or lymphoma.
Questions you can ask your transplant team
- What type of PTLD do I have?
- What are the characteristics?
- What treatment options are available to me?
- What is my prognosis?
What types of treatments are there?
There are many types of treatment. The treatment options available to you will depend on factors like:
- your general health and medical history
- the type of PTLD you have
- what treatments you've had
- whether your PTLD is new or has come back
Since PTLD involves the immune system, many of the treatment options are immunotherapies. Immunotherapies work by helping the immune system to fight a disease.
Adjusting your immunosuppressants
Your immunosuppressants may be carefully adjusted by your transplant team. This is done to help your immune system control PTLD while keeping your transplant healthy.
Antibody therapy
Antibody therapy helps the immune system recognize and fight specific cells. In PTLD, it may be used to target B cells.
CAR T-cell therapy
CAR T-cell therapy is made from the patient's T cells. The patient's T cells are genetically modified in the lab to attack specific types of cancer cells.
Chemotherapy
Chemotherapy kills cells that grow and multiply quickly, including cancer cells. When it is used with antibody therapy, it's called chemo-immunotherapy.
Clinical trials
Clinical trials are research studies. In a clinical trial, patients may receive an existing treatment or a new treatment that is being studied.
EBV-directed therapy
EBV-directed therapy targets and kills cells that are infected by EBV. It is used to treat diseases linked to EBV, including EBV‑positive PTLD.
Surgery and radiotherapy
Surgery and radiotherapy are not usually used to treat PTLD. They may be used to control or reduce symptoms.
There may be other treatment options not listed here.
What you can do
You can work with your transplant team to create a treatment plan. You can write down questions that come to mind over time and have a caregiver help take notes. There are no stupid questions.
Questions you can ask your transplant team
- What treatment options do I have and how will we choose?
- How are these treatments administered or given?
- How well did these treatments work for other patients?
- Are there other patients I can talk to about their treatment experience?
- How soon can I get treatment? Are there wait times?
- Will my insurance cover the cost of treatment?
- What will treatment be like? (e.g., will I need to travel or take time off work?)
- What will monitoring look like after treatment?
Who might be involved in my PTLD care?
Your transplant team will need to be involved. This is because PTLD is related to your transplant and immunosuppressants. You may also see other specialists, depending on your transplant type, age, and other health conditions.
Questions you can ask your transplant team
- Who might be involved in my PTLD diagnosis and treatment?
- How often will I see the different people involved?
- Who will be my main point of contact?