One of the foremost questions to ask yourself is who are you seeing? You will hear a lot advice saying you should see a lymphoma specialist, or an oncology specialist. But that is a bit misleading. Lymphoma by itself is not a specialty. Furthermore oncology is not a specialty that deals with blood cancers as their primary concern.
Haematology is the specialty that deals with blood diseases. The doctors who specialize in this are Haematologists. Lymphoma is a disease of the lymphatic system which is a part of the blood system because it is comprised primarily of white blood cells. In fact since cancer of the white blood cells is the single largest blood disease the vast majority of haematologists are already specialists in lymphoma, leukaemia and myeloma. They also specialize in thrombosis (blood clotting problems), sickle cell anaemia, and other blood diseases. However compared to Lymphoma and Leukaemia those others make up a smaller part of the Haematologists work. On the whole, haematologists are the ones who specialize in leukaemia and lymphoma so that is who you should be seeing.
These questions are suggestions. Don’t feel you have to ask all of them. Some questions may not apply to you or your situation. They are meant as a guideline for questions that may help you gain information that is important to you.
What type of lymphoma do I have?
Where is my NHL located?
Has it spread (metastasized) to other parts of my body?
What stage is my cancer?
How important is the stage to my overall prognosis?
How many pathologists have reviewed my biopsy tissue, and what are their qualifications?
What test(s) will I have done?
When should I expect to hear the results from these tests?
Who will call me with the results of these tests? Should I call to obtain the results?
If I need to get copies of my records, scans, X-rays, who do I contact?
Did you consult with anyone before determining this diagnosis? If so, with whom?
What are their (your) qualifications and specialties?
What will their role be in my treatment?
How many physicians and who will be involved in my care? What are their roles and who will be the primary physician in charge of my care?
What is the standard treatment for my type of lymphoma?
What is the prognosis with standard treatment?
Are there other treatment options I should consider?
What clinical trials are available that would be appropriate for my type of lymphoma?
How quickly must I decide about treatment? Do I have time to do some research on my own first, or must I proceed immediately?
What treatment do you recommend and what is that recommendation based on?
What are the risks or benefits of the treatment that you are recommending?
How many patients (percentage) usually respond to this type of treatment?
How long does each treatment last?
How will I receive my treatment? Is it a pill? Is it an intravenous infusion?
What will it feel like to get treatment?
Can I drive to and from my appointments? To and from my treatments?
Can I stay alone after my treatments or do I need to have someone stay with me?
Will I have to be in the hospital to get my treatment?
How often, during treatment, will I see the physician and/or the nurse?
How often do I need to have additional checkups or tests between treatments?
What will happen if I decide not to be treated?
What kinds of side effects can I expect?
How will these side effects affect my ability to go about my normal daily routine?
Can I continue to work during my treatments?
How long after I am finished my treatment can I expect these side effects to go away?
Are there emergency numbers I should call if I run into problems?
Will I have...........
|Nausea/vomiting (emesis, anticipatory nausea/vomiting)
|Hair loss (alopecia)
|Low blood cell counts (anemia, thrombocytopenia, neutropenia)
|Nervous system problems
When might these side effects occur?
How long will they last?
Could they be life threatening?
If I lose my hair, will it come back?
Do you have information sheets about each of the drugs that will be used in my chemotherapy?
What treatments are available to manage any side effects I might have?
Will a reduction or delay in my chemotherapy reduce my chances of survival?
Are there any medications I should not take while I’m going through treatment?
Are there any activities I should not do during/after treatment?
Are there any long term or permanent side effects of this treatment?
What risks are associated with this trial that are not associated with standard treatment?
What are the benefits of this new treatment over standard treatment?
Are there any costs to me for participating in this trial?
Are all the participants given the experimental treatment or are some given a placebo?
Do you have any preliminary results from this trial yet?
How much will my treatment cost?
Will my insurance company pay for my treatment?
Is there someone in your office that assists patients with questions about insurance? With reimbursement? Who might that be?
If my insurance does not pay for a particular medication that might be beneficial to me, will you choose an alternate treatment? Even if it might be less effective?
Do you have access to pharmaceutical patient assistance programs I could access if I cannot afford a particular medication or my insurance will not pay for a particular medication?
How can I get treatment if I do not have insurance?
How do I tell my family, children, and friends about my cancer?
Are you willing to speak with key family members about me and my treatment?
Are there local support groups I can join? For my family and friends?
Is there access to a social worker?
Is there access to a dietician if I have nutritional concerns or difficulties?
Do I need to be on a special diet?
Do I need to change my lifestyle in anyway?
Can I have sex?
What type of precautions do I need to take?
Who do I call if I have an emergency?
What are the phone numbers I should have in order to reach you? The nurse? The hospital?
PALLIATIVE CARE OPTIONS
If treatment is not successful what are the options available for care?
What is Hospice?
Is Hospice an option? What is involved in signing onto a Hospice program?
When should a decision about entering a hospice program be made - and who should make it?
Should I wait for our physician to raise the possibility of hospice, or should I raise it first?
Can a hospice patient who shows signs of recovery be returned to regular medical treatment?
How many family members or friends does it take to care for a patient at home?
Must someone be with the patient at all times?
What specific assistance does hospice provide home-based patients?
Does hospice do anything to make death come sooner?
Is caring for the patient at home the only place hospice care can be delivered?
How will pain be "managed"?
Will medications prevent the patient from being able to talk or know what's happening?
If the patient is eligible for Medicare, will there be any additional expense to be paid?
If Medicare or any other health insurance does not cover the patient, will hospice still provide care?
Does hospice provide any help to the family after the patient dies?