Diagnosed with Lymphoma: 10 Tips on How to Get The Most From Your Doctor
by Jenny Maxon R.N.
1) Build your lymphoma treatment team
For anyone diagnosed with lymphoma, the first step is to gather the right people to ensure that you’ll receive the best treatment possible. Research has shown that people with lymphoma are more likely to get the best results if they have a good team of medical specialists taking care of them.
Hematologists and Oncologists specialize in the treatment of lymphoma and typically coordinate all care. Family and friends who can help you navigate the treatment process are important to have involved.
Oncology nurses, oncology social workers, mental health professionals, dietician's, and patient navigators—all fulfill extremely important roles in helping patients and caregivers throughout the cancer process with supportive care and access to available resources. Understand your cancer treatment team.
2) Be your own advocate
Inform yourself about lymphoma before you see your doctor. Make sure you understand the type of lymphoma you have, the stage of the lymphoma, the range of treatment options, and the role of precision medicine. All treatment is discussed based on the type and stage of lymphoma and testing for precision medicines. You can begin to learn about lymphoma here receive our helpful lymphoma newsletter to carry you through diagnosis, treatment and survivorship.
3) Strongly consider a second opinion.
Lymphoma is very curable cancer and lymphoma treatments are evolving rapidly and may include chemotherapy, immunotherapy, precision medicines based on genomic testing, CAR T-cell immunotherapy and stem cell transplantation. The doctors most aware of these rapid changes are at major cancer centers. The more you can learn about your diagnosis and your treatment options, the better chance you have of receiving the best treatment. Getting a second opinion from a lymphoma expert will help you understand ALL available treatment options and provide reassurance to you and your family that you are receiving the most appropriate therapy.
4) Ask about the role of precision medicine
Unlike traditional chemotherapy, which attacks any cell in the body that is rapidly dividing, precision cancer medicine aims to target specific genetic alterations that allow cancer cells to grow. Most or all lymphomas result from abnormal genes or gene regulation. The strategy of precision cancer medicine is to define abnormalities at the most basic genetic level. These abnormalities in the DNA are called genomic alterations and they are responsible for driving cancer cell growth. By identifying the genomic changes and knowing which genes are altered in a patient, cancer drugs that specifically attack that gene (or the later consequences of that gene) can be used to precisely target the cancer and avoid affecting healthy cells.
An on line community can be a great resource to help find a doctor as well as to share information, learn about treatment choices with other individuals in your situation and get support. CancerConnect will link you to cancer patients being treated at leading cancer centers.
When an individual is facing a diagnosis of colorectal cancer, the whole family needs information and support to cope with this difficult event. People with lymphoma and their family members should feel comfortable asking their health professionals, including their physicians and nurses, for educational and support resources. Treatment centers often have nurses or social workers available to provide counseling and referrals to support groups and other resources.
6) Bring written questions to your visit
A doctor’s visit is stressful, it is much easier to bring a list of written questions to ensure they all get answered and none are forgotten. Bring someone with you to take notes or consider using a recorder so you can listen and engage your doctor carefully. Being able to “replay the conversation is very helpful.
7) Be organized
It’s not unusual for patients to be treated by multiple doctors. To stay on top of the treatment routine, it’s critical to record notes from doctor appointments, questions/answers for your physician, dates of appointments, test results blood cell counts, medications and dosing schedules, prescription refills and other information.
8) Make sure you understand the treatment outcomes.
Your doctor should be able to tell you what you chance of survival/cure is if you elect to receive no treatment then explain how each proposed treatment improves upon that outcome. If you don’t know the expected outcome of no treatment vs the proposed treatment how can you possibly decide what to do?
9) Ask about clinical trials
Ongoing research is being conducted to find new treatments for lymphoma. When new treatments are discovered, they must be developed in humans. By learning about clinical trials, you can identify opportunities that advance the treatment of lymphoma and possibly benefit your personal prognosis. Learn more about clinical trials.
10) Make sure you have an overall care coordinator
Everyone needs a single point of contact is responsible for your overall care. This can be your oncologist, your primary care doctor, or a specialized nurse navigator. Without a “quarterback” the potential for miscommunication, and frustration is considerable. Make sure you have one primary contact that is your advocate!