This post was first published on ASCO Connection, November 9, 2016. ASCOConnection.org is the professional networking site for the American Society of Clinical Oncology (ASCO) and the companion website for ASCO’s official member magazine, ASCO Connection.
When the word “cancer” is said and you are asked to see an oncologist, a flood of emotions can arise. Often you are even unsure of what questions to ask. I hope this blog will help create a framework for a discussion to have with your oncologist and to empower you to be able to navigate the journey ahead.
“What type of cancer do I have?”
Cancer is defined as out-of-control cell growth. Cancer cells start growing in 1 place and then have the potential to spread to other locations. Cancer is a very broad term. It would be like saying a car is a car. There are multiple different types of cars and multiple different types of cancer.
The major categories of cancer are carcinoma (epithelial tissue), melanomas (skin), lymphoma (lymph nodes), sarcoma (connective tissues), and leukemia (bone marrow). Carcinomas tend to begin in an organ system within the body. For example, diagnosing a patient with bladder cancer means that their cancer is originating from the bladder, regardless of where it spreads. In some patients, the tumor is not easily defined and we do not know the primary tissue of origin, or they have poorly characterized tumors that can spread without a clear known primary location.
Before you leave the oncologist’s office, have a clear understanding what type of cancer you have and if the primary organ system is known.
“Where is the cancer located currently and what is the extent of disease?”
This is also defined as the stage of the cancer. For carcinomas, the cancer is either isolated to 1 organ or it has spread to lymph nodes and other parts of the body. The earlier we detect cancer, the better chance for a cure. This is also true for melanomas and lymphomas. For other cancers, such as leukemia, the stage becomes harder to define since it involves damage to the bone marrow and can spread into the blood.
We use the T (tumor), N (nodes), M (metastasis) staging system to better define tumors in many types of cancer. We also then use stages (1 to 4), with 1 being less advanced to 4 being more advanced. Each cancer has its own staging and these systems are too extensive to discuss in this post, so be sure to ask your oncologist about the staging for your specific cancer.
To help evaluate where the cancer has spread, we usually use further testing throughout the body. Diagnostic tests include CT scans, PET scans, and MRIs. To better evaluate bone marrow cancers, we usually obtain bone marrow biopsies.
Before you leave the office, ask for the TNM stage or numeric stage so you have a better of sense of the extent of the cancer.
“What special testing needs to be done to better characterize my tumor?”
Breakthroughs are occurring every day in the field of personalized medicine. Evaluating tumor DNA and finding molecular changes are leading to more effective therapies with fewer side effects. Biomarkers are currently being used that allow us to guide treatment for patients to achieve the best response. Certain tumors, such as those in lung cancer, colon cancer, breast cancer, and melanoma, have specific mutations that can then guide targeted therapies. Next-generation sequencing is also looking at using blood to find tumor changes in the cancer DNA. This approach is exciting because it could spare patients from ever needing a tissue biopsy.
Ask your oncologist what molecular testing is used for your specific cancer.
“What is the role of surgery, radiation therapy, and chemotherapy in my treatment?”
These 3 treatments form the essence of treatment in patients with cancer. Surgery involves removal of the tumor by a surgeon. Radiation therapy is a form of treatment that destroys cancer cells by damaging their DNA. It is typically given by a radiation oncologist. Chemotherapy uses medications (by mouth or through the veins) to destroy cancer cells and is directed by medical oncologists. Surgery and radiation therapy are usually focused on cancer that is localized to 1 region in the body. Radiation therapy can also be used to help with symptoms if the cancer spreads. Chemotherapy usually goes throughout the body and travels to destroy cancer cells. Depending on your cancer, you may need to see all 3 doctors, 2 doctors, or only 1 of them. Usually 1 of the doctors is the quarterback.
Make sure before you leave you have a clear sense of who you need to see and what kinds of treatments you will receive.
“Are there genetic implications with the new cancer diagnosis?”
Cancer risk is sometimes inherited within a family because of mutations in DNA. Knowing your family history is essential before you see your oncologist. This information could influence your treatment. Some patients with genetic mutations need more extensive surgery or certain treatments will work better. Usually oncologists work with genetic counselors to get the family history and relay the results of genetic testing to you. The results of certain tests could also affect future generations of your family and their risks of developing certain types of cancer. There are laws to protect patients so insurance companies cannot restrict or deny coverage based on the results of genetic testing.
It is worth having a discussion about any genetic implications with your oncologist during your visit.
“Are clinical trials available?”
To advance the field, we need patients to enroll in clinical trials. Clinical trials span the spectrum of testing new drugs or combinations in patients. Not all patients are eligible for clinical trials. Also, some clinical trials are only offered at certain hospitals. Different clinical trials have different risks. You should speak at length with your cancer care team about the risks, benefits, and alternatives before enrolling in a clinical trial. The current cancer drugs that are changing the landscape and prolonging lives are all borne of patients with cancer who enrolled in these clinical trials. Not every patient needs a clinical trial. Every cancer and every patient is different, but it is worth exploring the options that may exist for you.
“Is there a possibility to discuss my case in a multidisciplinary tumor board?”
The majority of cancer centers have conferences where cases and treatment plans can be discussed. These conferences usually involve the radiologist, pathologist, medical oncologist, surgeon, and radiation oncologist. They can review imaging and pathology test results and work together to discuss and coordinate treatment plans. Treatment options are usually discussed until there is a clear consensus among the experts as to which treatment plan is the best. Usually conferences are held weekly or monthly, and it is worth discussing this with your oncologist. This is especially true for newly diagnosed patients or patients with tumors that are progressing.
“What is the proposed treatment plan and next steps?”
Before you leave the oncologist’s office, it is essential to review with your oncologist, in your own words, what the plan is for your treatment. If further testing is needed, try to get a sense of why the testing is required. Learn the best way to get in touch with the doctor in case you have questions in the future. The office visits are complicated and stressful, and there is a lot of information to process, all in a short time period. Take notes and you will be better prepared for the journey. You are an essential part of the team and the better informed you are, the better you and your oncologist can work together.