is common for the ears to shut down and feelings to take over. It doesn’t matter if you are a sun-worshipping 75-year-old who is told that the biopsy came back positive for skin cancer, or a young mother who is told that she will need a biopsy because the mammogram finding was concerning—it is always a stunner. Fear, anxiety, sadness, anger, disbelief, denial, shock—any of these feelings can distract you from hearing what is being said. Some people even describe a sense of relief when finally a name is assigned to the cause of their symptoms. All of these feelings are normal. Most people need time to process the information given, but feelings can get in the way. Not only in the way of hearing what is being said, but in moving forward in making decisions about your cancer care and treatment.
We all bring our past experiences to any new situation, and so it is with cancer. Some may have experience with taking care of a loved one with cancer, or for some this is the first time cancer has touched their lives. It is not uncommon for a newly diagnosed person to suddenly find out how many other people will have a story to tell of their experiences with cancer, relating both good and bad information whether you need to hear it or not. It is important that as you are discovering facts about your cancer and making decisions about care and treatment that you try to make your decisions based on facts, not largely on feelings or someone else’s experience. Every situation is unique.
So, how do you find out more about your cancer? What are good sources of information? How do you make the most out of your doctors’ visits? How do you keep all of the information you are receiving organized? Do you need a second opinion? These questions and others make up the base of what we’ll discuss in this chapter.
Information Gathering
As you begin to seek information about your cancer diagnosis, it is helpful to begin with a basic understanding of what cancer is. Cancer is very complex. It is a name given to more than 100 different types and subtypes of the disease. However, at its core, cancer is an uncontrolled growth of abnormal cells in the body. Which cells are abnormal, what organs or tissues are affected, or what makes the cell abnormal are some of the ways that cancer is categorized in order to name it and then, further, to figure out the best ways to treat it.
Cancers can be described by the type of cells that have become abnormal. This might be the cells of a specific organ and, no matter where these abnormal cells show up, they are treated as a cancer of that organ. For example, a colon cancer cell is found in a liver tumor. The cancer would be treated as colon cancer that has spread to the liver, not as liver cancer. The colon cancer would be referred to as the primary site of the cancer, no matter where it shows up in the body.
Another example of classifying cells by type is leukemia. Leukemia cancers are cancers of the white blood cells in the body, but they are further described based on which of the abnormal white blood cells are affected and whether they are fast growing (acute) or take a slower time to develop (chronic).
As scientists learn more about the inner workings of cancer cells or triggers, such as genetic changes that may cause cancers to start or not be able to stop, more opportunities become available to take advantage of these discoveries in order to develop new treatments. Knowing what makes each person’s cancer unique is being used more and more to make treatment decisions and to take advantage of new treatments being developed.
The “Workup”
Before determining that a person, in fact, has cancer and assessing how best to treat the cancer, there is a process of evaluation that we’ll call the workup. This phase of evaluation actually begins either with finding out what is causing signs and symptoms that a person is experiencing or perhaps with a standard test result. There may be an abnormal lab test or finding a suspicious lump on an X-ray or scan, or an abnormal-looking skin lesion. Whatever the abnormal finding, more testing will be recommended before naming the problem as cancer. That testing will start with a complete medical examination, including a medical history, physical exam, lab tests, X-rays, and analysis. This process can vary from one person to another. The diagnosis of cancer is not always arrived at by the same path. This part of the process is usually orchestrated by the primary care physician, who will refer to a specialist as necessary for additional evaluation.
The information obtained during the process provides clues. They may show an abnormality or the absence of an abnormality, but each result may lead to additional testing until a diagnosis is determined. The process may take time and can cause frustration and anxiety. And, lacking a firm diagnosis yet, it can be easy to try to self-diagnose and get ahead of the facts. It is important to remember that signs and symptoms overlap in many conditions. Knowing what is causing a problem is key to being able to find the right treatment.
Biopsy
For most cancers, the diagnosis of cancer is not confirmed until the results of a biopsy are known. A biopsy is a procedure where a sample of tissue is taken so it can be looked at under the microscope for evaluation of the cells. There are different types of biopsies. The determination as to what type of biopsy is used is based on what type of procedure is needed in order to obtain the information required to make the diagnosis. The biopsy procedure can range from a very simple procedure using a small needle in the doctor’s office to a surgery to remove a tumor to obtain the tissue needed for evaluation of the cells.
The tissue sample obtained from the biopsy procedure is processed in the pathology laboratory. Samples of cells are placed on glass slides so they can be looked at under the microscope by a pathologist. If there is a larger tissue sample, the specimen is processed so that tissue can be available if needed for future evaluation. Whichever pathology lab first processes and stores these samples also keeps and stores the samples long term. For example, if the slides are sent to another pathology lab for a second opinion, following the evaluation the slides will be returned to the original lab.
A pathologist is a doctor who specializes in interpreting laboratory tests and evaluating cells, tissue, and organs to diagnose disease. The pathologist provides a pathology report to the surgeon or oncologist, who then makes the diagnosis. The reading and interpretation of the biopsy slides are a process that can take from several days to a few weeks to get the final pathologic diagnosis. Cancer care in recent years has progressed to where certain features of the cancer cell are providing new targets for cancer treatment. Treatment decisions are made based on having this additional information available. Special processing of the pathology slides to obtain the information can add more time to the interpretation.
Staging
Another part of the workup process that happens before a treatment plan can be completed is called staging. Basically, the staging process is finding out how much cancer is in the body and where it is located. This process is very important for a number of reasons:
• Understanding the stage of the cancer gives doctors information they need to develop a prognosis and to design a treatment plan for the individual patient.
• Staging provides a common language for doctors to effectively communicate about a patient’s cancer, so they can work together to develop the best course of treatment for the patient.
• Knowing the stage of cancer is important in identifying clinical trials that might be a treatment option for the patient.
• Staging also helps healthcare providers and researchers exchange information about patients and gives them a
