Understanding the initial cancer diagnosis
It's hard not to feel your brain turning off when someone close to you first says the word "cancer." But a lot of details are important when you're trying to understand what's in store for your her, for you, and for others who care for her. The initial diagnosis may be very specific or pretty vague. Sometimes all the doctor knows at first is that the cancer is "cancer of unknown primary," or CUP, which means that he hasn't been able to find the initial tumor and doesn't know where the cancer started. That's often the case with cancer that has spread to the liver and is causing liver-related symptoms such as loss of appetite.
Other times, the diagnosis may be a specific type of cancer, such as colon or breast cancer , and the doctor may even explain that it's a particular type within that area of the body. For example, when telling you the patient has breast cancer, her doctor may use terms such as ductal carcinoma, lobular carcinoma, or inflammatory breast cancer .
How do I find out exactly what kind of cancer someone has?
If your friend or relative wants you to be at the meetings with her doctor, start by asking questions -- lots and lots of them. Don't let the doctor's time constraints prevent you from taking all the time you need to get information, and don't be shy about asking for clarification if you don't understand something. Don't think to yourself, "I'll just look it up later" -- that's a red flag that you're not getting some piece of information you need. Remember, it's the doctor's job to communicate, and the more information you get, the better a caregiver you can be. Here are some key questions to ask when you're talking to the doctor. If you're not yet attending doctor's appointments with the person you'll be caring for, write down the questions and ask her to make sure the doctor gets answers for you.
- Have you determined where the cancer started?
- Is there a tumor you can locate? How big is it?
- Has the cancer spread to any other organs or systems?
- What stage or grade is the cancer?
- Is it a specific type of cancer? (Some types of cancer, such as breast cancer, come in many different subtypes.)
- Which tests have you run? Are there any other tests we could request?
Why is the diagnosis so important?
Your first instinct will be to want to know what you're up against -- and getting the most accurate and specific diagnosis enables the patient to get the best possible treatment.
You may find yourself wanting to get on the Internet and research the cancer, and to do that you'll need to know not only the type, but the stage, perhaps the subtype, and other information such as whether it's "in situ," which means the cells are limited to one spot, or "invasive," which means it has spread or has the potential to spread.
Within many general types of cancer, such as prostate , colon , or breast cancer , there are lots of different types. For example, both prostate and colon cancer tumors are very likely to be adenocarcinomas. And while these medical terms may be unfamiliar, it's important to know them because using them with the doctor and others will make it easier to discuss what to expect in terms of prognosis and treatment .
Keep in mind that while you and the patient may feel a rush to initiate treatment, it's often worthwhile to take a little time to make sure the doctor has done all appropriate tests and you have as much information as possible before deciding on a course of treatment. Remember, too, that initial planning is extremely important for the treatment of many types of cancer. The first treatment choice can sometimes limit subsequent options because of the nature of cancer progression.
As a caregiver, you'll be helping the person you're caring for make important treatment decisions both now and down the line, and the more you know about the initial diagnosis, the better equipped you'll be to help her choose treatment options and even where to get treated. Also, provided you have the type of insurance that allows flexibility, having an accurate diagnosis lets you to go to a doctor or center that specializes in that cancer, where the odds of success go up. For example, knowing whether breast cancer is "HER2-positive" can affect treatment decisions because this type of breast cancer, caused by a genetic mutation, responds only to certain forms of chemotherapy. Similarly, knowing that the patient has a rare form of cancer that a particular treatment center specializes in gives you the option of seeking out that treatment.
If the doctor isn't giving you all the information you'd like to have, see How do I get the doctor to give us complete and honest information ? It may be that you need to do some research and then schedule a follow-up phone call in which you can ask additional questions. Remember, this is the beginning of an ongoing relationship between you as caregiver, the patient, and her doctor, and you can always come back to request additional information.
What should I do if the doctor says he can't determine what kind of cancer it is?
Although it's possible that the doctor has run every possible test and still can't locate the original cancer, there's also a chance he stopped short of conducting the full range of tests. These can include immunohistochemistry analysis, CT scans, MRIs and bone scans, blood tests for markers such as CA-125 (which suggests ovarian cancer ) or PSA (which indicates prostate cancer), and examination with an electron microscope. Using a selection of these tests, he should at least be able to classify the type of cancer into one of three main types: squamous cell carcinoma; adenocarcinoma; or a catch-all known as "poorly differentiated malignant neoplasm." No matter what, though, a CUP diagnosis is a situat ion that calls for a second opinion , if for no other reason than to make sure all appropriate tests have been done.
Many people in this situation seek a second opinion from an oncologist but don't realize that a second opinion from a pathologist can also be extremely valuable. Since the treatment plan depends on what kind of cancer the patient has and how far it has spread, changes in the interpretation of the pathology can dramatically affect treatment and prognosis.
Start by obtaining a copy of the appropriate pathology report and cell slides from the doctor, and then seek out pathologists specializing in the type of cancer the doctor thinks she has. Some pathologists and clinics have a reputation for being especially good at decoding an unknown primary. One of the most respected is the Armed Forces Institute of Pathology (AFIP) in Washington, which offers the most advanced diagnostic and imaging techniques; others are available at major cancer centers such as the Dana-Farber Cancer Institute in Boston and the University of Texas's MD Anderson Cancer Center in Houston. You might even want to send slides to more than one pathologist -- in a case like this, the more information you have, the better off you are.