Special Report: Coldwater Creek
Part II. I have just been diagnosed with a serious illness.
1. Confirm your diagnosis. All too often, we want to rush toward the first treatment proposal and get this disease in the rear view mirror as quickly as possible. But that’s a terrible mistake, especially when, according to the Institute of Medicine, each one of us will experience at least one diagnostic error in our lifetime. If you’ve been diagnosed with a serious problem, review these 8 essential questions you should ask your doctor about a diagnosis. Additionally, if your diagnosis was arrived at via biopsy, imaging, blood work—you’ll want to get an additional reading by a pathologist or radiologist who is an expert on your type of cancer. To find an expert to review your imaging and/or lab results, start by looking at the websites of the centers of excellence in your specific diagnosis. So, let’s say, you need your lung cancer pathology reread. Look up the pathology departments of the top teaching hospitals and institutions in the largest metropolitan hospitals near you, and see who is focused on your disease by reading up on those pathologists’ research areas. Or simply call the department, explain your condition, and ask for a referral. You can also have your slides, images, and tissues sent to some of the better-known hospitals across the nation, many of which have second-opinion forms online.
2. Find an expert. You want to be in the care of an oncologist who is an expert on your specific disease, has likely seen every iteration of it, and is up to date on the latest treatment options. That means finding, for example, a physician who spends the vast majority of his time studying and working on carcinoid tumors of the appendix, or a surgeon who has deep experience operating on tumors that are located in the area of the brain where yours resides. Here are four tips that insiders use to find the best experts for any condition.
3. For significant problems, go to significant institutions. Small community hospitals are wonderful places that can do great work on thousands of common medical ailments. But when you are facing down a rare or complicated diagnosis, you owe it to yourself and those who love and depend on you to get to a larger, academic hospital or established medical institution where they have the most experienced physicians and nurses, and the technology and resources to anticipate complications. This will become so important for patients who are also dealing with co-occurring problems such as diabetes, hypertension, obesity, or other ailments that require careful monitoring during treatment. Start by searching the websites of the academic medical institutions near you—ones that have entire departments devoted to your condition. Consult with physicians whose research interests best match your problem. And always ask your doctors, “What portion of your time as an oncologist do you spend on my specific condition?” You want to know that you are in the hands of an expert, and not someone for whom your disease is a novelty.
4. If you have been diagnosed with cancer, have your tumor tissue profiled. Ask your doctor to have your biopsy tissue sent to one of the commercial profiling companies (Foundation Medicine, Caris Life Sciences, OncoPlexDx, NantHealth, and Guardant Health are well-known molecular profiling firms, and their services are typically covered by insurance). Depending on the test, these companies can analyze your cancer tissue for known genetic mutations or abnormal levels of certain proteins. A report is sent directly to your doctor, to be shared with you. In some cases, there are already drugs on the market, or in clinical trials, that specifically target the abnormality in your tumor. Molecular profiling has become standard practice at some of the top cancer hospitals in America, but some doctors are dismissive of the value. If this is something you want to explore, educate yourself about procedure and ask your doctor at your next oncology appointment, “I’ve been doing a lot of reading about the mutations that can cause my cancer, and I’d like to send my biopsy tissue to be profiled. What do you think?”
5. Immerse and educate. Biotechnology is moving at break-neck pace and you want to make sure you are keeping abreast of the latest research and clinical trials about your disease—because you cannot always assume that your doctors have the time or resources to keep up. There are many ways to stay in the loop: set up Google alerts; research the latest articles about your condition on PubMed; sign up for educational newsletters from the disease-specific philanthropies; go to conferences and introduce yourself to top experts on your problem—then keep in touch. When it comes to living with cancer, you want to think of your journey as “a bridge to a bridge.” Your treatment may not cure you, but it can buy you another six months, three years, whatever the case may be, until new and better drugs for your problem become available. Biomedical companies are developing therapies at an unprecedented rate. But in order to benefit from all this good research, patients must be consistently and proactively engaged in their own care.