Getting a diagnosis of cancer, with its emotional shock, is disempowering for patients. Frequently patients struggle for more information to try to establish a little more control over their situation.

Today, compared to just a few years ago, detailed information on cancer and its treatment is widely available, and the internet is an accessible source. However, researching a cancer diagnosis on the web poses a number of issues that impact whether the results of the search offer much guidance or solace.

Information on some of the more popular sites is very general, and not particularly insightful beyond noting that cancer is a disease with treatment options that include surgery, radiation and chemotherapy. They also list the stages, which serve as a classification of extent of the disease. Since each cancer diagnosis is an individual one and treatment recommendations are also increasingly individualized, such basic information may prove more confusing than helpful.

Many steps are involved in diagnosing a patient’s cancer. These generally include getting a biopsy to confirm malignancy, allowing for a microscopic look at tissue cells for further information on cancer type and where it started, as well as lab tests and imaging procedures also to help determine the stage.

Treatment will be based on what is learned, as well as on the overall health of the patient. There are standard rules that determine whether a cancer is resectable, in other words, can be safely and completely removed, as well as whether the patient can withstand a surgical procedure.

When a best approach — modified for patient factors — is made, then patient goals and concerns enter the discussion, so that a shared decision around an agreed plan can be made.

All of this input toward determining appropriate cancer treatment for an individual cannot be gleaned from public sources.

A better approach for patients is to get as much information as possible from their medical teams. What is the stage of the cancer? What did it look like under the microscope? What is its grade, in other words, how do its unhealthy cells compare to healthy ones? Has the cancer spread to the margins of the sample tissue? What did the pathology report show in terms of tissue staining and other so-called biomarkers, as well as relevant genetic and molecular alterations?

Having this more detailed knowledge better serves cancer patients and their families when they go in search of further information on the web and when they use it to search for further clarification on such sites as the National Cancer Institute (www.cancer.gov) or the American Society of Clinical Oncology (www.cancer.net).

Information on such credible sites may be aimed at professionals, but I have invited my patients to print it out and bring it on their next visit with me for translation, if they need it.

Cancer is not just one disease, but a series of conditions that are heavily segmented even by type, with many presentations that require different approaches.

Reading multiple web pages is not going to give an individual the correct, or adequately detailed information about what he or she faces without narrowing the scope of the search, and starting with more detailed information about the diagnosis.

I have had patients and their families come into my office who look absolutely exhausted from reading volumes of material on the web that was not applicable to their situations. They could have researched more narrowly and ended up better informed if only they had begun with more specific information about their own diagnosis from their medical teams.

A patient’s team will recommend treatment and a plan for delivering it. The medical team should be able to guide patients on what are the key next steps. From there, patients can start small by researching the drugs prescribed, for example. This is better than trying to absorb everything about cancer in a week’s time.

Having an expert treatment team is critical to making appropriate and informed choices, and good communication is key for patients in selecting those health professionals.

Patients seem to become a lot less anxious once they have a treatment plan, or a clear pathway to it. Getting there means a medical team that communicates with the patient and a patient that communicates with the team so questions are raised and answered and the right information is exchanged and understood.

Dr. Wilson C. Mertens is vice president, medical director cancer services, Baystate Regional Cancer Program. He is one several Baystate health professionals who address issues related to cancer in this space on a rotating basis each month.

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