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Cancer patients should turn to their doctors, not the internet for information

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For the Gazette
Monday, May 07, 2018

There are two lines of questioning I have encouraged in my cancer patients during my three decades as a medical oncologist. One has to do with understanding the disease. The other has to do with understanding their own diagnosis and treatment.

It is important that a patient be cancer informed by his or her provider in this age where Google or another web browser are all too available as an inaccurate substitute.

Honest communication is also important between doctor and patient.

The doctor needs to understand what a cancer patient knows about his or her disease. It is not easy for any provider to deliver news that is not optimistic for patients, but honesty opens the door for a patient and their caregivers to better discuss what they are faced with, what options and supports they might want to pursue, and what the outcomes of those options might be.

Patients may vary in the amount of information they want, but all patients need to have a basic understanding of the cancer involved, the prognosis of the disease and treatment — its side effects and benefits.

The complexities of cancer may frustrate some patients seeking a clear answer as to why they developed the disease. The fact that cancer is not one disease but many also is not understood well by patients.

Will the course of the disease be like Uncle Joe’s? Will taking certain herbs help the prognosis? Don’t today’s targeted therapies mean a short course of treatment and a cure?

Providers need to take the time to ensure patients have the understanding they want about their prognosis and treatment, and patients should ask their providers questions to lessen confusion and to help with their own care plans.

Here are some of the questions I am most frequently asked by patients:

How will my cancer advance if left untreated?

This depends on the type of cancer and how aggressive it is. There are some cancers that are so slow growing that they do not represent a great threat to the patient’s survival or overall health. Unfortunately, that does not apply to the more common types of cancer, such as breast, lung, and colorectal cancers.

What does the “stage” of my cancer mean?

Staging is a method of describing how extensive, or widespread, a cancer is in the body. Staging is often updated as new data on survival and other outcomes are described. Generally, though, staging ranges from stage 0 (a cancer that is not deeply invasive into tissue and is not at risk for dissemination) to stage IV (a cancer that has spread to organs distant from the site of the cancer’s origin.

How do you know what course of treatment is best for me?

For common cancers, clinical trials have helped to define treatment approaches that yield the best outcomes, depending on the stage of the patient’s cancer and other tumor-related factors, such as molecular classification and protein receptor status and patient characteristics, such as age, energy levels and other health problems. For rarer cancers, recommendations are often made based on treatments and outcomes of patients who have faced those cancer in the past; we call these studies retrospective series. For more difficult-to-answer questions, other reporting techniques, such as clinical overviews and metanalyses — the taking of data from a number of clinical trials or retrospective series in order to increase the number of patients analyzed — are used. Most cancers have some collection of data in the medical literature that helps to define the best answers available today.

What side effects can I expect from treatment, and how will they be managed?

Side effects vary widely based on the therapies used, but there are medications to help with them. Communicate with your physician regarding the types of side effects anticipated and the management needed to reduce the impact of these side effects.

How will I know if the treatment is successful?

This depends on the intent of treatment. For advanced disease, clinical examinations and imaging tests such as CT scans would be used intermittently to see if the cancer has stopped growing, or is shrinking. For earlier-staged disease, the goal of treatment is to prevent a recurrence of the cancer, either in the site where it started growing, or elsewhere in the body; in this case, time — often years — will be required to see if a malignancy will return. Clarifying the goals of care with your physician is a key part of the conversation, and patients should be clear about the intent of treatment, and what can and cannot be achieved.

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