I care for people with melanoma. To give you an idea how personalized medicine is impacting care, take the example of a patient I treated at Duke Comprehensive Cancer Center 18 months ago – let’s call her Sarah.
A 37-year-old nurse, Sarah and her husband were trying to start a family. Like many melanoma patients she had fair skin and red hair. Her mother died of melanoma. She came to me after her surgeon had removed a small black-pigmented skin growth and lymph nodes under her arm. After complete review of her clinical story we diagnosed her cancer as Stage IIIB (“3B”) melanoma. Reviewing cancer statistics and matching them to Sarah’s disease tells us that Sarah had about a 50% chance of surviving 5 years. In order to maximize her chances of long-term survival without melanoma, together with Sarah, I was trying to decide on a treatment and care plan that would reduce the chance of the melanoma returning; this is called adjuvant treatment. Sarah and I were considering whether an adjuvant treatment plan was right for her, and if so, what medicine, for how long, and with what personal impact on her life.
At this point we have one chance to select the right treatment plan, because melanoma that returns is more difficult to treat and rarely goes away for good. You go to the “cookbook,” look up the treatment guidelines and try to balance the standard-of-care with what you know about the individual needs and preferences of the patient. In Sarah’s case, finding a balance between effective adjuvant treatment, preserving her ability to have children, and helping her maintain her job were important considerations. The treatment guideline advised interferon, a clinical trial or no treatment, but we had few clues as to the best treatment path and certainly no information about fertility or the influence of Sarah’s genetic makeup on her ability to derive benefit from treatment.
In the year and a half since I treated Sarah, we now have new tests to predict risk and learn more about the specific tumor each patient has. Molecular descriptors about the cancer and striking radiological images provide important clues. The information available to us is getting better and better, which makes it more likely that we will hit the mark in the one shot we have to find the right treatment. In the future, I anticipate that other factors such as Sarah’s heritage, her symptom profile, environmental exposures, and personal values will also be incorporated into the decision-making process. Sarah’s case reminds us that these are real people undertaking real and exceptionally critical decisions; we need to be able to harness all available information to maximize the chance that we make the right decision for Sarah and patients like her.
At the same time this growing wealth of information brings new challenges for physicians. The “cookbook” does not work well as we gather more detailed information about potential risks, likely side effects, and benefits of different treatment combinations.
Physicians care about getting these decisions right for each patient. The current “cookbook”, though, is one-size-fits all. We need information science and technology (IT) to help match guidelines and predictive mathematical models informing patient care with new information available about individual patients and the type of tumor they have. And it has to happen at the point of care, when we need it. The amount of information can be overwhelming. Evolving data systems and IT infrastructure that are reliable and trustworthy will be key to making the most of the information available. Along with this, we simply need more time with patients. We often have about 8 to15 minutes to make a decision with the patient that will affect their entire future. This is not what patient-centered care and personalized medicine are all about.
Someday I hope that when a patient like Sarah comes in I can look up her exact type of tumor, incorporate her personal family history and other medical information into the story, see what treatments she is likely to respond to, understand the potential risks, and balance her personal concerns like maintaining her fertility. Personalized medicine is advancing quickly, but we need information systems to support good decision-making for physicians and patients as the information available continues to expand exponentially.