If you are facing a cancer diagnosis—after all the worry, the scans and scopes, the doctor’s appointments, discussions about surgery (or no surgery), and if you will need chemotherapy or not—you will likely arrive in the office of a medical oncologist and this doctor will understandably feel like your lifeline.
Unfortunately, you will also be aware that this doctor is extremely busy with many other patients. Despite a great personality, a wealth of experience, and the best intentions, you may not feel knowledgable or comfortable about the presented treatment options. The doctor may seem rushed, scripted, and vague about the possible outcomes of your cancer and treatment.
Because an oncologist is seeing 10-20 patients a day—balancing the incoming scans, labs, and urgent requests, while helping address side effects and complications—you can see why they don’t have time to carefully research, plan, or explain treatment options, scientific advances, and lay out a comprehensive treatment strategy.
So, how are they coming up with treatment recommendations?
Cancer is incredibly complex and that complexity has exploded in the past few decades. When factoring in cancer type, spread, treatment history, diagnostics, and genetics, almost every patient could be considered to have a unique or rare type of cancer. This complexity means that even with more time and less patients to serve, no single oncologist could keep up with all the advances in cancer treatments and diagnostics happening in real-time.
By necessity, oncologists largely follow the guidelines of standard treatment laid out by the National Comprehensive Cancer Network, an alliance of 31 cancer centers in the United States. In cases where surgery is possible, it is traditionally done first and only then will oncologists see patients to provide treatments like chemotherapy and radiation. Each oncologist is expected to stay updated on the latest guidelines and possible treatments, but will also have preferences based on their personal experience.
Oncologists are trained to provide a standard treatment to you, usually chemotherapy. They are very unlikely to suggest you go elsewhere for your treatment as they know nearly all other oncologists will recommend the same standard treatment. If you seem uncomfortable with the approach they offer, they might send you to another oncologist they know to hear the same thing. Due to the 'honor code' amongst doctors, even when a patient is seen by a doctor for a second-opinion, the majority (60%) report being influenced by their relationship with the first physician and the awareness that the consultation results will be available to both professional colleagues as well as the legal system.1
They are not seeking more innovative approaches and thus innovative treatments offered via clinical trials are almost never suggested to cancer patients by their medical oncologist. If you ask about clinical trials, you’ll likely be told that could come later or would not offer you much benefit.
If a trial is available at the medical center where the oncologist practices, there is a slightly higher chance it will get offered, but not much. Cancer centers are large places with many departments, offices, doctors, and clinic locations. Your oncologist is unlikely to be aware of an available trial or might not have time to wade through the complex entry criteria to see if you qualify. They certainly don’t have the time to compare studies and review past trial data to find the trials that offer the best possible benefit in your particular case.
So how do you find the expert you need to take a more personalized approach to treatment?
The oncologists running the clinical trials that match your situation are ideally situated to evaluate your case for what will offer you the greatest benefits. These oncologists that are involved in research (called investigators) usually split their time between seeing patients, running trials, and reviewing data and outcomes. They are well versed in both standard therapies and ongoing research related to their area of interest. They are compensated for providing time and attention to patients that are on a trial (the trial protocol and sponsors require this) so they are more likely to provide more personalized attention throughout.
With adult clinical trial participation around 3-5 percent, it seems you have to be extremely lucky to find yourself being treated by a trial investigator that specializes in your type of cancer with its unique set of diagnostics and genetics. For most cancer patients, especially those treated in rural areas, these researching oncologists can seem out of reach.
A patient can increase their chances of getting a more innovative treatment offered by seeking care from the closest large academic medical center, particularly those that are NCI-Designated Cancer Centers. Many trials are offered at and led by these centers. However, not all trials are offered at all medical centers, and often so many trials are run by so many different doctors at one large center, that the patient ends up seeing a doctor in one department, when they would have benefited from seeing a different doctor. If a trial is not offered where you are being treated, it is very unlikely for any medical center to send you somewhere else or even identify other locations. They have a financial incentive to provide the treatment at their center.
Additionally, in an effort to reach as many patients as possible and avoid competing trials, the locations for a given clinical trial are likely to be spread across the country instead of offered at multiple nearby medical centers. Therefore, you may find yourself at a prestigious cancer center while the best treatment for you is available across town at a different medical center.
While there are many factors, we believe patients can and should be matched to the doctors and medical centers that are most likely to obtain their best possible outcome. Most of the time, this includes offering innovative treatments options available at every step in their treatment journey.
You are unlikely to begin your treatment with an oncologist who can offer you the most promising innovative approaches, so if you’re interested in pursuing these innovative treatments, you will need to seek a second opinion. Too often, when cancer patients seek out a second opinion, they choose (or are directed to) another oncologist at random or with a close relationship to the first doctor, who will only offer the same standard treatments. Instead, they should seek an oncologist who is likely to offer a potentially better approach.
However, we know that your oncologist is your lifeline and that many patients find it difficult to request a second opinion, fearing that the doctor will interpret this as questioning their treatment recommendations, so we also want to address how to talk to your oncologist about finding innovative treatments.
1 https://pubmed.ncbi.nlm.nih.gov/21332650/
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