How do I talk to my oncologist about innovative treatments?

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When you find yourself sitting in a medical oncologist’s office, you may feel overwhelmed. Everything may seem chaotic, complicated and uncertain. The language and the science can be hard to follow. You are not even sure if you’re asking the right questions. If you do ask questions, the answers seem to come too fast, filled with jargon and caveats. It is hard enough to comprehend the answer, let alone trying to come up with the next best thing to say.  Things may seem obvious to everyone except you.

Patients want to know what’s happening to them now, what might happen going forward, and how to best respond to whatever happens. You want understanding, action, and a strategy, but you may feel like you’re only getting offered tactics or a cookie-cutter process. If this describes your experience, you are not alone.

We’ve outlined what innovative treatments are and why you should consider them and we’ve explained why it matters which oncologist you see. Armed with this information, you may be interested in pursuing an innovative treatment via a clinical trial or in getting a second opinion, but you don’t want to offend your oncologist and you’re not sure how to bring it up.

Firstly, this is your life and cancer is serious and often deadly. You should always do what feels right for you. No oncologist should be offended by a patient asking questions or seeking a second opinion and if they are, this should be a red flag that indicates the second opinion is even more important.

Oncologists are not hiding anything. Most oncologists simply don’t have innovative options to offer you and will likely steer you to standard treatments they can offer. This is why it is often necessary to seek a second opinion.

You may want to check with your insurance as a second option might require a referral from your current oncologist or you might be able to set up a second opinion appointment independently. Because second opinions are nationally recognized as being beneficial, nearly all insurance companies will pay for at least one (and some pay for as many as the patient wants), but it is always good to ask them about if a referral is needed, or if there are any limitations.

At Sagely Health, we match patients to very specific oncologists and medical centers based on available options, but our general advice is to get a second opinion somewhere that has multiple clinical trials available for your cancer type and situation, which is most often an NCI accredited academic medical center.

It is also very important to have a friend or family member (advocate) at each and every appointment. This person should take notes, make sure questions and their answers are clearly stated, and then after the appointment, review what was said, offered and decided.

If you don’t have someone that can do this for you, most medical centers will provide a patient advocate service or patient liaison for you. Contact the medical center’s patients services department to learn more. You can also ask to record your appointment on your phone (for example, with Voice Memos) so that you have a recording to review afterwards.

As uncomfortable as it may be, it is important to have a frank and honest discussion with your oncologist about your prognosis and the expected outcome of any treatment, even when they dismiss it at first.

Your oncologist may tell you that any given treatment they provide “works” and they expect it will ”‘work” for you. However, you may want to dive deeper into what they mean by “works” and we recommend you ask about the five year survival rate, meaning what percentage of patients with the same cancer type and stage are still alive five years after receiving this treatment.  Most patients might be happy with an 80 percent or higher chance to make it to the five year point, but when it is less, you may want to consider an innovative approach that may do better than standard.

Without a clear picture of the best, worst, and average outcome of a given treatment, it is difficult to know if an innovative treatment approach is advisable or if the standard treatment is acceptable. You may certainly ask your oncologist if there are other reasonable approaches to consider. Or you could ask what more effective treatments might be available in the future—essentially another way of asking what is currently in clinical trials. However, since most oncologists only have standard treatments to offer, you are unlikely to be told that clinical trials are worth exploring.

In our experience, patients who want to pursue a clinical trial must declare it very clearly. Patients who take initiative, find advocates, the right second opinions, and seek to understand and be understood, are the ones that most influence the direction of their care. We aim to empower these patients.