No one is ever fully prepared for a cancer diagnosis. While trust between patients and their doctor is important, everything from the first consultation to any potential second opinions should be a discussion you fully understand. London, Ont.-based radiation oncologist Dr. David Palma, and author of Taking Charge of Cancer, wants to empower patients to be as informed as possible. Here, he tells us the top questions people tend to forget to ask during consultations.
1. “What is the stage of my cancer?”
Crucially, add a couple of follow ups to this: “How certain are you of my stage?” and “Are there any uncertainties that we need to look into or tests we need to do?“ Being sure of the stage is important, Palma says. It tells doctors where a cancer is and how far it’s spread. Sometimes tests are inconclusive and need to be followed up on, because a treatment for a stage I cancer is almost always inappropriate for a stage IV cancer, and vice versa.
2. “Can I have copies of my medical records, and can you help me to understand them?”
People don’t need all of their medical records and biopsy reports, Palma says, just the ones specific to their cancer diagnosis. By understanding these reports, a patient can double check and make sure they’re getting recommendations that fit with established treatment guidelines.
Often you will find things on a scan that might be benign, but needs to be checked in another six and 12 months. If patients have a copy of that report, it’s an extra reminder that the follow up is needed. It’s like having an extra person on the team.
3. “What is the guideline recommended treatment for a patient like me?”
There are recommendations of tests and treatment options for patients of certain types of cancers. Of course, each patient is an individual, so these should serve as a starting point — but when doctors deviate from the guidelines, there should be a good explanation why.
4. “Are there other options we should be discussing?”
This is an important one, to make sure you have an idea of all potential ways forward. For example, men with low-risk prostate cancer (meaning it’s not life threatening with the next 5-10 years) have four options: surgery, external and internal radiation, and observation. Some doctors can show a bias, Palma says, and are more likely to recommend whatever treatment they deliver. (A radiation doctor may be more likely to recommend radiation, for instance, while a surgeon may be more likely to recommend surgery. Some patients are not even given the option of observation, he says. The larger cancer associations across Canada and the U.S. often post treatment guidelines for both patients and doctors.
5. “What is the prognosis? What are the expected outcome of this treatment?”
In addition to knowing the goals of treatment, it’s also helpful to know what the chances are, Palma says. Doctors tend to talk in averages, but if the chances of success with treatment are high, knowing that could lower someone’s anxiety. Conversely, if the chances of success are low, it may be hard to hear, but it gives patients the information to really understand what the outcome might be.
6. “I had an ______ this year. Does this influence your recommendation?”
Tell your doctor about any changes to your health or routine. It’s important they are aware of your medical history to assess any risks.
7. “What do you have planned for my survivorship care?”
Survivorship is the time after treatment is done and it can be very difficult for patients. “You’ve had this intense treatment, and all of a sudden — you’re done,” Palma says. “It’s emotionally difficult because you’re not actively treating the cancer anymore and you may not know the plans for the future or where to get help if you need it.”
Palma recommends using survivorship care plans (SCP), which he says are still kind of uncommon in Canada. It’s basically a road map to help tackle some of the uncertainties at the end of treatment (including plans for follow up, as well as what to do if you’re having emotional, financial or any social concerns). You can print it out and bring it to your doctor’s to fill out together.