“What are my chances of surviving this?” “How much time do I have left?” “How likely is it that this treatment will work?” When a patient asks these questions after a cancer diagnosis, it can be tough to decipher the statistics packed into their doctors’ answers.
SurvivorNet spoke with Dr. Donald Brand, a professor of health outcomes at NYU Winthrop Hospital's Research Institute, about a new article published in the Journal of General Internal Medicine in which Dr. Brand argues that the survival statistics doctors choose to share with patients after advanced cancer diagnoses are too confusingand that they often beat around the bush. Patients, he argues, should be able to choose which statistics they'd like to know, and the format in which their doctors share them.Read More
If your doctor doesn't tell you these statistics right off the bat, you have the right to ask for them, Dr. Brand says, adding that, through his past experiences with several of his own family members who were diagnosed with advanced cancer, he noticed a pattern of doctors glossing over the statistics and jumping right into the treatment plan.
"I noticed a lack of transparency," Dr. Brand told SurvivorNet. "In a way, it was understandable, because nobody really wants to talk about [difficult survival statistics.] But in my perspective, it's really important to give patients a real sense of what their prognosis means for them."
How Likely is it That This Treatment Will Work For Me?You’re Entitled to Know, and to Understand the Answer
With treatment options, Dr. Brand said, the transparency isn't much better. When patients want to know how effective a specific option might be in treating their cancer, they're often presented with complicated terms that take scientific or statistical knowledge to decipher. Even Dr. Brand, who is a researcher who specializes in these topics, said some of the more “statistician-y” measures, such as “reduction in the risk of death,” take time for him to conceptualize.
"Statistics like 'relative risk reduction,' 'absolute risk reduction,' and 'odds ratio,' don't really answer the question patients want to know, which is usually, 'what's the probability that I will benefit from this treatment?'" Dr. Brand said.
The "gold standard" statistic for the treatment efficacy, Dr. Brand said, is "overall survival." Overall survival refers to the length of time that someone lives after starting a specific treatment. A clinical trial that tested your treatment for efficacy (how well it worked), for instance, might tell you what the "median overall survival" wasmeaning the median length of time that the patients who got that specific treatment went on to live.
Dr. Brand argued that overall survival is the most straightforward way to answer that questionthat is, "what's the likelihood that I'm going to benefit from this treatment in my cancer journey?" Unfortunately, Dr. Brand pointed out, it's not always the statistic that clinical trials report, and it's not always the statistic that doctors share with patients. Be it for logistical reasons (it takes a long time to gather overall survival results) or to make the statistics sound better (overall survival times for advanced cancer sound discouraging), you'll sometimes hear other statistics instead. Dr. Brand shared a few of them and what they mean:
- Progression-free survival, the length of time that someone lives without their cancer getting any worse
- Response rate, which refers to whether (and how much) the treatment caused cancer cancer to shrink or disappear
Importantly, Dr. Brand pointed out that the statistic, "reduction in the risk of death" is misleading, and if someone presents outcomes to you in this way, you should ask them to share the "mortality" instead.
Visualizing The Stats
In Dr. Brand's article, he suggests that some patients might prefer to see charts or visualizations of the data. If you're one of those people, and you want to have a visual image of how likely it is that a treatment will benefit you before choosing to go for it, don't be afraid to ask your doctor if he or she has a chart you can look at.
There’s No ‘Correct’ Decision
With advanced cancers and their statistics, Dr. Brand said, patients are entitled to know as muchor as littleas they want. And if a doctor tells you that there is, say, a 10 percent chance that a treatment is going to benefit you, it's up to you to decide if you want to move forward with the treatment, hoping that 10 percent will be you. "There is no 'correct' decision," Dr. Brand writes in his article. "The right decision for you depends on how you weigh the potential benefit against the demands and expected side effects of the treatment."
To make that decision, it's crucial that you have enough information to really know what that "potential benefit" actually means. If the statistics seem confusing, or aren't in a format that resonates with you, you're entitled to ask your doctor to share it in another way.
We use the term "be your own advocate" a lot here at SurvivorNet. Making sure you have the right information to make your own decisions about your treatment is a big part of that.