Not getting the information you need for your cancer journey? 70% of patients feel the same
Even from day one of the cancer journey – diagnosis – the burden of information is mind-boggling. Leaflets from your doctor, media headlines popping up on your phone, instagram influencers, and of course the mandatory remainder of the day post-diagnosis spent on google scouring every site available to understand your condition.
On the first day of your cancer journey you may already feel so inundated with conflicting cancer information that you already begin to lose hope.
You wouldn’t be alone. Up to 70% of those who have experienced cancer were dissatisfied with the information they received during their experience. (1,2) In one study by CancerCare, (3) many respondents reported not having enough information about important aspects of their cancer and treatment:
- As few as 30% received information on other treatment options which were considered.
- Only 12% to 18% felt adequately informed about clinical trial opportunities.
- Fewer than half of respondents got a second opinion about their treatment plan.
As someone with cancer looking for information, there’s a number of hurdles you might face which lead to this dissatisfaction with information.
- Information about therapies is outdated or not relevant to you. Not only because anyone can publish information on the internet, but the pure speed of change when it comes to new cancer therapies, clinical trials and experts is impossible to keep up with manually. This leads to online sites not showing the most relevant treatments or even showing treatments removed from market. In addition, most sites don’t have a filter to ensure the information reflects your exact situation.
- Clinical trial information is too complicated.Whilst many patients will hear about clinical trials from their doctor, some trials may be unknown to your doctor or unavailable at your institution. Doing your own research is valuable if participating in a clinical trial is something you’re interested in. However, information available online can be very medical and difficult to digest, leaving you unsure if the trial is right for you or not.
- Your oncologist doesn’t want to overwhelm you with information.This is a huge issue facing oncologists. As the expert, they are trained to make the decisions about what is right for you. To avoid adding more stress to your situation, they will seek to do as much of the legwork as possible. However, this may mean you don’t know what other therapies were considered for your treatment, or how they were weighed.
Too many people are experiencing these challenges and not getting the cancer information they need. But this has to change. This is why we founded the CURIA app, seeking to help you overcome these hurdles, by giving you access to up-to-date and accurate information pooled from only reliable online sources. The information is also tailored to your disease profile thanks to a questionnaire, and translated to remove medical jargon.
Persevering in your search for information is vital. As someone living with cancer, the more you understand the disease and your options, the more able you are to push for a better standard of care and work with your doctors to find the best solution for you.
- From patients to advocates.When you understand your condition and options more accurately, you are able to better advocate for themselves. This means more productive conversations with oncologists, better ability to understand decisions your doctor made and even challenge them on certain decisions.
- An unequivocal sense of control. By engaging with your health, you may be able to gain a closer feeling of control over your disease, something not easy to feel with cancer. In turn, this can also motivate you in other areas of your treatment journey, like lifestyle changes.
- A second (or third) hat in the ring. With a complex and life-threatening disease, a second opinion is always valuable. Understanding your disease better may help you to know when a second opinion is necessary. Through independently seeking out a second opinion, you will also learn more about your cancer and treatment options and ultimately find the most appropriate treatment.
Living with cancer requires you to fight for all you are worth. And doesn’t that include making sure you understand your disease, know your options, and engage with your doctor to explore each option on the table?
- Mekuria, A. B., Erku, D. A., & Belachew, S. A. (2016). Preferred information sources and needs of cancer patients on disease symptoms and management: a cross-sectional study. Patient preference and adherence, 10, 1991–1997. https://doi.org/10.2147/PPA.S116463
- Guldhav, K.V., Jepsen, R., Ytrehus, S. et al. Access to information and counselling – older cancer patients’ self-report: a cross-sectional survey. BMC Nurs 16, 18 (2017). https://doi.org/10.1186/s12912-017-0211-9
- CancerCare. (2016). 2016 CancerCare Patient Access and Engagement Report. Retrieved from https://www.cancercare.org/accessengagementreport