Cancer is simply unlike any other illness in its ability to affect humans. No matter people’s geographic location, race, class, or background, cancer remains one of the most deadly diseases. In fact, the disease kills more than eight million worldwide every year and is responsible for one out of every six deaths globally. With other diseases, there is usually a clear course of action. However, with cancer, everything is different. Every cancer patient’s journey is as unique as the person who suffers from the disease. At the end of the day, it’s the responsibility of the patient, their family or caregivers, to find the best information available out there, in order to make the most well-informed decisions regarding their treatment – a lesson I learned the hard way.
My mother died from lung cancer. She was diagnosed at stage four. With standard care, this diagnosis does not leave patients with many options but to follow protocols that are primarily aimed at improving quality of life and managing pain. So we went through the “right” courses of action, but as previously said, cancer manifests differently in each patient. At the end of the day, there is no exact right course of action, there’s only trying to figure out and apply the best treatment to combat the disease based on past success stories. In my mother’s case, once all her prescribed treatment options proved ineffective, I decided to take managing her treatment into my hands.
My first step was to establish a small army; enlisting my two sisters in the fight against mother’s cancer. We began collecting data, distributed tasks to one another, settings goals, and creating timelines. We started communicating constantly through instant messaging apps, shared medical documents through cloud services, created schedules and set up a daily call with each other. We worked as a team.
Eventually we decided to do a genetic test in a specialized lab. That’s how we found out about a rare cancer mutation that my mom had, after researching more about it, we were led to an experimental drug that could have possibly extended her life by almost five years, far more than the half a year she had been given in her initial diagnosis. However, by the time we found this out, it was too late. The drug is far less effective when used in the third line of therapy after some of the chemotherapy drugs my mother had already taken – yet we didn’t know this. Yes, the very thing that could’ve helped my mother was as simple as having the right piece of information at the right time. Had we known about the mutation and found the drug earlier, we could have given it to her earlier, and in doing so, we could’ve bought her additional time to live with what could have been an improved quality of life. The drug was still somewhat effective in my mother’s case, it extended her life an extra half year only. So in a way – we beat the statistics, but we could have done much more if we had just had the information earlier.
A few months after my mom passed, I met someone on social media searching for information on a different type of cancer. This time it was a brain tumor that her six year old niece had, but with the same cancer mutation my mom had. I told the young girl’s aunt everything I knew about this mutation, about all clinical trials out there, about the different experimental treatments that I knew of, and of course, I told her about the experimental drug. With this information, the woman’s six-year-old niece, who’d been unconscious for months, regained consciousness as a result of the treatment, and was able to go back to school. The right drug had given the girl another year and a half of life.
When we need to drive somewhere and we want to be sure we are going the best way, we use our navigation apps, and when we’re at work and managing large projects, we use software tools, reminders, and task lists. After the situation with my mom and also the young girl, I started wondering how come there is nothing out there that can help us manage the most important task we can come across in life – saving it?
That was the moment when an idea hit me that would change my life forever. My colleagues and I are all entrepreneurs. We’d founded several successful startup companies, and all dealt with Big Data – large quantities of information that with smart technologies that we developed, could be turned into valuable and useable insights for business. While we had improved countless businesses’ performances over the years, I suddenly thought, why not instead take all our data analytics experience, and apply it towards improving people’s lives, rather than just bottom lines?
Fast forward to today, where my career is building a platform to help other cancer patients by taking all the lessons I learned in my family’s fight against cancer. Here are key takeaways that I believe every cancer patient and their families should know:
Always doubt what you are being told. There are multiple answers out there for every question. Are you buying the first car you see? The first house you look at? Probably not. So why “buy” the first treatment option that is on the table. Always check for alternatives.
Understand the opportunity cost of your treatment – Find out if one treatment option will close off other alternatives. In our case, my mother’s chemotherapy blocked other treatment options we were not aware of
Run genetic testing on your biopsy sample when diagnosed! You could be eligible for new experimental drugs from day one. Don’t wait until your condition worsens to take these tests, as it may be too late by that point
Make sure the biopsy sample is big enough. It could be valuable later on in testing new therapeutic options
MRI/CT errors are very common! Insist on getting a second opinion in every critical decision point
Manage your cancer fight as if it were a project. This means establishing goals, benchmarks and creating a treatment “team.” Your family are your first members and you will find other experts and doctors to “join” your support team in the fight
Use technologies. They can save you time. Time is the one resource you don’t have enough of when it comes to cancer.
Will all this help? Maybe, maybe not. But the most proven way to increase your chances of survival, and be on the right side of the statistics is to effectively, and informatively, manage your treatment journey. No one else will do it for you, nor should they. This is your life and quite possibly only you can help save it.