In April of 2014, my kid sister Tania went to the hospital complaining of pain in her breast.
Her record shows that she described symptoms typically considered red flags for a tumor. She felt a hard mass in her left breast weeks before making this appointment. She claims the coloration had changed from pink to brown over that time. It was painful, both resting and to the touch. Given her explanation and the examination which followed, Tania should have been immediately sent for a diagnostic MRI or bilateral mammogram.
But Tania was not sent for either. Instead, she was told the changes were simply fibrocystic and consistent with perimenopause. Hospital records show that the doctor spent a full twenty minutes reassuring Tania that she was fine. That it was not a tumor.
This doctor was wrong.
Dead. Fucking. Wrong.
Tania didn’t like going to doctors. She was more of a naturopathic person. A yogi. A kind gentle soul. But something had really scared her. Something had frightened her enough to seek medical help, which definitely meant she was nervous. Unfortunately, she went to this appointment by herself. She never told me, nor let onto the rest of the family.
I only discovered this tragic information while going through her medical records, months after her death.
Fast forward a year later to April of 2015, only one year after complaining to her doctor of breast pain; Tania was diagnosed with metastatic breast cancer. To no surprise, her cancer had advanced to Stage IV. The die had been cast.
Tania died on September 11th, 2017. Exactly one year ago. Today.
For some reason, Tania chose not to share details of her initial appointment with us. It may have had to do with not wanting to be judged for having embraced eastern medicine over allopathic western treatments for much of her life. It may have been too much of a burden for her to openly talk about. Tania was the type of person to say: “I’m going to fight this disease, I’m going to beat it, and I’m going to look forward, not backward.” So we never talked about it.
I don’t know that it would have helped Tania for us to know she had been misdiagnosed originally. Ideally, she would have sought a second opinion, but Tania didn’t have an ability to easily share her health data. Who does? Even if there had been a solution to help her collect and share her records with another doctor, I don’t know that she would have done it. Nor do I know if it would have made any difference in the outcome of her treatment. But I’m still guilt-ridden by this miss on my part.
By sharing Tania’s story and now working to help future patients easily share their data, could a second opinion make a difference for someone else? That’s what I’m hoping for now.
While Tania was private with her personal health, she was all about connection and collaboration in her social life. She lived (oh, how she lived) to connect with people, be it the bank teller while cashing a check, or the bagger helping her at the grocery store. Communication was a way to bring the universe closer to her. Connecting helped put her world into perspective.
Tania was joyful. That was a word she used a lot. She was also engaged. She always wanted to talk things through with people. If you were having a problem, she would sit you down to discuss it, share with you her experiences, and get you to the other side of it.
Tania was a seeker. She was constantly looking for meaning in life. What am I supposed to leave as my legacy? How am I going to matter? She asked herself these questions all the time. Ultimately, I think that’s why Tania asked me to share her complete health information with the world as part of Ciitizen. If her data could potentially help save someone else, she wanted to have this impact. To leave her mark.
As painful as it is for me to think about what could have been, today-on the anniversary of her death-I’m taking a page from Tania’s book: I’m going to look forward. Tania is the inspiration for Ciitizen and its mission. As such, she is now the first patient to have shared her data as part of today’s private beta launch. In a tribute to her and her wishes, all patients who sign up with Ciitizen will have access to her profile.
Tania’s health data wasn’t able to save her life, but it may have meaning for others. Maybe it will help researchers in search of a cure, or empower patients like her to take action against their fears. Early. And emboldened.
No matter the outcome, Tania’s story-and her legacy by extension-will represent an awakening for our industry. If you make it easy for people to collaborate and communicate through their data, they will do it.
And when the world’s 7+ billion Ciitizens can easily share their data, we can do more. Together.
Originally published at https://blog.ciitizen.com on September 11, 2018.