So I made a thing…
Here’s the context. Somewhere in the middle of this “survivorship journey” (already a sidenote- can we find a new term for this? I am over the word “journey”) I found myself in a frustrated state. I wanted to be feeling better, but wasn’t- and that was physically, emotionally, and spiritually.
My breast cancer care team is awesome. And/but they each have their specialty and focus area. And I do my research and follow all the experts. Still, there was no single place where I could see how one decision impacted others in a different medical discipline. And there are a number of models out there for “hormone positive, HER2-“ cancer (ER+/PR+/HER2-) but not much for triple positive breast cancer (ER+/PR+/HER2+). Taking endocrine therapy/aromatase inhibitors (to block estrogen) lowers my odds of recurrence, but we know it impacts my heart and bone. But how much? And what are the risks in relation to each other? And how do I weigh these questions?
So I built a tool. I have called it the Survivorship Decision Helper, and it has helped me as a triple positive breast cancer survivor. I can get a sense of my risks all in one place, and play with different choices based upon my personal risk tolerance in different areas. It pulls from actual published research (and yes, I cite it).
Now the fine print. I am not a doctor. I'm a breast cancer survivor who isn’t content with status quo or the commonly heard, “that is normal for a survivor.” There is so much out of your control when you have cancer, and it’s good and healthy to embrace when that is the case! But it’s also empowering and helpful to know the levers you CAN pull to make the most of your life. If I have learned anything from the last two years, it’s that I want to truly live and find joy every day in this life. And survivorship can make that hard. But I remembered that I know myself best, I know what I need, and I started to see a picture of it in my head over the last few weeks.
So this is something I am working on. I know if I have these kinds of dilemmas (or conundrums, per my previous post)- other triple positive breast cancer survivors do too. I plan to use it to ask important questions when I meet with my doctor, and to verify or challenge certain instincts I may have. It has also helped me realize that I will need to continue to make the best decision for now- to take the next best step.
If you try this out- a few important things to note. I'm a survivor, not a doctor, and this tool is meant to help you prepare for and have better conversations with your care team, not to replace them, and it should never be used to change your treatment on your own. The numbers it shows are directional estimates drawn from many studies, meant to help you see which way a choice moves things and roughly how much (these are not precise predictions about you or me, specifically).
To use it, open the link, read and acknowledge the intro screen, and then start adjusting the options on the left (if you are on a desktop) and watching the results update. Try toggling one thing at a time and notice the tradeoffs or pros/cons. You can then bring whatever questions it raises to your oncologist or other specialists. And if you're navigating this weird and wild survivorship world too, I'd genuinely love your help making this tool better: tell me what feels missing, unclear, or wrong, and we can keep building this- for us- together.
See, this is the kind of joy we want in our survivorship. Laughter and Saturday mornings with dear friends. (Photo credit to Kendra)