How do you track and communicate treatment side effects?
Hi ladies! ❤️
I'd love to hear from my fellow breast cancer survivors.
I was diagnosed in December 2019 with Stage 1 ER+,Her2+ breast cancer. I had a bilateral mastectomy, chemo, Herceptin, and Tamoxifen for 6 years.
During my own treatment, I became very aware of how difficult it can be to track, understand, communicate, and deal with symptoms and side effects. There were times when I brought things up to my oncology team and felt like they were dismissed because they weren't considered a typical side effect—or were attributed to anxiety.
It was incredibly frustrating!!
I've recently been talking with other survivors about their experiences, and I'm hearing so many different ways women try to keep track—journals, phone notes, spreadsheets, or simply trying to remember everything between appointments.
Do you keep track of your symptoms or side effects during or after treatment?
If you do, what do you use—a notebook, phone notes, spreadsheet, an app, or something else?
And does what you're using help you:
• Recognize patterns over time?
• Understand whether something might be related to treatment?
• Remember everything you want to discuss at appointments?
• Communicate your experience clearly to your healthcare team?
If you don't track your symptoms, I'd love to hear about that too. Was it too much to keep up with, or did you simply not feel the need?
I'm really interested in hearing what has worked for you and what hasn't. ❤️
Comments
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I'm trialing an app called Guava (the free version) right now, specifically to monitor pain and fatigue severity... as well as sleep, caffeine, and prn medication use. It's supposed to help you uncover patterns; you can ask if there is a relationship between sleep data linked from my wearable and brain fog, for example. My next onc appointment is in a few weeks and I'm still in the data collection phase, but it's been easy to use so far. Great topic!
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