Hi! Thanks for joining me on this journey. Many of you have supported me directly or have reached out with love during this time, and it means the world to me.
I am writing here for a few reasons:
- To keep friends and family updated on my treatment, status, and progress. I have received so much love and support since my diagnosis and there are too many people to update! I'm hoping this will keep everyone in the loop.
- To document the journey for myself. I've never been a big journal person, though I'm always jealous of those who are. But I know I'll want a record of this for myself, so I'm going to try to write as much as I can here.
- To share what I'm learning. I recognize that I came into this journey with a unique set of skills that equipped me to approach it differently from the start, and the standard of care for cancer in the United States is an unmitigated mess. I hope that by sharing my story and my choices, others can learn that they have choices, and can get better care if they ever find themselves in this situation.
Here is how it all started...
Sometime in October of 2024 I felt a lump in my right breast. It was very small and I have "fibrous" breasts, aka lumpy boobs, so I wasn't sure if it was anything to be concerned about. I kept track of it, and tried to remember to schedule an appointment with my midwife for my annual exam.
I felt some anxiety about it, but kept telling myself not to freak out until there was something to freak out about.
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I finally got in to see my midwife on November 12th. I was hoping she would say it was nothing to be concerned about...but she didn't. That was when I felt the first pang of real fear. She was amazing and supportive, but when she told me I would need to go in for an ultrasound I knew this was serious.
It took a full month to get in for the ultrasound!
The St. Lukes hospital system just didn't call me to schedule! It was incredibly frustrating and nerve-wracking. I called several times and finally my midwife's office called and "yelled at them" (their words) and they called me to schedule. They weren't backed up at all and got me right in. ๐
On December 12th I had the ultrasound and the doctor told me there was a medium to high chance it was cancer. I felt like he wouldn't say that without some fairly high confidence that it was cancer, but I was still trying (mostly unsuccessfully at this point) to stay calm.
I had the biopsy on Wednesday, December 18th, and was scheduled for the results phone call on Monday the 23rd. But the results came into my patient portal before that. I found out on Friday the 20th that I officially had breast cancer.
I was devastated, but not surprised at that point. I felt like I was more and more sure it was cancer as the tests went on, so this one was just the final confirmation.
One thing I was extremely grateful for was that my midwife called me on Friday when the results came in. She just wanted to make sure I wasn't alone with the news, and to let me know that she was on my team. It was so encouraging and just the beginning of so much love and care I was to receive on this journey.
Choices I made and things I learned at this stage |
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1) I chose not to have titanium clips inserted during the biopsy. They leave those clips in to help guide surgery and future imaging but I didn't want that metal in my body.
When I pressed the issue, it turned out that if they need the marker for surgery they can insert it just prior, so I felt good not having them implanted.
2) Fibrous breast tissue not only makes it harder to screen for breast cancer, it makes you more likely to develop it. But there are actions you can take if you are in this group.
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With love and gratitude,
Elizabeth
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