Medical Updates, August 2025

As we prepare for a last getaway for the summer of 2025 and prepare to go back to school for the 2025/2026 school year (will have a 5th and 7th grader this year!), I realized that I passed eight (8) years of living with Stage IV Metastatic Breast Cancer (MBC) in June and didn’t mark or celebrate it. Wow, eight years. Still marveling at that while dealing with what has been a pretty regular occurrence over the last eight years, a progression.

Back in June, right around the time that I hit eight (8) years, I had a regularly scheduled PET/CT. The results described three (3) new bone lesions, two in my skull and one in a rib, and a long list of other places showing increased metabolic activity as well as describing a perhaps worsening fracture in my pelvis as “comminuted.” Just as a refresher for anyone not looking at these results regularly, on a PET/CT, metabolic activity shows up as light and the brighter the light, the higher the Standardized Uptake Value (SUV). The metabolic activity as quantified by a number (the SUV) can indicate many things, including potential malignancy, and anything above 3 is getting serious. So when an SUV value reaches 12, that’s pretty darn active and pretty serious — thankfully it’s just my pelvis lighting up that much, the other potentially new spots are less active.

As usual, when I get a scan result that isn’t ideal, I started making the rounds to the different treating and consulting medical oncologists I’m established with and making lists of questions, potential treatments, etc. Since the tumor markers and ctDNA testing aren’t demonstrating an increased volume of circulating cancer cells, some of my providers are questioning whether the PET is truly showing progression and not flare or infection or inflammation. I do appreciate all of the providers who give so generously of their time and talents — it helps me so much to get different disparate pieces of the puzzle that is my medical treatment so that I can put it together into a picture that fits into my life.

So, after much discussion, testing and reading, I agreed to get two more treatments of Enehrtu increased to 100% (I’d previously dose reduced to 80% because of all the side effects) and a quicker repeat scan in August. I have a list of potential treatments and some consensus amongst my providers, but the repeat PET will likely help to determine the next steps. While I am hopeful for an oral option, absent a clinical trial that hits the spot just right, I’ll likely be continuing on some sort of IV therapy, which ties me to the infusion center and Orlando much more than I’d prefer.

Another test I had recently was a first for me — a transesophageal echocardiogram or TEE. This is where the ultrasound device (I call it a wand!) is fed through the mouth and down the esophagus until it is level with the heart. Many of you are aware that in March, I was diagnosed with blood clots inside my heart after a routine echocardiogram (echo), which is part of the protocol for Enhertu. We had to immediately remove my port (everyone is in agreement that the port itself likely caused the clots) and start blood thinners. I’ve been hoping to get another port asap because getting treatment in a peripheral vein is not fun in the slightest, but those clots need to be gone first. I learned that the pictures generated by the regular echos aren’t very clear since the ultrasound wand is having to “look” through all of the scar tissue from my breast surgery, so the TEE was a way to get a much closer look. The remaining clot is measuring approximately .36 x .39 cm, so I’m hopeful to be able to schedule a port surgery after my next echo in September.

The juxtaposition of terror and hope, worry and confidence, anxiety and trust … it’s all more than exhausting, draining, infuriating, etc. Doing this progression and treatment decision thing over and over doesn’t make it any easier, I just don’t spend as much time paralyzed. And I’ve been “off the map” so to speak for quite a few lines where the selection of treatments is anyone’s guess without a lot of clear guidelines. All in all, it adds up and consumes many of my limited spoons.

Thankful for my husband who tolerates all of my crazy flights of fancy, who attends as many medical appointments as possible and who consistently reminds my providers and models how to treat me as the decision-maker. The boys are learning more about medical decisions on a daily basis and keep us on our toes. My parents continue to support me as much as they can and accompany me to the appointments Elliot can’t. And all of the amazing people I’ve met before and after my MBC diagnosis, you keep me grounded and encouraged and serve as a valuable sounding board. MBC is truly the shittiest club with the best people.