May update 🌷

May 12, 2025

Hi everyone. I write this at the end of a long – but good – day. My legs are up in my recliner and the cat is curled up. I guess he had a long day too.

Today was “treatment day.” That means a lab draw, office visit and then infusion of medications.

I had prepared for today and the real possibility of having to change my treatment. As I always say – I want to stay on each line as long as possible because there are a finite number of options.

Short version – I’m staying on my current treatment, Enhertu. I have a very good quality of life with it. It seems to be working, mostly, we think, maybe.

I get this drug every three weeks so I’m estimating that this means I’ll probably stay on Enhertu through a good portion of the summer.

If you are trying to kill time keep reading. Otherwise get outside and grab some sunshine and fresh air! ☀️

Longer version – I’ve been getting PET scans every 3 months for a little over a year. Previous to that I was getting a CT scan with contrast + nuclear bone scan. Recall I had terrible progression and they had to rebuild my upper thoracic spine in November 2023. The CT + bone scans Did. Not. Show. The. Tumors pressing on my spine!

How is this possible? Imaging is a very imperfect science and a lot of it is a matter of interpretation. And why would I get that particular combination of scans? Money. It’s the cheapest option and that is what insurance will pay for, unless something goes terribly wrong.

Queue fall of 2023. We clearly needed better imaging. The insurance company approved a PET-CT scan. PET scans provide essentially the same info as the CT + bone, but honestly they are better. Oncologists prefer them, insurance companies don’t. The PET-CT scan in December 2024 showed more uptake of the tracer in my thoracic spine. Diseased cells take up more of the tracer. These hot spots – or spots of increased uptake could mean the cancer is active and growing (progressing).

I had another PET-CT in March 2025 and it showed even a little more increased uptake in those areas – which made it seem like I was having progression, especially because my (very reliable) blood work tumor markers were steadily rising.

Now, I’ve been at this for a while – almost 6 years actually. I understand what is going on and I know what to ask for. I know that imaging doesn’t really work well for my cancer, unless it’s an MRI. I requested we do an MRI of my thoracic spine to see exactly what was going on. An MRI produces a very detailed image of every part of the internal structure of what is being scanned. My oncologist agreed and I had an MRI last week (on Sunday afternoon no less).

The results of the MRI were – unremarkable! (Love that word!) No tumors growing in my spine. Nothing of note in my thoracic spine. My lumbar spine has some bulging (L1, L2) and severe compression deformities (L3, L4) – which we already knew.

[Side bar – I have lobular breast cancer which typically doesn’t show up well on imaging because it doesn’t clump or form in a lump usually. Also, when it metastasizes it goes to unusual places like the stomach, colon, bowel, bladder and peritoneum and forms in thin sheets or strings, neither of which show up on imaging.]

Fast forward to today. My oncologist is totally comfortable with my staying on Enhertu given that the MRI didn’t show anything of concern. My CA 27-29 tumor marker is steadily rising. Historically my tumor marker has been reliable in indicating progression (rising numbers).

My oncologist considers three things when recommending changing medication:

1. Imaging results
2. How the patient feels
3. Tumor markers numbers

Clearly imaging does not do a great job at indicating progression and the MRI didn’t indicate anything alarming. I feel great (working FT, walking an hour a day, just signed up for Pilates 2x a week). My tumor markers suck.

So, stay the course it is. Is this the right decision? 🤷‍♀️ We think so.

Before I had metastatic cancer, I didn’t appreciate how complicated making decisions was. I’ve learned that science has miles to go improving imaging so that it is more reliable. New in the past few years is the use of measuring circulating tumor cells in the blood, so that may eventually be a tool in the future for oncologists to figure out what is going on and base decisions on.

I appreciate my relationship with my oncologist. Everything is a joint decision. He listens to me (said yes to my suggestion of the MRI). He keeps current on the science and research. We are looking into a possible clinical trial for when it is time to switch medications. I’m grateful that I have access to such good medical care (and currently have very good insurance that allows me such access).

So, my health world right now is good (as are things with the girls). A lot of other parts of life are challenging and stressful. I’ll continue to take things one day at a time and live life to the fullest. I hope you do too. It passes quickly and this is our only chance to seize the day!

Onward!