Hello family and friends -
Writing to just say that things are fine here in Colorado and in our house. My visit to the doctor earlier this month was ok and my blood work was some of the best numbers I've put up since this all started (makes me sound like an elite athlete!). My CA 27-29 tumor marker dropped to 42. (I was at 122 in July before medication started.) It's a little interesting to me because I've actually not been feeling great the past 3 weeks. This week has improved a little. I'm hoping that it's just a passing thing. We shall see. I have scans at the end of this month and then will get the results early March.
"Scanxiety" is a term used in cancerland that describes the dread, worry, and anxiety of getting the 3-month scans and results. Basically I'm living in 3 month intervals where the scans really determine if the medication is working. It's pretty taxing mentally.
If you're interested in more info about my particular breast cancer pathology there is info below. I'm also going to share under separate email an action you could take to help change some legislation that would impact individuals with stage 4 (metastatic) breast cancer. And of course, insurance coverage for pre-existing conditions is critical.
In spite of not feeling good and have scanxiety, we had a fantastic visit with family and traveled to Steamboat Springs for some winter adventure. I don't have a one photo of all of us, but as you can imagine, we had a grand time.
Much love,
Donna & Glen
Your Sunday Science Lesson....
There are different pathologies of breast cancer that are determined by the hormone receptor and some other things. It turns out I have Invasive Lobular Carcinoma. (It is also estrogen and progesterone positive (ER/PR+) and HER-2 negative.) Invasive means its moved beyond the breast. Lobular means that it originated in the lobes of the breast. Only ~10% of breast cancer is lobular, most of the cancers are ductal carcinoma (meaning it originates in the milk duct).
Why does this matter? Well, as we've all heard, women are supposed to do self-exams to check for lumps or masses. We're told that if we do this and catch it early, usually it can be treated and "cured". That works for ductal carcinoma. It does not work for lobular carcinoma. Lobular carcinoma lacks a protein in the cell that holds them together. So, lobular carcinoma tends to form in sheets or strings, rather than lumps. As you can imagine, you can't feel it physically with your hands.
My diagnosis in 2009 was both ductal and lobular carcinoma in situ (DCIS and LCIS). I had a mass that I found (DCIS) that led to more imaging which then identified some LCIS. (In situ means that it's contained in the breast.)
Lobular carcinoma can be seen on imaging but it's difficult. It's also difficult to see if the breast tissue is dense. So, ladies, if you've been told you have dense breasts be sure to get annual imaging. Even mammography doesn't always catch it so it's good to be vigilant.
A nice explanation is available here: Imaging and Lobular Breast Cancer and an academic paper (kind of old, 2009) summarizes results of a study done using different imaging technologies.