Returning to My First Online Support Home

When I first joined BCO way back in 2016, I was recovering from a mastectomy during the midst of BrCa Adventure #2. (Adventure #1 occurred in 1995, a time when my primary support came from a cancer support group I started.) I remained active in BCO, through BcCa Adventure #3, which involved mets to chest wall in 2009, and through the next 10 years or so (if memory serves). I decided to take a break a couple of years ago when I became overloaded with multiple vascular and cardiac disorders and needed to expand more into cardio-vascular-world. By that point those disorders had led to difficult reactions to various hormonal BrCa therapies, which led me to adopt a "surveillance only" care approach. As I remained in NEAD territory, my oncologist would tell me that I might live the rest of my life without having breast cancer again, and I would always tell him, "I know that breast cancer is a very sneaky disease."

Fast forward to my annual breast MRI in July of this year (ultimately with good report--no sign of breast cancer in my "leftover breast"). During the breast MRI, which I typically dread because of the most uncomfortable position, I experienced sudden onset of severe pain in my thoracic spine. The pain was severe to the point that it precipitated a vasospastic angina attack at the end of the MRI. The vasospastic angina relented but the thoracic spine pain did not (it has been unrelenting ever since). Fast forward through 2 months of about 30 medical appointments, and I have an MRI that shows five small osteolytic lesions on four thoracic vertebrae (T5-T8) consistent with metastatic disease and a CT-guided biopsy that revealed "No sign of malignant infiltrate." My MO thinks that the biopsy is a false negative, my consultant RO thinks it's a false negative, and the interventional radiologist seems to think that he retrieved a good sample but that he cannot guarantee that any malignancy present was captured in that sample. Now I will have some more labs, then a meeting with my MO this Friday, followed by a PET scan next week. I've asked about a PET/CT guided biopsy, but we'll see about the PET scan first, and I've asked about a circulating tumor cell assay. My MO said she is "flabbergasted" by my situation but she does seem to be very thoughtful about what's next in terms of assessment and care planning. I realize I may eventually need a second or even third opinion (I'm not a stranger to those).

As I return home to BCO, I find myself curious about and compassionate toward current Stage IV/Mets members and also sad about so many of those precious members who have left BCO-world and our amazing planet. I feel the need to reconnect, and I plan to give as well as to receive. I still think of myself as a giver, no matter how long I was away from BCO. I'm always grateful for those who offer caring hearts, hard-earned wisdom, spirit lifting thoughts (not necessarily positive, mind you, but real, authentic) and feedback or suggestions.

Sending loving kindness to you all....