No One Knows Your Body Better than You…

Stacy’s Story…

We accidentally discovered a lump in my right breast during a chest CT in the ER (I was having trouble breathing and they thought I might have a blood clot) on March 18, 2022.  My PCP ordered a diagnostic mammogram that took 5 weeks to get scheduled.  After the mammogram, they took me for an ultrasound and told me they needed to do a breast biopsy as soon as possible. A week later, I got my diagnosis on May 3, 2022.  I’m ER/PR+, HER2-.  Originally, I was Stage I with Intermediate Grade Invasive Ductal Carcinoma.  My oncotype score was 22, but they did the test on the presumption that my lymph nodes were negative.  However, during my lumpectomy, they found 2 nodes has mets.  When I met with Dr. Taylor, my medical oncologist, he recommended I undergo the ACT chemo regimen.  At this point in time, I had not been offered a PET scan so I requested one.  Dr. Taylor informed me my insurance wouldn’t authorize one since there was no evidence the cancer had spread beyond the 2 lymph nodes so he ordered a repeat chest CT.  The chest CT was inconclusive but showed some lung nodules, so a PET scan was ordered.  The nodules were mildly reactive, so a lung biopsy was the next step.  The biopsy confirmed the cancer had spread to my lungs and I was re-staged at Stage IV.  Dr. Taylor immediately started me on oral chemo, Xeloda, and was very supportive when I told him I had an appointment with an oncologist at MD Anderson in Houston.  While at MDA, Dr. Pohlmann and her team repeated all my scans and performed new biopsies but came to the same conclusion as Dr. Taylor.  When I returned for a follow-up with Dr. Taylor, I told him I wanted to visit with my OB regarding removing my ovaries since I was premenopausal.  During that surgery, both ovaries were put into the same bag.  However, only 1 made it to pathology.  My OB didn’t see anything suspicious but we all would have liked to have that confirmation on paper.  Once my ovaries were out, Dr. Taylor switched my regimen to Ibrance (Palbociclib) and Letrozole.  Due to the Ibrance, Dr. Pohlmann recommended I have an EKG every 2 weeks for 3 times.  I have finished all 3, but EKG #2 was lost and the results were never recorded.  We are continuing treatment with the assumption my heart is handling the meds.  Our goal is to be on this regimen for years to come, but we will repeat the PET scan every 3 months to make sure the tumors are stabilized or shrinking.  I write my story to remind every reader that no one knows your body better than you.  If you don’t advocate for yourself, no one else will.  Fight for what you want!  Being Stage IV isn’t a death sentence.  Yes, it takes some time to come to terms with being told you’re no longer curable, but it also forces you to look at life differently.  I’m no longer wishing I would have done or said something.  I’m living life to the fullest!