Goodie16's Story

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"My path to Stage IV had a few curveballs and some twists and turns...

"In April 2014, I felt a lump in my left breast. I had had shingles right above the lump a few weeks before and thought it might be some swelling or inflamed glands leftover from the shingles. I decided to have it checked my PCP. She sent me for a mammogram and breast ultrasound. The mammogram didn't show anything, even though we could feel the lump, but it did show up on the ultrasound. A breast biopsy was ordered three days later. My surgeon told me at that time that he suspected it was cancerous and would call me to confirm once he had the path report back. I was diagnosed with IDC on Good Friday, 2014.

"My surgeon immediately referred me to our cancer center and I had an appointment with my oncologist within a week. The size of the lump was within the limits for a lumpectomy, but my oncologist wanted me to have a mastectomy. While I was making that decision, he ordered a battery of tests because he believed we should know if there was cancer anywhere else before proceeding with surgery. By the end of April, I had had a PET and bone scan. I had a brain MRI done at the beginning of May and immediately received a callback. Something odd had shown up on the brain MRI, but they weren't sure what. My oncologist didn't think it was a met but was concerned that I was suffering a brain bleed. My local hospital life-flighted me to a larger, urban trauma center. Once there I was evaluated by the head of their neurosurgery department and also their neuro-oncology department. Another scan was ordered. I was diagnosed as having a cavernoma. Four different doctors, two oncologists and two neurologists, reviewed my films and agreed it was a cavernoma and that it had probably been there all of my life. A cavernoma is like an aneurysm, but on a vein instead of an artery. If they bleed, it's not castrophic, and therefore they are typically monitored with imaging and left alone. It was in my right temporal lobe.

"I had a mastectomy performed 2 weeks later. All of my nodes were clean. I was staged as IA. My oncologist ordered an oncotype test. I was a 12. No chemo nor radiation was ordered. I started on tamoxifen and began to get back to living my life.

"In February 2015, I went to work and suffered a grand mal seizure. I was life-flighted to my neurosurgeon's hospital. Through another brain MRI, it was determined that the cavernoma had bled, causing the seizure. I had a craniotomy performed three days later to remove the cavernoma. During the surgery it was discovered that the cavernoma was in fact a breast cancer met. It was less than 1 cm in size. The pathology of the met was identical to the original tumor in my breast. My oncologist and neurosurgeon speculate that it probably formed at the same time as my breast tumor and remained dormant until I began taking tamoxifen after my mastectomy. My oncologist theorizes that the tamoxifen 'shook up' the brain met, causing the bleed that led to the seizure. A month after my crainotomy, I had Gamma Knife radiation performed on the tumor bed. The high definition brain MRI at the time of the Gamma Knife revealed no other brain mets.

"My treatments since then have been hormonals only. I took tamoxifen until November 2015, but side effects caused me to stop. My oncologist started me on Lupron injections in January 2016. I will begin taking Arimidex soon.

"My last brain MRI was in March 2016, it was clear. My last PET was in September 2015. It was also no evidence of disease (NED)."

-- Goodie16, diagnosed metastatic in February 2015

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