Stage I to Stage IV
In 2010 I was diagnosed with high-grade DCIS in my left breast. I was successfully treated with a lumpectomy and radiation. I did not take the tamoxifen that was suggested because of extreme hot flashes. It was felt I was cured and my life went on and the thought of breast cancer was a distant memory until nine years later.
2019, the year I almost skipped my mammogram
December of 2019 I went to my GYN for my yearly exam and mammogram. I almost didn’t go that year thinking “why am I doing this every year when everything is fine.” She felt a “thickening” in my right breast so ordered a diagnostic mammogram and ultrasound. The biopsy showed invasive lobular cancer. When I got the call I thought she said globular cancer so I looked it up. I read somewhere that lobular cancer is the second most common breast cancer that nobody has ever heard of. A genetic test showed I have a CHECK2 variant which predisposes me to breast cancer.
A rapid progression
So the next phase of breast cancer began. The lumpectomy showed I was Stage 1c, grade 3. No lymph nodes involved. My lobular was pleomorphic with signet ring cells, ER+, PR-, Her2-. My Oncotype was 30 so that indicated I needed chemo. Despite the emergence of Covid I breezed through the chemo and radiation. Started on Arimidex, my hair grew back and with a minimum of side effects moved on with life.
The pain that brought stage IV to light
At sixteen months post-surgery I reported having burning back pain to my oncologist. We attributed it to packing boxes for our move. No scans were ordered. After all, I was stage 1 and we were in the middle of moving. Three months later I was in so much pain that I ended up in the ER. A CT scan showed extensive bone mets. We were stunned. I was yelling “this is not supposed to happen. I was stage 1.” My husband was crying. The ER doctor was saying she was so sorry.
I am now eight months past that horrible day. My bone pain is mostly gone and my scans continue to improve. My bones are getting stronger thanks to Xgeva. I am on Verzenio and Faslodex. I have learned to live with stage IV breast cancer and I am at peace with whatever the future holds. I have a loving and supportive husband, strong support from friends and family, an excellent doctor, and good medical insurance. What more could I ask for? I feel I am one of the lucky ones.
Do you find it easy to advocate for yourself?