I was diagnosed with ductal carcinoma in situ (DCIS, or stage 0) breast cancer in June of 2012. This followed four biopsies of suspicious breast tissue, which found that the spots of DCIS were widespread. I underwent a double mastectomy later that year and breast reconstruction in early 2013. My doctors, including a second opinion from Dana Farber in Boston, advised against radiation and tamoxifen. In fact, I was told by the doctor I saw at Dana Farber that I was essentially cured and “stage 0 isn’t even real cancer,” a statement that both angered and unnerved me at the time.
During the summer of 2015 I developed terrible back pain that the urgent care clinic twice diagnosed as strained muscles. I was moving around like a 95 year old woman and the pain was worsening, not improving, so in November I finally scheduled an appointment to get it checked out by an orthopedist. Several weeks prior to that appointment while I was sitting at my desk working, I discovered a hard lymph node above my left collar bone. I was sure it was nothing and had planned on having it checked out at my next six-month post-breast cancer tune up, but my husband urged me to see my primary care provider and get it looked at sooner. That doctor’s obvious concern upon feeling my neck brought me down to reality quickly. One CT scan and an agonizing weekend wait later, he called to tell me that my cancer had metastasized and was not just in my lymph nodes but throughout my spine.
I started chemotherapy and immunotherapy on 12/10/15 and began radiation therapy on my spine shortly thereafter. The radiation quickly resolved the back pain, and I could move again. In January of 2016 an MRI revealed metastases to my brain. Since that time I have undergone three separate Gamma Knife procedures, or stereotactic radiation, to treat multiple cancerous spots in my brain. I also had a laser ablation in March of 2017 on one spot in brain to reduce swelling from radiation necrosis, and a craniotomy in 2018. There was some suspicion that I may have leptomeningeal metastases, but lumbar punctures in July of 2017 and December of 2019 have ruled that out for now.
From December of 2015 to May of 2017, I was on two immunotherapy treatments – Herceptin and Perjeta – that I received via infusion every three weeks. These two drugs helped to keep my cancer in check from the neck down quite well, but my brain metastases have continued to be an ongoing issue. In May 2017 my doctor switched me to two oral chemotherapies – Xeloda and Tykerb – in an effort to better manage my brain disease. The side effects proved to be too tough on my quality of life so we have switched back to Herceptin and Perjeta every three weeks.
In the meantime, my Yale neurology/oncology team continues to keep a close eye on my brain. In 2018 I underwent another brain gamma knife procedure and a craniotomy to treat further brain metastases and radiation necrosis. By September I had a new immunotherapy treatment – Avastin – that I get every three weeks in addition to the Herceptin and Perjeta.
I would be remiss if I did not mention that it is uncommon for a stage 0 cancer to metastasize (should any Googling patients out there be panic-stricken by my story). Because stage 0, or ductal carcinoma in situ, is confined to the inside of the breast ducts, it is the most treatable form of the disease and has a very low mortality rate. However, I’ve learned the hard way that it is not as rare (or impossible) for stage 0 to later metastasize as I had once been led to believe, and I’ve met other stage 0 to IV patients since being diagnosed myself. The bottom line is to educate yourself, ask plenty of questions of your health care providers, and if something doesn’t feel or sound right do your homework and speak up.
Diagnosis & Treatment – The Cliff Notes Version
Original Dx: 6/13/2012, DCIS multiple spots on left breast, ER+/PR+
Surgery: 9/18/2012 Double Mastectomy
Current DX: 11/13/2015, Stage IV metastasized to lymph nodes, bone, adrenal gland, brain; HER2+
Radiation: 10 sessions to spine and three Gamma Knife (SRS) procedures to brain. Whole brain radiation.
Laser Ablation: 1 treatment to reduce brain swelling from radiation necrosis (March 2017).
Craniotomy: 1 metastatic lesion with radiation necrosis removed (May, 2018)
Chemotherapy: Taxotere (ended 3/28/16); Xeloda & Tykerb (May 2017 to July 2017).
Targeted Therapy: Perjeta, Herceptin (ended 5/15/17; restarted 7/14/17 to present). Avastin (September 2018 to December 2018).