It was March 2012 and I was 28 years old. I was getting dressed in my hotel room (I am a healthcare consultant and spend most weeks traveling) when I felt a lump on the side of my right breast. I could swear it wasn’t there before. I immediately called my OBGYN to schedule an appointment; she was sure it was nothing – most likely a cyst – but sent me for a mammogram and ultrasound. I went to all appointments leading up to my diagnosis alone still thinking the lump was nothing and that the tests were just precautions. The doctor performing my biopsy was the first to mention the word “cancer” and to tell me that she was fairly certain that the lump I felt was malignant.
A week later, on April 2nd, I got the definitive diagnosis but after the biopsy, I already sort of knew it was coming. I was diagnosed with Stage II Invasive Ductal Carcinoma, and later found out that I also had widespread DCIS in the same breast. I met with a wonderful breast surgeon who recommended a mastectomy of the right breast; I chose to have a bilateral mastectomy and had the surgery in May, 2012. More surgeries followed–an axillary node dissection, a removal of one of the tissue expanders due to an infection, a replacement of the tissue expander, and so on. I started 8 rounds of chemotherapy in July and finished in October, 2 days before my 29thbirthday.
Through it all, not one doctor mentioned the word “metastatic”. In fact, I was repeatedly told that my chances of recurrence were “extremely low” – 2-3% was used – and to “go live my life” like nothing happened. And I did just that–I wanted to put it all behind me and was eager to finally finish my 5-year Tamoxifen regimen so that I could truly forget about the entire ordeal. I did continue to see my oncologist on a regular basis but per the existing standard of care, I had no tests or scans unless I had persistent symptoms that did not resolve within 2 weeks.
In October, 2015 I was leaving a work meeting when I felt an ache in my upper abdomen, similar to a hunger pain. Except, unlike a hunger pain, it was still there 3 days later when I went to see my primary care physician. She referred me to a gastroenterologist but after blood tests revealed elevated liver enzymes, she scheduled chest and abdomen CT scans as well. When I received a call from my oncologist asking me to come in and see her, I once again had a feeling that whatever was coming was not good.
That was the beginning of my “journey” with Stage IV metastatic breast cancer. I no longer have any evidence of cancer in my breasts and it is currently only in my liver, but it’s still referred to as breast cancer because of its origin. Surgery is not an option for me since my tumors are too numerous and radiation can be too damaging to the liver. I am currently enrolled in a clinical trial that combines chemotherapy with an experimental immunotherapy drug. It’s too early to tell whether or not it’s working but I have all my fingers – and toes – crossed for good luck.
It’s incredibly difficult to come to terms with the fact that metastatic breast cancer is not curable—it’s only manageable and even then for a finite amount of time. I’m not sure I’ve come to terms with it. The reality is, the median survival for metastatic breast cancer patients is 33 months. If I’m one of the few lucky ones, my cancer will react well to a treatment and I’ll be around for a lot longer. I will always receive some kind of treatment – chemo, pills, hormonal medications, etc. – but at least I’ll be around. If not…I’ll cross that bridge when I get there. Healthy or not, none of us really know how long we have left. Right now, I’m just immensely grateful for the love and support of my husband, my family and my friends—they make this experience infinitely more tolerable. And I try my best to remain positive and live a joyful life that is not ruled by the side effects of the treatment.