The Roller Coaster Ride to Living: My Bones or My Breasts?

04/10/2015 05:56 pm ET | Updated Jun 10, 2015

It's been more than a decade since my advanced stage 3C premenopausal breast cancer diagnosis in 2004. Despite never missing my annual mammography exam, dense breast tissue masked my cancer for years and, once palpable, had metastasized to 13 lymph nodes. Facing an advanced cancer diagnosis which conveys worse survivor outcomes, I was shocked and later outraged that my extremely "dense" tissue, which was not revealed to me, significantly reduced the effectiveness of my screening mammogram which is purposed to detect cancer at its earliest stage.

For decades, research has demonstrated that breast density is the strongest predictor of the failure of mammography to detect cancer which affects 40 percent of women and that adjunct screenings tests can significantly detect invasive cancer, invisible by mammogram, in women with dense breast tissue. Armed with science and my personal tragedy of cancer missed for years, I launched two nonprofit organizations, Are You Dense Inc. and Are You Dense Advocacy, Inc. to educate the public about the impact of dense breast tissue on missed, delayed and later stage cancers, ensuring that women receive notice of their dense tissue at the time of their mammography screening results.

Each decision about my numerous surgeries, chemotherapy infusions, radiation treatments and adjuvant endocrine therapy was researched thoroughly after participating in discussions with my health care team as we carefully weighed the benefits and risks of each of these remedies. I then moved forward with confidence in my treatment and recovery plan without looking back in the rear view mirror.

The breast cancer roller coaster ride to "survivorship" for more than a decade has been a bumpy trip, at times nearly tossing me from the coaster car, but thankfully the protective safety harness of my health-care team, intensive treatment, post cancer surveillance and my little white pill has kept my cancer from recurring. However, I am a realist about the deadly effects of blind spots in a rear view mirror.

After my first chemotherapy infusion, I experienced the onset of menopause which offered me candidacy for a daily aromatase inhibitor (AI). Studying the research on the significant effects of AI on reducing recurrence, I was determined to remain compliant to this medication, even with the troubling side effects, as I am worried about my cancer recurring and metastasizing. Research on AI in postmenopausal women is associated with poorer levels of compliance than chemotherapy and radiation.

Despite 10 years of no evidence of disease, I am not cured. Estrogen positive breast cancer recurs well past the five-year survival data. I am convinced, in spite of my annual screenings which nearly killed me and still can, that my AI is keeping me alive. I am faithfully compliant to this daily life-savior, even with the taxing bone pain.

My recent bone density exam revealed that I have osteoporosis in my hip. My life-long preventative management of improving bone health consists of daily physical activity, weight bearing exercises, maintaining a healthy diet and daily vitamin D3 and calcium supplements. My osteoporosis puts me at a greater risk of fractures, which can be serious, leading to chronic pain, long-term disability and even death.

So here we go again. It's time for another decision in the roller coaster ride to survivorship. Do I worry more about recurring breast cancer or a fracture from falling, as each can be fatal? Do I start bisphosphonates? Do I exchange my life-savior AI pill with a selective estrogen receptor modulator (SERM) such as tamoxifen, which improves bone density yet has its own concerning side effects? Studies conclude that AI confers significantly lower recurrence of disease compared with tamoxifen, which seals my allegiance to my AI to prevent metastatic disease.

I reviewed the latest science and standard of care for breasts and bones and made a date with my endocrinologist. I trust, after weighing the risks and benefits of options, a treatment plan will be developed. I then will proceed with confidence, avoiding even a glance in the rear view mirror, as I buckle in on the roller coaster ride to living.