February 3, 2009 — Connecticut House of Representatives, Insurance and Real Estate Committee, Hartford CT

Senator [Joseph] Crisco, Representative [Steve] Fontana and members of the Insurance and Real Estate Committee:

My name is Nancy Cappello. I reside in Woodbury, CT. Four years ago I testified about a public health issue that I call the best-kept secret. It’s about dense breast tissue and the limitations of mammograms to find cancer in women with dense breast tissue. I explained the research — that by supplementing mammograms with ultrasounds increases cancer detection from less than 48% to 97% in women with dense tissue. Unfortunately, I had to find this out after my mammogram failed to find cancer — which led to a late stage diagnosis of stage 3c. Less than forty-eight percent of women with stage 3c survive five years. When I questions my breast surgeon why my mammograms did not find the cancer (I had 11 years mammograms prior to that day), she responded that I have dense breast tissue and mammograms are limited in finding cancer in women with dense tissue. Dense tissue is white, cancer is white — thus no contrast to detect cancer.

This was the first time I was informed that I had dense breast tissue. So, I went on a search and found out that dense breast tissue @AS known n the medical community but that information was being kept from women — why? Why didn’t I know that mammograms are limited? Why didn’t my doctors tell me that ultrasounds increase cancer detection? Why didn’t I know that dense breast tissue is a risk factor — women with extremely dense breast tissue have a four to six times greater risk factor of getting breast cancer and those cancers are also more aggressive (our own 2006 CT study).

I had 18 lymph nodes removed — 13 cancer — a “normal” mammogram weeks before. I had a mastectomy, endured the side effects of chemotherapy, had radiation, hormonal therapy and six surgeries. I still suffer the side effects of treatment — neuropathy in my fingers and toes. I live each day knowing that my late stage diagnosis could have been prevented if someone (especially those I depend on — my doctors — my caregivers) told me that I have dense breast tissue.

So, four years later, we have a law that many women are unaware of — as there is no standardized practice of informing women about their breast tissue and their right to find cancer at its earliest stage.

There is an injustice when early stage cancer detection is dependent upon a woman’s zip code (which practice she goes to).  Dr. Gary Griffin, a radiologist from Torrington CT, who submitted testimony, finds an additional ten early stage cancers on women with otherwise normal mammograms with the use of ultrasound.

Last year this bill came before you and passed the insurance, public health committees and the Senate but never made it to the House for a vote. At last year’s Hearing of the Society of Radiologists spoke out against the language of the bill. I am pleased to say that Dr. Steven Cohen who represented the Society and I have agreed on language and I am submitting that language for your consideration. 

Since my diagnosis — five years today, February 3, 2004 — I have been telling women about dense breast tissue. I have spoken to numerous groups, had media coverage, developed a brochure, and launched a website (www.areyoudense.org). I am compelled to help others, as I do not want any woman to unnecessarily suffer the tragedy of a late-stage diagnosis.

This law will reach those women I cannot. In these dire economic times the CT legislature is struggling to find ways to help CT citizens without costing the state dollars. This is one way — to give women information about their health as an early detection extends lives. Your past legislative actions have saved lives and this bill will save many more. 

My heartfelt thanks.