RMB is proud to support the local charity of Each One Tell One, a grassroots movement about dense breast tissue (DBT) and early detection of breast cancer. In honor of Breast Cancer Awareness Month, we will be featuring the stories of the founders of Each One Tell One™, as well as their educational materials and videos.
It was early morning, in the beginning of April, 1998. I was 41 years old.
I jolted awake, and announced to the ceiling, “I have breast cancer.” Craig, my then, fiancé (who was lying next to me, with his eyes still closed and without laughing or telling me that I was crazy) said, “Are you talking about the lump on your right breast?”
I immediately pressed my left hand over my right breast and began, what I now know to be, an SBE (Self Breast Examination) and there it was; a small hard lump on the outside of my right breast.
I was “freaked,” to say the least. I then asked Craig why he didn’t tell me about this. He became embarrassed and then a little irritated (and, rightly so). He said, “It’s your breast. Don’t you check yourself on a regular basis?” All I could say was, “No, I don’t.” But from that moment on I knew, instinctively, that I had breast cancer.
My journey began. I immediately went to my OBGYN. He examined me and said that based on my having lumpy fibrocystic breasts and several cysts removed this also had to be a cyst. He then reminded me that six months earlier I had my first mammogram with negative results. He told me that I was under stress because I was getting married soon and not to worry. And besides, he said since I was 41 and too young to have breast cancer. I left his office thinking that my sister was 51 when she had breast cancer so I had ten more years to worry about it. I moved on. At least I tried.
By June, I was married but, the “cyst,” was still there and seemed to be getting bigger. The nagging thought that I had breast cancer was still with me. I was now covered under my husband’s insurance so I sought a second opinion and met with a new OBGYN who examined me and sent me for another mammogram. Six weeks later, I received my second “Happy Gram” letter saying that my results were negative and to come back next year. Ok, but…..
By September, the lump was still there and in my mind, bigger. A dear friend, recommended that I see a breast surgeon for yet, another opinion. He had to know more, right? Breasts are what he works on all day. The surgeon looked at my mammogram, did a CBE (Clinical Breast Examination) and read my reports. He supported what the other two doctors were telling me; the lump is a cyst. He said, “Nothing showed up on either mammogram. And besides, you are too young to have breast cancer.”
Well, there you have it. They were the doctors with the experience. They should know. So, I put the issue behind me….for a minute. The nagging thought that I had breast cancer kept coming back. I could not stop thinking about my sister who was diagnosed with breast cancer at 51 and had a double mastectomy. Why could I not let go and why was no one else worried about this lump that seemed to be getting bigger? I persevered because I knew that something was terribly wrong.
Finally, in December, I made an appointment with Dr. Kevin Kelly, Radiologist and head of the breast imaging department at The Hill Breast Center in Pasadena, CA. I took my mammograms and reports, with me. Again, I thought that he had to know more. All he did all day, was look at mammogram images. I thought that maybe he could see something in my mammograms that the others missed.
I told him my entire story. He listened and before he did an examination he told me, “I learned a long time ago to trust the instincts of a woman.” He then examined me, felt the lump and said that since it had been six months since my last mammogram he wanted me to have another one. But this time, he told me to stay put because we would look at them together.
A little later he came into the room and shoved the films on the light board and showed me my mammogram images. He told me, “You could hide a Mack truck in there.” What? “You have extremely dense-breast tissue (DBT). That means that your tissue shows up white on the mammogram. Mammography uses radiation to see through your breast tissue and it just can’t see well through dense tissue. It’s like looking for a snowball in a snow storm.” Further, he said, “I know something is there because I can feel it. I just can’t see it.”
Dr. Kelly then told me that, “Mammography is not enough of an examination for your tissue type. You also need to have an ultrasound examination. It’s completely safe and pain-free. There is no breast compression, no radiation and no injections of any contrast agent. Ultrasound uses sound waves and it’s about as harmful as yelling, “Hey!” at your breasts.”
I had the ultrasound examination. Dr. Kelly clearly saw the lump and told me that it needed to be biopsied. And you know what? The ultrasound revealed a 1.7cm invasive ductal carcinoma (that was later confirmed by the pathologist and it was the size of a walnut); a fast growing cancer just getting ready to spread into my lymph nodes.
Upon hearing this news, the heavy foreboding feeling that I had carried around with me since April, lifted. Why, because I had clarity. Thankfully, detecting this cancer relatively early, spared me from what my sister has gone through; a double mastectomy. I had a lumpectomy, a less surgical procedure. However, I kept wondering how big my cancer would have been back in April; would I have had to go through eight rounds of chemo, 30 days of radiation and be thrown into menopause which took away any possibility of having children and all in my second year of marriage? The answer is, probably not.
In 2003, Dr. Kelly asked if I would participate in a multi-center peer-reviewed clinical trial using his new invention of the technology called, SonoCiné (meaning sound in motion) Automated Whole Breast Ultrasound (AWBUS). Whole, meaning both breasts and all breast tissue. This includes the underarm, clavicle, sides of the breasts and between the breasts by the sternum. He said that the study would be done on dense-breasted women. The purpose of the study was to test his theory; that by adding an automated whole breast ultrasound examination to the mammogram, more and smaller cancers would be detected than by mammography alone. I told him that this would be the least I could do since I know he saved my life! So, I became one of his 4419 patients.
As time passed, his study was published in 2009. The findings included that there was a 100% increase in detection of breast cancers in dense-breasted women when an automated whole breast ultrasound examination (AWBUS) was added, as an additional examination, to the mammogram. And with each of my yearly visits to have my mammogram and SonoCiné AWBUS examination, it became more apparent to me that Dr. Kelly was changing the standard of breast health care in a profound way. I realized that I needed to do my part in facilitating this change.
It took me seven years of asking, two published clinical trials and clearance by the FDA on the SonoCiné AWBUS™ technology but I was finally hired in 2010. I had no medical sales experience but I had the desire and passion and personal dense-breast cancer experience. I left a very lucrative advertising sales career and have not looked back. I am right where I am supposed to be, the Director of Women’s Health Advocacy for SonoCiné, Inc.
I now travel the country speaking with doctors and giving presentations to any group who will listen. I personally, teach what has been a hidden truth. That as clinical studies have demonstrated, for women with DBT, an ultrasound examination, when added to a screening mammogram, will find more cancers than the mammogram alone. I don’t want, what happened to me to happen to any other dense-breasted woman.
Together, with Wendy Damonte and Heather Reimer our mission is to educate women about their breast density, what to do about it and share this information with others. We are part of a nation-wide drive to change the standard of breast care for women with DBT.
Do YOU know if you have dense breast tissue? If you don’t, then get a move on and call your doctor. It’s right there on your report.
On behalf of me and my sister, both dense-breasted cancer survivors, I ask you to become informed and educate your friends and your family, about the importance of knowing their breast density and what to do about it. Who knows, you could be saving the life of someone very near and dear to you. The choice to speak out is yours. I hope that my story has have given you the motivation to do just that.