CONTACT JOAN CONTACT JOAN

Lisa Frost

Hello Joan. I had missed some of your today show interviews and just watched them now. I saw that your cancer was missed on your mammogram as was mine. I know that you are triple negative and my cancer is completely different. It is amazing just how different they all are isn't it? You learn all this craziness after diagnosis. I am a registered nurse and I wasn't aware of just how many different breast cancers there are. Preaching to be your own advocate just couldn't be more important. I am a nurse and my husband is a doctor and we still didn't receive the best care. I truly believe that with dense breast tissue ultrasounds/MRIs should be the standard of care. I believe that this is now the standard in NY state, but not in many places across the country. If it were the standard then my cancer would have been found much earlier and possibly prevented me from going through much of what I had to endure.

Here is my story... My mother had DCIS, her mother died of breast cancer, 2 of my mother's sisters had breast cancer. All of them were post menopausal when diagnosed so that wasn't considered a "strong family history". I started getting yearly mammograms at 35 years old and was always told that I had dense breast tissue. I never had a lump. My breasts were fibrocystic and always felt lumpy to me. My husband was a general surgeon that removed cancerous breasts. If I ever had a question about something in my breast he would check them for me. I had yearly Gyn breast exams as well and a lump was never found. The interesting thing is, I sometimes needed an ultrasound on my right breast as they were always looking at a spot on my right breast (a vessel they always said). If they had only looked at my left breast as well I believe that my cancer would have been found at a much earlier stage. I was diagnosed with stage 3C lobular breast cancer which doesn't present as a lump but as a density. If you have dense breasts....well you are pretty much out of luck. I was Estrogen/Progesterone positive and HER2 low, but 24 out of 30 lymph nodes removed were positive. Although my cancer wasn't aggressive it was huge (7cm) but had stayed put and my oncologist believed it was growing for years. YEARS!!! Mammograms had never detected anything. I had 20 weeks of chemotherapy, a year of Herceptin, 7 weeks of radiation, 7 surgeries and reconstruction that failed on the left side probably due to excessive radiation tissue damage.

The funniest part of the story I believe is that the day I was diagnosed, I believe that it was only caught because of the mammogram technician. I was just getting my yearly screening and she asked if I had any concerns. I told her not really, that my breasts were always lumpy to me. The 10 seconds that she had her hand on my breast she could feel a " mass" and told me so. I was so shocked! I felt my breasts every single day. I was a nurse, my husband a breast surgeon, my gyn always gave me thorough breast exams HOW???? how could this be that this technician could feel a mass in my breast so quickly? She told me that in good conscience she couldn't let me leave without having a diagnostic mammogram. I called my physician and they faxed an order over. From there I went to ultrasound and the rest is history.

2 things that I have learned (well so many really) you absolutely HAVE to be your own advocate and if you have dense breast tissue mammograms are NOT enough. Ultrasounds as well SHOULD be the standard. While this may be more expensive initially, I am guessing it is a lot more cost effective than the over $200,000 it has cost me so far on fighting my invasive cancer.

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