With my personal story, after my annual in May of 2011, my doctor thought she felt something in my left breast and requested an ultrasound of it. The following month I had my first baseline mammogram as well as the ultrasound of my left breast.
Nothing was found on my left side, but the mammogram did find microcalcifications on my right breast. Because of that, I was told I needed to have mammograms every six months for two years to monitor the microcalcifications. The next mammogram was December of 2011, then another in June of 2012. All 3 mammograms were clear other than the microcalcifications which showed no changes on those mammograms.
Columbus Day weekend of 2012, I found a lump. On October 19th I had another mammogram. Again, no change. The same day an ultrasound was finally done on my right breast. That did show something, and the following week the biopsy was done. Ten days after my clear mammogram, on October 29th, I received the call telling me the biopsy tested positive for cancer.
How could a mammogram just 10 days earlier NOT show anything? I was doing everything right! I was doing what I was supposed to do, never missing an appointment or anything God's sake! How was this possible?
I have dense breast tissue and that can hide cancer from mammograms. That's how it is possible.
But why, if doctors and radiologists know this, did no one every request an ultrasound on my right breast until AFTER I found a lump?
What would have happened if, back in June of 2011, an ultrasound was done on BOTH of my breasts and not just on my left? Would have stage 2b breast cancer? Would I have had 3 tumors in my right breast? Would it have moved to my lymph nodes, requiring all lymph nodes on my right side to be removed, leaving me at risk for lymphadema for my entire life? Would I have needed to have chemotherapy after surgery? Would I have needed to deal with losing my hair? Would I be told after I finish 4 months of chemo, I need to have 28 radiation treatments? Would this be my life?
WHY? WHY DIDN'T ANYONE TELL ME THAT DENSE BREAST TISSUE PUT ME AT A GREATER RISK FOR BREAST CANCER?????
I was doing everything right! How does this happen? I didn't know what having dense tissue meant. I didn't know I was at a greater risk. I didn't know that if I had an ultrasound, I would have a better chance of discovering cancer early. I didn't even know to ask.
Instead, I was the good girl, never missing a mammogram appointment, scheduling my next 6 month appointment before I left.
When I left my mammogram in June, I made my appointment for December. It was wonderful calling to cancel that. She asked if I wanted to schedule. I told her I was already diagnosed with breast cancer so there really wasn't a need to have another mammogram now. I was already scheduled for a bilateral mastectomy.
It makes me SO angry. I really thought I was doing everything right! How can this be? And what about all the other women who are out there who have dense breast tissue just like me? Who don't know? That is just SO wrong!!
On http://areyoudense.org/, under "Our Stories", Sheila wrote " My mammography report, which stated "normal', arrived the day after the tragic news of my cancer - my cancer concealed within my dense tissue."
She got the report saying "Normal" AFTER they told her she had cancer? And just like me, she also had stage 2b cancer. Kind of gives you the opposite of that warm and fuzzy feeling doesn't it?
That's what I want! I want people to be scared! I want women to be outraged! I am! I AM PISSED OFF! This is just wrong. So wrong.
When I first read all of this the other night, I emailed Rep. Jason Lewis (I have been a registered voter since I first turned 18 and never changed the location of my registration. He is a representative of that same district where I grew up.) I shared my personal story with Rep. Lewis, told him I would love to speak with him and urged him to assist me in changing legislation in Massachusetts so other women will not have to go through the experiences I went through.
At the same time, I messaged Nancy Capello, the president and founder of Are You Dense, again, sharing my personal story and asking what it was I could do in Massachusetts for change to be made.
Nancy responded that bills were introduced in Massachusetts. Versions had gone through both the house and senate and both were currently in committee.
The house version has been referred to the committee of Health Care Financing. And that bill is:
http://www.malegislature.gov/Bills/188/House/H1050
The senate version has been referred to the committee of Public Health and is:
I also received a wonderful email back from Laura Richter, legislative aide to Rep. Lewis. In her email, Laura stated in part:
Rep Lewis would be happy to meet with you to learn more about the issues around dense breast tissue and cancer detection, and what we might be able to do here in the Legislature to ensure that other women have the appropriate tests to check for cancer. He would be happy to come to your home if that is something with which you would be comfortable. Alternatively, he is happy to speak with you on the phone to learn more. Please let us know what you would prefer, and please let us know which days would be best so we can accommodate your treatment schedule.
My mother is a breast cancer survivor (she has been in remission for 17 years this month), and I am grateful to women like you (and her) who speak up and speak out to increase awareness and save lives.
We look forward to learning more, and to speaking with you about how we can make a difference for women across Massachusetts.
I am planning on meeting Rep. Lewis next week for his local office hours to discuss this issue.
But the best part of this, which I am most excited about, is what committees Rep. Lewis is part of. Rep. Lewis on the Joint Committee on Health Care Financing and is the Vice Chair on the Joint Committee on Public Health, the 2 committees where these bills were referred. Lucky me! I found the RIGHT person.
In my emails since with Nancy Capello, she has shared even more information that is just mind blowing. And I do not understand why it is an issue for women to be informed about dense breast tissue and the risks. IT WOULD SAVE LIVES! It just does not make sense to me.
Here is some information that Nancy sent to me on a PDF fact sheet.
Five facts about dense breast tissue
1. 40% of women have dense breast tissue.
2. Breast density is one of the strongest predictors of the failure of mammography to detect cancer.
3. Mammography misses every other cancer in dense breasts.
4. Breast density is a well-established predictor of breast cancer risk.
5. Breast density is a greater risk factor than having two first degree relatives with breast cancer.
The vast majority of women are unaware of the density of their breasts.
- 95% of women do not know their breast density.
- Less than one in 10 learn about their dense breast tissue from their doctors.
What? Are you kidding me?
And people oppose changes in legislation to inform women about these risks? How can that be? How is that even possible?
Nancy also shared some addition information with me, an article written by "Dr. Stacey Vitiello, who is currently on staff at the Montclair Breast Center. Stacey Vitiello is a breast imaging specialist. She trained at Georgetown, the Robert Wood Johnson Medical School, and Yale, and is certified by the American Board of Radiology."
The article reads, in part:
A "normal mammogram" report does not mean that a woman does not have breast cancer. Overall, mammograms will pick up 80 to 90 percent of cancers. That's pretty good, but there are still 10 to 20 percent of cancers that will not be seen, and will present as an "interval cancer" with a palpable lump, as in the example above.
The cancer detection rate plummets in women with dense breasts to only 40 to 50 percent of cancers picked up on a mammogram. That's about the odds of a coin toss. This is ineffective screening by anyone's standards.
What is that first line?
A "normal mammogram" report does not mean that a woman does not have breast cancer.
I'm sure I will be writing a lot more about this in the future.
I knew that I needed to be involved in something regarding breast cancer, but I wasn't sure what I wanted to do or which organization I wanted to become involved in. There are so many wonderful organizations out there that provide incredible support and assistance, which which one would be right for me? Which one would I feel passionately about and feel like my contributions could make a difference.
As soon as I read the information on http://areyoudense.org/ I knew I found what I was looking for. Until rights for women's health change, until laws are changed to better protect women and allow vital information to be shared, this is where my passion will be focused. I found my focus now. I know this is something I NEED to do.
Please help me with this. Even as simply asking your doctor about your own breast density. If you do have dense breast tissue, PLEASE insist upon ultrasounds in addition to mammograms. Do you trust your life on a coin toss?
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