Here is a picture of the group who is behind the bill.
This is what I posted on Facebook tonight, which includes my personal story.
I NEED YOUR HELP!!!
Even though this is long, please read my VERY personal information on how you can make a difference and literally help save lives. All women, your mothers, daughter, sisters, cousins, aunts, friends…. we all need your help.
Today I testified at the State House in front of the Health Care & Finance Committee for a hearing on a breast density bill. Before I was diagnosed with breast cancer, I had never heard of dense breast tissue & I was unaware of my risks. I don’t want any other woman to go through what I went through.
I thought I was doing everything right. But I didn’t know to ask about my breast density and it isn’t standard practice of care for radiologists to share that with women. So they don’t pass along this vital and life altering information.
House bill 1050 was drafted by Ellen Kelliher and her colleagues. Her husband Damian Musello testified today to give Ellen’s story. She had her annual mammograms and all were clear. She got her “happy-grams” after each. Ellen died on July 1st of this year from breast cancer at the age of 58. Damian testified today because Ellen is not here to share her story herself.
I am including the testimony I gave today, my story. No tears fell while I testified but I had to pause several times when I became choked up. It can still be hard to say, “I have breast cancer”, even now, close to 1 year from when I first found the lump.
PLEASE contact your state representatives and senators and URGE them to support House Bill 1050. Representative Denise Provost sponsored this bill. Please direct your representatives and senators to her office for any questions they may have.
Representative Provost’s aide, Pooja Phaltankar, advised that PERSONAL stories make the biggest impact. PLEASE use your own story or that of someone you love, or even my story. Tell your representatives and senators that this is what, you, your loved one or even me, YOUR FRIEND JULIE, went through and it isn’t right. The radiologists who are the experts with reading the mammogram should share the risks they are very aware of with the women who are trusting their LIVES to this one test.
We trust that by having a clear mammogram, we do not have cancer. That is NOT true. A clear mammogram only tells you that no cancer was seen on the mammogram. It doesn’t tell you what is NOT seen.
SO here is my personal story. Please share as little or as much as you would like with your representatives.
To find your representative or senator, please click on this link:
https://malegislature.gov/People
Thank you. On behalf of me, on behalf of the other women pushing for this bill, on behalf of Damion and Ellen, and on behalf of all the women this will impact. Thank you.
(testimony given on 9/17/13)
My name is Julie Orsillo and I am here to speak in support of House Bill 1050.
Many people do not remember the exact date Hurricane Sandy hit the northeast last year. I do. That is a day I will never be able to forget. That day, October 29th 2012, was the day I was told I had breast cancer.
At 35 years old, in May of 2011, I was sent for a baseline mammogram and ultrasound on my left breast after my gynecologist thought she felt something. My left side was fine, but the mammogram found micro-calcifications on my right. No ultrasound was done on my right breast, but due to the calcifications, they wanted to watch me for 2 years, with mammograms every 6 months to monitor me for any changes in the size or quantity of the calcifications. My next two mammograms, in December of 2011 and June of 2012 were both clear as well.
I didn't know anything about dense tissue. I was never advised anything regarding dense tissue, or risk factors. I was told that micro-calcifications could be normal.
Last Columbus Day weekend, while lying in bed, I found a lump in my right breast. That week I saw my gynecologist who sent me for another mammogram and ultrasound. That mammogram was clear, but the ultrasound was questionable. That was on October 19th; 10 days before Hurricane Sandy.
After my diagnosis, when I saw my gynecologist she kept asking, "What did I miss?" She was telling me that I had done everything right. I never missed an annual. I never missed the 6 month mammograms. I was a healthy BMI.
SHE didn't miss anything; the mammogram did.
A week after my diagnosis, I had a breast MRI. That showed additional areas as questionable.
I decided upon a bilateral mastectomy. During my surgery on January 10th of this year, it was discovered that I had 3 tumors in total and one lymph node also tested positive for cancer. Due to that, all lymph nodes were taken from that area.
I was lucky that I found the lump when I did. I had stage 2b breast cancer and grade 3- which is most aggressive. The largest of the 3 tumors was 2.5cm. Had I not found it when I did, it would have continued to grow and to spread. No signs of cancer appeared on my mammogram 10 days before my diagnosis on October 29th. My next mammogram was already scheduled for early December, less than 2 months later. It is fair to assume that cancer would not have shown up on that either. That would have allowed the cancer to continue to grow and spread for another 6 months, until I would have had another mammogram, in June of 2013.
I wish I had known I had dense breast tissue, that dense breast tissue is a risk factor for breast cancer, and that other diagnostic imaging available was 16 months prior to me finding a lump on my own when I had my baseline mammogram.
After my bilateral mastectomy in January, I have had 8 rounds of chemotherapy and 28 radiation treatments. My last day of work was on January 9th and I have been out of work on disability since. I have been dealing with neuropathy in my hands and feet as a result of chemotherapy and dealing with that has been so difficult. I have trouble walking in the morning. The weakness in my feet makes stairs difficult throughout the day and near impossible by evenings. I have had some lymphedema symptoms and swelling due to the lymph nodes being removed, which is why I need to wear a sleeve and gauntlet. If the cancer had been found earlier, it would not have spread to my lymph nodes.
This hair style isn’t a choice, it is courtesy of chemotherapy. This time last year, I had waist long, straight blonde hair that I loved. It was part of my identity. I needed to cut that off before chemotherapy started. I would not have been able to emotionally handle seeing it fall out piece by piece.
I ran the Boston Marathon in 2011. I was a running coach and taught fitness classes. I worked out 6 days a week between running, kickboxing, swimming, weight lifting and yoga.
Now I have two scars across my chest where my nipples used to be. I have lost full range of motion in my right shoulder. My hair is gone. I have gained 25 pounds with the steroids and other drugs during chemotherapy in addition to no longer having the energy to work out.
I don’t have children and with chemotherapy, I am infertile. If I ever choose to have a child, my only hope rests in 7 embryos currently frozen, which costs me close to $100 each month since insurance only covered 3 months of freezing.
If I had been aware of density issues and risks when I had my first baseline mammogram in June of 2011, 16 months prior to my diagnosis, I could have had a different surgery. I would not have had lymph nodes test positive for cancer. I may not have needed chemotherapy, or radiation. My medical insurance company would have been billed substantially less than the over $300,000 they were billed, for costs associated with my care and treatment since January 1st of this year alone.
I urge you to support House Bill 1050. This is essential for the health of women in this commonwealth. Allow women to receive information we need to make decisions for our health.
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