Tuesday, November 17, 2009

The Before Forty Initiative Needs you NOW more than ever

The Before Forty Initiative

Women are told that they should get their first mammogram at the age of forty. For the woman whose cancer is present before the age of forty, this recommendation could have deadly consequences. Young women have more aggressive cancers that grow at a rapid rate and can spread beyond the breast before they are detected. This is particularly true for African American women who have a higher rate of developing a type of breast cancer known as “triple negative.”

Triple Negative breast cancer does not respond the hormones estrogen and progesterone, and is not fueled by the HER2/nue protein. It also is a more rapidly growing disease. There are certain subtypes of TNBC that are “basal,” or “luminal A,” which are so deadly, they have the same survival rate as pancreatic cancer. These subtypes are most often found in the African American community and in women who carry the gene variant BRCA1 and BRCA2. Women of Ashkenazi heritage are carriers of this gene variant.

These cancers are very difficult to control. The only defense a woman has is by finding it before it grows and spreads. A woman does not have that chance if she waits until the age of forty to get her first mammogram. It will be too late. What could have been a rescue mission turns into a recovery mission, offering only palliative care.

This does not have to be. The founder of the No Surrender Breast Cancer Foundation was given baseline mammograms starting at the age of 35. At age 39, a triple negative tumor was found in a follow-up mammogram. An abnormality had been detected because there was a change from her earlier mammograms. Had this been her first mammogram, it would have been considered normal tissue. Because her tumor was found early, she was able to have it removed, do a six month course of chemotherapy followed by radiation, and has been free of triple negative disease for eight years.

Since the inception of the website, many women, members of the NSBCF Support Forum, have died because their tumors were found too late. One woman was Ferne Dixon. She was a young, vibrant African American woman who never had a baseline mammogram. She was told she was too young to worry about the lump she had found. When the lump was larger, she finally went for a mammogram and her triple negative cancer was found. It was too late. Even though she endured months of chemotherapy and radiation, her disease spread and took her life. She said that if she had not had the lump she would not have gone for the mammogram, even though she knew that it was recommended. She was 41 when she was diagnosed. She discovered that many African American women have a false sense of security because most breast cancer is found in Caucasian women. This statistic is true, however, most of the deadly, triple negative breast cancers are found in young, African American women and women who carry the BRCA1 gene variant.

The No Surrender Breast Cancer Foundation's Before Forty Initiative is dedicated to promoting the importance of early, baseline screening for all young women, before the age of forty. If a woman is African American or in a high risk group, we will become the leading advocate for comprehensive screening before the age of 35.

Simple mammography is often not enough. Young women have dense breasts and many doctors tell them it is too difficult to accurately read a mammogram. Young women need more than mammograms. They may need a breast ultra-sound and, if necessary, breast MRIs. This is particularly true if there is an abnormality detected. The NSBCF seeks to change the standard of care so that these types of screening techniques are not only offered, but covered by insurance.

The second phase of this standard of care is to put an end to the “Watch and Wait” practice of medicine. Most young women are told, when an abnormality is found, that they have dense breasts and they should “watch and wait” and reevaluate the lump in six months. During this time, a triple negative tumor can triple in size and spread to the lymph nodes and distant organs. Watching and waiting for cancer to become deadly must stop. Making women aware of the danger of this practice will save lives. The NSBCF is making this a major part of the Before Forty Initiative.

The Before Forty Initiative:

Increase awareness to young women about the risk of breast cancer. Inform them of the better prognosis and treatment options if their cancer is found early.

Make the age of 35 be the standard for baseline mammogram. Make the age of 30 the standard for high risk groups.

Get insurance companies to cover baseline mammograms and subsequent follow-up diagnostic tests if warranted, including ultra-sound and breast MRI.

Increase awareness for African American women about Triple Negative Breast Cancer. Educate young women that African American women are at a higher risk of TNBC and have a poorer prognosis. The only way they can beat the disease, should they get it, is if it is found early.

         • Never “Watch and Wait.” Teach women the deadly consequences of waiting for a cancer to grow in six months.

We have lost too many young women before the age of forty to let this continue any further. We seek to save lives. We will not stop until the standard of care is Before Forty.

To all readers of this blog:
Many of you are writing me and asking how you can help...
This is premeditated murder.  Women who are diagnosed BEFORE FORTY have the worst tumors... the ones that are the hardest to treat.

African American women are in that category! They are predominantly diagnosed with TNBC YOUNG- in their later years, their risk of breast cancer is much lower than Caucasian women.

You asked me what you can do to help?

Please help us.

We are trying to raise publicity for Before Forty. 

To everyone who has donated to our foundation- you have already helped get this off the ground and I thank you so much.

Look- I am like you. I am broke too. I know how hard it is donate money. But you can tell people to check out Before Forty when they ask what they can do.

Why? Because we are ALREADY DOING IT!
We need people. People all over the country talking about our initiative because we are taking it to DC to lobby the government. We are going to then attack the insurance companies. Then tell every doctor to never say, "you are too young."


We are waiting to get some money in from the grants submitted, we will then be able to support the public service announcements... which I hope will star, not doctors or actresses, but YOU- REAL WOMEN who have had breast cancer!

We really need you guys to help. Spread the word. If you know someone rich, ask them to donate so we can start putting real money behind this.


We are not going to take this sitting down- what part of No Surrender do they not understand??????

1 comment:

stacylambert said...

my cancer was found at age 38.
I would probably be dead now if I was told I had to wait until age 50 to get my mammogram, if I didn't feel the lump, which not all women do.