October - Breast Health Awareness Month - Week 3

In the breast cancer world, every culture can … unfortunately … feel “special.”

·         Caucasian women have the highest incidence rate for breast cancer.

·         Compared to all other women in the U.S., Asian American women are the least likely to have ever had a mammogram.

·         Hispanic women get more aggressive breast cancers than non-Hispanic white women.

·         African American women are more likely to die of breast cancer than women in any other racial or ethnic group.

Facts like these are why there’s a national breast cancer awareness month. Usually, though, true awareness comes when someone we know puts a “face on the disease.” Sometimes those faces are even famous. This summer the world paid close attention when actress Angelina Jolie revealed she had chosen to have a preventive double mastectomy.  She chose this option after learning she carried the BRCA1 gene and had an 87% risk of breast cancer and a 50% risk of ovarian cancer. With the surgery, she wrote in the New York Times, her risk for breast cancer is now 5%.

The National Cancer Institute points out that women with mutations in the genes BRCA1 or BRCA2 are five times more likely to be diagnosed with breast cancer, but they also note that less than 1 percent of women actually have a BRCA mutation.

So that’s one face and one form of cancer. But many types of breast cancer exist. They can be non-invasive or invasive; located in the ducts or lobules. And risk factors vary with each type and within cultures.

With all this “awareness” a woman can easily be overwhelmed. However, the one thing we can assure every woman that we see – and at The Rose we are closing in on the 400,000 mark after 27 years of operation – is that they know their body best. The key is to set a baseline – know what your “normal” looks like and then pay attention when there’s a change. Here is a helpful guide for what those changes might be:

·         Lump, hard knot or thickening inside the breast or underarm area

·         Swelling, warmth, redness or darkening of the breast

·         Change in the size or shape of the breast

·         Dimpling or puckering of the skin

·         Itchy, scaly sore or rash on the nipple

·         Pulling in of your nipple or other parts of the breast

·         Nipple discharge that starts suddenly

·         New pain in one spot that does not go away

When 1 in 8 women will develop breast cancer, chances are you didn’t need Ms. Jolie’s announcement to put a face to the disease. But too many women do need someone like her to encourage them to take action. Allow me. Please, schedule your mammogram today.   

Dorothy Gibbons, Co-Founder and CEO of The Rose

 

October - Breast Health Awareness Month - Week 2

Karen was 32 when she had her first mastectomy. A year after her diagnosis, she was told she would need a mammogram on the other side. This was in the days before The Rose was open, so she went to another breast care facility.  When she arrived, she discovered the office manager had cancelled her appointment, telling her, “You're too young to have a mammogram.”  Karen immediately fired back, “Well, Lady, I'm not too young to have breast cancer!

That was 27 years ago. 

For the past decade alone at The Rose, one-fourth of the women we diagnosed have been under the age of 40 -- about 35 to 40 young daughters, wives, mothers each year.

While still a mystery as to why it’s happening, a study released this year found the incidence of advanced breast cancer in women younger than 40 years had nearly doubled over three decades. The authors are calling for further research and analysis of the numbers but maintain that the reality of increased cancer findings among the young can’t be denied.

Since The Rose has been in operation for almost all of those three decades, and since we have always maintained that women know their bodies best, we have often been the place young women who were told they were “too young for a mammogram” would turn.

As a result, we have observed that the young woman is the most medically underserved woman we see.  No matter her ethnic origin, social economic status, insured or uninsured, if a woman is under 40 years old, she will face tremendous barriers finding breast care.  And if she can’t find care, the cancer will grow at a rate that usually exceeds growth in older women.

I’ve seen numerous barriers come down – though not without a fight – in my long career in breast health.  For instance, a woman’s voice can now be heard in a doctor’s office. (The namesake of The Rose, journalist Rose Kushner, went to doctor after doctor before she was assured he would awaken her after a biopsy so she, not her husband, could make the decision on her next steps.) Regular screenings are now an accepted and recommended practice. And costs for preventive screenings are now covered – without a co-pay.

Once every one of these now accepted practices were considered unheard of. So I’m committed to the idea that change can happen. I won’t rest until the only thing that remains unheard is “I’m sorry, you’re too young for a mammogram ….”

Dorothy Gibbons, Co-Founder and CEO of The Rose

October - Breast Health Awareness Month - Week 1

Perhaps you saw or heard reports last month quoting a new breast cancer study published in the journal Cancer. The authors found that more than 70% of deaths from breast cancer in a group of more than 7,000 women occurred in individuals who did not receive regular screening mammograms.

The findings support what I have maintained since starting The Rose with Dr. Dixie Melillo back in 1986 -- breast screening saves lives.

The significance of the new study by researchers from Massachusetts General Hospital, Harvard Medical School, and other Boston institutions is that it stands in sharp contrast to the controversial 2009 U.S. Preventive Services Task Force (USPSTF) proposal to limit screening to women ages 50 to 74 years. Screening women earlier, the task force said, doesn’t save enough lives to justify the expense, worry and procedures that women go through when they get a false-positive result -- a suspicious-looking mammogram that turns out not to be cancer.

The American Cancer Society and the American College of Radiology and scores of other organizations including The Rose challenged the task force suggestions in 2009 and still maintain annual screenings for women 40 and older are recommended. This most recent study adds additional weight to our arguments.

Surgical oncologist Dr. Blake Cady and his colleagues found that among 609 confirmed breast cancer deaths, 29% were among women who had been screened with mammography, while 71% were among women who were not screened regularly. Also, the women who died of breast cancer were younger. Of all breast cancer deaths, only 13% occurred in women age 70 or older, but 50% occurred in women younger than 50.

While the numbers are critical – to ensure that plenty of data exists to pass needed legislation like the 2010 requirement that insurers pay for mammograms without charging patients any copays – what I can’t get away from are the faces. At The Rose, we don’t deal in statistics alone, we see the mothers, sisters, daughters, and friends who have often delayed a mammogram because of a lack of money or time or because they put their families’ needs before their own.

When we started The Rose, we committed to provide breast health care to any woman who came to us – regardless of income, age or any other barrier. I wish I could say that in almost 30 years we have seen radical changes. In truth, I can’t. Women still delay. So I’m thankful for every new piece of evidence that underscores the reality – screenings save lives.

-- Dorothy Gibbons, CEO & Co-Founder of The Rose

Tomball Resident Knows Meaning of “Survivor”

Lots of traits are passed down the family tree, going from one relative to the next.  For some families it’s a particular eye color. For others it’s a knack for a specific skill.

Unfortunately, for Donna Horn and her family members that shared commonality was a potentially deadly disease.

September 13, 2009 was the day when the mother of three learned her fate: she had breast cancer.

 "Mine was buried,” Horn said. “It didn’t show up until I was stage four.”

In total, seven of Horn’s loved ones have battled the disease, including her mother, three aunts, grandmother, older sister and even her daughter.

After the discovery of a lump on the right side of her lymph nodes, the Tomball resident decided to turn to The Rose for help.  The organization helped her with her care, providing further testing and facilitating a relationship with professionals at the MD Anderson Cancer Center.

Many would cower at the thought of having the invasive breast cancer but Horn did not idle in her plan for treatment. In fact, she opted for a double mastectomy without any hesitation, she said.

Horn would later undergo a grueling method of tackling the disease, including seven months of chemotherapy and seven weeks of daily radiation. 

“I knew I had options. It’s not a death sentence,” she said. “It used to be but not anymore. But the chemotherapy was the hardest. The first part of it was the worst.” 

All in all, it was her faith and support from those around her that got her through those tough times, according to Horn.

Nearly four years after her initial diagnosis, the retiree would later be informed of more life-changing news. Upon meeting with her doctor just three months ago on March 23rd, she was what he considered “free of the disease”.

Today, Horn looks back on her journey and says her experience was not an entirely negative. Having triumphed against breast cancer, she is now able to share her personal account and help others in their fight to survive.

Throughout all the ups and downs she faced, Horn says The Rose was a constant comfort.

“The Rose is a wonderful organization,” she said. “I wouldn’t be here if it wasn’t for them. They helped me through the worst part.”

 

Donna is one of the many women who The Rose celebrates for taking the time to think "Me2" and make their breast health care a priority.

 

Story by Satara Williams

Photo by Rustie Salazar of Breakaway Photography

 

Actress Opens Door for Much Needed Dialogue

Perhaps you have heard the news of actress Angelina Jolie's decision to have a preventive double mastectomy after learning she carried the BRCA1 gene and had an 87 percent risk of breast cancer and a 50 percent risk of ovarian cancer. With the surgery, she writes in the New York Times, her risk for breast cancer is now 5%.

This talented and lovely young woman's decision was a very personal one which she chose to publicly share in order to help other women. I hope her mission is accomplished. I hope that dialogues are happening across the U.S. -- and due to her humanitarian work -- maybe even around the world regarding breast cancer and choices we now have the ability to make.

However, I don't want to lose the fact that many women are still unable to make such a choice. Testing for the BRCA genes is expensive and out of the reach of many of the women served by The Rose. While the Supreme Court is set to discuss the patent issues related to the genes, many women who carry it have to settle for living with the unknown.

Knowledge helps put us all on even ground, but economic realities keep us from all having the same choices. I'm glad that information is currently being disseminated in print and across the airwaves as a result of Ms. Jolie's actions. Health care reform has addressed that preventive actions such as the breast screenings we provide at The Rose are covered. But so many women are still uninsured. So many women are still at a loss for how to access not only coverage but information.

That's why The Rose has a commitment to Patient Navigation -- where we connect women with funding and treatment options for which they are usually totally unaware. That's why The Rose has a commitment to the underserved and the uninsured. And that's why we need you. For every three insured women -- women blessed with choices -- we can cover the costs of care for one uninsured. Thank you for making The Rose's quality, breast health care possible.

-- Dorothy Gibbons, Co-Founder and CEO of The Rose

A Pink Day in the Life of The Rose ...

During the process of making origami cranes, the creators often say words of blessings. Carefully folded paper that become stars are sometimes called lucky. Such were the elements on the table for the women taking part in the monthly Pink Days at The Rose Galleria.


Brittany Burch, a therapist at Montrose Center and a breast cancer survivor who was diagnosed at 29, had discovered the calming effect of origami as she took up the art form last year. When asked if she would consider sharing an art project with the women who were waiting for diagnostic results at The Rose Galleria, she readily agreed and spent several weeks collecting various shades of pink papers, beads, and charms for the budding origami artists to utilize in making their own creations.

What she didn’t plan on was breaking her foot just days prior to her scheduled Pink Day. But the crutches only slowed her down. Nothing could quite steal her desire to introduce the healing technique.
Her good friend Fiona Dawson happened to be in town from Manhattan and as a journalist/media personality who is always intrigued by the story of a nonprofit making a difference, she was delighted to assist for a few hours of the project.

Both of the women – community leaders who have heard many stories of tragedy and triumph because of both their activism and their professions – teared at the story of another volunteer, Maria.

Maria has been assisting with Pink Days since she started the Community Health Workers certification program at Houston Community College. She was easily familiar with the practices of obtaining photo releases so that the days’ activities could be shared on Facebook. She knows where the coffee is kept and how to make the cookies look particularly pink and enticing on the plate.

What she didn’t know was how to best translate the intricate folds needed to make those cranes and stars into the Spanish that some of the participants required. So she began to practice and learn and soon had her own wall hanging and a flock of cranes. As Maria learned the craft, Fiona, who had just seen a photo of her at the Capitol in Austin with Lt. Gov. David Dewhurst urged her to tell her story so that she could capture it on video for her online website.

“We met him for a photo opportunity as part of the Breast Health Advocacy Day in Austin,” she explained. “And as soon as I could, I said something like what we had rehearsed the night before. I told him that as he considered the funds for Breast and Cervical Cancer Services in Texas, he needed to remember my face because my face was the face of breast cancer. I explained that when I got my diagnosis it was a calm and reassuring voice of a Patient Navigator at The Rose who told me I wasn’t alone and I was going to get the care I needed. As an uninsured woman I needed to hear that. When I learned I was cancer free, I quit my job of 15 years and enrolled in the CHW program at HCC. I showed him my certification card and told him, ‘I proudly carry this with me because it certifies that I can help other women like me across the state of Texas. And no woman has to go through cancer alone.’”

Brittany, who knew all too well the parts of Maria’s story related to losing hair and the pain of chemo and radiation, murmured agreement as more of Maria’s background unfolded. When Maria got to the part of how her friends had fashioned a hair piece for her for her folklorico dancing she had continued doing even during chemo and then made their own versions of the headpieces so that she would once again be in step with the group, each of the women at the table wiped a tear.

The day continued and patients came and went, each one convinced they could not do the complex maneuvering to turn sheets of paper into delicate treasures. And each one was proven happily wrong. They turned furrowed brows of focus into faces beaming at their accomplishments and more than one commented on how the time had flown.

As they strung beads and designed necklaces and wall hangings, they sometimes expressed their fears … of what the pain might mean, of going against a doctor who had told them “it was nothing.”

“I told that woman that she should listen to her body, and take care of herself,” Maria said. “I told her she was at the right place. She was at The Rose.”

Pink Days at The Rose are made possible by a grant from Pink Ribbons Project.

Feb. 11 Testimony to House Appropriations on CPRIT Funding

The following is a transcript of Dorothy Gibbons' testimony before the House Appropriations Committee as they look at the Cancer Prevention and Research Institute of Texas:

Thank you for the opportunity to testify on behalf of The Rose, a Houston based breast cancer organization.  I am Dorothy Weston Gibbons, Chief Executive Officer and co-founder of The Rose.  We are in the business of saving lives, serving over 30,000 women each year with 9,600 uninsured. Since 1986 our work has meant access to treatment for thousands of uninsured women.

In our world, the quiet ones often get lost.   While headlines are screaming about alleged improprieties within three grants, the recipients of the prevention dollars dispensed by Cancer Prevention Research Institute of Texas are easy to overlook. These are working women, often holding down two jobs yet they still earn less than the 200% poverty rate.  They juggle so many demands, that their personal health needs comes last. I see these quiet women who work long and hard and still don’t have enough for insurance or even the cash price of a mammogram.  They are used to being lost in the shuffle.

But they aren't lost or overlooked at The Rose. We hear their stories.  When I co-founded The Rose we didn’t have October breast cancer months and pink ribbons adorning everything from t-shirts to perfume.  I would like to think after 27 years, the situation might have changed for the uninsured, but it hasn’t.  Women die because of lack of money and access.

As a voice for so many, I must say that in the midst of the uncertainties, these are the things I KNOW to be certain:  

-          Because of CPRIT funds, a total of 4,345 women received care since our first award in March of 2010. (2,739 in the first cycle and 1,606 were in the 3 quarters of this year.)

-          I know that of those 124 cancers that were diagnosed, 43 were first time mammograms and more than half were diagnosed at stage 2 or below. That’s good news in the breast cancer world.

-          I know that 56 of the 124, over 45%, of those cancers were found in women who were under fifty years old.

-          I am certain that without CPRIT, not one of those women would have found care.

-          I know that those women we diagnosed came from throughout Southeast Texas:

§  88 of those diagnosed women live in Harris County

§  7 were from Brazoria County

§  8 were from Fort Bend County

§  8 from Galveston County

§  1 from Liberty, our most difficult case

§  2 from Matagorda County

§  7 from Montgomery county

§  2 from Waller County

§  1 from Wharton County 

-          I know the names of the women who did not have the money for gas or parking at the Medical Center who were able to get to their treatment because of CPRIT transportation funding.

-          I know that CPRIT made it possible for The Rose to serve to rural Texas and now our mobile vans have sites in 24 counties from Matagorda, up through Burleson, across Brazos to San Jacinto and up through San Augustine to Shelby.

-          I know that if CPRIT funds are cut, over 4,000 women in the next two years will not be served.

While CPRIT doesn’t cover treatment, it provided FIVE TIMES as many woman preventive services in that first year than BCCS did. Imagine the impact it is making. When it comes to state supported programs BCCS and CPRIT are all we have—yet it still reached only one fourth of the total uninsured women who turn to us each year. Without those funds, they would not have been served.

I share in the concern, no the outrage, that even one dollar of funding was not used appropriately.  I am thankful for the wisdom and determination in fixing what is wrong with CPRIT. 

Because I know what CPRIT has meant to the women of Texas and as the voice for so many voiceless women, I implore you:  We cannot afford a delay in prevention dollars … not when lives are at stake.

Maria*.  was only 38 years old when she first found the lump in her breasts but with no insurance she waited.  She was among the first women we diagnosed in February 2010 with CPRIT funding her mammogram and diagnostic work-up.  A single mother of three, she was alone when we told that her she had cancer and she tried everything to keep it from her family.  Her twin daughters were turning 15, their quinceanera was planned for May and she didn’t want anything to ruin their celebration.  Yet when her 17 year old son, now man of the house, inadvertently discovered what was happening, he insisted that his mother move forward with treatment.  She had the most beautiful head of hair and losing her breast was hard enough but facing her daughters big day bald headed was just too much.  First we got her into treatment through MBCCS, then we fitted her in a perfect new wig and prosthesis.  She never stopped being beautiful to her children, but she looked especially radiant that day in May.  She will share many events in the future with her children.

There are so many Marias, and Anitas and Janes waiting for service.  It is for them that I ask for your serious consideration in the continued full funding of CPRIT.

*Name changed for privacy purposes.