Advocacy Fuels Breast Cancer Advances

When Dr. John Huff was in medical school in the 1970s there were two wards he liked the least: the burn ward and the breast cancer ward. It’s not hard to imagine why the patients suffering from extreme burns were so upsetting, but thanks to today’s current awareness, Huff’s experience with breast cancer patients back then is truly a thing of the past.

“It was the smell, because of how many women had large tumors that had ulcerated through their skin — it was just incredible,” Huff says of his memories of that time. “I couldn’t believe how this could possibly be. Women would let it go and let it go until there was nothing that could be done for it.”

The reason so many women suffered so needlessly and to such an extreme back then was because no one was talking about breast cancer out of embarrassment and fear, says Huff, who is Imaging Director of the Vanderbilt Breast Clinic, Chief of the Section of Breast Imaging and Medical Director of Breast Imaging Services.

But things began to change after Betty Ford had a mastectomy in 1974. Much like she did with addiction and alcoholism later on, she raised awareness about breast cancer by simply talking about it.

“She did a remarkable thing and went public at a time when women would hide it with shame,” Huff says. “She said there was nothing to be ashamed of, no one had done anything morally reprehensible that this comes from. And that really got people’s attention. It made Happy Rockefeller examine her breasts, and she found her breast cancer. Happy and Betty became a dual force that totally revolutionized the way the public and women thought of breast cancer.”

It was just the beginning of a wave of advocacy among women ready to take charge of their own health care. They began to lobby for standards in breast cancer screening and treatment, which led to legislation for the FDA’s Mammography Quality Standards Act and more.

“It was a result of that grassroots work those two incredibly heroic women did, and that women in this country through advocacy for themselves took on and took to their legislature,” Huff says.

Increase in targeted therapies

Decades later and women not only are talking about breast cancer, but also surviving and thriving.

“Diagnosis of breast cancer long ago stopped being an automatic death sentence,” says Dr. Carlos Arteaga, director of the Breast Cancer Program and the Center for Cancer Targeted Therapies at Vanderbilt-Ingram Cancer Center. “The majority of Stage 1 and 2 breast cancers in this country are curable — the overwhelming majority.”

One reason is the increase in targeted therapies that address the many different subtypes of breast cancer. Each patient is different, their diagnosis is different, and their therapy is tailored to them and their type of cancer.

This means more research and planning on the front end, and the time it takes can be almost unbearable for the newly diagnosed — especially women who are used to taking care of things quickly.

Lucile Houseworth, chief administrative officer for Habitat for Humanity of Greater Nashville, had no family history or health issues, so she was shocked when cancer was found during her annual mammogram this summer. But she was ready to fight hard and fast.

“I am a get-it-done kind of person, so I had my mind set to figure out what it is and what needs to be done and remove it,” says Houseworth, 57. “But the process is slow. Now that I am through it, the reason the process is slow is because there are so many variations. Depending upon exactly what your personal situation is, it guides them in terms of the treatment. They don’t want to just get going on it, because they might do the wrong thing.”

Arteaga agrees that the process of patient analysis can be extensive, but it’s necessary.

“Patients should be seen by a team up front because the treatment is going to incorporate surgery, plus or minus radiation, plus or minus plastic surgery, plus or minus systemic therapy like hormones or chemo,” Arteaga says. “It is an exciting part about cancer therapy, how it is increasingly multi-disciplinary from the get-go. The best outcome of the patient is going to be one that relies on a multi-specialty consultation up front.”

Though difficult, Houseworth was glad so much planning when into her care.

“It feels kind of long but you just have to get it in your head that they are doing it to get the right answers,” she says. “In my particular case, they thought they were going to be able to do a lumpectomy, but when they got the results of the MRI it was a larger mass than they had originally thought, so they thought a mastectomy was the thing to do.”

Houseworth had a mastectomy on Aug.11, followed by reconstructive surgery on Aug. 18. She has an upcoming follow-up for her reconstruction and can anticipate regular checkups every six months instead of annually. She returned to work at the end of September but was sure not to push herself too hard, too fast.

And her cancer diagnosis encouraged her older sister to get a follow-up on a questionable mammogram, too — no cancer was found — and Houseworth hopes to encourage more women to get screened themselves.

“I am a very private person, but when people keep things to themselves, you think you are the only one dealing with it,” she says. “But everyone has a story and no one is going around talking about that.”

Screening key to diagnosis

Laura Mac Jeffers was 45 when she was diagnosed with Stage 2-3 breast cancer in February 2013. She had never had a mammogram, but after feeling something in the shower she decided it was time to schedule her first screening.

“By the end of 2013, I had four surgeries between a lumpectomy, mastectomy, reconstruction, and then I had my ovaries out because some of the anti-estrogen drugs were starting to create problems,” she says.

Jeffers was treated at the Cancer Treatment Center in Atlanta and is now cancer free. She gets a follow-up mammogram every six months now but admits she’s still nervous about a recurrence.

“Every time something goes wrong with your body — you get a head cold or your foot hurts — you are always on guard,” she admits. “I am more aware of things since I found my cancer.”

The American Cancer Society recommends annual mammograms for average-risk women starting at age 40, but in 2009, the U.S. Preventative Services Task Force said routine screening of average-risk women should only be from ages 50-74, and only every other year. It didn’t go over well.

“We immediately passed a law in congress that we should ignore the USPSTF 2009 guidelines when it comes to the U.S. Department of Health’s recommendations,” Huff says. “If we were to follow their recommendations, we would defund screening for every woman under the age of 50.

And they just did it again in the spring and a bipartisan group is now introducing legislation to say the USPSTF recommendations for 2015 are also to be ignored.”

Dense breast tissue in spotlight

Breast density has become a hot topic lately as more and more women are becoming aware of what their status is and how it affects their risk for breast cancer. Breast density notification laws have been put into effect in 24 states, including Tennessee in 2014, which ensures physicians notify women who have undergone mammography if they have dense breast tissue.

Dense breast tissue makes it harder to identify cancer on a mammogram and bumps average-risk women into a group with intermediate risk. Women in the high-risk group have had previous personal experience with breast cancer, have extensive family history or have tested positive for the BRCA1 gene mutation.

“Dense breast tissue lands you into the intermediate group, and the big question is, what do we do about that group?” Huff asks.

Supplemental screening of dense breasts is necessary to get a more accurate reading, and one of the newest screening tools is 3D mammography. But it is fairly new and not readily available. Ultrasound is one option, but it also does not always catch everything. MRIs are accurate, but expensive, and third-party payers only cover high-risk women.

Andrea Shoemake opened Proactive Wellness & Imaging Center in 2010, offering breast thermography as an additional screening method for breast cancer. Around since the 1950s, thermography is FDA approved and uses an ultra-sensitive, high-resolution thermal imaging camera and software to measure heat on the surface of the skin.

Shoemake says diseased tissue will always be warmer than healthy tissue, and the differences show up on the scan. And it is non-invasive with no radiation or painful breast compression — an important factor for women with large breasts, small breasts or even expensive implants.

“We are not trying to replace a mammogram, but a mammogram might not be effective for women with fibrocystic or dense breast tissue,” Shoemake says. “Not every screening tool is effective for everyone. This is just another piece of information for women.”

Breast cancer statistics

In 2015, it is estimated that among U.S. women there will be:

• 40,290 female breast cancer deaths

• 440 male breast cancer deaths

• 231,840 new cases of invasive breast cancer, including new cases of primary breast cancer among survivors. This number does not include recurrence of original breast cancer among survivors.

• 60,290 new cases of in situ breast cancer, including ductal carcinoma in situ (DCIS) and lobular carcinoma in situ (LCIS). Of those, about 83 percent will be DCIS. DCIS is a non-invasive breast cancer and LCIS is a condition that increases the risk of invasive breast cancer.

•2,350 new cases of male breast cancer, including new cases of primary breast cancer among survivors. This number does not include recurrence of original breast cancer among survivors.

SOURCE: SUSAN G. KOMEN

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