Health insurance shirks its duty to women with breast cancer complications

Karen Chavez

When I wear sleeveless tops, there isn’t a day when I’m not asked about my lymphedema garments. These are a full-length sleeve and a fingerless glove on my left arm. “Do you golf?” “Are you a bowler?” “What’s wrong with your arm?” and even, “Cool sleeve, where did you get it?” Um, the Asheville Orthopedic Appliance Co.

I wear the garments, not as a fashion statement, not to bowl, but to control the non-stop pain and swelling in my left arm and hand, known as lymphedema. Over the past three years of wearing the garments, I now use the questions as a teaching moment. Lymphedema is a chronic disease that results in a backup of lymph fluid (which carries away the waste from the blood stream). It occurs when the lymphatic system is damaged, said Emily Jones, an occupational therapist at CarePartners. In my case, the damage was caused by breast cancer surgery and the removal of lymph nodes from under my arm. There is no cure for lymphedema.

Once you have it, you have it forever. An estimated 3 million-5 million people Americans suffer from lymphedema. Two out of five breast cancer patients will develop lymphedema within five years of surgery. With lymphedema, I cannot type. I wouldn’t be able to write this story, which is my livelihood. But there is treatment. The two most effective are manual lymphatic drainage, performed by a physical therapist specializing in lymphedema, and compression garments. The garments require a doctor’s prescription and are custom made. They are about $328 for one sleeve and one glove. I need two at a time, $656 – one to wear while the other is being washed. (They are tight to the skin, get sweaty and dirty and need to be changed daily, kind of like underwear). I need new pairs twice a year because they stretch out, get damaged and then are no longer effective. That’s about $1,312 a year. It is cost prohibitive. My former health insurance paid for them.

My new insurance company – Blue Cross Blue Shield of Texas – does not cover compression garments. When I told the BCBS customer service person that I have breast cancer and cannot function without them and can’t afford them, on top of my ever-growing mountain of breast cancer-related debt, she said “those are the rules.’’ Well, North Carolina has its own rules. Actually, it has a law. Passed by the General Assembly in 2009, HB 535 states that every health benefit plan in the state must provide coverage for the diagnosis, evaluation, and treatment of lymphedema, including benefits for equipment, supplies, complex decongestive therapy, and gradient compression garments. North Carolina and Virginia and the only two states in the country with such laws. Bravo.

I told the BCBS rep about that and that the N.C. law should cover me. She said it did not, since the company is based in Texas. Sound barbaric? Heather Ferguson thought so. A mom of two from Charlotte, one of her sons was born with primary lymphedema in both legs. He was prescribed his first compression garment at age 7 months. Ferguson’s insurance denied it. Not a woman to be messed with, Ferguson reached out to her state representative, Tricia Cotham, D-Mecklenburg. Cotham helped Ferguson with the appeal, which only gave her one year of payment. Now 10, he needs to wear the knee-high socks every day. He will need them for life. Ferguson continued to work with state representatives until the lymphedema law passed.

She formed the Lymphedema Advocacy Group. Now she has taken her cause to Congress. Introduced in 2010, the Lymphedema Treatment Act would amend a section of the Social Security act to provide for Medicare coverage for lymphedema compression items. That would extend to all states, even Texas. The bill has 249 House co-sponsors, including Rep. Mark Meadows, R-Jackson, and 28 senators, including Thom Tillis. Sen. Richard Burr has not signed on. “It already has a large amount of bipartisan support,” Ferguson told me. “It’s a win-win for everyone. It improves patient care and quality of life, and provides a net saving to Medicare. We’re paying for so many things that can be prevented if we manage the disease from the start.” Even with my sleeve and glove, I often have to raise my arm to further control the swelling. Then people ask, “Do you have a question?” Yes. Why won’t my health insurance pay for my lymphedema sleeves?

No Cure Yet for Breast Cancer, but 3 Big Advances in 2016

In the U.S., one in eight women will be diagnosed with breast cancer in her lifetime. I became one of those eight women a decade ago and endured the go-to treatment at the time for breast cancer -- chemotherapy, surgery, radiation, with ensuing hair loss and constant nausea. But there's great news for all women. That toxic regimen may be headed out the door, because breast cancer treatment is rapidly moving to a more personalized and targeted paradigm that could save millions of lives and drastically change the quality of life of patients. Here are three dramatic advances that are leading to more effective treatments, as well as brand new ways to think about what causes the deadly disease. 

Targeted combo therapy completely obliterates signs of cancer

The biggest advance of 2016 in breast cancer has to be how a combination of targeted cancer drugs completely obliterated all signs of breast cancer in 11% of patients in only 11 days.

The UK-based study involved 257 women with particularly virulent type of breast cancer (HER2-positive), and combined two drugs from GlaxoSmithKline (NYSE:GSK) and Roche Holdings (NASDAQOTH:RHHBY). While 11% may not seem that impressive, for even one breast cancer tumor to be completely eradicated by a drug in less than two weeks is electrifying. Cancer tumors develop resistance to chemotherapy agents so rapidly, these drugs often have no impact on a tumor even after many months of treatment. Instead, tumors are removed surgically first. Chemotherapy comes afterwards -- to mop up stray cancer cells that might have spread elsewhere in the body.

In the past few years, a small minority of women have been having chemotherapy first. While that regimen sometimes shrinks the size of tumors, typically the order is reversed because the oncologist is more concerned about where the cancer could be going rather than the primary tumor. But Glaxo and Roche's drugs -- Herceptin and Tykerb -- are not infused chemotherapies, but simple oral pills. In addition, these drugs are highly targeted treatments, and attack cancer cells specifically. That's a huge plus because patients do not have to deal with the severe side effects of chemotherapy, which kills all rapidly dividing cells in the body like hair follicles and healthy bone marrow cells. Better yet, there is a large arsenal of these new therapies already on the market, including monoclonal antibodies like Herceptin and Tykerb, checkpoint products such as PD-1, and other treatments that unleash the power of the patient's immune system.

As was seen in the Glaxo/Roche drug trial, pairing these drugs together in a one-two punch is raising the success level of treatment and may eventually point the way to a cure.

93 genes causing breast cancer identified

This May, UK-based researchers at Cambridge Research Institute, unpacked the whole picture of what genetic events could be causing breast cancer. Thanks to their efforts, we should soon have a much better idea why the disease strikes certain individuals. Specifically, the scientists found 93 genes whose mutations convert a normal breast cell into a cancer cell. Professor Mike Straton, who led the study, said the list "would be handed over to the universities, the pharmaceuticals, the biotech companies to start developing new drugs."

It's hard to overstate how big this win is. The more we know about the genetics of cancer, the more we will know about what treatments will work for an individual women, paving the way to much higher survival rates.

Blood test could replace mammograms

Another huge breakthrough this year brought us much closer to a blood test for breast cancer. Specifically, researchers in France and Australiareported that a change in the isotopic proportions of carbon-13 and nitrogen-15 can reveal the presence of the disease. With this new way of detecting breast cancer, the project's lead researcher Professor Guillaume Tcherkez said we could have a simple blood test in a few years. That's terrific news for women, because mammograms, the best method currently available, are inaccurate 16% of the time. The resulting misdiagnosis includes highly stressful false positives, where the screening incorrectly shows breast cancer, and potentially fatal false negatives, where the mammogram fails to detect cancer. An innovative breast cancer blood test is already being developed in France, while here in the U.S. gene sequencing powerhouse Illumina (NASDAQ:ILMN) is working on all-in-one liquid cancer biopsy that can detect virtually any cancer. Illumina has said an early version of that test should be on the market in three years. If that goal is achieved, many forms of cancer will be found earlier, when it tends to be treatable, which should massively decrease the world's cancer mortality. 

How to take advantage of cancer breakthroughs

Anyone at risk of breast cancer -- which includes all women, and although much more rarely, all men -- strongly benefits from being informed about breast cancer breakthroughs. The disease strikes without warning, and with the flood of new treatments reaching the market, many doctors have never prescribed some of them and may be hesitant, or even uniformed, about their possible benefits. In fact, taking charge of your own health is the best way to beat this disease. That doesn't mean you should ignore your doctors' advice, but that you should diligently practice ways to prevent cancer such as eating a healthy diet and exercise, make sure you get necessary screenings, ask questions if you are diagnosed, and seek a second opinion if you are not satisfied with the answers.

While survival rates have doubled over the past 20 years, a women still dies from breast cancer every 12 minutes in the United States. So never forget, this disease presents a serious threat to your life and no one cares about your life more than you do. But there's no reason to end on a somber note, because research is now showing how powerfully our own bodies can be mobilized to fight it. That's not only improving the odds for survival; it's also bringing us closer to the day when we can finally claim a cure.

Hello From the Other Side of Breast Cancer: 8 Tips From Survivors

According to the American Cancer Society, breast cancer rates among African American women are on the rise. This is a shift from previous data that showed that African American women got breast cancer less than white women, but due to many factors including later diagnosis, and more aggressive types they tended to have a higher mortality rate. The good news is that there are more black women who are surviving and thriving after the disease.

Here are a few tips from several survivors.

1. Don't blame yourself The notion of breast cancer prevention is complicated. A woman's overall risks can include family history, environmental factors, stress and diet. In fact, while race doesn't necessarily contribute to a black woman's chances of having cancer, research shows that it can contribute to the types and aggressiveness of the disease. Be vigilant about screening, so that you and your provider can take action in the earliest stages.

2. Don't let your hair get in the way of your life Many black women struggle with the idea of losing their hair during treatment. Janet Bennett, 67, was diagnosed in 2011. Bennett says her hair has never defined her, "so when I had to undergo chemotherapy and lose my hair and radiation, I didn't care." Bennett adds that she has opted to continue to shave her head, long after treatment.

3. Get a plan "When I heard the diagnosis, my mind went to scary images of images of women who had cancer, says Celeste Julian, a teacher who lives in Katy, Texas, outside of Houston. Julian, 61, was diagnosed in 2012. "I've always had fibrous breasts, starting in the eighth grade," she says. Julian had gone through several surgeries, to see if any of the growths were cancerous and they were always negative. " I had a mammogram this time and they found cancerous." While the diagnosis is scary, Julian says take time to do your homework and absorb the information. "It is important to take a little time to pause and process. "A lump, even if it is the size of a pea isn't going to turn into one the size of a sweet potato in a day, "Julian says. Cheryl Ward-Benjamin, 55, was 53 years old when she was diagnosed with inflammatory breast cancer, stage 3. She says, "There is a recommended treatment plan for Inflammatory Breast Cancer which is referred to as neoadjuvant treatment, which begins with chemotherapy to arrest the growth, then surgery, followed by radiation." Benjamin went through 16 rounds of chemo - the first four treatments were biweekly, followed by 12 treatments weekly. "I had a double mastectomy, with the second breast being elective and the other breast was a radical mastectomy. The final step was 40 rounds of chemotherapy Monday - Friday until completed," Ward Benjamin says. "I was determined that I was going to be an active participant, ask questions, and do some reading regarding what to expect."

4. Attitude makes all the difference "Attitude is everything," says Candice Bell, 60, who was diagnosed in 2005. "If you believe you will beat this thing, you will." Risë Ratney agrees. Ratney underwent a lumpectomy and 30 rounds of radiation, And because she, like many black women had estrogen receptive breast cancer, she also had a hysterectomy. "Take a minute to absorb the shock, be scared and feel sorry for yourself," she says. She believes in the mind body connection in getting through tough health challenges. "Once your treatment plan is established, you have to believe you can get through it," she says. But it isn't always easy. Julian says she was really challenged to stay positive after she had her first surgery to excise her tumor. "I ended up having a second surgery within 30 days of the first, because they didn't get it all out the first time. I went through depression, but that made it worse." Julian says that she learned to just stop and breathe to refocus in order to get her attitude back on track. Bennett says she focused on getting well versus the treatment. "Don't get so wrapped up in it. Put on your big girl panties and do what you need to do," she adds. She had a lumpectomy and an additional surgery to clean up the margins of her cancer before she underwent four months of chemotherapy and radiation. She was fortunate to be able to work a reduced schedule while she was undergoing treatment. She also says she did everything to keep it light. "Being around other people, enjoying my pets, and watching television and reading things that made me laugh helped."

5. Be informed Be your own advocate and do your homework. "When I got my diagnosis I was so terrified that I could not research any options," says Ratney. "I wasn't given any other option so I just followed the plan outlined by my oncologist and surgeon." This is the case for many women, who hear the word "cancer" and have to make life or death decisions on how to treat it. And Ratney says if she had been given all the options she would have explored removing only the lead lymph nodes, versus removing several, that she says later caused chronic issues such as swelling and extreme stiffness.

6. Understand your health coverage Many women assume that they have "good" insurance through their jobs, without understanding what will actually be covered and what won't. Medical expenses that are not covered are a reason that people are forced to file bankruptcy. Bell had insurance through her job that covered most of her treatment and care, but had out of pocket medical expenses such as prescriptions — including one that was $1,500 and wasn't covered. Bell was able to go to her doctor for a less expensive option and got it. But Julian says that even though she had insurance, having the second surgery so soon created a pile of mounting medical expenses that she's still paying for.

7. Let people help you "Lean on the shoulders that are offered to you," says Ratney. She adds that it's important to find someone in your circle of friends and family to act as your healthcare advocate, willing to help you speak with the providers and think through any issues. "Team Benjamin" was formed very quickly after Ward-Benjamin's diagnosis and friends and family helped her piece together her options, providing resources and support. She agrees with Ratney about enlisting a health advocate. "I had particular family and friends who were always present for my sessions or key appointments to be my additional eyes and ears, or make sure I remained comfortable — physically and mentally."

8. Keep your eyes on the prize Bell, who lost her own mother to breast cancer several years before her own diagnosis, knows how precious life is. She retired from her job after over 30 years, and spends time traveling with family, including her two young granddaughters. And she is now getting trained to be a community health worker to help give back. Julian says that she too is focused family including her husband, and three children. "One is my fifteen year old daughter that I want to see graduate from high school." After she finished treatment Bennett went back to working full time. But there were mergers at her job when she got back. "I didn't need that kind of stress, so I left." She loves her life now because she says she is "able to do many of the things I hadn't been able to do before." Ward-Benjamin says that her perspective on what is truly important has changed her life and she now manages her stress and is more patient with people. "When I wake up in the morning it is a new day, with new opportunities and blessings," she says. "Each one of us has our own journey, symptoms, range of side effects - but we share a common strength which we are fighting to win."

NFL pink gear sales usually do not benefit any breast cancer-affiliated causes

For the eighth straight October, the National Football League has gone pink. Players wear pink gloves, cleats, hats and towels. Referees blow pink whistles. The league drops a pink ribbon beneath its shield on game-used footballs. All these displays are part of the league's partnership with the American Cancer Society to raise money and consciousness during breast cancer awareness month. On many high school athletic fields, players also are going pink, incorporating the colored gear into uniforms and sideline gear and apparel. Retailers have responded by pushing the pink gear front and center on store floor space and websites. But don't judge the purchase by its color: Aside from specifically licensed merchandise bearing the NFL pink ribbon shield logo, pink gear sales usually do not benefit any breast cancer-affiliated causes.

That means much of what is worn at the youth level is a fashion statement more than a philanthropic effort - whether athletes and their parents know it or not. Student-athletes and their families make most of these pink purchases on their own, coaches and parents said, usually in anticipation of a designated "pink-out" game. It's an informal but enthusiastic effort, they said, because student-athletes think they are being charitable. Players will purchase a pink towel or athletic tape ahead of a game, and if they cannot, teammates will help them improvise to present a unified look. "At the high school level, I don't think there's an awareness of it," said Bill Park, whose son plays football at a school in Fairfax County, Virginia. "It's certainly not at the forefront of what they talk about." While many apparel companies and retailers make donations that benefit cancer-fighting and awareness groups, such contributions are not tied directly to sales of the pink merchandise, a surprise to some athletes. Running back Joshua Breece of Stone Bridge High School wears a pink Nike camouflage sleeve and pink socks during October football games.

His Ashburn, Virginia, school held an in-school fundraiser for breast cancer research organizations the final week of September, and he and his teammates figured some of their purchases for their "pink out" game against West Springfield in West Springfield, Virginia, would go to a good cause. "I'm glad they do give some money," Breece said of manufacturers, "but I really thought it was a percentage that goes to it. That's what I was led to believe from other people." The NFL began its "Crucial Catch" program in October 2009 in partnership with the American Cancer Society. Used pink equipment is auctioned off after games, and the proceeds are donated.

Fans also can purchase pink licensed NFL gear, and the league's proceeds from those sales also go to the ACS. The league has raised almost $15 million, according to ACS chief development and marketing officer Sharon Byers. The "Crucial Catch" program and the society's "Making Strides" fundraising walks are the society's leading sources of revenue for breast cancer. And the attention garnered from the pink equipment showing up on TV every Sunday for a month is near impossible to value, she said. So is the impact of the awareness spread through other levels of football. Within a week of the NFL's first pink game in 2009, Anna Isaacson, the league's senior vice president of social responsibility, saw the look gaining traction. She was driving past a high school football game in Cleveland on a Friday night and saw the bleachers full of pink-clad fans.

Cheerleaders waved pink pom-poms on the sidelines. Players had colored their cleats in pink and wore pink tape. Isaacson pulled up to the school and started taking pictures. She said it's one of her proudest moments working for the NFL. Sporting goods manufacturers and retailers have filled the demand for pink gear, though the charitable benefits of such purchases vary.

 Dick's Sporting Goods promises free shipping for 18 categories of "Show Your Support" pink merchandise, but only one category - items bearing the NFL logo - are subject to donations per sale. Under Armour advertises a product line called "Power in Pink," which includes items bearing the pink ribbon used to signify breast cancer. Proceeds from those purchases fund a $10 million pledge to Johns Hopkins Hospital Kimmel Cancer Center in Baltimore to establish the UA Breast Health Innovation Center. Other manufacturers and retailers often make large contributions to cancer-fighting and awareness groups. Dick's, which reported $597 million in profits in the quarter ending in August, donated $50,000 this year to the National Breast Cancer Foundation.

But individual purchases do not benefit any particular charitable organization, and the lump sum gifts are not derived as a portion of sales. A representative of Dick's declined to explain how those donation decisions were made. Both companies in written statements said they were "proud" of their affiliation with breast cancer organizations. "If a company is putting out products that clearly consumers will think are supporting the breast cancer fight, they should make it very obvious that they have skin in the game in terms of the contribution they are making to that cause," said David Hessekiel, president of Cause Marketing Forum, a company that produces conferences and an online marketplace for business and charity executives.

The issue is transparency, Hessekiel said. Customers deserve to know when their money is going to a charity or a business, especially when merchandise is presented as if it's part of some larger effort. "This is where it gets difficult," he said. "You can't prosecute someone for making something pink. And nobody owns the pink ribbon." This year, the NFL has invited high schools, including Fairfax's W.T. Woodson, to sign up with "Crucial Catch" and borrow equipment such as goal post pads or pylons for pink-out games. And regardless of who's directly benefiting from the sales of pink socks, schools often organize fundraisers in conjunction with their "pink out" games. Plus, there's the "awareness" aspect of the campaign. "That's what's been really incredible to see," Isaacson said. "That the message could spread through youth football players who are encouraging their moms and grandmothers and the women in their lives to get screened."

And the colorful campaigns go beyond breast cancer awareness. At Briar Woods High in Ashburn, Virginia, players wore yellow socks and held fundraisers to raise money for a documentary film campaign about children battling cancer. They've also sported purple ribbon helmet decals and collected money for the Juvenile Diabetes Research Fund in memory of Coach Charlie Pierce's wife, who died of complications of diabetes.

Still, when fashion marketing gets conflated with charitable giving, consumers can be left feeling justifiably confused. "To the extent that it leads to a bump or moves the needle in terms of direct donations, that's great. It's all good on some level," said Charles Lindsey, a professor of marketing at the University at Buffalo. "But when you get down to the nitty-gritty and we're not just talking about indirect awareness and we talk about how much [money] passes through, it's like anything in society: We all can improve."

Experimental drugs restore hair loss

Experimental drugs regrew hair for patients with the second most common type of hair loss. Now scientists want to make them work for the first: plain old male-pattern baldness.


http://bit.ly/2ed7IYD

Check out New Image Lab's photo album from the Hair Summit 2016!

Check out New Image Lab's photo album from the Hair Summit 2016!

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5 Best Fixes for Hair Loss

The real deal on what works—and what doesn’t—when it comes to fighting hair loss. Whether you’ve just noticed a thinning hairline or you're constantly wearing a baseball hat to hide your bald spot, there's a good chance you’ve tried at least one product to keep your hair.

And while there are myriad products designed to fight hair loss, it can sometimes be hard to tell which methods to trust and which to toss. One hard truth: Hair loss is mostly out of your control. “Baldness comes down to your genes,” says Frederick Joyce, M.D., founder of Rejuvenate! Med Spa and a member of the International Society for Hair Restoration Surgery. “If you have the baldness gene, there are some natural remedies that may make your hair stronger and healthier to slow your hair loss slightly—but they won’t prevent you from going bald. Still, maintaining hair health by eating well and using the right products—combined with medical-grade treatments—can really work all together to help you have a fuller, thicker head of hair.”

There are some solutions that address the problem (using stem cells to regrow hair is promising) but many are still years away from becoming available as a hair loss treatment. So here's the lowdown on which baldness solutions available now are truly effective—and which hair-loss fighters are merely snake oil.

1. Nutrition
2. Nioxin Shampoo
3. Laser Light Therapy
4. Propecia
5. Minoxidil

Arthritis drug may help with hair loss condition alopecia

For people who suffer from a condition that causes disfiguring hair loss, a drug used for rheumatoid arthritis might regrow their hair, a new, small study suggests. Alopecia areata is an autoimmune disease that causes patchy or complete hair loss, including on the head, body, eyebrows and eyelashes. Researchers found that more than 50 percent of 66 patients treated with the drug Xeljanz (tofacitinib citrate) saw hair regrowth in three months.

“There is hope now that we will have more to tell patients than get counseling and a wig,” said lead researcher Dr. Brett King, an assistant professor of dermatology at the Yale School of Medicine, in New Haven, Conn. Xeljanz appears to work by stopping the immune system’s attack on hair follicles, King said. In addition, the researchers have identified genes that might predict a patient’s response to treatment, he said. King said it is doubtful that Xeljanz will work for the most common types of hair loss (such as male pattern baldness), which are not the result of an autoimmune disease.

Whether the hair regrowth will last or how long someone would have to take the medication isn’t known, King noted. “It may be that if we can treat people for long enough the condition might go into remission, but we don’t know the answer to that,” he said. For the study, King and colleagues treated the patients with 5 milligrams of Xeljanz twice a day for three months. Over that period, more than 50 percent of the patients saw some hair regrowth and one-third recovered more than half of the lost hair on their head, King said. Side effects​ were mild, he added. King hopes that a big drug company will look at these results and sponsor larger trials to seek FDA approval for using Xeljanz as a standard treatment for the 4 million to 11 million Americans with alopecia areata.

Treatment with Xeljanz​ is expensive, costing as much as $40,000 a year. Because the drug is not approved for the treatment of alopecia areata, it may not be covered by insurance for that use, King said. Doctors, however, may be able to convince insurers to cover the cost, he added. The study was published Sept. 22 in the journal JCI Insight. Two dermatologists not involved with the study said the findings hold promise. “The results from this trial are very exciting,” said Dr. Katy Burris, an assistant professor of dermatology at Northwell Health in Manhasset, N.Y. “Alopecia areata is a frustrating condition for patients as well as physicians, and current treatment options have mixed results,” Burris said. Treatments included general immunosuppressants such as cortisone injected directly into the areas of hair loss, like the scalp or brows.

More-involved treatments include oral medications or skin creams to try to suppress the immune response or to stimulate the immune system to overcome the hair loss, said Dr. Doris Day, a dermatologist at Lenox Hill Hospital in New York City. “Alopecia areata can strike at any age and can be devastating to the person suffering [from the disease],” Day said. “The great news is that Xeljanz has worked even in patients who had five or more years of hair loss. The hair begins to grow within a month, and the regrowth is significant, with the hair often regrowing at or near normal thickness and volume,” she said. More research needs to be done to see how safe the treatment is, especially in children, Burris said. “However, these results keep us hopeful that a new, safe, effective treatment may be on the horizon shortly.”

Breast Cancer Treatment Costs Vary Wildly, Study Finds

It should have been a no-brainer — a routine test to confirm that a 50-something teacher was now, officially, a breast cancer survivor. But the patient balked. The surprise encounter got Dr. Sharon Giordano curious and she embarked on a study that has found that the cost of cancer treatment varies wildly, with no apparent rhyme or reason.

The variation adds up to $1 billion a year that insurance companies, patients and government health plans are needlessly paying to treat breast cancer, Giordano and colleagues at the MD Anderson Cancer Center report on Monday in the journal Cancer. Patients often get stuck with thousands of dollars in bills that can take years to pay off. "One of the reasons I started on this project is I had a patient with triple-negative breast cancer," Giordano told NBC News. "She was just finishing her five-year follow-up after treatment and was transitioning into survivorship. We talked about ordering an additional test. She was reluctant to get it." Why would anyone want to skip a test that could put her in the clear? "She shared with me that she was still on a payment plan, still trying to pay off the debt from her breast cancer treatment five years earlier," Giordano said.

"That really shocked me. I didn't know. I think it cured her but it left her with this huge debt that I was completely unaware of." In fact, the costs can get so high that some patients may skip treatments. "If they have a higher copay and it costs more, then they are less likely to take it," Giordano said. "There are pretty clear data that show the more it costs, the less people take it." As a working oncologist, Giordano knew there are almost always a variety of choices for treating breast cancer. She wanted to see if there was an easy way for patients and their doctors to pick the least expensive treatment that would still be effective. She was stunned at what she found. The team went through insurance claims filed by more than 14,000 breast cancer patients between 2008 and 2012 and found expenses across a single class of drugs varied by as much as $46,000.

Dr. Regina Hampton prepares to insert a balloon catheter into a patient's breast for radiation treatment in Lanham, Maryland Marvin Joseph / The Washington Post/Getty Images

"There were big variations in the cost of treatments we could prescribe," Giordano said. Even more surprising: Some of the more effective and least toxic treatments were, in fact, cheaper. "There is one chemotherapy regimen called TAC," Giordano said. That's short for Taxotere plus adriamycin plus cyclophosphamide — three different chemotherapy drugs that hit the cancer in different ways. "It was both one of the highest cost and one of the highest toxicity regimens," she said. Swapping a related drug called paclitaxel for Taxotere cut both the side effects and the costs, Giordano said. "It's almost $15,000 cheaper," she said. "I think most people would think those pretty equivalent in terms of efficacy," she added. But it wasn't easy to find this out.

"For me, working at a hospital, I don't really see that at all. I don't have an easy way to access what the costs would be," she said. Even treatments that should be cheap varied widely in cost. "We give a pill called an aromatase inhibitor that blocks estrogen after chemotherapy. There are three different ones that are all approved and they are probably equivalent," Giordano said. These pills reduce the chance that tumors will come back in the other breast. "Depending on what insurance plan (a patient has) one would be more costly and one would be less costly.

Doctors should try to find out. The problem is, it is time-consuming," Giordano said. And how much a patient ended up paying herself varied wildly depending on which insurance plan she had. "I was somewhat surprised at the relatively high costs patients were bearing — around $3,000 out of pocket on average," she said. "What I think was more concerning was that top quarter, top 10 percent of patients are getting really hefty bills costing them $10,000 or more." Not surprisingly, people with so-called catastrophic health insurance plans, which charge low premiums but which also don't reimburse for much, paid the most out of pocket. It adds up.

"Expenditures for cancer care have grown from $72 billion in 2004 to $125 billion in 2010 and are estimated to reach $158 billion by 2020," Giordano's team wrote. "The costs of cancer care are increasing at an unsustainable rate — two to three times faster than other health care costs. Patients' out-of-pocket costs have also been rapidly increasing." The findings ring true to Peggy Johnson, a breast cancer survivor in Wichita, Kansas who's also an advocate for the breast cancer charity Susan G. Komen For the Cure. Johnson, who was a breast cancer advocate long before she herself was diagnosed, kept careful track of her own medical bills as she went through treatment. She had four rounds of chemotherapy for triple-negative breast cancer and 35 radiation treatments.

"The cost of my bills was $200,000 and a few cents," Johnson said. "The insurance company negotiated it down. They paid $60,000." Johnson ended up paying $3,000 out of pocket for co-insurance and counts herself lucky because she had insurance through her employer. "Many people in the United States who don't have health insurance would have been billed the full $200,000, and they would have been expected to pay the $200,000," she said. Related: Good Luck Finding Out What an MRI Costs Many patients would just delay treatment and wait until their cancer progressed, which ends up costing even more to treat. And patients may end up going on Medicaid and costing the state and federal government plan extra money for treating advanced cancer.

Both Giordano and Johnson say it's very difficult to find out ahead of time what each particular insurance plan will pay, and what each hospital, clinic or physician will charge, for various treatments. "This is everybody's problem," Johnson said. "I know women who have lost their homes because they couldn't pay their medical bills." Studies have shown that medical bills are one of the leading causes of personal bankruptcy.

Crowdsourcing effort takes aim at deadliest breast cancers

TIMOTHY D. EASLEY, AP

Lara MacGregor, a participant in a new crowdsourcing project for metastatic breast cancer research, poses for a photo as she undergoes treatment at the Norton Cancer Center in Louisville, Ky., on Wednesday, Sept. 21, 2016.

Forget the pink ribbons. Spitting in a tube for science is what unites a growing group of breast cancer patients taking part in a unique project to advance treatment for the deadliest form of the disease. For many of the 150,000-plus patients nationwide whose tumors have spread to bones, brains, lungs or other distant organs, the hue heralding breast cancer awareness and survival each October is a little too rosy. They know cancer will likely kill them. And they’ve often felt neglected by mainstream advocacy and medical research. But now they have a way to get involved, with a big new project that aims to gather enormous troves of information about their diseases in hopes of finding new and better ways of treating patients like them -- women whose cancer has spread, or metastasized, and left them nearly out of options.

“Patients want to live and we know that research is the way that we’re going to be able to live,” said Beth Caldwell, a former civil rights attorney in Seattle diagnosed with metastatic disease in 2014. The idea is to gather molecular and genetic clues from as broad a group of metastatic breast cancer patients as possible. With data from thousands of people, researchers think they will be better able target treatments or come up with new ones by answering important questions about the disease. For example: Is there something unique about tumors that spread to the brain, or that recur many years after diagnosis?

What allows a very few women to outlive others by many years despite the same prognosis? Most breast cancer patients are treated at centers that don’t do research on tumors, so participating in studies at academic medical centers far from home is cumbersome at best. Patients sick or dying from their disease face additional hurdles. This project is different.

Patients sign up online, mail in saliva kits for genetic testing, and allow use of their tumor tissue samples and medical records. Researchers use social media to keep them posted about progress, and periodically invite participants to visit the Cambridge, Massachusetts, lab where their specimens are being analyzed. The Metastatic Breast Cancer Project is run by scientists at Harvard and Dana-Farber Cancer Institute and was launched last October with funding from the Broad Institute of MIT and Harvard, an independent nonprofit group.

Using word of mouth and social media, it has already enrolled more than 2,600 patients -- a pace nearly unheard of in medical research. “I enrolled from my recliner in my living room. I did my spit tube in bed,” Caldwell said. The mother of two turns 40 on Thursday, and cancer has reached her brain, lungs, bones and liver. She tries to stay positive, but October “is a month where I just want to hide under the covers and check out,” Caldwell said. “I just don’t want to be confronted with all this pink garbage.” Lara MacGregor, who runs a Louisville, Kentucky-based nonprofit group for cancer patients, said she feels the same way. “Everything about breast cancer is about survivors and beating cancer,” MacGregor said. “And we’re sitting in the wings saying, “I’m never going to celebrate the end of treatment.’”

MacGregor was pregnant when diagnosed with early-stage breast cancer in 2007. She had both breasts removed plus chemotherapy, and went on with her life thinking she was cured until two years ago, when tests for nagging back pain revealed cancer had returned and spread to her bones. Now 39, MacGregor read about the project online, decided immediately to take part, and emailed dozens of friends and connections who also signed on.

Before she mailed her saliva kit, “my 8-year-old drew a picture on the box and said, ‘thanks for helping my mom,’” MacGregor said. “I hope that real data about real people is going lead to better treatment options,” she said. “My life depends on it.” More than 200,000 people, mostly women, are diagnosed with breast cancer nationwide each year. Most are diagnosed when cancer is at an early, potentially curable, stage. For about 6 percent, or 15,000 patients, the disease has already spread at diagnosis.

And for about 30 percent of patients diagnosed with early-stage breast cancer, the disease will eventually recur in distant parts of the body. The average survival for patients with metastatic disease is about three years. According to a 2014 analysis from an alliance of breast cancer advocacy groups, less than 10 percent of government and nonprofit groups’ investment in breast cancer research in recent years went to studying metastatic disease. “Metastatic breast cancer in general is an understudied area,” says Marc Hurlbert of the Breast Cancer Research Foundation. “We don’t know, for example, how the tumor has changed. Is it the same makeup as it was before? Do cells have a different molecular profile than cancer that started first in the breast?”

By gathering large numbers of tissue samples and information about how the diseases progresses in different people, the project may be able to uncover useful trends. It has produced a few enticing clues already, including small groups of patients who’ve responded unusually well to standard chemotherapy or to new immunotherapy drugs -- some have survived for 10 years or more. The researchers hope DNA analyses will help explain why and lead to treatments that will improve the odds for all patients with the disease. Data will be posted on a special online site and with the National Cancer Institute’s genomic data program -- making it available to other scientists and boosting the odds of finding better ways to treat patients with metastatic disease.

And proof that crowdsourcing can draw thousands of patients to medical research is an important discovery itself, given how hard that can be, said Dr. Nikhil Wagle, a project leader and an assistant professor of medicine at Harvard and Dana-Farber. “This project makes them feel empowered, makes them feel like they are making a difference -- if not to help themselves, then maybe the next generation of patients,” Wagle said.

Young breast cancer survivor: Chemo Friday, back to work Saturday

It was just an ordinary September day, a year ago, and Tylithia Burks was home from her night shift as a nuclear pharmacist, vegging out on the couch. Somebody on TV was talking about breast self-examination. Even though she was only 33, not knowing of any family history of the disease, Burks decided self-examination was a good idea. She found a lump.

"Had I not done the exam, I would never have found it," she says now. "It could have been six months or a year." What happened after that discovery offers a look at the new face of breast-cancer treatment. Instead of immediate surgery, Burks embarked on a 16-round course of chemotherapy to reduce the size of the tumor. And instead of feeling sorry for herself, Burks went indoor skydiving at iFLY and posed for a set of glamour shots.

Over the five months, the chemo shrank the tumor from 3 centimeters to 4 millimeters. Burks worked her night shift at Triad Isotopes through the whole thing. Some nights, it was hard. "My co-workers knew," Burks says, "and they looked out for me." Enter Dr. Tejal Patel, Burks' doctor and a breast medical oncologist at the Houston Methodist Cancer Center. She doesn't think patients need to put their lives on pause for cancer. "There's not a lot out there about patients who do wonderfully," she says. "We can control the side effects, and it doesn't have to take away your life." For Burks, who is naturally bright-eyed and ebullient, keeping her life as routine as possible was the goal. "The thing is, prior to starting, I told myself I wanted to work and do other normal things, not just have cancer," she says. "I did it for normalcy." 

If she had chemo on a Friday, she was back to work on Saturday night. Burks also drew on her network of friends and fellow church members - she had people to take her to chemo, people to get food to her, people to pray for her. Burks' mother died of lung cancer in March 2008. "She tried to be private and keep it to herself," she says. "I'm very private, but this was not a time to do that." Because chemo can play havoc with a woman's reproductive organs, Burks' friends ran a GoFundMe crowd-funding campaign to raise money to freeze her eggs.

Burks, who is single, likes to joke that her children are on ice for now. She had her mastectomy in April and her reconstructive surgery in September. No cancer was found in her lymph nodes, and she has about a 15 percent chance of recurrence. She does not have the BRCA mutations that can be a signal for cancer. "Everyone has life happen to them," Burks says. "If you let it take you down, what are you living for?" Breast cancer in young women is relatively uncommon.

According to the Centers for Disease Control, only about 11 percent of new breast cancers are discovered in women younger than 45. Patel, who likes to point out that there are now 15.5 million survivors of breast cancer, says the new supportive treatments that make chemo more bearable work for patients at any age. "That's my goal," she says, "not to have to live in a bubble, but to work, go to church and go shopping." But care has to be ongoing, says Patel, because anxiety can surface, along with hot flashes and nerve pain. Fatigue, sexual dysfunction and, of course, financial worries can afflict survivors. Burks, who grew up in Killeen, the daughter of a career Army father, sees unusual symmetry between her cancer and her mother's.

Both were diagnosed in September. Her mother died in March; she finished chemo in March. She is looking forward to getting a tattoo of two ribbons: one white, for lung cancer; and one pink, for breast cancer. Right now, in memory of her Korean mother, she has a small tattoo of the Korean character for strength on the back of her neck. Burks is upbeat. "It's not the end of the world. You can beat it and have a normal life," she says. "Don't let it change you."

Beauty for Breast Cancer Awareness

When it comes to beauty's fight against breast cancer, there's always more to come!

1) Estée Lauder Advanced Night Repair: This longtime tried and trued nighttime serum is getting an upgrade with Estée Lauder’s pretty little Pink Ribbon Pin. 20% of each purchase will be donated to the BCRF until 6/30/17. $92

2) Estée Lauder Pink Perfection Color Collection: Perfect for quick travel touch ups, this makeup palette comes with four eyeshadow shades, blush, and even a full-size lipstick. 100% of profits will be donated to the BCRF until 6/30/17. $35

3) Lab Series Age Rescue + Face Lotion: Ginseng to the rescue for the guys. An Anti-age lotion that will help you fake that you’re not fatigued. 20% of each purchase will be donated to the BCRF until 12/31/16. $50

4) Tory Burch Eau de Parfum Rollerball: Roll on this sweet and floral fragrance for the next few months as Tory Burch joins in support of Breast Cancer Awareness. 20% of each purchase will be donated to the BCRF until 12/31/16. $29

5) Origins Overnight Mask: Prepare to seize the day (and to feel good doing it) after a night of using this hydrating mask. $5.00 from each purchase will be donated to the BCRF until 12/31/16. $26

6) Smashbox Photo Finish Primer Water: This fruity spritz will awaken and brighten your face so you are feeling fresh all day long. $5.00 from each purchase will be donated to the BCRF during the month of October. $32 Vanity Fair features in-depth reporting, gripping narratives, and world-class photography, plus heaping doses of Oscar-blogging, royal-watching, and assorted guilty pleasures.