Breast cancer awareness: Debunking some common myths

I don’t have a family history of breast cancer. So, I won’t get it. This is one of the biggest myths Litton hears. Only about 2 out of 10 people diagnosed with breast cancer have a family history, according to the American Cancer Society. “Just because you don’t have a family history, does not mean you are safe,” Litton said.

If you have breast cancer, you’ll have to get a mastectomy. Mastectomies are not as commonly recommended as they were in the past. Even when a patient opts for a mastectomy, the surgery is likely not a radical mastectomy, where the entire breast is removed, but it’s usually partial, skin-sparing, simple or modified, according to the National Breast Cancer Foundation. Some researchers say 70 percent of mastectomies in women with breast cancer are unnecessary, because healthy breast tissue isn’t proven to significantly lower risk of recurrence. Often, breast-conserving surgery such as radiation can be done to spare the breast. “In the vast majority of cases, having a mastectomy does not change the overall survival of cancer they’ve been diagnosed with,” Litton said. Having a mastectomy only lowers breast cancer risk in the removed breast, but doesn’t lower cancer risk in other parts of the body, the American Cancer Society says.

Everyone with breast cancer needs chemotherapy. While treatment can include chemotherapy (which causes hair loss), it might not. A lot depends on the size of the cancer and the patient’s biology, Litton said. Surgery and radiation are among other treatment options available to patients.

Only lumps that are painful are cancerous. Cancerous lumps can be painful or painless. Any lump that persists for two weeks should be evaluated by a medical professional, Litton said.

Breast cancer is a death sentence. The majority of those diagnosed with stage III, stage II and stage I breast cancer survive at least 5 years after diagnosis, according to data from the American Cancer Society. Metastatic or stage IV breast cancers have a 5-year survival rate of about 22 percent.

A good diet can prevent and treat cancer. Litton said many diagnosed with breast cancer look for a “magic diet,” but the reality is “the patient is not in control of the cancer.” With that being said, a low-sugar, plant-based diet can help overall health.

Men can’t get breast cancer. While breast cancer in men is rare (less than 1 percent of all breast cancers), it happens. This is because men have breast tissue. Old age, high estrogen levels, radiation exposure, alcohol consumption, a strong family history of breast cancer, or genetic mutations can all increase a man’s risk of breast cancer, according to the American Cancer Society.

There’s one type of breast cancer. There are more than a dozen types of breast cancer. Common kinds are carcinomas, tumors that grow in organs and tissues. Most breast cancers are a type of carcinoma called adenocarcinoma that starts in the milk ducts or milk-producing glands. But, there are other kinds of breast cancer that start in the cells of muscle, fat or connective tissue. Visit cancer.org for more information on types and treatments of breast cancer.

Breast cancer genetics revealed: 72 new mutations discovered in global study

The genetic causes of breast cancer just got clearer.

Researchers from 300 institutions around the world combined forces to discover 72 previously unknown gene mutations that lead to the development of breast cancer. Two studies describing their work published Monday in the journals Nature and Nature Genetics. The teams found that 65 of the newly identified genetic variants are common among women with breast cancer. The remaining seven mutations predispose women to developing a type of breast cancer known as estrogen-receptor-negative breast cancer, which doesn't respond to hormonal therapies, such as the drug tamoxifen. The new discoveries add to previous research bringing the total number of known variants associated with breast cancer to nearly 180.

Beyond BRCA1 and BRCA2

The international team of 550 researchers across six continents, known as the OncoArray Consortium, included professor Doug Easton of the University of Cambridge, who led the investigation. "Essentially, we used blood samples from a very large number of women (nearly 300,000), about half of whom had had breast cancer," Easton explained in an email. Next, the researchers used the DNA from the samples to look for genetic mutations. "Think of a gene as a very long strand of DNA," said Dr. Otis Brawley, chief medical officer of the American Cancer Society, who was not involved in the research. DNA is made up of nucleic acids, and when a nucleic acid is incorrectly placed along the strand, this is referred to as a genetic mutation, noted Brawley.

Take BRCA1 and BRCA2, two well-known genes that confer a high risk of breast cancer when they contain mutations. There are 125,950 base pairs in the BRCA 1 mutation, noted Brawley. "Think of it as a 125,950 letter word," said Brawley. "A mutation is a misspelling such that the gene cannot code the proper protein." A gene that cannot code the proper protein leads to disease. According to the National Cancer Institute, 55% to 65% of women who inherit a BRCA1 mutation and around 45% of women who inherit a BRCA2 mutation will develop breast cancer by age 70. However, the BRCA1 and BRCA2 risk mutations, which are present in less than 1% of women, explain only a fraction of all inherited breast cancers. The consortium came together, then, to discover the other causes of breast cancer susceptibility -- the additional genetic mutations that can lead to this form of cancer.

Finding the other mutations

The researchers measured DNA at over 10 million sites across the genome, said professor Peter Kraft of Harvard T.H. Chan School of Public Health, a study author. "At each of these sites, we asked whether the DNA sequence in women with breast cancer was different than that in women without," said Kraft. "Because our study was so large, we could detect subtle differences between these two groups of women and be sure these differences were not due to chance." According to Jacques Simard, a study author and professor and researcher at Université Laval, Quebec City, the newly discovered mutations only slightly -- by anywhere from 5% to 10% -- increase a woman's risk of developing breast cancer. But even though, individually, these mutations don't have as big as an effect as BRCA1 and BRCA2 defects, there are many of them, so their "overall contribution is larger," said Easton. An individual woman, then, may have two or more of these common smaller risk gene mutations, and so her risk for developing breast cancer increases due to their combined effects. Kraft noted that "taken together, these risk variants may identify a small proportion of women who are at 3-times increased risk of breast cancer." Women found to have a number of these smaller risk genetic mutations, then, would likely benefit from earlier mammography screening. Simard agreed, noting that it may be time to "adapt" breast cancer screening guidelines based on this information instead of basing mammography guidelines on age alone. By doing so, Simard said, "we will detect a higher number of breast cancers."

Breast Cancer “Awareness” Misses These Painful Realities

You Don’t Need as Many Mammograms as You Think

Mammograms can detect cancers that would otherwise kill you, but they also can give false positives that result in more scans and biopsies that turn out to be negative. And they can result in you getting the full cancer patient experience for slow-growing or benign cancers that didn’t really need to be treated. So mammograms aren’t a “more is better” kind of thing. The US Preventive Services Task Force says you should get your first mammogram at age 50 (unless you really want to start earlier) and should get them every other year through age 74. Other organizations disagree slightly. The American Cancer Society wants people to start at age 45; the American College of Radiology and the American Congress of Obstetricians and Gynecologists says age 40. Each organization also has its own ideas for whether you should get them every year, every other year, or some combination that changes as you age. You may also get to stop getting mammograms at age 75 according to the USPTF; after that, they say there isn’t enough evidence to recommend for or against screening. Other organizations recommend different end dates, but generally there’s no point to detecting breast cancer if you’re likely to die of something else first. The American College of Radiology says it’s time to stop if you know you have less than seven years left to live, or if you wouldn’t act on an abnormal finding.

Not Everyone Thinks of Their Cancer as a “Battle”

Nobody wants to be a “victim” of cancer, so it feels positive to shift the focus toward the person with cancer as an active participant. Maybe they’re “fighting” cancer, or they’re a hero or a trooper. And if the worst happens, we say they “lost their battle.” But many people who have cancer don’t like this metaphor. If somebody is tough for beating cancer, that implies that people who died or whose disease got worse were somehow not tough or active enough. Many cancer patients feel uncomfortable with the idea that they’re supposed to be someone’s hero.

Cancer Treatment Is Incredibly Expensive

Even if you do catch your cancer early and “fight” your “battle” like you’re supposed to, you’ll face steep medical bills. A study of women with private insurance—that’s the kind you get through your employer or buy for yourself—found that women under 45 incurred $97,486 of extra medical costs (including those paid by insurance) in the year following diagnosis. Women aged 45 to 64 were more likely to catch their cancer earlier; their costs averaged $75,737. A previous study, on patients who were treated in 2010 (before the Affordable Care Act) also found costs to be astronomical. There was a large gap between how much the insurance company would pay and how much the treatment actually cost—on average $15,000 for stage I/II cancer and $50,000 for stage IV. (People’s out-of-pocket costs should be lower today. For example, the ACA made it illegal for insurance companies to cap their total benefits.) But even today, people with cancer still have plenty of expenses in the form of copays, deductibles, and coinsurance. Half of Americans would have a hard time affording even a $100 emergency, much less the thousands that cancer patients have to cough up.

Breast Cancer Prevention Tips

According to Texas Oncology, Texas ranks third in the United States in estimated new cases of breast cancer. Dr. V at Texas Oncology in Tyler says prevention is key to lowering the number of women that are diagnosed. Breast cancer is the second-deadliest cancer among American women and although it's not completely prevented, women can take steps to decrease risk and/or improve early detection. Regular screenings depending on your age is important, alongside a healthy lifestyle and regular exercise. These are just a few ways to lower the numbers.

Screening

• Women should check their breasts monthly. Report any changes to a physician immediately. 
• Women in their 20s and 30s should have a clinical breast exam every three years. 
• Women in their 30s should discuss their breast cancer risk level with a physician to determine the most appropriate cancer screening options, including mammograms and MRI screenings. 
• Women age 40 and older should discuss individual risk factors with a physician to determine recommended timing and most appropriate screenings, including annual mammogram, annual clinical breast exam, and annual MRI screening. 
• Women age 50 and older should have a mammogram and a clinical breast exam at least every two years after discussion with her physician, and if recommended by a physician, an annual MRI screening. 

Lifestyle

• Regular exercise, limiting alcohol intake, and maintaining a healthy body weight may reduce the risk of breast cancer. 

Higher Risk

• Women with a family history of breast cancer should discuss genetic testing with their physicians. If genetic tests indicate a woman is BRCA-positive, there are a number of risk reduction strategies to discuss with her physician. 
• Women with a first degree relative who had breast cancer before age 50 should begin receiving mammograms 10 years before reaching that relative’s age at diagnosis.

What’s the Connection Between Heart Disease and Breast Cancer?

It may seem like the ultimate insult, but having survived breast cancer can put you at higher risk of additional health problems later in life. The National Cancer Institute reports that the average five-year survival rate for breast cancer is now about 90 percent, thanks to advanced treatment protocols. However, some patients who’ve had radiation treatment and chemotherapy may be at higher risk of developing cardiovascular disease in what’s called a late side effect of treatment for breast cancer. This means that the heart problem may not surface for months or years after the conclusion of treatment. According to a report in the journal EJC Supplements, an open access companion journal to the European Journal of Cancer, cardiovascular disease is already the leading cause of death “accounting for 30 to 50 percent of all deaths in most developed countries. Because of this high background rate, even a minor increase in risk of CVD [resulting from cancer treatment] will have an important impact on morbidity and mortality.”

According to a 2016 article in the Cleveland Clinic Journal of Medicine, ischemic heart disease (a reduction in blood supply to the heart) is the most common cause of death after radiation treatments. Valve disorders and diseases of the heart muscle and the pericardial sac that encases it are also common. A disruption to the electrical pulses that make the heart pump can also occur. “Overall, compared with nonirradiated patients, patients who have undergone chest radiotherapy have a 2 percent higher absolute risk of cardiac morbidity and death at five years and a 23 percent increased absolute risk after 20 years,” the article notes.

Anju Nohria, director of the cardio-oncology program at Brigham and Women/Dana-Farber Cancer Institute in Boston, says the problem stems from radiation’s ability to kill healthy cells that are located within the field of radiation being administered to a breast cancer tumor. Radiation “essentially destroys the cancer cells preferentially because they’re rapidly multiplying and therefore more susceptible. But [radiation can] also cause some damage to any healthy tissue” nearby. She says this is particularly true for patients having radiation treatments on the left breast, as the heart sits under that breast and is therefore closer to radiation beams in some cases. “If the tumor is on the left side but in your armpit, maybe you’re fine. But if it’s right over the heart, you have a higher risk,” of developing CVD later on because of that proximity to exposure, Nohria says.

In an effort to avoid exposing the heart as much as possible, many doctors now deliver radiation treatment while patients are lying prone, “meaning that they’re lying on their stomachs with their breasts hanging down." That way, the breast is sort of separated from the chest wall, and the heart is less in the radiation field.” Radiation is delivered from the underside of the table. Some doctors are also using “very sophisticated radiation techniques where they can map out the tumor and try to exclude the heart from the radiation field to the extent possible,” she says.

Even so, some patients will experience problems while others won’t, and the risk of developing cardiac problems after radiation treatment is dependent on a number of factors, including the location of the tumor and dose of radiation administered. “If you need a lot of radiation because you have a large tumor or it’s a particularly malignant tumor,” then the higher the dose the heart may receive, Nohria says. A patient’s age and preexisting cardiac risk factors like high blood pressure, high cholesterol and diabetes can also elevate risk. Smokers or people who already have heart disease are also at higher risk, “because in a way the heart has already sustained some damage and now you’re giving it an additional kick, so to speak.”

Certain chemotherapies including anthracycline drugs and certain drugs within the Herceptin family of HER2 agonists have also been linked with an increased rate of cardiovascular disease in some breast cancer patients, Nohria says. Adriamycin, an anthracycline chemotherapy, causes a “weakening of the heart muscle in 8 to 9 percent of women. In the majority of these cases, it happens within the first year of treatment,” she says. So if you’re taking this drug, expect your doctor to keep tabs on your cardiovascular health. “As we’ve begun to realize this [risk], we’re being more vigilant looking for it in the first year after treatment.” If this cardiac toxicity is noted early, “you can put people on heart medicines that help the heart recover in a certain proportion of patients.” But a change in cardiac health won’t always be obvious early on, she says. “Sometimes you’ll have an asymptomatic decline in your cardiac function – the squeezing of the heart muscle – and it only manifests when the person comes up with symptoms, which can be a several-year lag.”

With some of the HER2 agonist drugs, cardiac problems may actually be reversible in some patients, Nohria says. “If you stop the drug, there’s a high likelihood that your heart will get better. But in a few cases, like 30 percent, it doesn’t get better. For those people, you have to manage them with cardiac medications to try to prevent it from getting worse.” Combination therapies can present additional challenges to managing cardiac disease risks. Again, as with radiation, dosage makes a difference in whether a patient will develop cardiac issues after chemotherapy. “The higher the dose, the higher the likelihood that you’ll have a problem. For instance, if you have metastatic disease and you’ve had many, many doses of the drug, your risk is higher.” Similarly, “women over the age of 60, women with preexisting risk factors and women with preexisting heart disease” all have a higher risk of developing CVD after chemo. Patients who receive a combination of chemotherapy and radiation, particularly if it’s on the left side, “have a double whammy. Plus if you’re older and have a lot of risk factors, that sort of magnifies your risk because they’re additive,” Nohria says.

As more doctors have become aware of the connection between breast cancer treatments and heart health later in life, many are taking steps to reduce the risk, particularly in patients who have other risk factors for cardiovascular disease. In many patients, this means some prep work before therapy begins. “If you’re in a good medical center, before they start you on these things they should be getting a good cardiac history and trying to optimize your cardiac risk factors before starting you on these medications,” Nohria says. Breastcancer.org also recommends that, “no matter how old you are, it’s a good idea to ask your doctor about your personal risk of treatment-related heart problems and whether or not visiting a cardiologist before treatment starts is a good idea for you.” In addition to evaluating your baseline heart function and assessing your risk factors, “you also may want to ask your oncologist how your heart function will be monitored during treatment.”

Myths about breast cancer debunked: Family history often has nothing to do with diagnosis

If you have breast cancer, you'll have to get a mastectomy.
Mastectomies are not as commonly recommended as they were in the past. Even when a patient opts for a mastectomy, the surgery is likely not a radical mastectomy, where the entire breast is removed, but it's usually partial, skin-sparing, simple or modified, according to the National Breast Cancer Foundation.

Some researchers say 70% of mastectomies in women with breast cancer are unnecessary, because healthy breast tissue isn't proven to significantly lower risk of recurrence. Often, breast-conserving surgery such as radiation can be done to spare the breast.

"In the vast majority of cases, having a mastectomy does not change the overall survival of cancer they've been diagnosed with," Litton said. Having a mastectomy only lowers breast cancer risk in the removed breast, but doesn't lower cancer risk in other parts of the body, the American Cancer Society says.

Everyone with breast cancer needs chemotherapy.
While treatment can include chemotherapy (which causes hair loss), it might not. A lot depends on the size of the cancer and the patient's biology, Litton said. Surgery and radiation are among other treatment options available to patients. Only lumps that are painful are cancerous.

Cancerous lumps can be painful or painless.
Any lump that persists for two weeks should be evaluated by a medical professional, Litton said.


Breast cancer is a death sentence.
The majority of those diagnosed with stage III, stage II and stage I breast cancer survive at least 5 years after diagnosis, according to data from the American Cancer Society. Metastatic or stage IV breast cancers have a 5-year survival rate of about 22%.

A good diet can prevent and treat cancer.
Litton said many diagnosed with breast cancer look for a "magic diet," but the reality is "the patient is not in control of the cancer." With that being said, a low-sugar, plant-based diet can help overall health.

Men can't get breast cancer.
While breast cancer in men is rare (less than 1% of all breast cancers), it happens. This is because men have breast tissue. Old age, high estrogen levels, radiation exposure, alcohol consumption, a strong family history of breast cancer, or genetic mutations can all increase a man's risk of breast cancer, according to the American Cancer Society.

There's one type of breast cancer.
There are more than a dozen types of breast cancer. Common kinds are carcinomas, tumors that grow in organs and tissues. Most breast cancers are a type of carcinoma called adenocarcinoma that starts in the milk ducts or milk-producing glands. But, there are other kinds of breast cancer that start in the cells of muscle, fat or connective tissue. Visit cancer.org for more information on types and treatments of breast cancer.

Breast cancer charities: Where to give — and where to avoid

October is Breast Cancer Awareness month and with the recent announcement that Julia Louis-Dreyfus has been diagnosed with the disease, the issue is once again on the hearts and minds of many.

Breast cancer is the most common cancer among women and is the second leading cause of cancer deaths among women, according to the Centers for Disease Control and Prevention. One way to help fight this devastating disease is to contribute to charities that focus on the research, prevention and treatment of breast cancer. But with the large number of organizations with similar names devoted to the cause, how do you know which ones are the best? The first thing you should do when considering donating is to check with charity watchdog groups that evaluate how well each organization spends the money it receives from contributors.

Two of the biggest charity watchdogs are Charity Watch and Charity Navigator. Both groups evaluate thousands of charities and non-profit organizations by looking at financial statements, tax reports, program expenses and fundraising costs. When giving to a charity it is important to consider three things, according to Charity Navigator CEO Michael Thatcher: Be clear on your motivation for giving and focus on where you want to make an impact, check the financial health and accountability of the organization, and check for signs of results. In terms of breast cancer, consider whether you want your money to go for research and finding a cure, support services for cancer patients, helping support families or education and public awareness, Thatcher said.

Charity Watch: Top breast cancer charities The American Institute of Philanthropy's Charity Watch cites 12 organizations as the top-rated cancer charities and of those there are three on the list that focus specifically on breast cancer prevention and research:

Breast Cancer Research Foundation
Mission: To prevent and cure breast cancer by advancing the world's most promising research. Rating: A+ Program percentage (percentage of its cash budget it spends on programs relative to overhead): 90% Cost to raise $100 (How many dollars a charity spends on fundraising to raise each $100 of contributions): $7

National Breast Cancer Coalition Fund Mission: To end breast cancer; has set a deadline to know how to end breast cancer by January 1, 2020. Rating: A Program percentage: 83% Cost to raise $100: $13

Breast Cancer Prevention Partners (formerly Breast Cancer Fund) Mission: Working to prevent breast cancer by eliminating exposure to toxic chemicals and radiation linked to the disease. Rating: A- Program percentage: 77% Cost to raise $100: $13

Charity Watch also gives top ratings to these broader cancer organizations on the list that are also involved in breast cancer research, treatment and education: Cancer Research Institute, Memorial Sloan Kettering Cancer Center, Prevent Cancer Foundation and the Entertainment Industry Foundation's Stand Up To Cancer.

Charity Navigator: Top breast cancer charities

Charity Navigator uses a star rating system when evaluating how efficiently a charity uses your donations. Of the three charities highly recommended by Charity Watch, the Breast Cancer Foundation received Charity Navigator's highest rating of four stars. The National Breast Cancer Coalition Fund and the Breast Cancer Prevention Partners both received three stars. Other national charities devoted to breast cancer research and medical services that received four stars from Charity Navigator:

National Breast Cancer Foundation Mission: To help women now by providing help and inspiring hope to those affected by breast cancer through early detection, education and support services. Score (out of 100): 96.0 Program expenses (Percent of charity's total expenses spent on programs, services): 82.9%

Dr. Susan Love Research Foundation Mission: To achieve a future without breast cancer and improve the lives of people impacted by it now through education and advocacy. Score: 92.0 Program expenses: 81.9%

Lynn Sage Cancer Research Foundation Mission: Funding life-changing breakthroughs in breast cancer. Score (out of 100): 90.9 Program expenses: 92.1%

Charity Navigator also gave four stars to these charities that provide breast cancer support services and education: Bay Area Cancer Connections, It's the Journey, Casting for Recovery, Sharsheret, BreastCancer.org, Prevent Cancer Foundation, Living Beyond Breast Cancer and American Italian Cancer Foundation.

Susan G. Komen

One of the largest and most well-known charities devoted to the cause is the Susan G. Komen breast cancer organization. The charity was founded in 1982 and was one of the first to devote itself to the cause of breast cancer research and has raised millions. The organization’s reputation was damaged slightly after a decision in 2012 to cut its grants that funded breast cancer screening and outreach programs at Planned Parenthood erupted into controversy. The group quickly reversed its decision. 

The organization also has received criticism for what some deemed excessive executive compensation and for "pinkwashing," cause marketing with pink ribbons that allow companies to exploit the disease for profit. The charity received mixed scores from the watchdogs.

Charity Navigator gives Susan G. Komen for the Cure a 3-star rating (out of four) and lists the percent of its expenses spent on programs and services at 81.6%.

Charity Watch gives the Susan G. Komen Breast Cancer Foundation a C+ rating with program percentage of 62%-77% and the cost to raise $100 of $12-$27.

Don't give: Low-rated charities Charity Navigator also cites these organizations as being low-rated and states: “We caution you to look carefully before supporting one of these charities." A high concern advisory was issued for the defunct charities Breast Cancer Society and the Cancer Fund of America. The Federal Trade Commission ordered the organizations to be dissolved after alleging they were scam charities and bilked donors. Other organizations rate lower because they scored lower on financial support and are spending more on fundraising than devoting funds to the issues, Thatcher said. "The money is going to spending money to make money."

These organizations received zero or one star:
National Cancer Center
Walker Cancer Research Institute
American Breast Cancer Foundation

These organizations received two stars:
United Breast Cancer Foundation, The Avon Foundation and the American Cancer Society.

Women Manage Lymphedema After Bouts With Breast Cancer

A vine of pink begonia blooms climb up Kate Collins' left arm in what looks like a full sleeve of tattoos. People around town regularly stop her and ask about them only to realize, with a closer look, that there is a seam creeping up her arm. The flowers are not tattoos; they're a printed pattern on a compression sleeve, a band of medical grade material that she wears every day to ward off the swelling from lymphedema, a condition related to the breast cancer diagnosis she received a dozen years ago. Lymphedema can occur after a patient has her under-arm lymph nodes removed to determine whether her cancer has spread. Besides causing swelling, the condition can be painful and increase the risk of skin infections.

Sleeves, like the one Collins wears to keep her lymphedema at bay, feel like tightly wrapped ace bandages. "It's uncomfortable, it's hot and I hate wearing it," says Collins, 64, who had both her breasts and the lymph nodes on her left side removed. "But I figure if you've got to wear it — you might as well make a fashion statement." Collins keeps a basket of sleeves in the living room in her home in Northampton. The one with a bluish gray snake that wraps around her arm she wears while gardening. Another sports a smiling sun. All of them keep her lymphatic fluid — waste that is normally filtered out of the body by the lymph nodes — from pooling in her arm. She's had to give up wearing some of her rings or bangle bracelets because of swelling in her fingers and wrists. Summer used to be her favorite season, but because the sleeve makes her feel hot, she now stays inside in the air conditioning or goes out only in the cool morning air.

"It is a chronic disease," she says of lymphedema. "As if you don't remember that you had breast cancer ... here is a reminder." Once a woman has had lymph nodes under her arm removed, she is at permanent risk of developing lymphedema. And, when she gets it, there is no way to get rid of it. The two ways to ease the symptoms are the compression bands and light massage. It's a breast cancer side effect that hasn't gotten enough attention, says Collins. "Nobody told me that I was going to get lymphedema, nobody warned me," she says. "Wouldn't you think that my surgeon or my oncologist would say, 'by the way, you lost all your lymph nodes, you are at risk of lymphedema." But no one did. When her lymph nodes were removed a dozen years ago, a medical assistant in the New York hospital where she was being treated left her with a few cryptic words, "Sometimes ladies' arms swell." The lymphatic system looks much like a root system directly under the skin that runs throughout the body.

At certain junctions, pea-sized pockets, the lymph nodes, are working to pump and filter the body's fluid waste. People generally have between 500 and 700 lymph nodes throughout the body with 15 to 30 under each arm. The waste they carry is mostly blood cells, but there can also be bacteria or even fat mixed in. Doctors typically remove the lymph nodes to check for the spread of cancer cells. "It's kind of our garbage picker-upper system," says Lisa McCutcheon, an occupational therapist, who works with breast cancer survivors at Cooley Dickinson Hospital in Northampton. She teaches cancer survivors how to perform manual lymph drainage on their own bodies. It's a technique that is like an extremely light massage. "A manual lymphedema coach almost serves as a traffic cop," she says. "So, if there is swelling, I am going to teach them how to reroute it down a pathway that is a healthier pathway. It's almost like a highway system — if it gets backed up — nothing can move." People might have a feeling of fullness or achiness before they see any swelling. If they intervene quickly enough, there is hope they can prevent significant swelling, she says. "It's good to know what isn't normal, so you can catch any issues," she says.

"We are trying to give a lot of education around prevention and awareness, so if there is an issue people can act on it quickly." At the time of her cancer diagnosis, Collins was living in Long Island, New York working as a school district administrator, and the trauma of having both her breasts removed foremost on her mind. Those few words from the medical assistant about possible swelling didn't seem significant. "Did I process that? Of course I didn't. I was getting ready to get cut open and maybe die," she says. Doctors today are more conscious of making patients aware of the risk of lymphedema, says Michelle Helms, a general surgeon at Cooley Dickinson who treats women with breast cancer. Over the last 15 years there also has been a national movement to reduce the number of lymph nodes that are removed. Surgeons in the past might have stripped the armpits of them, leaving patients at high risk of developing lymphedema, but today surgeons are more careful to take only those that must go says Dr. Holly Michaelson, chief of surgery at Cooley Dickinson.

"Significant lymphedema is life altering and I think surgeons have done everything we can to make sure that fewer people get lymphedema," she says. These days, most breast cancer patients have just one or two lymph nodes removed. As a result, the condition is less common. Women who have fewer than four lymph nodes removed have a less than 4 percent chance of developing lymphedema. Women with more advanced breast cancer and have all of the lymph nodes removed, face a risk of up to 20 percent, Helms says. With the accompanying pain and swelling, this can significantly diminish a patient's quality of life. "You are kind of dragging a big old water balloon in the arm," she says. "This can be really tough." The stretched skin also becomes weak and can result in ulcers, which can easily lead to infections. By intervening quickly and being educated about the condition, women can lower their chances of developing severe infections, says McCutcheon. Melissa Ross of Florence caught her lymphedema early. A little more than a year after her surgery to remove both of her breasts, she noticed some slight swelling.

Her doctors at Cooley Dickinson had warned her about lymphedema, so she was looking for it. "I knew what it was right away," she says. She started learning about manual lymph drainage. "I sort of jumped on it. I didn't wait till it was really bad." Sometimes over a multi-week period she goes to see McCutcheon twice a week, but lately she's found ways to manage her symptoms at home. A dip in her backyard pool, she's found, eases the swelling. "Being submerged in water puts pressure on your lymphatic system, so it pushes the fluids out," she says. Other days, she jumps on a mini trampoline in her bedroom. The force of gravity can also works wonders, she says. ?????? Lymphedema never caused her significant pain; she still works part-time as a hairdresser, and rarely does she wear her compression sleeve. Sometimes her skin around her right elbow gets taut, but she knows how to manage it and she credits her mild condition with catching it early. Now retired, Collins wishes that someone had told her to seek treatment sooner. In the three years between her breast surgery and her lymphedema diagnosis, any small cut or scrap could leave her with a severe infection, and she had no idea why. "It is important to keep the skin healthy because the skin is a barrier," says McCutcheon. "If the lymphatic system is already slowed down — you can have an infection pretty seriously." This is what happen to Collins.

One night she woke up in a pool of sweat to find that her left arm had tripled in size and turned a dark shade of red. She rushed to the emergency room in pain and with a fever. Doctors diagnosed an infection that stemmed from a bug bite, but didn't mention lymphedema. The swelling still hadn't gone done six months later when she went to Cooley Dickinson for physical therapy for some herniated discs in her back. Her therapist, who was also certified lymphedema therapist, made the diagnosis. Since then Collins has learned to manage her lymphedema. She bought the collection of compression sleeves and the therapist taught her how to gently massage her arm to ease the swelling. "I don't have to go to work because I'm retired, so I manage my lymph fluid in the morning," she says. "Or I do it when I am putting lotion on my arm."

10 things breast cancer doctors wish you knew

1. I have breast cancer. Am I going to die? According to several doctors participating in Pink Power TODAY, this is a common question women ask immediately after being diagnosed. "Breast cancer is not a death sentence," Dr. Deepa Halaharvi, a board-certified general surgeon specializing in breast surgery, told TODAY via email. "Most people do really well and 5-year survival for all stages of breast cancer is 91 percent. We really need to be catching this at an early stage."

2. I don't have a family history of breast cancer. Why did I get it? "Most commonly, breast cancer is sporadic and most people (85 percent to 90 percent of breast cancer patients) don’t have a family history of breast cancer," said Halaharvi. "It’s a common misconception that it’s inherited through a family history. So regular screenings are very important, regardless of what your family history may be. At OhioHealth, we recommend average-risk women begin screening mammograms at age 40." According to the American Cancer Society, women ages 40 to 44 should start having annual mammograms if they want. Women ages 45 to 54 should get mammograms every year, and women 55 and older should switch to every two years, or can continue yearly screenings.

3. What are the most important risk factors for breast cancer? "A previous history of breast cancer, a significant family history of the disease (particularly when a genetic mutation in BRCA1 or BRCA2 are present), and specific conditions such as atypical hyperplasia and LCIS that are only detected when breast tissue is biopsied and examined microscopically," explained Dr. Freya Schnabel, the director of breast surgery at Perlmutter Cancer Center at NYU Langone. Schnabel noted that these risk factors have different magnitudes, and you should try to discuss with your doctor what makes a family history significant (close relatives, diagnosed at young ages, multiple generations).

4. I am a BRCA carrier. What do I need to know? "BRCA carriers are the highest risk group for breast cancer," stated Schnabel. "BRCA1 carriers are at risk for breast and ovarian cancer — their lifetime risk for breast cancer may be as high as 50 to 85 percent. BRCA2 carriers have a 40- to 60-percent lifetime risk for breast cancer, and are at an increased risk for ovarian cancer, and are also at increased risk for pancreatic cancer." According to Schnabel, BRCA carriers have three options to manage their breast cancer risk: intensive surveillance (to maximize the opportunity for early detection of disease should it occur) chemo-prevention (the use of drugs like tamoxifen to reduce the risk of developing breast cancer) risk-reducing surgery (bilateral mastectomies with reconstruction to lower the risk of breast cancer to as low as we can make it)

5. What can you tell me about the alcohol and breast cancer link? While countless studies support that wine is good for your heart health, you have to weigh these benefits against its link to cancer. "There is good evidence that alcohol increases the risk for breast cancer," Schnabel explained. "Specifically, women who drink at the rate of seven drinks per week have about a 20-percent increase in their risk for breast cancer."

6. My mother was diagnosed with breast cancer at 45, when should I start getting mammograms? "If you have a family history of breast cancer, you should start screening mammograms 10 years prior to your family member getting diagnosed," Halaharvi explained. "So in this case, you’d start at age 35. Again, make sure to talk with your physician and discuss your family history."

7. How quickly do I need to start treatment for my breast cancer? When you're first diagnosed, it may feel like there is pressure on you to decide on a treatment plan right away. But Dr. Lisa Newman, a breast cancer surgery specialist at Henry Ford Health System in Detroit, advises clients to take a beat to process everything and make the right decision for you. "You should not feel that you are 'racing the clock' — the cancer is not spreading or becoming more advanced in your breast or your body by the day," Newman said. "You have the time to make sure that you are properly informed about your cancer diagnosis and treatment options before jumping into something irreversible."

8. Should I get a second opinion? For many women, taking the time to weigh their options means getting more than one medical opinion, or looking into clinical trials or research studies, Newman said. "There is no magic deadline," she stressed. "But a general rule of thumb is that we don’t like to see patients delaying the start of their treatment more than four to six weeks after the diagnosis has been made. The stage and type of breast cancer can influence how quickly the treatment should be initiated."

9. There are so many conflicting reports about breast self-exams, should I be doing them? The American Cancer Society no longer recommends frequent breast self-exams because research has found they don't provide a clear benefit or save women's lives. However, it does stress that women should have self-breast awareness — "be familiar with how their breasts normally look and feel and report any changes to a health care provider right away." "Women should be aware of changes to their breasts such as a palpable mass, skin changes, nipple discharge, skin dimpling, nipple inversion and mass underneath the arms such as enlarged lymph nodes," Halaharvi stressed. "You don’t necessarily need to have a mass to have breast cancer such as inflammatory breast cancer (redness, an orange peel appearance) are seen."

10. How and when should I tell my children? This is one of those answers that is tricky, depending on the ages of your children, but Newman offered this advice: "In general it is best to be as honest with them as possible, because they are likely to sense and/or see that something major is happening, and it is important to provide them with reassurance that you are taking care of yourself," she said. "Very young children may need to also be reassured that cancer is not contagious like the flu, and older children may actually feel empowered if they are allowed to help out and provide support during your treatment. All children need to understand that the cancer diagnosis was not anyone’s fault."