With more than 2.6 million breast cancer survivors in the United States in 2011, it isn’t hard to find numerous resources and a great number of women willing to speak about living with this disease. One of those women I interviewed in 2000, Doris Dietart, then 50, surprised me when she told me that she had been living with the disease for more than 28 years.
Dietart was 22 when she was diagnosed. When she showed the gynecologist the lump in her breast, he was fairly certain that it was a non-cancerous cyst. Fortunately, he had the sagacity to investigate further. To test for cancer, he ordered a biopsy, a surgical procedure to remove the lump.
“Thank goodness, I didn’t get the run-around that has happened to so many [young women],” Dietart said. At that time in her life, Dietart wouldn’t have questioned her doctors’ knowledge and authority. “If they’d said, ‘Oh it’s nothing, let’s wait and check it in six months’, I’d have gone jauntily on my way, relieved that all was all right.”
When she awoke from the surgery that removed the lump, Dietart called out to her mother, “It was [cancerous], wasn’t it?” Her mom nodded, confirming Dietart’s suspicions. Only a few years married and the mother of a three-year-old girl, Dietart was diagnosed with breast cancer.
According to Ernie Bodai, MD, director of the Breast Health Center at Kaiser Permanente Sacramento, estimated that 99 out of 100 of the breast lumps and complaints that teenagers and women in their 20s have are benign, most often in the form of cysts or fibroadenomas. However, women as young as 17 have been diagnosed with breast cancer.
Dietart urges women to trust their instincts and to be aggressive about investigating suspicious lumps. However, sometimes that’s easier said than done. Kim Farrell was one of many young women who had difficulty finding a doctor who would investigate the lump she found in her breast.
“I had a horrible time getting a doctor to take me seriously,” she said. “I had gone to the breast surgeon when I was 29, and she flat out told me I was too young. She gave me the ‘middle of your cycle, come back in 6 months’ speech.'”
The surgeon’s attitude stems from the fact that women experience a number of fibrocystic changes during their menstrual cycle, which can sometimes cause benign lumps to form in the breast. The size and tenderness of fibrocystic lumps, such as cysts, usually increase before menstruation, decreasing after the period ends.
Breast changes prior to menstruation can make it much more difficult to tell what is the normal feel of the breasts. The week just before your period starts is when your breasts are most lumpy. This is why most health guidelines recommend that women do breast self-exams the week at the end of your period.
Sometimes a cyst may form one month and disappear a few months later. As Farrell was advised, women may monitor lumps for several months to see if these changes are something serious that just won’t go away. Women who are familiar with their own bodies and who perform regular breast self-examinations can help to identify the warnings signs.
“When my breast inverted four months later, I knew I had a serious problem on my hands,” Farrell said. An inverted nipple, where the nipple turns inward towards the breast, is one of the major signs of breast cancer. “[The nurse’s] initial words were ‘Oh honey, why didn’t you come in sooner?’ I could have wrung her neck.”
In 2009, the American Cancer Society predicted more than 190,000 women would be newly diagnosed with breast cancer. It estimated that roughly 18,600 of these women would be younger than 45.
Wende Logan-Young, MD, radiologist and founder of the Elizabeth Wende Breast Clinic, LLC in Rochester, NY, says that most doctors assume the majority of young women will not have breast cancer. However, Young stresses the importance of getting lumps checked.
At Dr. Young’s clinic, a woman is given a full, clinical exam. “[Then, we] do ultrasonography and then, if we feel a mammogram is indicated, we do a mammogram,” she said.
Mammograms, or X-rays of the breast, are normally used as diagnostic tools for cancer. With women between the ages of 40 and 50, annual mammograms are important because lumps are harder to detect in younger, denser breasts. According to Dr. Young, one-third of breast cancers happen before age fifty.
“I recommend starting [to get mammograms] at age thirty-five if you have a mother or sister who had breast cancer. If it’s an aunt, start at forty with all other women,” she said during a live chat on Ladies’ Home Journal.
Breast tissue in younger women is extremely dense, which makes it harder for an X-ray or ultrasound to spot a tumor. If a woman under the age of 35 comes in with a lump, most radiologists will not perform a mammogram right away. According to the National Cancer Institute, a biopsy is the only sure way to tell if a lump in the breast is cancerous or not.
In our interview, Dr. Young recalled a young pregnant woman who came to her clinic with a lump. She initially appeared healthy. An ultrasound revealed nothing, and a mammogram just showed dense tissue. However, the doctors performed a core needle biopsy, and the results came back positive for cancer.
“It surprises us often enough so that we rely on the needle test to help us out if everything else is normal,” said Dr. Young.
“I mean, obviously, in those women, not everything was normal because they had a lump to begin with. But most people tend to think that if a young person has a lump then it’s probably going to be okay,” she said. “What they don’t realize is that they have to do the needle test just to make sure because the mammogram and the ultrasound don’t always find them.”
Dr. Young stressed the importance of this approach, “The tests that we do have saved the day so many times that we’re really zealous about [them].”
This year, 230,000 women in the United States are estimated to learn they have breast cancer. BREASTCANCER.ORG estimates that 39,520 women will die from the disease in 2011. According to Worldwide Breast Cancer, one third of cancer deaths could be decreased if detected and treated early. When doctors find a tumor the size of a dime in a woman’s breast, they know it’s been developing for eight to ten years, said Dr. Bodai, former Chief of Surgery at Kaiser.
Promisingly, death rates from breast cancer have been decreasing since 1990. The decrease has been seen especially in women under age 50, thanks to increased awareness, treatment advances and earlier detection.
Experts say when breast cancer is diagnosed while in the early stages there is a 95 percent chance that the patient will survive the next five years. There are also better options for breast conserving surgery. However, a delayed diagnosis often means catching the disease at its more advanced stages, which lowers the chance of survival.
According to Dr. Bodai, most doctors feel that tumors respond to the higher levels of hormones that are present in young women. This leads them to believe that breast cancer is more aggressive in them.
“We do know that younger women die more often from the disease,” Dr. Bodai said. According to Imaginis, African-American women are more likely to get breast cancer before they are 40, and are more likely to die from it at any age. For many young women, the delay in detection means the difference between life and death.
Dr. Bodai once diagnosed a 19-year-old patient who came to his office after months of being misdiagnosed by other doctors. At that time, it was obvious that the woman was suffering from breast cancer. “By the time we diagnosed her, she had widespread disease and passed away within a few months,” Dr. Bodai said.
Some women who are diagnosed during the earlier stages of breast cancer have a family history of the disease. This keeps them acutely aware of their own risk of developing it. It is estimated that a woman’s risk of breast cancer doubles when there is a first-degree relative—mother, sister or daughter—who has been diagnosed with it as well.
Judy Niedzwiedz found out she had breast cancer at the age of 36. Her daughter, Alicia, was 15. Alicia grew up knowing that she was at risk as well.
Alicia thought about breast cancer a lot while growing up. “I wondered what path I would go down,” she said. “What medical advances would be done by the time I was older and more at risk.”
She admits that knowing about her risk made coping with the disease easier for her than for other women who may have no idea what lies ahead. “In my situation, where my mother and grandmother had the disease, I got to experience and see it first hand. I knew that if this happened to me, it would be okay.” Alicia was diagnosed with breast cancer at the age of 34.
Women with a family history of breast cancer are encouraged to get routine professional breast exams while they are young, which can help to diagnose them early enough to successfully fight the disease. However, inherited breast cancer is still thought to account for only 10 to 15 percent of cases. For most young women, finding out they have breast cancer is a complete surprise.
Alicia’s mother, Judy Niedzwiedz, was stunned when she found out she had cancer at the age of 36. “I couldn’t believe it to begin with…I was concerned with my survival, because as it turned out, my tumor was quite large,” she said.
She was diagnosed during the 1970s when breast cancer was treated with a Holstad mastectomy that completely disfigured the body. Niedzwiedz had the assertiveness to look for a surgeon who would perform a less disfiguring surgery, which allowed her to keep up her lakeside, “boats and bathing suits” lifestyle.
Niedzwiedz ‘s assertiveness has paid off in other ways as well. Now, more than 30 years later, Niedzwiedz is a long-term breast cancer survivor and the founder of Cancer Survivors Online. She described the outreach program she maintains as “the best therapy I’ve ever had.”
Niedzwiecz believes that breast cancer advocacy should take a multi-pronged approach. “Step one is to be aware,” she says. She is especially concerned with increasing awareness in young people and women whose culture keeps them from becoming familiar with their bodies. “I think we need to remind people that they really have to be assertive [with their doctors], and they have to feel comfortable with what they’ve heard,” Niedzwiecz stresses.
Some Steps Young Women Can Take to Potentially Decrease Their Risk of Developing Breast Cancer [Source: Breast Cancer in Young Women: Reviewing the Evidence and Setting the Course, Natasha Buchanan, PhD from the CDC]
• Be physically active.An inactive lifestyle increases the risk to rare, aggressive triple negative breast cancer.
• Boost your dose of vitamin D. Low levels of vitamin D in younger, pre-menopausal woman and African-American women also have higher risk of aggressive triple negative breast cancers.
• Drink filtered water
• Fill your diet with fiber
• Increase your intake of hormone-free food.
• Keep alcohol consumption low to moderate.Frequent to heavy drinkers are more at risk for developing benign breast disease, which is associated with higher breast cancer rates.
• Young smokers have another reason to consider cutting back or quitting outright. The risk of breast cancer is higher in women who began smoking in their teens and/or preceding pregnancy.