Too young for breast cancer?
October 20, 2008
In December 2001, 28-year-old Tina Koral was looking forward to the future. Recently engaged, she was in the midst of planning a wedding and had a successful career as a senior research associate for the American Medical Association. Then, one day, she noticed something troubling-a pea-sized lump in her right breast. Everything changed.
Koral, of Glen Ellyn, Ill., did what most women would do in her situation-went to see a doctor. Her doctor told her it was probably just a non-cancerous cyst and not to worry. And why should she? There was no history of breast cancer in her family, and she was young and healthy. She took her doctor’s word for it, she said, and didn’t think much more about it, until about a year later, when the lump got bigger.
One in every eight women in the United States will develop breast cancer, the most common cancer in women, at some point in their life, according to the National Cancer Institute. The majority of women with breast cancer are over the age of 50 at the time of diagnosis. While approximately 6 percent of cases occur in women between the ages of 30-39, less than one percent occur in women under 30.
In general, breast cancer in younger women tends to be more aggressive, said Dr. Robert Maganini, a surgeon specializing in breast disease who is currently affiliated with The Cancer Institute at Alexian Brothers Hospital Network.
“But for each woman there are some very specific [factors] that we can look at to predict the tumor’s aggressiveness, and more aggressive tumors are sometimes more susceptible to therapies,” Maganini said. “So it does not necessarily [mean there will be] a poor outcome in that situation.”
Koral’s lump became noticeably larger and she began experiencing a yellow, oily discharge coming from her nipple, she said. She went to see another doctor and, again, was told it was probably just a cyst.
This time, however, she wanted additional testing because even if it was a cyst, she wanted to have it taken care of because she didn’t want to keep having the discharge, she said.
She asked for a mammogram and the doctor ordered one. He incorrectly ordered a screening mammogram, however, which is only given to women over the age of 40. Koral said he should have ordered a diagnostic mammogram, which can be given at any age if a problem is suspected. But the hospital she went to refused to give her the test because it was against their policy to give screening mammograms to women under 40.
After Koral was denied a mammogram, her doctor instead ordered an ultrasound, which she had done in November 2002, but the radiologist who read the results also said that the lump was just a cyst.
Koral was satisfied enough with that answer and went on with her life. She got married in April 2003 and continued working and going about her life as usual. But the lump kept getting bigger and the nipple discharge persisted.
“It almost felt like the whole right side of my breast was getting thicker and harder,” Koral said. “And even though three doctors now told me that it was just a cyst and nothing to worry about, I kind of knew that there was a problem and I wanted to find out exactly what it was.”
In August 2003, Koral found a new doctor and was finally given another ultrasound, a mammogram and a biopsy, in which tissue was taken from her breast and analyzed by a specialist. The tests confirmed her worst fears-she had breast cancer.
The original pea-sized lump had become seven centimeters in diameter, and she had three smaller tumors in the same breast. She underwent chemotherapy and had a right mastectomy, in which her breast was removed, which at that point was her only option, she said.
Koral’s story is not uncommon, said Lindsay Avner, the founder and executive director of Bright Pink, an organization focused on educating young women about breast and ovarian cancer. Avner also serves on the Young Women’s National Advisory Council for the Susan G. Koman for the Cure foundation, a leading breast cancer charity.
Doctors often may not take young women as seriously as older women when they express concerns about breast cancer. It is statistically rare for women under 40 to develop the disease, but it is not impossible, Avner said.
“If it happens to you, if you do develop [breast cancer], statistics are irrelevant,” Avner said. “They don’t mean a thing.”
Jennifer, a 34-year-old woman from Lake in the Hills, Ill., who asked to keep her last name private, can relate to Koral’s story. In May 2007, she was diagnosed with breast cancer and had similar problems getting a correct diagnosis.
Jennifer found a lump in her left breast when doing a monthly self breast exam. She had a grandmother who had breast cancer, so she was immediately concerned.
“I was absolutely terrified,” Jennifer said. “But I had the information, and I knew what I had to do-to call a surgeon and get a biopsy.”
The first surgeon who Jennifer saw did not take her fears seriously, though, despite her family history, she said.
“He gave me the whole ‘You’re too young for it to be breast cancer’ spiel,” Jennifer said.
But Jennifer, an attorney and mother of a 5-year-old son, wasn’t satisfied with that answer. She said she argued with the surgeon for a month before scheduling a biopsy, which confirmed she had cancer.
Jennifer did the right thing in demanding a biopsy, Avner said, and women need to be their own advocates and speak up for themselves in situations like those.
“I think we are trained to say, ‘Oh doctor, whatever you think. You know best,'” Avner said. “But medicine isn’t perfect, and you know your body better than anybody else. You have a strong responsibility to ensure you are getting the quality of care you deserve.”
Maganini said he agreed with Avner’s advice and said women have a right to get a second opinion, and most health insurance plans will usually pay for one.
“If you’re not comfortable [with your diagnosis], then I would strongly recommend you get another opinion, ideally from a specialist,” Maganini said.
The exact causes of breast cancer are still unknown, and there is no cure for the disease. But treatment of the disease continues to improve, and the number of people who die from breast cancer continues to drop, Maganini said.
But there are preventative measures that all women, young and old, can take.
“Clinical breast exams should be given at least every three years starting at age 20; that is what we recommend,” said Michael Ziener, executive director of the Chicagoland Area Affiliate of Susan G. Komen for the Cure foundation.
Women need to be vigilant about their breast health and notice changes in their breasts, Ziener said.
Maganini also stressed the importance of young women doing regular self-exams and becoming familiar with what their normal breast tissue feels like so they will be able to recognize problems more easily if they ever come up.
Eventually, things worked out for both Koral and Jennifer. Both women have been cancer-free since undergoing treatment.
“Although I feel well now, sometimes it’s a challenge to keep the fear subsided,” she said. “Especially now that I have a daughter-I just worry that I won’t be here for her.”
Koral did file a malpractice suit against the hospital where she was treated and ended up settling out of court. She said the hospital, which she is not allowed to name, did admit to mishandling her case.
In the end, Koral, now 35, said she is just thankful she survived breast cancer, because a lot of people aren’t so lucky, and she doesn’t take life for granted now. She said she focuses more on her relationships with the people who she loves and doesn’t “sweat the small stuff.”
She also wants to turn her experience with cancer into something positive by helping other women who are going through the same thing. To do this, she recently finished writing a book about her experience, If I Just Breathe, which will soon be available on Amazon.com. The proceeds from the book will go to breast cancer charities.
“There is life after cancer,” Koral said. “I went on with my career, I have a family now and there was a time I wasn’t sure if that would be possible, but there is a light at the other side of the tunnel.”
For more information, visit BeBrightPink.org, Koman.org or TinaKoral.com.