Every woman needs a best friend in life, especially at times of crisis. If that crisis happens to be a diagnosis of breast cancer, Amy Schaeffer would be an excellent best friend to have in your corner because of her knowledge, compassion, and personal experience with the disease.
Schaeffer, 52, a West Windsor resident, is one of 2.6 million breast cancer survivors in the United States. She feels that she was lucky to catch her disease very early and now feels a tremendous responsibility to help other women become more informed about breast cancer, the most common cancer among American women, except for skin cancers. It is also the second leading cause of cancer death, just behind lung cancer. According to the American Cancer Society, 1 in 8 women will be affected by breast cancer. Of those cases, only 10 percent are family-related.
“That means that 90 percent of women who get breast cancer have no family history, and I am one of those women,” says Schaeffer. “I’m the poster woman for the type of person who is not supposed to get breast cancer. Many women can get lulled into this false sense of security based on some of the literature out there — if you don’t drink; if you exercise; if you have children while under the age of 30; if you nurse your children; if you have lower body fat; if you eat healthy, low fat, lots of fruit and vegetables. According to all of that, I was not supposed to get breast cancer.”
And yet, she did. Schaeffer had her first mammogram at the age of 37, motivated by a friend who was diagnosed with breast cancer at that age, even though the recommendation for a baseline screening for a mammogram is age 40. “That was my ‘aha’ moment,” says Schaeffer. “I realized that if my friend could have breast cancer at the age of 37 so could I, and so could any woman at almost any age.”
That mammogram was fine, and her radiologist told her to come back in three years, when she was 40. “At that time, they found microcalcifications in my breasts,” says Schaeffer. Microcalcifications are tiny flecks of calcium. Some types and patterns can be indicative of the presence of an early breast cancer. Schaeffer was also told that she had dense breast tissue, making her mammograms more difficult to read. The microcalcifications were removed. The biopsies done on them indicated that Schaeffer was at a higher risk for breast cancer and needed both a mammogram and sonogram once a year.
Schaeffer followed her doctor’s orders and for nine years, everything was fine. And then, in 2008, when she was 49, she went in for her routine annual mammogram. “The radiologist felt a thickening on my scar from the surgery I had had nine years before to remove the microcalcifications,” she says. “Though my mammogram that day had come out clear, and I had also had a sonogram six months previously that also came out clear, my radiologist just had a gut feeling that something was wrong. I had done breast exams on myself and never felt anything. Most women think that if they have breast cancer, they’ll feel something, something that feels like a pea or a lump. But in my case, there was nothing I could feel.”
The radiologist performed a new sonogram followed by a biopsy. And then, the next morning, Schaeffer got the call that every woman dreads. “I remember it very clearly,” she says. “I was walking my dogs outside, and I got the call on my cell phone. ‘Are you alone,’ the radiologist asked me. ‘Can you talk?’ And then, she said, ‘You have breast cancer.’ I had my five minutes of crying, and then I called my husband at work and asked him to come home. My next call was back to the radiologist. ‘What do I do next?’ I asked her. I didn’t know what to do or where to go.
Her husband, Mark, to whom she has been married 29 years, is an internist in Princeton. She says the fact that he is a doctor was very helpful to her. “Mark said to get a number of opinions and to ask a lot of questions so I could make an educated decision for me.”
And asking questions is just what Schaeffer is trying to tell other women in her situation to do. “Today’s diagnostic tools are wonderful, but they don’t always catch 100 percent of the cases, and they are not always accurate,” says Schaeffer. “That is why every woman needs to know her own breasts and risk level and needs to listen to her body. I was extremely lucky that my radiologist put together the thickening of my scar with her own gut instinct to order further tests because she felt something was not quite right. There’s a reason why it’s called the art of medicine. It’s not always black and white. It’s years of experience, knowledge, feel, touch, and listening to patients.”
Schaeffer chose to have a mastectomy with immediate reconstruction. She feels privileged to have had who she describes as “the best” doctors available to her — Rachel Dultz to perform her surgery, and Marc Alan Drimmer to perform her reconstruction. Dultz is medical director of the Breast Health Center (BHC) in East Windsor, where she also has a private practice. The BHC is part of the University Medical Center at Princeton. Drimmer is a plastic surgeon with a private practice in Princeton on Route 206. He specializes in breast reconstruction, is chief of the department of plastic surgery at the University Medical Center at Princeton, and director of the Princeton Breast Institute, a nonprofit focused on breast health education.
After her own breast cancer diagnosis and surgery Schaeffer felt compelled to talk to other women who were going through the same journey. “The more women I met, the more I felt that we needed even better education for early detection. We were asking similar questions.”
Schaeffer now acts as an informal counselor to some of Drimmer’s patients. “Amy is wonderful and warm and so reassuring to other women who are going through a very frightening time,” says Drimmer. “Just talking to her as a resource can help put them at ease and give them options to consider with advice from someone who has been down that road themselves and can give them guidance.”
As the first stage of what Schaeffer hopes to be a widespread, multi-faceted breast cancer education initiative, she and a small group of other breast cancer survivors are putting together a guide that gives women the information they need to ask the right questions. “Our goal is to help educate women on breast health. We want to help them understand what they should be discussing with their doctor, starting at what age, and finally what they can do. We want to help women have productive conversations with their doctors. The driving force behind this education is that if they do develop breast cancer, we want them to catch it early. The earlier breast cancer is caught the better the prognosis. Women have to overcome their fears and be their own health advocate. Having this practical guide is one small step to help them do this.”
The group has a vision that this guide will become available to all women through the frontline doctors who see them — their internists and gynecologists. Dultz is a strong supporter of this guide as another tool for women to use to be their own best advocate.
“Mammograms detect 90 percent of breast cancers and are still the best screening tests we have,” says Dultz. “But if you notice a change in your own body, go to your doctor, and if you don’t like the answer from that doctor, go to another doctor. Get another evaluation. Listen. If you know something isn’t right, pursue it and ask questions.”
The guide advises women to be proactive with their breast health and with their overall health starting very early, in their teens and 20s. It tells them that they need to know their family history, what is normal for them, and to know what questions to ask their health care providers. Do they have dense breasts, for example. When is it the right time for them to start getting mammograms and other diagnostic tests. It tells them to perform breast self-exams, underscoring that you know your body and have a gut feel if something is wrong. the guide encourages women to listen to their bodies — you know what is normal and what is not. It advises them to ask for a copy of their mammogram report and understand it.
As the mother of two daughters, Schaeffer understands the importance of getting women to take charge of their health early in life. Her family has lived in West Windsor for 23 years and Jessica, 26, and Rachel, 24, both went through the WW-P school district and attended High School North. Jessica graduated from Syracuse University with a degree from the Newhouse School of Journalism and is completing a master’s degree from the Johns Hopkins School of Public Health. Rachel received a degree as a registered dietician from Indiana University in Bloomington, Indiana, and is currently working at a wellness center.
Schaeffer was raised in Old Bridge. Her mother was a realtor and her father had a company that dismantled chemical and pharmaceutical facilities and did environmental remediation. She majored in marketing and industrial relations at Syracuse University Business School, where she also met her husband. Schaeffer worked with her dad in his business for 18 years, starting their marketing department and handling new business development and sales.
Schaeffer is convinced that she is doing well today because she asked the right questions and stayed on top of her health. Now she wants to help other women do the same. “If I can help save the life of one woman, I’ve done something very important,” she says. “Breast cancer is beatable, but it has to be caught early. We need to empower women not only know what questions to ask but also when to ask them.”
