By Euna Kwon Brossman Special Writer
The questions
survivors ask
Long after the radiation and chemotherapy treatments are over, women who survive breast cancer know that their lives will never return to the “normal” they knew before their diagnosis.
Their lives are charted by an increased vigilance in their follow- up visits with doctors and regular diagnostic tests.
They may bear physical and emotional scars and many have lingering questions — why did I get sick, how can I make sure I stay healthy, what are some of the effects my treatments could have?
Women who have daughters and granddaughters may be fearful that their loved ones may have an increased risk of breast cancer.
The issue of survivorship is the next new big thing on the breast cancer horizon, according to Dr. Rachel Dultz, who is medical director of the Breast Health Center in East Windsor, part of Princeton HealthCare System’s University Medical Center at Princeton.
”The good news is that more people are surviving cancer, and all people with cancer are living longer,” says Dr. Dultz. “We’ve gotten so good at taking care of it; millions of survivors want to know what’s next. Hospitals, cancer treatment centers, groups like Susan G. Komen for the Cure understand that the issues of breast cancer don’t stop with treatment and they have to figure out survivorship protocol.”
There are 2.6 million breast cancer survivors in the United States today. There has been tremendous progress in treatment and education. The waving ribbons of pink that mark October as National Breast Cancer Awareness month have become as much a color of the season as the reds, oranges and yellows of peak fall foliage. Even so, breast cancer is still 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. This year, about 230,480 new cases of invasive breast cancer will be diagnosed in women. About 39,520 women will die.
The value of early detection
Amy Schaeffer, 52, of West Windsor, feels tremendously lucky that her illness was caught early, especially since she feels that she was the perfect poster woman for the type of person who is not supposed to get breast cancer.
”Many women get lulled into this false sense of security based on some of the literature out there,” says Ms. Schaeffer. “If you don’t have a family history, if you don’t drink, if you exercise, if you have children while under the age of 30, if you nurse them, 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, three years ago. She vividly remembers the day she found out. “I was walking my dogs and I got the call on my cell phone. “‘Are you alone?’ my radiologist asked. ‘Can you talk? And then, 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.”
Ms. Schaeffer’s husband, Mark, an internist in Princeton, counseled her to seek a number of opinions and to ask a lot of questions, before making a decision that was right for her. Ms. Schaeffer opted for mastectomy with immediate reconstruction. Her surgeons were Dr. Dultz and Dr. Marc Alan Drimmer, a plastic surgeon with a private practice in Princeton.
Dr. Drimmer is chief of the department of plastic surgery at UMCP and also director of the Princeton Breast Institute, which focuses on breast health education.
”Curing the cancer is our first goal, but when women are undergoing surgery for breast cancer, they want to know they can come out whole again. They don’t want to feel they are no longer women because they’ve lost a breast,” explains Dr. Drimmer. “If they feel better about themselves, I honestly believe that helps the treatment of the cancer. Attitude is so important in the healing process.”
Ms. Schaeffer acts as an informal counselor to some of Dr. Drimmer’s patients.
”Amy is wonderful and warm and so reassuring to other women who are going through a very frightening time,” says Dr. 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 a breast cancer survivor, Ms. Schaeffer says she does feel a tremendous responsibility to educate other women.
”Some of the information does an injustice for women,” she says. “If they fall into what they feel is a ‘healthy’ category, they may end up skipping their mammograms for a few years. Some who do get breast cancer may beat themselves up about it and say oh, I was overweight, I didn’t eat right. And they blame themselves. Other women I know go in to get their mammogram once a year, are told they are fine, breathe a huge sigh of relief and then don’t think about it for another year. That has to change.”
A new grassroots movement:
Woman to Woman
Ms. Schaeffer and a small group of other breast cancer survivors are putting together a multi-faceted breast cancer education imitative, the cornerstone of which will be a guide that gives women the information to ask the right questions at the right time.
Among other things, it will recommend that women:
• Ask their doctors, while still in their 20s, what their risk factors for breast cancer? How can I be proactive and monitor my breast health? Do I need genetic testing?
• Ask for a copy of their mammogram report after every mammogram, read it and understand it.
• Know if they have dense breasts, that means their mammograms are more difficult to read.
• Talk to their doctors about what other diagnostic tools might better help diagnose and detect an early breast cancer.
• Know their breasts when they are healthy. Know their feel, what they are like during their periods, the changes and when they go back to normal.
• Have a baseline mammogram at the age of 40 and then every year thereafter. If there is a family history of breast cancer, ask about an earlier baseline test.
”Their approach is great,” says Dr. Dultz, who supports Ms. Schaeffer’s plan to make this guide eventually available to all women through the frontline internists and gynecologists who treat them.
”There is a lot of information available today and some of it can be overwhelming and confusing, especially when there are new studies released before the physicians have a chance to read and discuss the information. Guidelines are issued by one set of experts and then contradicted by another set of experts. The confusion over the age for baseline mammograms is just one example of this. The recommended age for a baseline is 40 and then every year thereafter, and that hasn’t changed.”
”Our goal is to help educate women on breast health,” says Ms. Schaeffer.
”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.”
UMCP’s Breast Health Center is located at 300B Princeton-Hightstown Road, East Windsor Medical Commons 2, East Windsor. Phone: 609-688-2700.
Another valuable resource if the YWCA Princeton’s Breast Cancer Resource Center. On the Web: www.bcrcnj.org.
