Sick and Scared, They Survived ; Diagnosed With Breast Cancer at 35 and 26, Maine Women Share Their Stories in a Collection Titled, ‘I’M Too Young to Have Breast Cancer!’
t 35, Amanda Henson was looking forward to a new chapter in life. She had just gotten married five months earlier, was starting a new job and planning to have children in a year or two.
Henson, a longtime health insurance professional, says she always tries to do the “right thing,” so when she realized she would have a one-month gap in her medical insurance due to her job change, she made sure to have her annual physical right before the lapse.
The doctor checked Henson thoroughly, including a manual breast exam, and everything was normal. But the very next month, Henson found a lump while driving from Boston to her new job in Portland. The marble-sized growth hurt when she touched it. Her husband, John, an emergency room doctor, told her it was probably a cyst and nothing to worry about.
“Usually a malignancy doesn’t hurt, but a cyst does,” says Henson, now living in Falmouth and working part-time as a manager for Maine Medical Center Physician-Hospital Organization. “Plus because of my age I didn’t get too worried.”
INITIAL RESULTS NORMAL
When her health insurance kicked back in, she made an appointment with a family practitioner, who also told her that the lump was probably a cyst. He tried to aspirate it – withdraw fluid from the lump with a needle – but it didn’t collapse as cysts are supposed to. After waiting three days for her test from the pathology lab, Henson’s results were normal.
But by April, the lump hadn’t gone away, and the doctor said to check back in a month. In May, she called the doctor and told him she wanted a second opinion. She made an appointment with a surgeon to have the lump removed in mid-August. But the lump continued to be painful and grew to about the size of a walnut, so she called the surgeon’s office and pleaded to have her date moved up. The only date available was July 19, the day after her 35th birthday.
After waiting over a weekend for her results from the surgery, Henson received devastating news – the lump she had discovered six months earlier was breast cancer, and it was spreading fast.
Suddenly, Henson’s efforts to build a stable life were jeopardized by a disease that rarely affects women her age.
“(John and I) dated for six years,” said Henson, now 43. “Once we got married, I figured other than encountering possible fertility issues that I would be able to have children, that when I was ready I could just have them.”
An oncologist suggested a bone marrow transplant, which would have left her infertile. Faced to choose between the best treatment and the possibility of having children, Henson sought a second opinion and met with specialists in Boston. She chose a radical mastectomy and immediate reconstruction followed by four months of aggressive chemotherapy and six weeks of radiation, which would still leave her with the ability to have children.
“When I asked the doctors whether I could have kids, I’m sure they thought I was crazy,” recalled Henson. “They told me that there were ‘bigger issues at hand.’ “
But Henson says focusing on her goal of having children helped her get through the cancer, and in August 1999, more than two years after she completed treatment, she gave birth to healthy twin boys, Ayden and Bryce, now 5.
“I still deal with some anxiety,” said Henson. “I wonder what will happen to my boys if something happens to me again.”
IT’S DIFFERENT FOR YOUNG WOMEN
While only 5 percent of breast cancer patients are younger than 40, that translates to 11,000 cases among the 200,000 American women diagnosed per year. An estimated 1,300 women under 40 will die of breast cancer by the end of this year.
While breast cancer is a frightening and life-threatening disease at any age, it carries different risks and dilemmas for women who are in the prime of their lives. Their career goals, health insurance coverage, ability to have children, body image, sexuality and faith can all be impacted by the disease.
In response to the lack of information and support for young women with breast cancer, New York writer Beth Leibson-Hawkins recently published “I’m Too Young to Have Breast Cancer!” (Lifeline Press), a collection of stories about 16 women who survived breast cancer before the age of 40. Henson and another Maine woman, Barbara Binette of Biddeford, are featured in the book.
Leibson-Hawkins cast a wide net in researching breast cancer in young women, sending e-mails to survivor networks and health groups looking for women to interview. She says she found more women than she expected, and selected those with compelling stories surrounding specific topics to feature in her book.
FERTILITY A TOP CONCERN
“I really want women to find someone they can relate to in the book,” said Leibson-Hawkins, who was inspired to write the book in 1996 after her friend was diagnosed with breast cancer at age 27. “A lot of the women I talked to said they were really lonely when they were diagnosed this young. The goal of the book is (so) women who read it won’t feel quite as lonely. . . . It’s also useful for friends and family members of people who are diagnosed because it gives you an idea of what other people have done to support these women.”
Leibson-Hawkins’ friend eventually recovered from breast cancer and founded the Young Survival Coalition, the only international nonprofit organization dedicated to the concerns of women under 40 with breast cancer. Recently, 657 members of the coalition were surveyed in one of the largest studies ever to gauge fertility concerns among young breast cancer patients by Dr. Ann Partridge and her colleagues at the Dana-Farber Cancer Institute in Boston.
The survey found that 57 percent of the patients were somewhat or very concerned about infertility, regardless of their age or level of cancer, and almost a third said such worries affected their decisions about treatment.
While mastectomies and other surgery and radiation treatment do not impact fertility, chemotherapy may affect a woman’s ovaries and cause her to begin premature menopause, said Partridge.
There is little research to date on issues faced by younger breast cancer patients because for decades, studies have focused predominantly on improving survival rates, said Partridge. However, she says her research shows that women in their childbearing years are concerned about more than their own survival.
“We observed in the clinic that many women are concerned about this,” said Partridge of reasons for conducting the study. “I have seen women who would definitely sacrifice potential benefits in their own survival to increase their chances in not becoming infertile. Some women who I’ve recommended chemotherapy for to obtain a survival benefit have said ‘no thank you’ because they are so worried about becoming infertile with treatment. It’s a highly emotional, personal, charged decision.”
DISCOVERY AND DIAGNOSIS
Partridge is now working on research to learn more about how chemotherapy affects fertility, and what the risk of recurrence is for women who become pregnant after having breast cancer.
“I think it’s really important to try to figure out the risks better,” said Partridge. “To date, there is no data that says that pregnancy after cancer affects the probability of relapse, yet many patients are told by their doctors that that is a concern.”
Binette was just 26 when she was diagnosed with breast cancer, and her fertility was not something she had questioned before. Already, she and her husband, Leo, had faced hard times – teen parenthood, dropping out of high school and working second and third shifts at factory jobs. At the time of Binette’s diagnosis, the couple was planning on having one more child, hoping for a boy in addition to their two daughters, Brooke, 8, and Lacey, 4.
“I was just beginning to go through womanhood,” recalled Binette, now 41. “The surgeon said we shouldn’t have more children. The oncologist said we could wait five years, but if I did get pregnant I would worry about getting cancer again. . . . That was really hard to take at 26.”
Binette found the lump while shaving under her arms in February 1990. She felt a pea-sized lump in her left breast, and although it was barely noticeable, Leo urged her to call their doctor immediately.
The family doctor suggested a mammogram to rule out any problems, and when Binette called for her results two days later, all the nurse would say was that the doctor would return the call. When the doctor called a few hours later, he told her that he had made an appointment for her the following week to see a breast surgeon.
While her doctor had been vague about what was wrong with Binette, the surgeon was not. He held her mammogram up to the light, pointed at the lump and told her it was probably breast cancer and she would need to have a biopsy.
“I felt so desperate,” recalled Binette. “I thought I had to act instantly or I was going to die.”
NO ONE TO RELATE TO
The biopsy confirmed that Binette had breast cancer, and she and Leo struggled with how to break the news to their daughters. Leo told the girls that their mom was very sick, while the family planned for Lacey’s fifth birthday party the following weekend.
As she prepared for her mastectomy, Binette grew angry and sad.
“When you’re 26, you don’t think about dying,” she said. “You think you’re going to see your kids grow up.”
Binette was in the hospital for five days for her surgery, and Leo visited her every day and even washed her hair, which impressed the nurses. When Binette returned home, she struggled to look at the scar where her breast used to be.
While she went through chemotherapy treatment and dealt with losing some of her thick hair, Binette continued to sink deeper into depression. At 8, Brooke didn’t understand why the family couldn’t have fun on weekends anymore, and Lacey grew clingy toward her mother.
Binette joined a support group at her hospital for women with cancer, but she found little in common with the other patients, all over the age of 40.
“The women were older and some were not doing well,” said Binette. “There was no one there with young children, and their issues had nothing to do with what I was dealing with. I had no one to relate to.”
Leo, who cared for the girls when he wasn’t working and accompanied his wife to every doctor’s appointment, tried to keep the family’s spirits up while he worried about a future as a single parent.
“At one point, I said I wanted to die,” recalled Binette. “(Leo) said, `You have two girls and you have me. If that’s not good enough for you, then I have nothing to offer.’ It was an epiphany for me. I thought, if my husband can accept me, why am I feeling sorry for myself?”
From that point on, Binette focused on beating cancer for the sake of her family. When she was feeling well enough, they went to the beach to take their minds off Binette’s cancer treatment.
“It was so soothing, watching the kids play,” recalled Binette. “That was my therapy.”
After she finished treatment, Binette’s oncologist suggested reconstructive surgery. At the time, Binette resisted the idea of having more surgery, so she wore a prosthesis to appear balanced. But after a year, Binette grew tired of her scar and decided to have a procedure using her stomach tissue to reconstruct her breast instead of an implant.
“Before the surgery, every day I felt like a cancer victim,” said Binette. “I think if I didn’t have the reconstruction I would have gone into more depression.”
Just as Binette began to feel whole again, she was hit with more bad news. Six weeks after her reconstruction, Binette’s plastic surgeon told her she had precancer in her right breast. Rather than risk another bout of cancer and more chemotherapy, Binette opted for another mastectomy, this time with immediate reconstruction. She chose a saline implant instead of going through an eight-hour surgery using her back muscles.
NEW PATH AFTER CANCER
The experience of overcoming cancer in her mid-20s made Binette take another look at her options in life. Before the breast cancer, Binette was focused on providing for her children and she assumed she would continue her education after they got older. But after her reconstruction surgery, she started going to night school and completed her high school education. She enrolled in classes at the University of Southern Maine, including medical transcriptions, and ended up working for one of the surgeons who had treated her during her cancer.
Today, Binette does accounting work at NorDx Laboratory in Scarborough. Her daughter Brooke, 23, recently graduated from college and Lacey, 19, is attending college in Florida.
Binette has suffered many complications from her reconstructions and has had more than 20 surgeries to make her breasts look normal. She recently recovered from what she hopes is her final surgery, which removed her implant and reconstructed her breast again using her own tissue.
“My body looks like it’s been through a battlefield,” said Binette. “I’m just fortunate that I caught (the cancer) at the right time and I survived it. My disfigurement is hidden, so I don’t think about it on a day-to-day basis.”
When Binette was asked by Leibson-Hawkins to contribute to her book a few years ago, she was honored to share her story.
“This is going to be so beneficial to young women,” said Binette of Leibson-Hawkins’ book. “When I was diagnosed, I remember going out to get books on cancer. There was little about breast cancer, and there was nothing about young women and breast cancer. . . . When I read the stories in the book now, I’m in amazement. I was not alone, and it was normal to feel the way that I did.”
Binette has realized how much her experience with cancer has strengthened her 21-year marriage with Leo, who she first met in eighth grade.
“When we went through this, I didn’t know what to expect from him,” said Binette. “He really took care of me and made me look at myself. He encouraged me to be grounded, focus on the future and not wallow in self-pity. . . . He was just there to cushion everything. I don’t know what I would have done if I wasn’t married.”
For Henson, surviving breast cancer has made her more acutely aware of her health and how lucky she is to have the family she always dreamed of.
“A lot of women think, ‘This can’t happen to me’ because breast cancer isn’t in their family or they have no risk factors,” said Henson. “But breast cancer doesn’t follow rules.”
Staff Writer Selena Ricks can be contacted at 791-6451 or at:
sricks@pressherald.com