Amanda Buss, 34, of Phillipsburg, was diagnosed with metastatic breast cancer when she was 28 years old. But from the start of her battle, she refused to let the disease that was taking over her body also take over her mind.
Buss says she remembers thinking to herself, “I’m 28. There’s no way this cancer is going to take my life from me. My daughter will not lose her mom.”
But she says that in the beginning, what she could potentially face was not always clear.
“I really didn’t want to go on the Internet to find things,” she says. “The Internet gives you the worst case scenario and then you’re thinking even more.”
She says she tried support groups, at her doctor’s suggestion, but was often made to feel like she didn’t belong, or was lost when she would attend meetings with women who were older than she was. Some didn’t believe that she was there because she had been diagnosed with breast cancer.
“You’re too young to have cancer,” one woman said to her.
She says she left the meeting thinking she would never again attend another support group, feeling like everyone there had already given up.
She then found a support group for women diagnosed with breast cancer under the age of 40 in Doylestown, Pa. Since then, the Cancer Support Community of the Greater Lehigh Valley has implemented the same group, which she routinely attends.
Buss attributes much of her success in overcoming the dark side of breast cancer to her husband, who was just her boyfriend at the time of diagnosis. She says she was worried whether or not she would still be attractive to him after losing her hair.
“Now I can have my Sinead O’Connor fantasy,” Buss’s husband told her. “Amanda, I love you for who you are and not what you look like.”
The couple was married in May.
Fertility issues have been discussed, but Buss is currently content with life with her 9-year-old daughter, who she says keeps her as busy as if she had multiple children. While she says she may not ever be able to say she is cancer-free because of her type of cancer, her doctors have worked to keep it dormant.
Finding doctors who could address her needs as a young cancer patient was also one of the struggles Buss faced.
She says one doctor would roll his eyes at her questions. Another sat her down and gave her a stack of pamphlets to sort through to choose her treatment. All had pictures of women at later stages in life.
But she wouldn’t take this lying down. She soon sought out another doctor whom she was comfortable with and felt took her seriously.
Unfortunately, this is not an uncommon occurrence with young breast cancer patients.
Dr. James Airoldi, a perinatologist specializing in high-risk pregnancies at St. Luke’s Health Network, says doctors do not always do the best job of addressing the concerns of young female patients, and that is something he works to change.
“We as doctors need to do a better job with that,” he says.
Dr. Airoldi says young women should expect their doctor to address concerns about what happens after treatment. He says youthful issues, such as fertility, are things he actively discusses.
“I don’t want women to think, ‘I’m going to get chemotherapy and it’s going to wipe my ovaries out,’” he says. “You just never know. There’s plenty of hope.”
He encourages, especially with fertility concerns, not waiting to open up the communication lines.
“The first thing you need to do is have a frank, honest, face-to-face conversation with your doctor,” he says. He goes on to say that the consultation should be at least an hour long and the doctor should be versed on articles and research.
He says there are many options for those looking to have children after cancer treatments, but the most important window to make these decisions is the period between diagnosis and when chemotherapy and radiation treatments start.
“I would use those four to six golden weeks to go through ovarian stimulation and egg retrieval,” he says of the options, which include freezing eggs for future implantation.
He also says there are numerous treatment options for women who are diagnosed while pregnant.
Don’t ask, don’t tell
Aliza Hasan, of Hackettstown, told her doctor, whom she no longer sees, of a small lump she found in her breast while she was pregnant in 2011. The doctor dismissed the lump as being pregnancy related. Hasan didn’t push the issue.
“This is my first pregnancy and I’m a little bit shy,” she says of when she first found a small lump in her breast. “So I didn’t tell anybody.”
But the lump got bigger. She brought it up again to her doctor, who then ordered testing. She then went to Lehigh Valley Health Network, where she was diagnosed and treated in 2011, during her 26th week of pregnancy. She never saw the other doctor again.
She says prior to her diagnosis, she didn’t even know what breast cancer was.
“I never had any idea,” she says. “I never knew about self exams.”
Even through her struggles of losing her manufacturing job due to being sick at work and then later her health insurance, she says, her family, faith and new choice in doctors has kept her strong.
“I’m still scared all the time my cancer is coming back,” she admits. “They give me hope.”
She is looking forward to celebrating the first birthday of her daughter, Amreem Ahmed, in October.