More than 2.5 million Americans are breast cancer survivors.
Meghan Malley wants her name on that list.
She's networking, rallying and blogging publicly about her disease to bring attention to the times when breast cancer isn't a lump. For 5 percent to 10 percent of breast cancers, the warning signs may be a change in the feel of the breast or breast skin that becomes dimpled, puckered or reddened.
“I want women to know that breast cancer doesn't always begin with a lump,” said 29-year-old Malley, whose hair has grown back pixie-cute after chemotherapy. “I want people to be aware that unfortunately you're never too young to get breast cancer.”
Following a hunch
During a monthly self-breast exam in January 2010, Malley sensed something different about her right breast. She had experienced some jolts of pain in the breast, and felt a denseness, almost a change in its weight. After an ultrasound and mammogram, doctors said she had fibrocystic breasts, which can make breasts painful and lumpy in response to women's changing hormones, but isn't cancerous.
A little over a year later, Malley was undergoing fertility treatments. She still was concerned about the changes she felt in her right breast and pressed her doctor for additional testing. She had an ultrasound, which showed distinct changes, but doctors thought it might be related to the hormones she was receiving for fertility treatments. But to be sure, she underwent a biopsy.
On March 23 — two days after her 29th birthday — she learned that she had invasive lobular breast cancer, which occurs in about 5 percent of breast cancer patients. She started chemotherapy one day after she learned additional tests had detected cancerous spots on her spine, making her cancer Stage 4 — the deadliest of cancer diagnoses.
Invasive lobular breast cancer forms in the milk-producing glands and causes an area of thickening in parts of the breasts, or sensations of fullness or swelling. It may also make the skin over the breast dimple or thicken.
Malley's oncologist, Dr. Lawrence Flaherty of the Karmanos Cancer Institute, describes lobular breast cancer by likening breast tissue to spaghetti.
“Most breast cancers are like a meatball in a bowl of spaghetti, so they're easy to find,” said Flaherty. “Her particular type is more like a glob of meat sauce in a bowl of spaghetti.”
Malley had a double mastectomy at Beaumont Hospital in Royal Oak, Mich., in October after undergoing 15 rounds of chemotherapy to shrink the cancer in her right breast and take out the spots on her spine. Malley will take tamoxifen, a drug that inhibits estrogen's impact on breast tissue, for at least the next five years.
The survival rate for women diagnosed with Stage 4 breast cancer is about 23 percent after five years.
“She's gotten an excellent response in her treatment and her cancer is in remission,” said Flaherty. “And based on that, her outlook is certainly a more favorable one.
“I have people in my practice who are five and 10 years and more years out with that stage of the disease.”
Flaherty says Malley may be a candidate for clinical trials of new drugs down the road. In 2010, about 27 percent of breast cancer patients at Karmanos participated in some 30 clinical trials involving drugs and other research.
Getting the word out
Malley organized a support group meeting for young cancer survivors like herself at the Karmanos Institute's Weisberg Cancer Treatment Center in Farmington Hills, Mich., with Kathleen Hardy, an oncology social worker, as facilitator.
“The issues are so different when you're young,” said Hardy.
“As much as family and friends love and care for you and support you in every way, they don't really get it in the same way as the others with cancer get it.”
Hardy said numerous studies show the benefit of support groups.
“The quality of their life is better. They have fewer side effects. They share a lot of practical information, feel less alone, feel less frightened,” Hardy said.
Hardy counsels her Stage 4 patients to think of the diagnosis as a chronic illness rather than a death sentence.
“The encouraging thing is that over the last five or 10 years is that many new therapies have entered the field,” said Flaherty.
“We hope to see many in the next five or 10 years to personalize therapy better and for outcomes that are more favorable, even when they start out in an unfavorable circumstance.”
Meghan Malley has been blogging about her cancer experience since March at letsbeatthisthing.weebly.com.
Blogging, she says, is informative, therapeutic and connects her with family and friends who are rooting for her.
Blogs and personal websites help a patient's circle of extended caregivers cope, says Tufts University assistant professor Lisa Gualtieri, who is researching the potential health benefits of blogging.
“While we are still analyzing our survey data — the results suggest that some of the benefits that blogging about one's illness may provide are increased connection with others, decreased sense of isolation, the ability to make meaning out of the diagnosis of chronic illness, and increased sense of purpose and accountability to self and others,” said Gualtieri.
5 percent to 10 percent: In this many breast cancers, the warning signs may be a change in the feel of the breast or breast skin that becomes dimpled, puckered or reddened.