Michelle Malone of Southaven is a breast cancer “previvor.” It’s a term typically not heard often – even during October, a month designated for breast cancer awareness – and it refers to a person who carries the gene mutation for cancer but has not yet developed the disease.
Although many previvors struggle with anxiety, depression and tough treatment choices, there are few resources for them in the Mid-South. So Malone and fellow previvor Irene Rodda of Collierville decided to do something about it.
In April, they started the Memphis chapter of the group FORCE (Facing Our Risk of Cancer Empowered), the only national nonprofit organization dedicated to improving the lives of people affected by hereditary breast and ovarian cancer.
“There are women out there asking, ‘What do I do with this four-letter, 10-digit mutation I have?’ FORCE is here to educate people on what it means to have a genetic predisposition,” Malone said.
According to FORCE research, more than 2.3 million women may be at increased risk for breast and ovarian cancer because of their family history. Malone, 28, used to be one of them. She has Cowden Syndrome (CS), a hereditary condition that causes multiple types of benign tissue overgrowth. It also carries a high risk of breast cancer: about 30 to 50 percent of women with it will develop breast cancer, compared to a risk of about 12 percent for women in the general population.
Last year, at the advice of several physicians, Malone took her statistical fate in her own hands and had a bilateral prophylactic mastectomy, a preventative mastectomy that significantly decreases the risk of breast cancer. Although it reduced her breast cancer risk to about 2 percent, it was a difficult decision that evoked mixed reactions from her friends and loved ones – some applauded, others protested.
“To hear someone essentially say, ‘I’m going to cut off a completely normal body part just because I’m scared’ is hard for some people to understand,” she said. “At first my mom thought I was insane. And at church, I often got the question, ‘Why would you not trust God?’ But I believe God has given us these resources, so why not use them? God wants us to help ourselves.”
Conflicted and struggling, she looked around Memphis for support and found nothing.
“Every support group in the Memphis area was for breast cancer survivors. I thought, ‘There’s nobody here who understands what I’m going through.’ I didn’t really feel comfortable in those groups,” Malone said.
She met Rodda through the FORCE website (facingourrisk.org), which has several channels for connecting with others, including message boards and a list of previvor blogs. As the two women developed a mutual appreciation for each other’s blogs, their friendship grew.
Rodda, 33, has a BRCA2 gene mutation. The BRCA1 and BRCA2 genes are tumor suppressor genes that help prevent uncontrolled cell growth. According to FORCE research, there are more than 750,000 men and women in the United States who carry a BRCA gene mutation, which puts them at a greater risk for certain types of cancer.
While experts don’t agree on the exact figures, estimates range from a 55 to 85 percent risk of breast cancer and up to a 50 percent risk of ovarian cancer for women with a BRCA mutation.
The statistics, combined with her family history, propelled Rodda to schedule a bilateral prophylactic mastectomy for January. Both her mother and her late grandmother had breast cancer.
“My mother was 9 when her mother died at 36,” said Rodda, who has a 3-year-old son. “Looking at my son, I don’t want to live with that fear every day. I want to make sure I’m here to watch him grow up.”
As Malone and Rodda discussed their experiences, they knew there must be other people in the area who feel like ticking genetic time bombs. So they turned to the national FORCE staff for assistance in starting the Memphis Network.
At the moment, meetings are quarterly, although Malone says they hope to have more as awareness of the group grows. Everyone is welcome, including supportive friends and family members and men, who also can be genetically predisposed to breast cancer.
Meetings are low key, Malone said.
“We’re very informal,” she said. “You can come and sit and not say a word. We’re just there to sit and talk or answer questions. We discuss everything from insurance to genetics. Mainly we’re just here to listen and help.”
For more information on the FORCE Memphis Network, visit facingourrisk.org/support/local_groups/tennessee-memphis.php. Other resources include The World According to Michelle, a blog by Malone about her life as a previvor that can be found at tatatothegirls.blogspot.com. Also, Rodda’s blog, Tea With Frodo, found at teawithfrodo.blogspot.com, is about motherhood, crafting and life in general, including her previvor perspectives and surgery plans.