In a small subset of people, an increased risk for cancer is written into the genetic coding of their every cell.
Rhonda McCall always knew that cancer affected her family. Her father, grandmother, aunts and uncles had all died of some form of the disease — breast, uterine, prostate, stomach and blood cancers.
But McCall never suspected that the cause could be woven into her DNA.
Only after genetic counseling and testing was McCall able to identify the danger and figure out the best actions to prevent cancer herself. After testing positive for the mutated gene related to breast and ovarian cancer, the 47-year-old made the decision to pre-emptively have her ovaries removed and undergo a double mastectomy.
The surgeries will lower her chances of developing breast cancer by 90 percent and eliminate the potential to ever get ovarian cancer.
McCall struggled initially with the loss of her breasts, which she felt diminished her femininity. But months after having the surgeries, she wants to be an example of the benefits of choosing preventive measures.
“I’ve learned to be OK with it. At first, wearing clothes, sweaters that hugged the breast, I felt that when I walked into a room, everyone could see what had happened,” she said.
“But now, here they are. Here I am.”
McCall’s message is intended for all women. Already, it’s made an impact to those in her own family.
After testing positive for the mutated gene, McCall now has to worry about her family carrying it on as well. Both of her sons, Shawn Harvey and Jordan Miller, tested negative for the mutated gene.
Her daughter, Amanda Harvey, was positive.
“It was heartdropping,” Amanda Harvey said. “To an extent, I didn’t want to do it, but I told (McCall) I would. Maybe subconsciously, I knew what the results would be, and that’s why I didn’t want to do it.”
Amanda Harvey is 28 years old, still in her childbearing years. Because of that, her doctor has recommended staying vigilant to watch for any potential cancer development.
She will have MRI scans on her breasts every year until she turns 30, then alternating between MRIs and mammograms every six months. Blood and pelvic ultrasounds will look for problems on her ovaries.
In the coming years, she’ll need to make the decision whether to have the same surgical procedures that her mother did.
“Ultimately I’m glad I did it, for my kids and myself and for piece of mind for her,” Amanda Harvey said. “She wanted all three of us kids to get tested, so we knew what to expect and so we could take as many preventive measures as we could.”
McCall’s family tree is dotted with deaths from cancer. Seven people on her father’s side had been diagnosed with different forms of the disease, and six of them died.
Her paternal grandmother and an aunt had breast cancer. Another aunt had died from uterine cancer, while an uncle died from pancreatic and lung cancer. Stomach and esophageal cancer also had shown up.
Her father died from multiple myeloma, a blood cancer, in April 2014. It was his death that triggered concern from McCall’s primary care physician, Dr. Jason Rieser. Rieser suggested that McCall see a genetic counselor to learn more about her genes and the increased chances of developing cancer.
“At first, I did not want to do it. I didn’t want to know. But my doctor said I should really do it for (her family),” she said.
McCall met with Morgan Dally, a genetic counselor with Franciscan St. Francis Health Cancer Center. Dally uncovered her family’s dark past with the disease.
After examining the high number of cancer cases on one side of the family, Dally felt it was judicious for McCall to have genetic testing done. The tests would look at her cells for mutations and genetic patterns that had been found to be related to cancer.
The testing would provide some peace of mind for McCall and her children. The varied types of cancer didn’t initially point to a single genetic cause, Dally said.
But when the results came back, it revealed that McCall did have a mutation on the BRCA2 gene, which research has shown carries a greatly increased risk of developing breast or ovarian cancer.
“I had honestly been thinking that I would come back negative, and when she said I came back positive, it was a shock,” McCall said.
She and her oldest son, Shawn Harvey, met again with Dally to discuss options now that she carried the mutated gene. McCall has already had a hysterectomy and was open to the idea of removing her ovaries as a preventative measure as soon as possible.
But the prospect of having surgery on both breasts was too bitter to contemplate.
“I was adamant about not doing a mastectomy. I was very naive about the new techniques that we have today to reconstruct the breast,” she said. “I was still thinking of the old-school methods, where everything would be gone. I didn’t want to do it.”
Shawn Harvey tried to persuade her to reconsider. His mother-in-law had died of breast cancer when she was 42 years old, and he wanted his mother to be proactive and avoid a similar situation.
But McCall refused to consider it. When they left Dally’s office, she was sure she would not have the surgery. Even after Harvey drove her past his mother-in-law’s grave, pleading with her that he didn’t want to see his mother in the same place, McCall held fast.
It took an intervention of her children, husband, relatives and friends to convince her that it was the best option.
“They got together and stressed how they really thought it would be best if I did it. They didn’t want to see something happen to me,” she said. “I finally saw that they were right. I didn’t want to go to sleep every night and worry that something had come up.”
McCall made the appointment to get a double mastectomy hours later. She worked with Dr. Erika Rager, a surgeon for Franciscan Physician Network Breast Specialists, to chose a surgery that would spare as much of her breast skin and nipple as possible.
“I wanted to walk away with as much of what was given to me as possible. If I have to get man-made, so be it, but I want as much of my own as possible,” McCall said.
While waiting to get the mastectomy, Rager recommended that McCall get a breast MRI scan. That seemed unnecessary to McCall, who just months earlier had gotten a mammogram that revealed no trace of cancer.
But Rager wanted to be sure no cancer had formed. The scan showed that there was a 4-millimeter spot of cancer. One of the spots was invasive ductal carcinoma.
“I had in my mind that everything was going to be good, everything was going to be fine,” McCall said. “I held strong for my family, and didn’t want them to see that I was scared not knowing the size or the aggressiveness of it. I kept thinking that God led me to it, he’s going to lead me through it.”
The dense tissue of McCall’s breasts could have masked the cancer on the mammogram, or it could have formed after the test had been given, Rager said.
“Breast MRIs have their upsides and downsides, but certainly for screening for ladies who have a genetic mutation, they are completely appropriate and help us find things that are very small before they turn into big problems,” she said.
The diagnosis added urgency to McCall’s treatment. Her breasts and ovaries were removed during a single day in December.
While she recovered, her family tried to help her deal with her new body.
Her husband, David, had told her not to look in the mirror in the days following her double mastectomy. The coloring of her skin could look unpleasant, and the scars from the surgery were still fresh.
Whenever McCall seemed to be near a mirror, his 6-feet-4-inch frame seemed to be blocking it.
But when she caught sight of herself finally, it was shocking.
“There’s that time when you get home, before that first post-op visit, when you have the discomfort and look in the mirror and see how different you look, when you wonder if you made the right choice,” she said.
“But now I know I did.”
As part of the reconstruction, McCall had temporary implants called tissue expanders put in following the mastectomy. The implants would allow her skin to heal and stretch around them, then slowly enlarge as saline was added.
Once the implants reached the size McCall wanted, plastic surgeons would put permanent versions in.
McCall also sees an oncologist, Dr. Meghana Raghavendra, every month. She receives a hormone therapy treatment to help her body adjust to the removal of her ovaries and the loss of chemicals the organs are responsible for.
“I didn’t get to transition into menopause and post-menopause. I was thrown into it. So night sweats, hot flashes, those have come on gradually,” she said.
McCall will have to take the hormone medications for at least the next five years, with the possibility of taking them longer, Rager said. But doing so prevents her from having to do chemotherapy or radiation to treat the cancer that was found.
Preventive mastectomies have been popularized in recent years with the decision of celebrities, such as Angelina Jolie, who had a double mastectomy in 2013 after testing revealed the mutated BRCA1 gene. Jolie had surgery in March to remove her ovaries.
McCall hopes that her own story will put a more localized, realistic perspective on the treatment option.
“I don’t want them to be afraid. I want them to think that they’ll be even stronger after they get to the other side of it,” she said.
McCall considers herself lucky, even while still in recovery from multiple surgeries.
“I go every month and sit down in the cancer center. I’m healthy, I have all of my hair, I don’t have wigs, I don’t need scarves,” she said.
“My doctor says that I’m in denial, and that I don’t look at myself as a cancer survivor. I need to work on that. But it’s hard for me to say I’m a cancer survivor, when I know what I could have gone through.”
Home: Northern Brown County
Husband: David McCall
Children: Shawn and Amanda Harvey; Jordan Miller