entire family opts for double mastectomies and more

After a year filled with crying and laughter, physical pain and emotional healing, Daphne Sanders turns to her daughters and tears fill her eyes. “I’m so sorry for giving this to you. I’m sorry for passing it on,” she says.

Daughter Karen, 30, tells her not to worry about it. She, too, starts to cry. Daughter Sheryl, 33, a mom herself, sits quietly on the couch, her eyes moist.  All three London women have had double mastectomies. Sanders and Sheryl have also had their ovaries removed.
All three have had genetic testing for a mutation on one of their genes that almost guarantees they’ll get breast cancer before age 50 — the BRCA2 gene.

People with the mutation have a 95% chance of getting breast, ovarian, colon, pancreatic or skin cancer before age 50. Women with it have a 65% to 75% chance of getting breast cancer sometime in their lifetime.

For women with a family history of cancers, a blood test can be done to determine if they carry the mutation. “We don’t take anyone in our lives for granted because we all dodged some major bullets. We’re all here and doing well,” says Sanders, 54. “We’ve always been close but we are such a more close-knit family now. We just don’t take anything for granted. “If us telling our stories educates people and causes at least one person to take a step and saves someone’s life, then that’s what I want.” —

It was May 8, 2004. Daphne Sanders returned from visiting Sheryl and her new daughter and plopped down on the bed, tired. The family dog nudged her breast area and, as she reached for the dog, she felt a tiny lump. She was 50. “I went to the doctor the next day. I knew,” Sanders says. Doctors found a lump so tiny they had to enlarge the MRI scan several times. It was cancer.

“I bought a wig, I prepared myself for chemotherapy. The thought made me sick, but I prepared,” Daphne says. After surgeries to remove lymph nodes and more than two dozen radiation treatments, Sanders’s oncologist said chemo wouldn’t be required. Her cancer would be treated with different drugs, which she was on for three years. Cancer-free by 2008, Sanders decided to get tested for a mutation on her BRCA2 gene. Her tests were positive.

“I immediately decided to have a double mastectomy and undergo reconstruction. I also had my ovaries removed to prevent ovarian cancer. I got lucky. Did I want to be hit a second time? No.”  She told everyone in her family about the mutation. Her cousins were all clear. But both her daughters tested positive for the mutation. —

After some small talk, Karen’s doctor dove right in. “He said ‘yes, you have the mutation,’ ” Karen says. “He said I had a 65% to 75% chance of getting breast cancer in my life, and a 95% chance that I’d get cancer before the age of 50. My eyes went big and I just started crying. What was going to happen to me? I thought. I put my head on my mom’s shoulder and I was bawling.

“That’s not an if, that’s a when.”

She asked a doctor what he’d do if his 29-year-old daughter came to him and told him she had the BRCA2 mutation. “He just looked at me and said ‘immediate double mastectomy and reconstructive surgery.’ ”

Last April, she had both breasts removed and reconstructed in a 10-hour surgery. She’s waiting for the ovary removal until after she has children. “People said it was radical, but you don’t know unless you’re in that situation,” she says of the surgery. “I was bruised from the neck down but I’m so happy with the results.

“A mastectomy isn’t that radical. Why would I want to wait until I get cancer? I see this genetic test as a blessing because whatever answer you’re going to get, it’s going to be good. Either you don’t have the mutation and you’re okay or you do have it and you can do something about it.” —

At age 33, Sheryl is raising three kids under five, working and dealing with menopause. She had a double mastectomy and her ovaries removed in January. Two weeks ago she had nipple reconstruction and new implants put in. “I think I’ve had a more difficult time than my sister or my mom because I have three young kids and they’re my focus. I’m trying to raise them and go through menopause at the same time,” she says. Her daughters are five, three and one. Her husband drives truck and is sometimes away from home for long stretches. Sheryl began menopause because the removal of ovaries causes hormonal changes and symptoms of menopause. The symptoms last for 10 years and are often more severe than natural menopause because they’re brought on suddenly.

“For me it was 48 hours after surgery and then, boom. Who am I?”

Since her surgeries, people tell her she looks great. She thinks she looks ugly. Her new breasts feel foreign. She’s happy one moment and sad the next, then angry, then sad again. “Losing your breasts is a big part of a woman but I didn’t think about my ovaries that way because they’re not an external feature. I was happy to get rid of them because it reduces my cancer risk.” The emotional pain of losing her breasts, losing her ovaries, beginning menopause and dealing with the risk of breast cancer have taken a toll, but a weight has also been lifted.

“I’m really happy. I didn’t have three kids to have someone else raise them — and 99% of me doing this is for my girls. My mind is at ease but is it a huge adjustment? It sure is. Menopause really does add a twist. “It’s not that I regret it, it’s just that it’s not easy.”

She struggles with the fact that at least one of her daughters will probably have the same mutation she and her mom and sister have.
“It makes me sort of sick to my stomach to think that at least one of them has it. Sick. It would almost have been easier if I had sons,” she says. —

The hardest thing for all three women is judgment. Some women have criticized their decisions as radical. Others have said they wouldn’t ever get the genetic test because they wouldn’t want to know if they have the mutation. “I know everyone has to decide for themselves but I would never want my daughters to go through breast cancer,” Sanders says. “It was really hard to see the emotional pain and their tears. “There’s life after breast cancer and there’s good life after breast cancer. Even after a mastectomy or a double mastectomy, it’s not the end of the world. Seeing my girls and knowing that they’ve reduced their chances (of getting cancer), it makes sense.”

Any health-care practitioner Sheryl has talked to, from doctors to nurses, have applauded the three women. “Anyone in health care knows that it’s better to be proactive — it’s just the general public that thinks it’s radical,” Sheryl says. With genetic testing, mammograms and MRIs available, Karen says it’s important for women to know the facts. “Don’t judge,” she says. “It’s a matter of life and death and I want to be here when I’m 70, 50, 40. I want to see my grandchildren grow up. That’s why I did what I did.”

The Cancer Gene

5% to 10% of breast cancers are caused by genetic mutations on two genes, called BRCA1 and BRCA2.

Those genetic mutations account for about 2,000 new Canadian cases of breast cancer every year.

Women who carry the genes are more likely to develop breast cancer and to develop it at a younger age.

The genes carry increased risk of ovarian cancer as well as colon, pancreatic and skin cancers.

A blood test can be done to check for the genetic mutation.

The genetic test cannot definitively tell a woman if she will develop cancer so getting the test is a difficult and personal decision.

    The London Free Press
    Sat Oct 17 2009
    Page: A8
    Section: City & Region
    Byline: BY KATE DUBINSKI