Jane McGovern, 46 and a mother of three, was shocked to learn that she carried a gene that greatly increased her risk of not just breast cancer, but ovarian cancer.
When Jane McGovern learned she had breast cancer at age 46, she wasn’t that surprised. After all, she knew lots of women with cancer. But the mother of three from Scituate was shocked to learn that she carried a gene that greatly increased her risk of not just breast cancer, but ovarian cancer, as well.
“There’s so much breast cancer, so I thought, ‘Now it’s my turn,’” said McGovern, a former aide for special needs children and co-writer of a new comedy about cancer. “But when I found out I had the gene, my heart stopped for a second. I had heard there was a gene for breast cancer, but I didn’t know it was linked so highly with ovarian cancer.”
Many people are unaware of this connection, but publicity is likely to increase knowledge. Last month, the U.S. House of Representatives designated the final week in September as National Hereditary Breast and Ovarian Cancer Week.
A new version of the comedy, “The MOMologues,” focuses on cancer and references hereditary cancer. And the new memoir “What We Have,” by Boston College professor Amy Boesky is the story of the effect of hereditary cancer on her and her family.
“I hope my story helps to get the word out,” said Boesky, who spoke to a gathering of a dozen women at Buttonwood Books in Cohasset. “A lot of people don’t know about the genes, and I live in the medical mecca of Newton and Brookline. The extent to which it is out there in the public consciousness is unbelievably small.”
The genetic mutations are called BRCA1 and BRCA2 (for Breast Cancer 1 and Breast Cancer 2 genes) and substantially increase the risk for breast and ovarian cancers. Discovered in 1995, these mutations occur in tumor suppressor genes and hinder the suppressor genes’ effectiveness. If a man or woman has the mutation, a child has a 50 percent chance of inheriting it. However, only about 10 percent of cancers are hereditary.
“Most cancers are not caused by genes, but if you have the genes, they significantly increase your risk,” said Dr. Laura Dominici, breast surgical oncologist at Dana Farber/Brigham and Women’s Cancer Center and South Shore Hospital. “But you also can have the mutation and never get cancer.”
Between 40 and 80 percent of women with BRCA1 and BRCA2 will develop breast cancer and 15 to 40 percent of women will develop ovarian cancer, says Dominici. These cancers tend to be aggressive and occur when women are younger than 50.
Boesky, 51, said she grew up with the idea to “have children and get those things (ovaries) out fast,” since both her grandmother and aunt died of ovarian cancer at young ages and her mother had a preventive hysterectomy. When her mother developed breast cancer and died from it 17 years ago, the genes and her increased risk for cancer were not known, Boesky said.
“We thought it was a small treatable cancer, so it was not treated in the way an aggressive cancer would have been,” said Boesky.
Today, doctors recommend that women with BRCA1 and BRCA2 have their ovaries removed once childbearing ends because there is no good screening for ovarian cancer, says Dominici. For breast cancer, doctors may recommend prophylactic removal or close monitoring with an MRI.
“It is so personal about how individuals perceive risk,” Boesky said. “Every situation is different depending on your age, childbearing and perception of risk. I don’t think there is a neat formula for what people feel or do.”
Both McGovern and Boesky had surgeries to remove their ovaries, uterus and breasts and surgeries to reconstruct their breasts. Boesky had her surgeries between ages 34 and 37, before she developed cancer and after she bore two daughters. McGovern, who has three teenage and young adult children, had the surgeries after she developed breast cancer last year, which now is in remission after chemotherapy and radiation. She still has one final reconstruction surgery left.
Until she began asking questions after her diagnosis, McGovern was unaware that her grandmother and four cousins had breast cancer and another grandmother had ovarian cancer.
“We’re a classic Irish Catholic family and don’t talk about these things,” said McGovern, 47, who has five siblings. “Apparently, I do have a family history.”
Knowing your family history is the first step toward preventing cancer or finding it in its earliest stage, says Dr. Dominici. Red flags include female relatives with pre-menopausal breast cancer and ovarian cancer, and male relatives with breast cancer.
“If a woman has a suspicious family history, she would (need to) meet with a genetic counselor, who would recommend whether the risk was such that she should be tested,” Domenici said. “Even though it’s a simple blood test, the decision isn’t easy because there are a lot of implications.”
Interestingly, Boesky has never been tested for the genetic mutation. She said she went ahead with the surgeries because she wanted to take every step possible to protect herself from cancer.
“Even if the genetic test were negative, I know there are other BRCA mutations out there and there are some women who get inconclusive results,” said Boesky.
With her daughters now in high school and college, Boesky has been wrestling with whether to get tested.
“Is it better for me to have the testing, so I know whether it’s really necessary for my daughters to have it?” she asked. “I think I would like to be tested first to take on the worry and spare them. If I’m negative, then they don’t need to worry.”
Boesky shared this dilemma with the women at her book reading.
“What would you do with the knowledge that a medical condition hung over your family?” she asked. “How much would you want to know and when?”
For women who know they have BRCA1 or BRCA2, doctors offer more hope than ever before.
“People search for a reason they got cancer, and in most cases we can’t answer that,” said Dominici. “But in this case, we have an answer. Since we know about these genes, we can do more screening, prophylactic surgery and try new trials of chemotherapy targeted to the cancer. We’re also looking to see if some medications can be used in a preventive manner, and that is exciting.”
McGovern said she feels hopeful and expresses that in monologues she wrote for the new comedy “The MOMologues: Pink Ribbon Overdose.” Co-written with fellow cancer survivors Pam Ahl and Lisa Rafferty of Scituate (a creator of the original “MOMologues” and “MOMologues2: Off to School), the production will be performed as a benefit Oct. 27 at the Hard Rock Cafe in Boston.
“There’s nothing funny about cancer, and yet there are funny moments,” said McGovern, who also produced the show and acted in last year’s “The Best of the MOMologues.” “Breast cancer takes away so much, but it doesn’t have to take away your sense of humor. We think laughter is therapeutic and helps you shift from feeling like this is the end of the world to ‘I can get through this.’”
Reach Jody Feinberg at firstname.lastname@example.org.
EVENTS AND RESOURCES
- “The MOMologues: Pink Ribbon Overdose,” 6 p.m. Oct. 27, Hard Rock Cafe Boston Cavern Club, Boston. Written by Lisa Rafferty, Jane McGovern and Pam Ahl, it stars Scituate’s film and television actress Erica McDermott, Executive Director Julie Nations and WCVB-TV’s newswomen Bianca de la Garza, Susan Wornick and Karen Holmes Ward.
Tickets are $30 and include the performance and hors d’oeuvres. All proceeds benefit the Ellie Fund, which provides daily life support services for breast cancer patients and families. For tickets and more information, go to www.elliefund.org/pinkribbon or www.MOMologues.com.
- Amy Boesky, author of the memoir, “What We Have,” (Gotham Books) 2010.
Meeting and book signing is at 5:30 to 7:30 p.m. Wednesday at Healthworks in Chestnut Hill Mall in Newton.
Reading and discussion is at 7 p.m. on Nov. 8 at Dover Town Library, 56 Dedham St., Dover.
- FORCE (Facing Our Risk of Cancer Empowered), a hereditary cancer information, advocacy, research and support group: www.facingourrisk.org