How Ovarian Cancer 'Previvors' Are Paving the Way
Nancy Crowe is a previvor, but she understands if someone doesn’t know what that means. It’s a relatively new term which arose in 2000 from a challenge posted on FORCE’s website. FORCE stands for Facing Our Risk of Cancer Empowered and was started by Sue Friedman in 1999.
Sue says the goal of FORCE is to include every person who has been affected by hereditary cancer, including those with cancer and those without, those with a known genetic mutation and those with cancer in the family even if no BRCA mutation has been found.
Genetic testing
Genetic testing for the BRCA1 and BRCA2 mutations were positive for Nancy. Her doctor told her she had an 87% chance of developing breast cancer in her lifetime. Rather than wait it out and endure extra yearly screenings, she opted for preventative surgeries.
Nancy decided to have a double mastectomy and hysterectomy to decrease her risk of developing breast and ovarian cancers. After having the surgeries, her risk of developing breast and ovarian cancer is only 1%.
Her mother was diagnosed with breast cancer twice in her thirties and died from the disease at age 36. Nancy said she knows what she went through when she lost her mom, and she did not want her husband and son grieving her premature death.
Emily Jordan, a genetic counselor at The University of South Carolina School of Medicine, said more and more women are opting for preemptive surgery to drastically lower their risk of breast cancer.
For people who carry specific gene mutations, preemptive surgery is an option. In general, women with a BRCA1 or BRCA2 mutation have an 85% risk of developing breast cancer. When the risk is that high, surgery to remove their breasts is a preventative option.
Genetic counselors like Emily consult a patient's medical history and family trees to determine if the risk of cancer is heredity. After the consultation, genetic testing is used to determine what types of cancer are most likely to develop based on several factors.
Nancy said making her decision after genetic counseling was pretty easy and pretty quick. She thought about her family history and her age, 36 at the time. Nancy wanted to outlive her mother and said there was never a part of her that thought she could go on without being proactive.
Nancy gives credit to genetic counseling for saving her life. Knowledge is key and if there is a way to gain knowledge then it should be utilized, she says. Genetic testing holds the key to knowledge.
P.ink
She is now taking ownership of her mastectomy scars by getting tattoos to cover them up. She plans to take back her scars by tattooing over them. Nancy was set up with an organization called P.ink which matches breast cancer survivors and previvors to tattoo artists across the United States.
P.ink’s motto is that breast cancer does not have to leave the last mark. Nancy feels empowered by inking over her scars. She says tattoos are like scars but with better stories.
Normally there are two options for previvors and breast cancer patients: reconstruct or not. But P.ink is getting the word out that there is a third option: ink. Healing comes through tattooing over a previvor and survivor’s scars.
Pam’s previvor story
“I never went ahead with genetic testing, even though my gynecologist suggested it year after year, because I was afraid my insurance would not cover it.” Those were the words of Pam. She said she put genetic testing for breast cancer on the back burner even though cancer ran in her family.
The truth is, she was 45 and felt she had dodged a bullet by not being diagnosed with cancer. She thought she could not be positive like her mother and sister. Both her mom and sister were diagnosed with breast cancer when they were in their thirties. And Pam’s mom and grandmother both died from ovarian cancer in their fifties.
But when she went to her last annual checkup, her doctor said all she had to do was spit into a cup. Pam’s gynecologist said genetic testing for the BRCA1 and BRCA2 mutations could be revealed through a salivary test and that her insurance would surely cover it.
Pam thought she might as well do it and know for sure. Then the week before Christmas 2015 she received the call: Her results were positive. Her test was positive for the BRCA1 genetic mutation. She truly did not expect those results; how could she, her mom and sister all be affected by this disease?
The shock wore off in about thirty minutes then she said to herself she would be a previvor before she was a survivor. She decided to take control of her body and her future. She then talked with a genetic counselor, a little backwards in Pam’s case, but totally acceptable.
With the help of her genetic counselor, Pam decided to have a complete hysterectomy and bilateral salpingo-oophorectomy. She also met with a breast surgeon to discuss a double mastectomy. For now, her hysterectomy and bilateral salpingo-oophorectomy have been completed. Her breast surgery is next.
When deciding what to tell her children about why she was having surgery, Pam put it into simple terms. She told her two teenagers and 10-year-old son that she was simply getting rid of the organs that could make her sick in the future. For now, she hasn’t discussed the fact that they could be carriers of this mutation as well. She will continue fighting on as a previvor.
FORCE
FORCE has been a huge part of previvors’ lives. They are a national nonprofit group dedicated to improving the lives of those affected by hereditary breast and ovarian cancer (HBOC). For over fifteen years, FORCE has been an advocacy leader on HBOC policy, research and awareness. FORCE aims to unite the HBOC community to instill progress.
Kendra Montanari, a previvor, said FORCE has been an amazing support system to her. She gained knowledge and strength needed to make difficult decisions about her health and to be proactive about her future.
FORCE provides previvors, survivors, and caregivers with peer navigation support, message boards, local support groups, a toll-free helpline, a patient driven research registry and recruitment program, up to date news in layman's terms, webinars, brochures, photo gallery, newsletter, public policy and provides access to care for all people affected by HBOC.
Previvors need to ban together to educate themselves, their family members, and the public. The more we know about screenings and genetic mutations, the more proactive we can be. There is no shame in previving cancer.
Just like Nancy said, genetic counseling made her decision quick and easy. Screening requires a simple test that can be done with saliva or blood. Results take a few weeks to get back and then the decision is yours. Like Nancy says, she has no regrets about her decisions, only hope for her future.
References
http://www.goupstate.com/news/20171001/shes-previvor
https://www.pennmedicine.org/cancer/about/focus-on-cancer/2012/september/what-is-a-previvor
http://www.breastcancer.org/community/acknowledging/genetic-testing/previvor
https://www.rd.com/health/conditions/brca-diagnosis/
http://www.facingourrisk.org/about-us/index.php
