Headlines
As reported by The Hartford Courant, June 17, 2009.
Cancer Activist Sounds Alarm for Early Testing for Genetic Marker
By Kathleen Megan
The video pulses with the Black Eyed Peas song "Boom Boom Pow" while the message flashes on screen: "Pay attention to your family history! Dying before 50 from cancer is NOT normal! ... Make your family history clear to your doctor! Yell at them!"
Then a young woman appears, fit and sexy in a red sports bra, to tell you about her double mastectomy and chemotherapy: "I want you guys to understand that chemo does suck, but you can do it. ... Drink lots of water, listen to music ... if you want 'rock the wig' like I do."
When Jessica Gioia of Newington was diagnosed with breast cancer on Sept. 19, 2008 — the day after her 33rd birthday — she went on the Internet looking for advice and help.
"I started seeing all these videos of older woman. I couldn't relate," she said. "A lot of them were depressing. ... I was looking for someone more my age, who was upbeat."
She also wanted to reach young women — particularly those like her who might have a hereditary risk of breast or ovarian cancer — and might not realize, as she didn't, that she needed to think about this before the age of 40.
With a grandmother and an aunt who both died of ovarian cancer in their 40s and a mother who survived fallopian cancer in her 40s, Gioia said in a recent interview, "I already knew I was going to get cancer. It was like, 'Hello, it's written on the wall.' But I thought it would be ovarian cancer, and it would be in my 40s. ... I didn't think I was going to die. I knew I would take care of it ahead of time and all that stuff. I had no idea about breast cancer."
Through her two online videos, which can be accessed at www.youtube.com/user/uconhuskie, Gioia relates her experience and her discovery that she and the other women in her family share a mutation in the BRCA1 gene that significantly increases their risk for breast and ovarian cancer.
For Gioia, the story began when her grandmother was diagnosed with ovarian cancer in the 1980s. Gioia was around age 7 or 8, but she remembers visiting her grandmother in the hospital.
Then, five years ago, her mother, Dranda Trimble of Storrs, discovered at the age of 46 that she had fallopian tube cancer. It was caught early, and Trimble was treated successfully. But her oncologist, Dr. Carolyn Runowicz, who is director of the Neag Comprehensive Cancer Center at the University of Connecticut Health Center, recommended that Trimble and her daughters be tested for the mutations in the BRCA1 and BRCA2 genes, which carry with them high risk for breast and ovarian cancer.
As Gioia explained it, though, she and her sister, April Dean, 35, of Mansfield, were busy then with young children and didn't see cancer as a real threat for women in their 20s or 30s.
When her mother would bring it up, Gioia, who has three young children, now ages 9, 5 and 3, said, "I was pregnant, or I'd just had a kid. I said, 'I'll do that later.'"
Testing Proves Positive
But last year, when Trimble went back to see Runowicz for a check-up, the doctor again emphasized the importance of having her daughters consider genetic testing.
By early July of last year, all three had tested positive for the mutation in the BRCA1 gene, meaning they were at high risk for cancer.
When they consulted with Jennifer Stroop, a certified genetic counselor at the health center, they learned that those with the BRCA1 mutation have a 60 percent to 85 percent chance of developing breast cancer in their lifetimes; that compares with a 12 percent lifetime chance for women without the gene. They also have a 20 percent to 40 percent chance of developing ovarian cancer in their lifetime, compared with the 1 to 2 percent chance among women in general.
The presence of the gene also increases the chance of prostate cancer in males from a 15 percent lifetime risk to a 20 percent risk and raises the lifetime risk of breast cancer in males from less than 1 percent to 6 percent.
And, worrisome to the young mothers, the mutation also carries a
50-50 risk that it may be passed on to their children.
Sudden Cancer Diagnosis
Dean, who said she "hadn't been really good about going to the gynecologist and getting regular paps," went in for a checkup in July and was told she was fine. But a few weeks later, complaining of constipation, she returned to her doctor. She discovered in August that she had Stage 3 ovarian cancer.
"It took all of us absolutely by surprise," said Dean, who is still fighting the disease.
The seriousness and shock of her sister's illness propelled Gioia into immediate action. "Let's say I was aggressive," she said.
Gioia decided she wanted "everything out" — ovaries, uterus and a double mastectomy. Such surgeries reduce risk of ovarian cancer by about 90 percent and the chance of breast cancer by 90 percent to 95 percent.
But before surgery, an MRI revealed a small lump in Gioia's breast — Stage 1 breast cancer.
It was after her mastectomy — only two weeks later — that Gioia decided she wanted to reach out to help other young women through videos that would speak with seriousness but also with playfulness.
While her family was out of the house, she turned on her webcam and made her first video: "Cute Girl Living Life During and After Breast Cancer."
She says she wanted to warn other young woman to pursue testing, particularly if they have a family history, and to let those diagnosed with cancer know what to expect. She shows them the drains from her breasts, explains how to treat the drains and the sutures, how to take a shower and a bath. Gioia said her husband, Gil, has been very supportive through her ordeal.
Her second video, "BRCA 1 Cute Girl Breast Cancer Part 2," opens with entreaties to young viewers to get regular mammograms and consider other testing, if needed: "Please, people! Take your health seriously! Life is too much fun to not."
Gioia talks about her experience with chemo and explains how she got through it: by exercising, taking hot baths, distracting herself with her children, and going out occasionally with her husband.
"Chemo is doable — OK? Obviously, I look pretty good. It looks like I'm alive — right?"
She also shows off her new implants — she's gone from a 34B to a D now.
Donning sunglasses, she hams it up for the camera saying, "So, chemo is not lovely, but you can do it ... and you can still be glamorous."