Bloating. Abdominal pain. Constipation. back pain. Weight changes.
These are all issues women can experience on a monthly basis, but sometimes it’s not something so benign.
The same symptoms parallel those of ovarian cancer.
The survival rate for women with ovarian cancer depends greatly on the stage at which it is caught and the age of the patient. But because its symptoms are often overlooked and the disease is relatively rare – fewer than 2 percent of women will be diagnosed with the disease in their lifetime, according to the National Institutes of Health – the disease can go undiagnosed.
In fact, there is no screening for ovarian cancer.
So whatever the reasons may be, the disease often goes under the radar of patients and doctors.
But three women who have been greatly impacted by ovarian cancer are trying to change that – through social media – while coping with their own experiences.
Help keep a Sister Alive
Maggie Heim, now 58, had gone to her doctor complaining of extreme fatigue, bloating and constipation.
The Hermosa Beach resident was told she had a vitamin D deficiency and led a stressful life, so she might consider seeing a therapist – and maybe a gynecologist. there, she was told she was healthy. that was July 2009.
Four months later, unsatisfied with her lack of diagnosis, Heim went to a gastroenterology specialist who ordered a CT scan.
“Next thing I knew I was scrambling to get into surgery to get the thing out,” Heim said of her tumor.
She was diagnosed with stage 3A ovarian cancer.
Though Heim had long been an avid blogger about various issues, she soon began documenting her most personal journey on her cancer-dedicated blog, Help keep a Sister Alive.
“There’s a lot going on in the cancer field in my life and I really need to write about it,” Heim said. “That’s my way of coping with the big questions in many ways and sometimes the small questions, like it’s OK to feel vain about losing your hair.”
Heim had both ovaries removed and her cancer was in remission for a year, but this past July the cancer returned in her lymph nodes.
Her doctor said her best chance of survival was to use the drugs Doxil and carboplatin. But the company that manufactures Doxil, a division of Johnson & Johnson, has an extremely limited supply of the drug and is recommending it be prescribed only to patients already being treated with it.
So, Heim waits. And has for months.
She currently is only being treated with carboplatin but could become platin-resistant – a condition in which the body does not respond to any platin (platinum-containing) drugs, including carboplatin and cisplatin – at any moment.
“I’m being treated at Cedars-Sinai, they have no Doxil. They couldn’t get it but my oncologist said some of the smaller hospitals are getting it,” Heim said. “It just depends on the vendors you’re working with, but such a small supply was released in late August, it’s like gold. They are making decisions about who’s going to get a drug that is, for many people, life-saving.”
The cause of the drug shortage isn’t publicly known, though Heim believes it’s because Doxil is not a profitable drug for the manufacturing company.
Doxil is not the only cancer drug that has a shortage. According to the Ovarian Cancer National Alliance, more than 180 drugs are in short supply.
“I think I decided to make it a completely dedicated cancer blog because of the drug shortage issue and because of the advocacy issues,” Heim said.
“I think there’s so much going on and my big issue is that right now people not ignore ovarian cancer and people really get behind this problem with the drug shortages.”
Ovations for the Cure
Patty Franchi Flaherty founded Ovations for the Cure after she was diagnosed with ovarian cancer in 1999.
She noticed the state of the fight against the disease was stagnant – that the same research and the same treatments were available as when her mother was diagnosed with the disease 20 years earlier.
Flaherty’s mother lost her battle in 1974, and Flaherty lost her own battle in 2008.
To date, the group she created has funded $1.4 million of research, including $60,000 to the City of Hope in Duarte, where Flaherty was treated.
Aside from fighting ovarian cancer through funding research, raising awareness and creating patient programs, the group also provides an online space where patients and caretakers can come together.
“It only affects one in every 70 women, so it doesn’t have the same statistics as breast cancer, and with the survival rate still 20 percent over the last 20 years, the survival rate isn’t as high as breast cancer,” said Lisa Madden, director of operations for Ovations for the Cure.
“So there’s not as many survivors, so there’s not as much of a network. The blog enables survivors to communicate to each other and it gives them a base, a foundation, for other patients to talk. Strength in numbers.”
The group’s blog is titled The Whisper Network because women often keep their diagnosis a secret, Madden said.
She compares ovarian cancer to where breast cancer was 20 years ago.
“People used to not talk about their breasts. It was taboo. It wasn’t socially accepted,” Madden said.
“Ovarian cancer has been going through the same phenomenon with now being comfortable to talk about your ovaries, your uterus, when it’s been taboo. so it was always the whisper disease because people wouldn’t like to talk about it. You’re talking about a woman’s femininity.”
But now women are talking. And they are looking for hope and other words of encouragement.
So Madden has some to offer.
“We are going to make a difference,” she said. “Through their support and their increase of talking about it amongst everyone they know, we will make a difference in this disease.”
Shawn’s F.a.C.T.S
Cancer doesn’t happen to 22-year-olds. or that’s what Shawn Berrina of Northridge thought until she was lying in a hospital bed after having a 3-pound tumor and her right ovary removed.
She was supposed to be studying for finals at USC, but instead she was told she had stage 1 ovarian cancer.
When Berrina began having symptoms, she, like many others, chalked them up to something else. she thought her back and hip pain was from her mattress. The sharp abdominal pains were probably due to her upcoming menstrual cycle. And her extended belly was likely from eating too much holiday food.
After about three weeks of symptoms, her mother took her to the hospital where the tumor – which was the size of a volleyball – immediately appeared on a CT scan.
Following her diagnosis, Berrina decided to start a blog for her family and friends so she wouldn’t have to update each person individually. But soon, Shawn’s F.a.C.T.S became something much more.
“I just thought, I might as well put it all out there. What if this happens to somebody else? or what if somebody else is looking for a situation like that?” the now 23-year-old said.
“When I got diagnosed I went to the Internet to look for cases like mine or people like me who were affected by it and how they were handling it and I really didn’t find a whole lot. so I was like, let me just do it for that. also to raise awareness and let people know about it.”
Her blog’s acronym stands for Fight Against Cancer Testimonials. To raise awareness off the Internet, she sells teal bracelets that say “Face the F.a.C.T.” – which stands for “Face the Fight Against Cancer together.”
Berrina began documenting her entire journey, including written blog entries and videos. she asked for people’s advice on whether she should shave her hair or let it fall out on it’s own, and once she made the decision to shave, she filmed the experience.
It’s all a part of the roller coaster of cancer, the physical aspects as well as the emotional and psychological, Berrina said.
And what she wants people to realize from reading her blog is that cancer happens to everyone; it doesn’t discriminate against age, race or color.
Though she is now in remission, Berrina, with the thought of getting a recurrence in the back of her mind, will continue to blog in support of ovarian cancer patients and survivors because, as she says in one of her posts, “Every scar I have makes me who I am.”
Stephanie Cary 310-540-5511, Ext. 6630
Find out more
Read more about Shawn Berrina’s journey with ovarian cancer at Shawns F.a.C.T.S
Learn more about Patty Franchi Flaherty’s legacy at Ovations for the Cure at Ovations for the Cure
Read more about Maggie Heim’s fight against ovarian cancer and the drug shortages on Help keep a Sister Alive Blog