Niagara Gazette

Features

November 21, 2011

WITHOUT WARNING: Pendleton woman wants others to know shortcomings of current genetic testing

NIAGARA FALLS — Kathleen Maxian is not just fighting for her life. She may well be fighting for many other lives, as well.  Hers is not just a battle against ovarian cancer, for which the Pendleton woman has endured surgery, chemotherapy and a grim prognosis.  She’s also battling a medical system she believes could have saved her from the illness by giving her warning.

Her story is making its way across the nation, led by recent media coverage in the New York Times and on CNN — and the events leading to her diagnosis are placing a spotlight on genetic testing and the patenting of human genes by corporations.

Maxian is certain that genetic testing might have helped her avoid the cancer trauma she currently faces and a diagnosis that gives her a 20 percent chance of survival.

Her challenges began several years ago, when her younger sister, Eileen Kelly, was diagnosed with breast cancer.

Concerned about the possibility of having inherited the gene for the disease, her sister had genetic testing and the whole family — including the sisters’ parents Ann and Arthur Kelly of Lewiston — breathed a sigh of relief when the tests came out negative for a breast cancer gene.

But, her sister was not offered a secondary,  more current test developed by a Myriad Genetics, a corporation that holds a patent on the genes that cause breast cancer. The test her sister was given, which Myriad developed called BRCA, catches most but not all of the breast cancer genes. The second test called BART, which costs $700 and can pinpoint the remaining breast cancer genes, would have been suggested had there been a known family history for breast cancer. At the time, there was no known history in Maxian’s family.

Kathleen did not know her family was susceptible until she was diagnosed with ovarian cancer and her Roswell Park doctor asked if she had taken the secondary test.

Had she done so — and had she received warning that she was positive for the gene, which also causes ovarian cancer — she would have chosen to have  a propholactic hysterectomy where her ovaries and uterus removed, she said, to prevent a cancer from growing.  She did take the secondary test after her diagnosis and it was confirmed she had the cancer-causing gene.

Maxian’s surgeon, Dr. Nefertiti duPont, director of the High Risk Ovarian Cancer Screening Clinic at Roswell Park, said that while only ten percent of cancers are hereditary, she wished more companies could get involved in the research of genetic testing. Currently Myriad is the only company that does testing because of its government issued patent.

“It would be nice if we had more collaboration, more researchers around the country that were able to evaluate the gene testing to see if the testing we do now is the best that we have,” duPont said.

duPont also expressed concern that the $700 price of the secondary test is not covered by many health insurance companies and noted that the women like Maxian could help bring the testing issues into the public arena.

“Kathleen is very educated, she's very thorough , she's very aggressive,” duPont said. “Not everyone will be like her but certainly (she helps) pave the way for other patients that may not want to ask questions or may be afraid to ask the insurance company ‘why aren't you covering this?’”

As such, Maxian is using the unwanted media spotlight to get the word out about the failures of current genetic testing systems and gene patents, as well as the early warning signs of ovarian cancer.

“The big project is to empower women by helping them gain understanding of the symptoms of ovarian cancer,” Maxian said during a recent interview in her Pendleton home.

Knowing the symptoms can help women get a diagnosis earlier and offer a better chance for survival as stage one ovarian cancer has a 90-95 percent cure rate. In more advanced stages the prognosis is not good, she said.

Unfortunately, the symptoms for ovarian cancer are vague and common, including bloating, feeling of fullness after eating small amounts of food, lack of energy and indigestion (see sidebar for full list). The important difference is to note when the symptoms are new and persistent, she said.

“You need to go to your doctor and say, I’m having this bloating. Don’t pat me on the hand and say, ‘no, that’s all part of aging,’” she said. “You need to say, ‘I know my body and this is a real symptom.’”

 I don’t want to create mass hysteria,” she added, noting that the chances of getting ovarian cancer are one in 70, compared to the chances of getting breast cancer, which are about one in eight.

As for the legalities behind a single corporation owning patents on human genes, Maxian hopes her story can fortify efforts to halt such exclusiveness.  Currently, a class action suit is pending through an American Civil Liberties Union, she said.

“I don’t want this to happen to anybody else. I’m going to do everything I can, even if that just means helping one other woman,” she said.

Contact Features Editor Michele DeLuca at 282-2311, ext. 2263.

1
Text Only | Photo Reprints
Features
  • SUN LIFE Opera intern 072714.jpg [Duplicate] Singing her heart out: Newfane woman wins prestigious apprenticeship twice. Rebecca Witty says she started singing in the womb. That might be an exaggeration, but the Newfane woman's love of music began at a very early age. "Music has always been in my life since I was a kid," she said. "My family is made up of musicians so that has played a big part of my love for music since the beginning."

    July 28, 2014 1 Photo

  • SUN LIFE Chef cooking demos 2 072714.jpg [Duplicate] F-BITES: Celebrity chef Bobby Anderson wants kids to learn more than just cooking. As a loudspeaker played "Waiting for the World to Change," Chef Bobby Anderson was busy changing it, just the other day. For Anderson, the cooking lessons he's conducting with local students this summer on Old Falls Street in Niagara Falls are entertaining crowds and giving young chefs life-changing exposure to new foods, new flavors and new experiences.

    July 28, 2014 2 Photos

  • SUN LIFE fair story 6 072714.jpg [Duplicate] More than rides and food at the Niagara County Fair

    July 28, 2014 8 Photos

  • mug - stack, catherine RGB [Duplicate] [Duplicate] NATURAL HEALTH: Taking a closer look at migraine causes and treatments

    Headaches come in all shapes and sizes, ranging from a mild tension headache to a migraine that has you locked up in a dark room afraid to move. Migraine and cluster headaches are by far the worst. 

    July 28, 2014 1 Photo

  • SUN LIFE tattoo 3 072714.jpg [Duplicate] Behind the tattoo gun — Niagara Tatoo Expo coming up

    Tattoos can be a touchy subject. Of course, people have heard they shouldn’t judge a book by its cover; still, people continue to report being denied jobs and being judged harshly for proudly displaying their ink. 

    July 28, 2014 4 Photos

  • mug - Jennings, Thom RGB [Duplicate] JENNINGS: It's the end of an era for fans of The Ramones

    Jeffrey Hyman, John Cummings, Douglas Colvin and Thomas Erdelyi formed one of the most influential bands in music history in 1974 — better known by their stage names Joey, Johnny, Dee Dee and Tommy Ramone. The last surviving member, Tommy, passed away July 11.

    July 28, 2014 1 Photo

  • SUN LIFE TOPS woman 2 072714 .jpg [Duplicate] Local woman honored for weight-loss success

    After Carolyn Sherman’s husband passed away, she became depressed, and her weight ballooned to more than 300 pounds. Wheelchair-bound, she ended up at Odd Fellow & Rebekah Health Care Facility in Lockport.

     

    July 28, 2014 2 Photos

  • NIA Biz logo 072814 IN BUSINESS: ReNU director named to '30 Under 30' list Tom Lowe, director of ReNU Niagara, has been named to the 2014 class of Buffalo Business First's 30 Under 30 honorees. The award recognizes 30 Western New Yorkers in the early stages of their careers who are achieving at high levels at work and in the community.

    July 28, 2014 1 Photo

  • SUNLIFELexisPlace1072014jpg (1).jpg Lexi's Place: A safe haven for teens battling suicide, sexual abuse and depression

    In a perfect world, a 14-year-old wouldn’t know exactly how it feels to try suicide.
    An 11-year-old who reaches out to the unwanted kids at school would not be thrown against a locker and bullied by other teens trying to make her feel small.
    And surely no teen would have a father who, when she was small, would give her to his friends for sex.
    All those things happened to the teens at Lexi’s Place.

    July 22, 2014 8 Photos

  • SUN LIFE wine fest 3 072014.jpg [Duplicate] Sip the Niagara Wine Trail's best in one location The Niagara Wine Trail reveals it's sweetness slowly, and only to those dedicated enough to spend the time. There are 27 wineries and to sample a taste of each requires much driving through the backroads of the Niagara region, and far too much sipping to make driving a logical possibility. That's what makes the trail's 6th annual Wine and Culinary event such a good idea. Wine lovers who've always wanted to explore the new and unusual offerings of the 14-year-old wine trail, can do so next weekend, all in one place.

    July 22, 2014 3 Photos

Featured Ads
House Ads
AP Video
Kerry: Humanitarian Cease-fire Efforts Continue Raw: Corruption Trial Begins for Former Va Gov. The Carbon Trap: US Exports Global Warming UN Security Council Calls for Gaza Cease-fire Traditional African Dishes Teach Healthy Eating 13 Struck by Lightning on Calif. Beach Baseball Hall of Famers Inducted Israel, Hamas Trade Fire Despite Truce in Gaza Italy's Nibali Set to Win First Tour De France Raw: Shipwrecked Concordia Completes Last Voyage Raw: Sea Turtle Hatchlings Emerge From Nest Raw: Massive Dust Storm Covers Phoenix 12-hour Cease-fire in Gaza Fighting Begins Raw: Bolivian Dancers Attempt to Break Record Raw: Israel, Palestine Supporters Rally in US Raw: Air Algerie Flight 5017 Wreckage Virginia Governor Tours Tornado Aftermath Judge Faces Heat Over Offer to Help Migrant Kids Kangaroo Goes Missing in Oklahoma More M17 Bodies Return, Sanctions on Russia Grow
Opinion
House Ads
Night & Day
Twitter News
Follow us on twitter
Hyperlocal Search
Premier Guide
Find a business

Walking Fingers
Maps, Menus, Store hours, Coupons, and more...
Premier Guide
Front page