St. Louis Beacon

  • Kira Backs The Beacon
Wednesday
Feb 08th






      
 
Home

Cialis Online

Genetic testing can save lives, but not for everyone Print E-mail
By Jan Paul, special to the Beacon   
Posted 7:04 am Tue., 9.23.08

hudsonbober.jpg

Provided

Beth Hudson (left) and Susan Bober. Bober found out she had a BRCA1 genetic mutation through testing and then informed her sister. Hudson also inherited the mutation.

 

"This is my sister Sue and she saved my life."

That's how Beth Hudson, a former preschool teacher, introduces her sister, Susan Bober, to acquaintances.

Read the first part of the series

Read about the CA-125 blood test for ovarian cancer: New ovarian cancer test shows promise, but some call it risky

Bober, 56, had been diagnosed with advance-stage ovarian cancer and, because her aunt and cousin had had ovarian cancer, Bober underwent genetic testing. Inherited mutations of the BRCA1 and BRCA2 genes increases a woman's risk for both breast and ovarian cancer.

Bober learned she carried the BRCA1 gene mutation and alerted her three sisters. Of the three, only Hudson, 54, of Des Peres, had inherited the BRCA1 genetic mutation.

She wasn't surprised. Hudson had been her sister's primary caregiver during her surgery, recovery and chemotherapy. So she was more aware of ovarian cancer's signs and symptoms than the average woman. She didn't have any symptoms - or so she thought.

"I made an appointment with my OB-GYN and told her I wanted to do a prophylactic hysterectomy," Hudson recalls. She had a CA-125 blood test that registered at 7 - well below the recommended ceiling of 35. Likewise, a transvaginal ultrasound showed no cause for alarm.

When Hudson went to surgery 10 days later, her OB-GYN physician was so confident it would be a routine hysterectomy that she didn't have a gynecologic oncologist standing by - a standard procedure when cancer is suspected.

"She immediately saw the cancer," Hudson said. "I had no symptoms, no pain. It was totally a fluke." The surgeon called in a GYN oncologist to excise the cancer, which was outside the ovaries. It was staged as IIC. Hudson's CA-125 had shot up to 53.

Hudson has been cancer-free since finishing chemotherapy almost a year ago [October 2007]. In retrospect, she realizes she did have one symptom - urinary frequency. But she had blamed the problem on her habit of drinking lots of water each day.

Now Hudson and Bober sing the praises of genetic testing.

"Do it, do it, do it," Hudson says. "I can't imagine why anyone wouldn't do it."

Cost is one reason. The full course of testing can cost $3,000 or more, and it may not be covered by insurance.

A second reason is that only five to 10 percent of women diagnosed with ovarian cancer carry the gene mutation.

To test or not to test?

Dr. Kevin Easley, a gynecologic oncologist at The Center for Cancer Care & Research in Chesterfield, advises women to see a genetics counselor at one of the major medical centers.

"If you're diagnosed with ovarian cancer at a younger age, or if there are multiple family members, I recommend you think about getting genetic testing," he said.

A genetics counselor will take an extensive family history of a patient with cancer and assess whether that patient is at high risk for other cancers. BRCA1 and BRCA2 mutations can be passed by male or female relatives, he noted.

The counselor also can advise whether insurance is likely to cover the cost of testing. That often depends on a patient's family or personal history, Easley said.

In the case of Bober and Hudson, insurance paid for the testing.

Easley has these recommendations for a woman who learns that she carries one of the two gene mutations:

  • Share the information with siblings and children.
  • Consider a prophylactic mastectomy.

Online and Community Resources

Take a confidential assessment of your chance of developing ovarian cancer, at the Women's Cancer Network.

Learn more about genetic testing at www.myriadtests.com/

Find a gynecological oncologist in your area. Go to www.wcn.org, click on Find A Doctor and enter your ZIP code.

St. Louis Ovarian Cancer Awareness offers information, support and fellowship. Go to www.sloca.org.

Join the Gynecological Cancer Networking Group, a monthly support group at the Wellness Community of St. Louis: www.wellnesscommunitystl.org/

Find information about clinical trials, research funding, education and advocacy efforts on a national level at the Ovarian Cancer National Alliance web site, www.ovariancancer.org/.

What about the adult daughter of a woman with ovarian cancer?

"I wouldn't do anything until she is finished with child-bearing," he said. "Oral contraceptives provide some protection. When she's done with child bearing, do genetic screening." Later, as the daughter nears the age of her mother's cancer diagnosis, he would suggest rigorous testing on a semi-annual basis: CA-125 tests, transvaginal ultrasounds and pelvic exams.

Dr. Nick Chobanian, director of the gynecologic oncology division at St. John's Mercy Medical Center, urges any woman who carries the gene mutation to have her ovaries removed after she passes child-bearing age.

"That reduces the risk of ovarian cancer by 96 percent," he said. "That's huge." In one week last month [August], he performed two prophylactic oophorectomies (surgery to remove ovaries) on women carrying one of the BRCA gene mutations.

One in 500 people carry the BRAC1 and BRAC 2 mutation, Chobanian said. BRAC1 has a higher risk for ovarian cancer than BRAC2, but either carries a 50 to 60 percent risk for breast cancer.

Now that Hudson has fully recovered from her encounter with ovarian cancer, she's considering whether to have a prophylactic mastectomy.

"I was physically and emotionally in no condition to think about it till a couple of months ago," she said.

Jan Paul, a former reporter and editor for the St. Louis Post-Dispatch, is a two-year survivor of ovarian cancer. Her cancer was diagnosed at Stage IIIB. To reach her, contact Beacon health editor Sally J. Altman.

 

Only registered users can comment on an article. Please login or register.

  • Thank you for reading the St. Louis Beacon, a non-profit news organization dedicated to reporting and discussing "news that matters" to the St. Louis region. You can support the Beacon by attending our events, becoming a source in our Public Insight Network or making a donation.

Editors' Picks

 

'The Road Show' improv

Brent Jones | St. Louis Beacon

This Saturday was the debut of a new show by The Improv Shop that will bring out of town improv teams to St. Louis to play for — and with — a local audience. The Road Show brought teams "Everybody Grok" and "Felt" from Chicago.

We talked to Eric Christensen, producer of the Road Show and member of local improv team "Ted Dangerous"; Katie Nunn, member of "Ted Dangerous" and improv coach; and Melanie Penn and Ranjan Khan, members of local teams "Melanj" and "Magic Ratio"; about the St. Louis improv scene and why it's important to welcome teams from other cities to perform here.

See a larger version of the slideshow

Topics

Voices

  • M.W. Guzy fears his daughters' affection for trash TV might have been genetically inherited, as he finds himself drawn to the anybody-but-Mitt show, playing on a loop on cable "news' channels.

  • Miguel Dulick recounts a trans-Honduras tour that, again, reminded him of the power and joy of keeping siblings and parents connected.

  • Ken Schechtman says that publicly traded business will not -- perhaps cannot -- put doing the right thing ahead of legally maximizing profits.

Beacon Roundtable

Beacon Blog

On chess


@

Register to receive our daily email of new content.  If you're already registered, email us at [email protected] with the subject line "subscribe".

MFFH Regional Meetings

The Missouri Foundation for Health will hold a meeting to highlight its funding strategy for 2012. The meeting is scheduled for 9-11 a.m. on February 1 at the Missouri Foundation for Health's 2nd floor training room in the Grand Central building at Union Station in St. Louis.

Meetings are free and designed for health and community action nonprofits, community service clubs, human service providers and community leaders. RSVPs are encouraged: Contact Maranda Witherspoon at 800-655-5560 or [email protected]. More information.

FAcebook
Twitter
Google+
RSS
inn_125x125_white_rounded_square2

The Investigative News Network is a consortium of nonprofit news organizations dedicated to watchdog and public interest reporting.

See our other partners.