Avoidable Death of Young Woman Stresses Importance of Early Detection

Too many women are turned away at doctors’ offices when they request cancer tests—just because they’re “too young for cancer.” Often, all it takes is to transfer to another doctor and get a second opinion from someone who will listen to you. But sometimes that doesn’t happen.

A case in point is a 26-year-old woman from Bristol, England, who was deemed “too young” to be given a cervical smear test, and then died of cervical cancer in February 2013. Her story is why it is so important to trust your instincts, seek a second opinion, and rail against legislation.

Becky Ryder visited her general physician in September 2010 for abnormal bleeding, which can be a sign of either cervical or ovarian cancer. But because she wasn’t yet 25, the doctor refused to administer a smear test and, instead, diagnosed her with “harmless cervical erosion” and prescribed her a treatment.

Finally sticking to her guns after months of disappointing appointments, she visited another doctor for a second opinion and underwent a biopsy. She was diagnosed with ovarian cancer in March 2011 and chose to freeze her eggs in order to have children later. Despite radiotherapy and chemotherapy, she died before her third wedding anniversary.

If the first doctor had allowed the cervical smear test, Ryder may have been saved. However, the first doctor wasn’t just at fault in this case. England legislations had changed and raised the smear test’s minimum age requirement from 20 to 25.

An article on dailymail.co.uk explains Ryder’s story. It states:

“The Mercedes Curnow Foundation For The Early Detection Of Cervical Cancer now campaigns for a reduction in the screening age to 20. It also funds private smear tests. But the Department of Health said routine screening of under-25s did ‘more harm than good’, giving too many false positive results that lead to needless treatment.”

Follow this link for more information.

Dave Brown Encounters Ovarian Cancer Stories During Trek Across America

By now, most of us have seen the popular movie “Forrest Gump,” the story of a man with a learning disability who tells his life story to strangers at a bus stop. He grew up in the south with Jenny as his only friend. He goes on to become a Vietnam war hero and then the man who ran across the country, crisscrossing from coast to coast a few times. “Run, Forrest, run!” is a joke that most people use without a second thought.

In real life, Dave Brown may not be Forrest Gump, but he’s just as determined to walk across the country. But instead of doing it because he “just felt like running,” Dave is promoting ovarian cancer awareness and fundraising for research because his wife had died of the disease a few years ago.

In “Forrest Gump,” Forrest grows a beard and loses weight throughout his trek. In real life, Dave has actually gained weight because of support from residents across the county. On April 11, Dave had crossed into Indiana from Ohio on his 42 walking day.

“I am definitely going to be the first person to walk across the country and gain weight,” he blogged after receiving cookies and other treats from an Ohio woman who lost her sister and mother-in-law to ovarian cancer.

And like Forrest Gump, Dave has gained a following on the road. A steady stream of walkers have joined Brown throughout his trek.

“I had expected my walk to be much more of a walk of solitude,” he blogged. ”Nine of the last ten days someone has walked at least part of the day with me which has been great.”

To donate to help Dave’s cause, click here.

To read Dave’s blogs, click here.

Celebrities with Ovarian Cancer

Some of the best people to use as models for the fight against ovarian cancer are people, friends, or family members that you know personally. Because the disease touches your heart through these people, you’re more likely to advocate for research and a cure.

However, if those people aren’t available, then most of us turn toward celebrities in order to live vicariously through them. So what happens when one of our favorite celebrities is diagnosed with cancer? We feel like the disease has touched our lives as well. These people become figureheads for the fight against the disease, and we cheer for their survival. Most of the time, they don’t survive because ovarian cancer is often discovered in a late stage. However, as you can tell from the list below, many women were able to live long and fulfilling lives. Take a look at this sampling, and check out the link at the bottom for a much more extensive list.

• Evelyn Ankers, American film actress (died at age 67)
• Eileen Barton, Brooklyn-born American singer (died at age 81)
• Kathy Bates, Oscar-winning American actress, surviving; later treated for breast cancer
• Laurie Beechman, American actress/singer (died at age 44)
• Marcheline Bertrand, American film actress; mother of Angelina Jolie and James Haven (died at age 56)
• Carol Bly, American short-story writer/essayist (died at age 77)
• Diem Brown, Reality TV star (MTV's The Real World and Road Rules, as well as MTV's documentary of her experience with the disease), surviving
• Dorothy Brunson, American businesswoman; first African American woman to own radio and television stations (died at age 72)
• Pam Brown, American politician (died at age 58)
• Carol Channing, American stage and musical comedy actress, surviving
• Maureen Connolly, tennis great; first woman to win four grand slam titles in one year (died age 34)

Follow this link for a much larger list. 

German Lab Apologizes and Retracts Info about Henrietta Lacks's Genome

It seems that the German lab that published Henrietta Lacks’s genome realized its mistake, apologized, and “withdrew” the data from an online journal.

Henrietta Lacks was a poor Virginian tobacco farmer who worked the same land as her slave ancestors. Society recently became aware of her and her cells because of Rebecca Skloot’s 2011 book, “The Immortal Life of Henrietta Lacks.” The book’s summary explains the many uses that science has gleaned from HeLa cells. The summary says:

“HeLa cells were vital for developing the polio vaccine; uncovered secrets of cancer, viruses, and the atom bomb’s effects; helped lead to important advances like in vitro fertilization, cloning, and gene mapping; and have been bought and sold by the billions.”

Science has used her cervical cancer cells, taken in 1951 without her consent and called HeLa cells, to develop vaccines (such as the one for polio) and treatments, and to unravel the secrets of cancer. Lacks is called the immortal woman because even though she died and is buried in an unmarked grave, her cells have been replicated and kept alive to this day. But because her cells were taken without her consent in 1951, her family members are concerned that the world now has information regarding their genetic traits--the most personal of personal information. In addition, the family has not received monetary compensation or royalties from all the experiments and scientific advances.

Follow this link for more information.

Registration for the Ovarian Cancer National Alliance’s 16th Annual Conference

Registration is now open for the Ovarian Cancer National Alliance’s 16th Annual Conference, the longest running conference devoted to ovarian cancer survivors. “It is the epicenter for researchers, clinicians, survivors and friends to come together, learn from one another and discover the latest developments in diagnosis, treatment and quality of life for women with ovarian cancer.”

The conference will be held in Washington, D.C., on the weekend of July 12-15. Register by Friday, June 7, 2013 to receive a preferred registration rate.

Every attendee can join the organization on Capitol Hill, where you can tell members of Congress how ovarian cancer has touched your life. You can also ask for support of important programs.

More conference programs will occur on Saturday to make them more available to attendees. There will be full-day sessions on Saturday and Sunday with an Advocacy Day on Monday, July 15.

2013 Ovarian Cancer National Alliance Conference
Hyatt Regency Washington on Capitol Hill
400 New Jersey Avenue NW
Washington, DC 20001
United States
Event Details For registration questions and assistance:
Rose Draper
AMC Network
Phone: (707) 829-9484
Email: ocnareg@amcnetwork.com 

Attention: Registration rates will go up after June 7.
Your registration fee covers includes sessions, materials and meal functions—breakfasts and lunches on Saturday and Sunday, and a reception on Sunday evening. Breakfast is also included on Monday, July 15, for those taking part in our Advocacy Day on Capitol Hill. The registration fee does not cover travel costs, dinners and hotel accommodations.

For more information, click here and here.

Parents Who Refuse to Vaccinate Daughters Against HPV

Have you heard of parents who refuse to vaccinate their children? They believe vaccines may cause health problems, other diseases, neurological problems, and even sterilization. This creates a problem because if their child contracts an age-old disease, it puts other children (such as babies who are still too young for specific vaccines) at greater risk.

Although HPV isn’t as communicative as cholera, tuberculosis, measles, mumps, or other diseases of that nature, it’s still incredibly dangerous and can be transmitted easily through sexual interaction, at the very least. Numerous studies have linked HPV with cervical cancer.

The statistics around a parent’s refusal to vaccinate daughters against HPV are striking.

As of 2010:

• 75 percent of teenage girls in the U.S. were not up to date on their HPV vaccinations.
• 44 percent of parents said they didn't plan to get their daughters vaccinated, which was up from 40 percent two years earlier.

Here are the reasons given by parents who did not want to give daughters the HPV vaccine:

An article that details this information further stated:

The 14 percent who answered "not sexually active" highlight the misconception that people who are not having sex don't need the vaccination. It's most effective when given before a person starts having sex. There's also the misconception here that parents actually know when their kids start having sex.

The 16.4 percent that cited safety concerns was striking, since the number tripled between 2008 and 2010. Unfortunately the subjects didn't expand on what those concerns were or what prompted the rise. And then, the "not needed/not necessary" responses ... see the mortality statistics above.

In the U.S., only 45 percent of adults said they would be in favor of allowing teenagers to get vaccinated without parental consent. Though clearly sometimes parents just don't understand.

Follow this link for more information.

NCCN Standards for Best Treatment

There should be a standard for dealing with certain types of cancer, but there’s not. In the annual meeting of the Society of Gynecologic Oncology, researchers agreed on the fact that there are various degrees of treatment quality provided for ovarian cancer.

Over 13,000 women with epithelial ovarian cancer were listed on the California Cancer Registry from 1999 to 2006. Of them only 37 percent received treatment that adhered to the National Comprehensive Cancer Network (NCCN)’s guidelines, the “gold standard” for treatment.

But wouldn’t there be a backlash from the public if most women weren’t receiving the best care? Not if that cancer isn’t as widely recognized as, say, breast cancer. Plus, many women diagnosed with the disease are a little sicker, a little older, and less likely to advocate for themselves and others.

Whether patients received protocol treatment depended on two major factors: 1) Surgeons who operated on more than 10 women a year for ovarian cancer, and 2) hospitals that treated more than 20 women. If any of those numbers dropped, the patients did not receive standard care.

With this in mind, women need to be aware of who they choose to provide them with treatment. Who they choose and where they go will have a major factor in whether they survive.

The best thing to do is ask a prospective doctor whether he or she follows NCCN guidelines, and try to be admitted to a hospital with a gynecologic oncologist that has regular admittance of and experience with ovarian cancer.

Follow this link to read more.