Friday Night Teal Lights

Friday nights in the fall mean high school football. Two Toledo-area high school teams, the Woodmore Wildcats and Port Clinton Redskins, kicked off the season opener last Friday night sporting teal socks as part of Ovarian Cancer Awareness Night in memory of Carole Schultz and Norma Brossia. Organized by their families, the night was a tribute to the women, who had been supportive to their grandchildren on the field and in the band, as well as an opportunity to educate the community and raise funds for the Ovarian Cancer Connection of Northwest Ohio.

Carole Schultz's diagnosis was at stage 4 with metastasis on her lung and colon. Ovarian cancer would have been off her radar, as Schultz had her ovaries removed at age 29. Shed ovarian cells migrate to the peritoneum, where they remain. An oophorectomy can dramatically reduce but not completely negate the risk of ovarian cancer in those remaining cells.

Ovarian cancer affects not only women, but also the families that love them. The efforts of Donna Sandwisch, Holly Berry and Gerri and Mike Brossia demonstrate that we can educate in our own sphere of influence, and that the message will carry beyond our corner of the map.

I Wish I Would Have Known

"The most beautiful woman in the world."
"Fun, such good fun."
"Tired, so tired.""I wish I had known."
 These are the words of a man who loves a woman with ovarian cancer. Because once ovarian cancer touches the life of someone you love, you are forever looking back. Looking back at the silent symptoms and wishing you would have known. There was something wrong, that much was clear. But the symptoms were similar to growing older and the busyness of a life of someone who gives so much to others. I wish I had known. Had encouraged her to seek help, to keep asking questions, to find a doctor who would listen.
This is why Team Chasen A Cure is continually motivated to spread the word about ovarian cancer. Why we walk and wear teal. Why we tell everyone who will listen. Even if thinking about your body "down there" makes you uncomfortable, we want you to listen - listen to your body. Symptom awareness is a topic for everyone - men and women.  The encouragement to listen to the whisper of the symptoms and to take control of your health may come from a husband, a sister, daughter or a friend. There should be no one left without a mom, a sister, without the love of their life, left saying I wish I would have known.

New Year, New Hope

The New Year means a fresh start and new plans for Ovarian Cancer awareness events.

Some of the best news comes from Johns Hopkins University and the publication of test results of a newly developed PapGene test which could detect three gynecological cancers - cervical ovarian and endometrial cancers. By classifying gene mutations, samples were able to identify a fraction 9 of the 22 patients with Ovarian Cancer– a 41% accuracy rating of the ovarian cancer mutations. The PapGene test is the first step, as research will continue to work to making the test more sensitive to Ovarian Cancer gene mutations. Although improvements need to be made before applying this test in a routine clinical manner, it represents a promising step toward a broadly applicable screening methodology for the early detection of gynecologic malignancies.

A definite screening test for ovarian cancer could make a huge difference in early stage detection, earlier, gene-specific treatment protocol and ultimately more survivors. Wonderful news of hope for all in the Teal Tribe.

The calendar is filling with new events for promoting Ovarian Cancer awareness in 2013. March 21st, Chasen A Cure for Ovarian Cancer will be a presenter at a women’s heath event at the Arlington Heights Memorial Library. We are pleased to continue to have the opportunity to spread awareness in the local community, dispel myths and share Ovarian Cancer resources. Details to follow.

Already looking forward to this years NOCC walk in early May, Team Chasen A Cure will be decked out in team sweatshirts. Watch the NOCC Illinois Facebook page for breaking details.

Team Chasen A Cure Patriarch ready for the NOCC Walk to Break the Silence.

There will be more events throughout the year - from the Health Fair to the Families ROC Walk. Every day in the year is a chance to reach out to spread the word and look for new opportunities. We are on a road we did not choose. But we are on it for a reason, and the strength will be given to keep moving forward.

Make the Choice to Do Something

The news-feed featured a young, beautiful woman in a strapless gown. Miss America contestant Allyn Rose had announced that she will undergo a double mastectomy after the 2013 pageant.  The pageant queen’s mother was diagnosed with breast cancer at 27 and claimed her life after a re-occurrence of the disease at 50 years of age. Rose is currently disease-free and is undergoing this procedure for prophylactic reasons. 

More disturbing than the headlines labeling this story as a “beauty undergoing a dramatic physical transformation” are the loose cannons in comments - that Rose is uninformed and mislead by her doctors; that breast cancer – a disease that has been documented as far back as 1600 BC - can be prevented simply by large doses of iodine or daily servings of broccoli juice – that if Rose is concerned about the genetic course of breast cancer in her family, she should consider sterilization.  The personal voice to Rose’s platform of preventative health is being lost in the din of ignorance. A time when there could be understanding about genetics and the possible final days of pro-active health decisions doctor and patient are being lost.

Dr Mangus Westgren, Director of OB-Gyn at the Karolsinka Institute in Stockholm, Sweden, is offering a solution to save lives and gain data that could lead to more informed choices.

Tumors which originate in the cells of the fallopian tubes account for 75% of all ovarian cancer and 90% of ovarian cancer deaths. Dr Westgren proposes bilateral salpingectomy, removal of the fallopian tubes, as a method of reducing the incidence of ovarian cancer. Women would be informed of the availability of BSE to be completed during cesarean sections as a preventative to ovarian cancer while seeking a permanent method of birth control. Data for reductions in diagnosis over a 15 year period versus occurrence in the general population would be gathered to determine if the significant reduction of risk would lead doctors to counsel their patients on the option of BSE as an ovarian cancer preventative for all women.

While some bodies discourage screening for the general population, and unreliable screening methods exist for those the high-risk pool, we are thankful for cancer warriors like Dr Westgren who see the need to take action for prevention.  Methods and measures that might look drastic to some are informed, educated, life-saving choices to others. 

  

An All Teal Weekend

Chicago in Teal for the NOCC Teal Lights Celebration. Photo credit: Sarah Jones Design

It was a full weekend for Ovarian Cancer Awareness - much celebrating of life and spreading the word.

NOCC Chapter Coordinator Karen Young, ABC 7 Stacy Baca, Miss Illinois USA, Ashley Hooks, NOCC Chapter Manager, Jennifer Sloan. Photo credit: Sarah Jones Design

Friday, Sept 21st Chicago was bathed in teal lights for the NOCC Teal Lights Celebration and Fundraiser. ABC's Stacy Baca was the emcee for the evening which featured keynote speaker Miss Illinois USA, Ashley Hooks. As a daughter of a recently diagnosed ovarian cancer patient, Miss Hooks has added ovarian cancer awareness to her platform for her reign. “For my mom's sake and for the sake of all women, we all can contribute to the cause by educating ourselves and our loved ones on how to be more proactive with our gynecological health, so that we live longer, fuller and healthier lives.", shared Miss Hooks. As Ashley travels throughout her reign, she will touch many lives and be an effective spokesperson for awareness.

Know Your Body Raffle Prize

Chasen A Cure at the Health in the Heights

Health in the Heights was held Saturday, Sept 22nd at the Arlington Height Memorial Library. The Arlington Heights Chamber of Commerce Health & Wellness Committee welcomed  Chasen A Cure for Ovarian Cancer to spread the word on ovarian cancer and to Know Your Body. Exchanging  stories with those who's lives had been touched by ovarian cancer along with sharing facts with those who needed to be In the Know, made it a worthwhile event for Ovarian Cancer month.  Thanks to NOCC, the Gilda Radner Familial Ovarian Cancer Registry and Teal Toes for all of the awareness takeaway information as well as sponsor Visual Enterprise Systems, Inc.

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Team Chasen A Cure Photo credit: Cheryl Harston Johnson

Team Chasen A Cure Photo credit: Cheryl Harston Johnson

 
The FamiliesROC Walk was held on a beautiful Sunday, Sept 23 and it was a beautiful showing by Team Chasen A Cure. A fabulous gathering of survivors and families, once again raised research funds for the Siteman Cancer Center.

All of these wonderful events and there is still more time to spread the word. Keep wearing your teal!

Why Teal?

It's here - it's September 1st - the start of Ovarian Cancer Awareness Month. So Why Teal?

The easy answer is that teal is not pink, or red or yellow - the colors of ribbons that we see so often that we are no longer affected by their associated meaning. Teal stands out everywhere from your license plate to your toes. Teal is different and ovarian cancer is different.

 Ovarian cancer does not have a screening test that your doctor, insurance company, employer or family will assure that you have on an annual basis. The symptoms of ovarian cancer are silent and subtle, until the disease has progressed. The symptoms hide themselves in an easy to pass off manner, and are too commonly blamed on changes in diet or aging. The symptoms do not present themselves like a lump under your touch or numerical results of a test.

Awareness is crucial when 15,500 women will die this year. Women who had a better chance of surviving if they would have reacted to the symptoms sooner, understood earlier, asked questions with perseverance, and insisted that others listen and not dismiss the odds as too high. The cost of not reacting quickly enough is that deadly.

Teal makes people stop and ask - Why Teal? Have the answer ready - it could save her life.

Get Ready for Teal Time

It is time to get ready for September - Ovarian Cancer Awareness Month. Time to break out the Teal - from head to toe across the country!

Wear Teal Day for the Ovarian Cancer National Alliance is Friday, September 7th. Help spread the word by wearing teal -  and posting your picture on their Facebook page.

I can't wait to receive my Teal Toes symptoms cards - once you get the conversation started, have the symptom cards handy to pass on.

The Chicago skyline will glow with teal on September 21st for the NOCC Teal Lights Celebration and Fundraiser.

They will Turn the Canal Teal in Indianapolis at a free event on September 27th.

Are you down under? Join the 100 Women Walk from Docklands to Donvale in Australia on September 8th. This walk is named for the 100 women who are newly diagnosed with ovarian cancer every month.

Join the Teal Magnolia's for their Ladies Only Golf Tournament in Tallahassee, FL on September 27th.

How about a climb for life? Hike the Wasatch Mountains in Utah while raising funds for ovarian cancer research and awareness September 14-16th. I'm sure this is a very powerful event for the survivors.

September 7th will be Ovarian Cancer Awareness Night when the St. Louis Cardinals play the Milwaukee Brewers.  I hope there will be lots of teal along with the Cardinal red in the stands.

Also in the St. Louis area, September 23rd will be the Families Run for Ovarian Cancer 5K/Walk in Forest Park. This fund raiser for ovarian caner research at the Siteman Cancer Center has raised $125,000 in the last 5 years and has a goal of $75,000.00 for 2012. We want to see Dr. David Mutch with a BIG donation check this year!

So what is the point of all this Teal? - it is to start the conversation with your co-worker, a neighbor or your plumber. There is still much work to be done to put this silent killer to rest.

Why We Keep Walking

It's been a week since the Walk to Break the Silence for Ovarian Cancer but there has been no end to the need to spread the word. I have had two recent opportunities this past week.

  
 Northwest Community Hospital's Robotic Gynecological Surgery Institute will be offering a Women's Pelvic Health Seminar. The marketing collateral associated with the seminar on the daVinci Robotic surgical system lists pelvic pain and uterine cancer. Any complete and thorough discussion of pelvic health should include ovarian cancer symptoms. Let's hope the presenters will address areas of health awareness and not return of capital investment of medical equipment.

While looking on the Chicago Tribune website for coverage of the NOCC Walk, I came across a Mayo Clinic Q & A column from 2010. The question, posed by a 70 year old woman who had had a hysterectomy 20 years prior, was on the necessity of gynecological exams.  The reply from a gynecologist at the Mayo Clinic included the statement that removal of the ovaries meant there was no longer a risk of ovarian cancer. This is not true. Although the risk has been reduced, because of the similarity of the cell structure of the peritoneum and the ovaries, a risk of primary peritoneal cancer is still exists. A further understanding of the genus of ovarian cancer's potential initial source in the fallopian tubes also poses potential risks. A newspaper column is not medical advice and is at the mercy of editing. It is an unfortunate loss of the potential to spread accurate information by one of the nation's most highly respected medical institutions.

The opportunities to spread the word abound. And it is the Teal Tribe that needs to keep walking.

Break The Silence

It's been a big week for Team Chasen A Cure and the NOCC Walk to Break the Silence. The donations are over $200,000 and there is still a week to go. Thanks to friends, family and neighbors who contributed this week. Your support is amazing and we will be thinking of all of you every step of the way.

Melanie and Cheryl did a wonderful job of spreading the word and educating women at the It's Everything for Women event this past Thursday night. Thanks to NOCC Illinois for their contribution of bracelets, handouts and symptom cards. The ladies' experiences with visitors to their table showed that there is much work ahead of us. The misconceptions about Ovarian Cancer are rampant; another reason why it has received the tag like "the cancer the whispers". Perhaps it is as simply as the old real estate adage - "location, location, location." With your gynecological organs hidden from view and silenced with aging; too many women think that they are safely protected by the perhaps at best annual Pap smear. The cause marches on to Break the Silence.

Cancer Warrior - Dr. Ernst Lengyl

The goal for more survivors, targeted therapy treatments and teamwork in research is the goal of the Ovarian Cancer Research Fund. At the 2011 Survive and Thrive course at the Feinburg School of Medicine, one of the speakers was Dr. Ernst Lengyl of the University of Chicago. Dr. Lengyl, a gynecological oncologist and cell biologist, is a 2004 and 2005 Liz Tiberis award winner and a 2012 OCRF Program Project Development Grant Recipient. Dr Lengyl's team will be focusing on microRNA's in normal healthy cells being re-programmed by tumor cells.

I think I can speak for several in the lecture hall that day at Feinburg when I say that we were not all able to grasp the high level of science that Dr. Lengyl presented to us. Still knowing that right here at The Lengyl lab at U of C, Dr. Lengyl and his team have a goal - to improve survival and to meet the challenges that make ovarian cancer the most deadly gynecological cancer, and to beat it.

I feel privileged to have heard Dr. Lengyl and hope that very soon Dr. Lengyl's name will be linked with the CURE for ovarian cancer. There are times when ribbons just don't seem like enough. When you want to do more, consider donating to OCRF.

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Like us on Facebook! Chasen A Cure for Ovarian Cancer

Dr David Mutch - Ovarian Cancer Warrior

The donations are coming in strong for the NOCC Walk to Break the Silence - over $100,000 strong and there is still plenty of time to give a donation.

One of the warriors in the fight against ovarian cancer is Dr. David Mutch of Washington University Siteman Cancer Center in St. Louis. Dr. Mutch is outstanding physician and researcher - possessing the  qualities everyone seeks in their doctor - someone who values the relationship he has with his patients and who is tireless in his efforts towards their care. At the 2011 Survive and Thrive course at Feinberg School of Medicine, I saw first hand the respect that Dr. Mutch has among his peers. Whenever I mentioned Dr. Mutch's name, there was a resounding acknowledgment from colleagues from Northwestern to Vanderbilt University as his former residents took the time to mention to me that they had been under his guidance.

Dr David Mutch receives a donation for the Washington U Research Group for Ovarian Cancer at the 2011 Families Run for Ovarian Cancer in St. Louis, MO. Photo credit: Cheryl Hartson Johnson

Having Dr. Mutch in the battle gives confidence and hope to survivors for a bright and long future.

The Teal Tribe

It's great to watch the donations roll into for the 2012 NOCC Walk to Break the Silence.
Time to hear more about the Teal Tribe! At the 2011 Walk the joy of the Survivors made the day. In their teal Survivor's shirts; women of all ages celebrated life overcome and renewed. These women have fought and won; and continue to fight their battles. They are truly Wonder Women.
Next are the families proudly remembering mothers, daughters, aunts and sisters. As Yankee's manager Joe Girardi states in a PSA for NOCC "Ovarian cancer is more than a woman's disease. It affect the entire family."
Join our Team Chasen A Cure by making a donation or showing your support. Make a difference for a Survivor.

"Promise me you will always remember..."

Rev Erica's Peeps

Wonder Woman

"We heard it...."

"Forever in our hearts"

What is it all about?

Perhaps you are wondering what a "walk" is all about and I thought a review of the 2011 Walk to Break the Silence would be helpful. One might think that a gathering focused around cancer would be a depressing time but the NOCC Walk is an uplifting, empowering event. Music and laughter, education areas and sponsor tents, snacks and raffles fill Diversey Harbor. The highlight is the gathering for the Survivors' photo - and Melanie will be front and center this year - I'm sure in her St. Louis Cardinal's cap. Ovarian cancer does not get the same retail visibility of other causes; and with its very aggressive progression, it is all the more reason to spread the word. Next up - the Teal Tribe!

2011 NOCC Survivors' Photo

Hereditary Ovarian Cancer - Empower Yourself

Reading through posts and comments on Ovations for the Cure leads me to the topic of Hereditary Ovarian Cancer. Ten percent of ovarian cancer cases are considered the result of inherited genes or a hereditary cancer. For families with the gene alteration, the lifetime risk of developing ovarian cancer increases to 60%. These odds should send every women who has a family member with ovarian cancer to arm herself with the facts. This is mission of FORCE - supporting awareness and advocacy specific to hereditary breast and ovarian cancer. Along with breast and ovarian cancer links, there is HNPCC or Lynch syndrome which effects both men and women as an inherited risk of colon, endometrium and ovarian cancers. I have heard women at seminars on ovarian cancer ask the questions - afraid to connect the dots - "what about my grandmother's stomach problems no one wanted to talk about?" - "I don't want to frighten my granddaughters." Go to your primary care physician and gynecologist armed with the facts and refused to be dismissed by the odds. Don't play the percentage game. Empower yourself - we need survivors.

It's All About Sisters

This year's Walk to Break the Silence opening ceremony will be co-hosted by ABC 7's Stacey Baca and her sister Lynn, a 9 year ovarian cancer survivor. Diagnosed at 33 years old, Lynn learned the importance of being your own medical advocate. Always speak up for yourself and your health! Read about the courage, strength and determination learned from her younger sister here NOCC Illinois Press Release. Strength in sisterhood! A good theme for 2012.

Stacey Baca c/o ABC 7 News

Me and my Big Sister

Join Team Chasen A Cure

It's time to join Team Chasen A Cure at the 2012 Walk to Break the Silence on Ovarian Cancer.

Last year's walk was a wonderful outpouring of strength for women and their families whose lives have been affected by Ovarian Cancer. It was humbling to receive your support - to walk among the Survivors who celebrate life transformed; families who, like myself, honor the memories of those beloved - mothers, aunts, sisters and daughters. It was a day of celebration and song; when the clouds parted and sunshine blessed the crowd. But 2012 will be special because this year, we walk as a team - Melanie and I walk together - and you are welcome to join us.

Become part of Team Chasen A Cure For Ovarian Cancer and join us on May 5th at Diversey Harbor. Please support us with a donation to the National Ovarian Cancer Coalition in honor of Team Chasen A Cure at nocc.kintera.org/illinois/ChasenACure. Please support us by spreading the word so that every woman is aware of the symptoms of ovarian cancer because there is no early detection test. Awareness is the answer to saving lives. Keep watching here for more news.