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Survivor Stories

As shocking as it can be to receive a diagnosis of gynecologic cancer, we want you to know that No One Fights Alone. We hope these personal stories of diagnosis, treatment and survival from women who have persevered and triumphed over these diseases provide comfort and support for your journey.  

If you would like to share your story, please send it to ogccmail@gmail.com

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Resource Guide

OGCC/Rhonda’s Club has compiled a resource guide for newly diagnosed ovarian and endometrial cancer patients with practical information on what to expect during treatment, frequently asked questions, a glossary of medical terms and other useful facts. This guide is included in our patient care bags distributed free of charge to patients.

rhonda oziel

Rhonda’s Story

When she learned in 1994 that she had ovarian cancer, Ms. Rhonda Oziel was confronted with a lack of readily available information on the disease and its treatment.

She became a founder of the Ovarian & Gynecologic Cancer Coalition of Greater Washington, which was later renamed OGCC/Rhonda’s Club in her honor.

OGCC/Rhonda’s Club Announces Grants for Gynecology Oncology Nurses

OGCC/Rhonda’s Club is pleased to announce a new initiative to offer grants to nurses working with gynecologic cancer patients. These grants of up to $750 can be used to attend professional conferences, certification training or classes in the gynecologic cancer specialty.  Our goal is to advance nurses’ skills in patient care and treatments to help relieve some of the professional challenges nurses face and assist the quality care they provide patients. 

Nurses who are currently caring for gynecologic patients in a hospital, clinic or private practice in the DC/Maryland/Northern Virginia area are eligible to apply. Applications will be evaluated on a rotating basis within 30 business days of submission.  Applications can be accessed at:

http://www.rhondasclub.org/images/docs/ogcc-nursing-grant-application-1-23.pdf

 

Our Patient Support Line is Open...

If you're an ovarian cancer patient and are feeling overwhelmed by these challenging times and unsure of what it means for you, remember that help is just a phone call away. Our national organization, CRA, has an oncology social worker available to chat Monday through Friday. Call 212-268-1002 and ask for Tracy.  If she misses your call she'll get back to you within 24 hours.

                                           

New Services for Uterine Cancer Patients

Share Cancer Support has set up a hotline to answer your Uterine Cancer questions.  Whether you have a uterine sarcoma or endometrial cancer diagnosis or you're a friend, family member or caregiver of someone who does, Call 844-582-6005.
SHARE also has added a Clinical Trial Matching Service offering patients a free, confidential, personalized Clinical Trial referral service.  You can access this service at:  https://www.sharecancersupport.org/breast-cancer/clinical-trial-matching-service/

Upcoming and Recent Events

 Cervical Cancer Awareness

Nearly 13,000 women in the U.S. are diagnosed with cervical cancer each year, but the disease is preventable with human papillomavirus (HPV) vaccination and appropriate Pap and HPV screening.  Because HPV affects both men and women and may not show symptoms, the Centers for Disease Control and Prevention recommends routine vaccination for everyone ages 9 to 26 as well as certain other individuals up to age 45.  

Risk Factors…

The Foundation for Women’s Cancer encourages everyone to learn about the risk factors associated with cervical cancer.

  • Almost all cervical cancer is caused by a persistent human papillomavirus (HPV) infection
  • Cervical cancer usually affects women between 30 and 50, but younger women are also at risk
  • Smoking weakens the immune system, which can lead to persistent HPV infection

Know what to look for…

See a doctor if you are having any of these symptoms:

Abnormal vaginal discharge or bleeding
Bleeding after vaginal sex
Vaginal odor
Pelvic or abdominal pain

And what to do…….

If you experience any of these symptoms, a pelvic exam (including a rectovaginal exam) and a general physical should be performed. If the exam is abnormal, you might be advised to undergo an HPV test, a colposcopy (observing the cervix through a magnifying scope) and a biopsy, depending on the results of the colposcopy.

If cervical cancer is suspected or diagnosed, it is important to seek care first from a gynecologic oncologist—medical doctors with specialized training in treating gynecologic cancers who can manage your care from diagnosis to completion of treatment. 

 

OCRA National Conference 2022

Our national organization, the Ovarian Cancer Research Alliance https://ocrahope.org/, marked gynecologic cancer month in September with a virtual conference that brought together hundreds of patients, survivors, and supporters from 46 states and across the globe.   

Watch this space in November for video links to all sessions from the conference including:

  • More than 20 experts presenting the newest information in ovarian cancer research and care: where research is headed, symptom management, how ovarian cancer is connected to other gynecologic cancers
  • Ask the Experts panel responding to questions with the latest updates around genetic testing, treatments, and survivorship.
  • Attendees participating in interactive breakout sessions covering issues like rare ovarian cancer care and managing recurrence.

Update on Gynecologic Cancer Research

The Society of Gynecologic Oncology (SGO) held its Annual Meeting on Women’s Cancer in March 2022.  Highlights of the latest research findings on gynecologic cancers are summarized by Annie Ellis, member of the Ovarian Cancer Research Alliance’s Scientific Advisory Committee at this link:

https://ocrahope.org/2022/04/ovarian-cancer-highlights-society-of-gynecologic-oncology-meeting-2022/     

In the News

Rhonda's Club Volunteer Interviewed on Local News
Congratulations to Annamarie DeCarlo, long-time gynecologic cancer survivor and Survivors Teaching Students volunteer who spread the word on ovarian cancer awareness in an interview aired on Fox 5 local news on September 27.  Hear what she had to say at this link:

https://www.fox5dc.com/video/1123092?linkId=100000152167762&fbclid=IwAR1ypNFYVj_jNwXA6ipmyn2YFTuHM35X0HW2hKexMI8_tOkUFvQvzV1VHz0

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Uterine Cancer Increasing in U.S. with Black Women Facing Highest Mortality Rates
The New York Ti
mes reported on troubling trends in uterine cancer.  Read the update here:

https://www.nytimes.com/2022/06/17/health/uterine-cancer-black-women.html?referringSource=articleShare

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Doctor-Patient Communication
 JoAnn Symons, president of Rhonda’s Club and an ovarian cancer survivor, was interviewed for WTOP News on doctor-patient communication at:

https://wtop.com/health-fitness/2019/02/the-bad-news-giving-and-receiving-a-terminal-diagnosis/

 

Get Involved

Research Opportunity for Survivors with a Genetic Mutation:  Connecting Families to Overcome Ovarian Cancer” is a research study funded by the National Cancer Institute and conducted at Emory University. They are recruiting survivors and their close relatives to become “citizen scientists” and help them develop a website and print materials to expand access to genetic services for families affected by ovarian cancer.

To summarize the study:

"Today it is known that 1 in 5 women with ovarian cancer have an inherited mutation in cancer-causing genes. Early identification of mutation carriers can enable life-saving prevention options. Recent guidelines encourage all women with ovarian cancer and their close blood relatives to consider genetic counseling. Currently, we have little guidance on how to make sure that survivors and their close relatives are aware of this recommendation and able to access genetic services. “Connecting Families to Overcome Ovarian Cancer” is funded by the National Cancer Institute. The study team is seeking 30 ovarian cancer survivors and relatives to participate in an online working group for Fall, 2020. The group will discuss ways to reach out to ovarian cancer survivors and their relatives to help them consider free genetic counseling services. The information gathered will be directly applied to develop the content and format for a website that will be offered to ovarian cancer survivors and their close relatives who may carry genetic mutations."

For more information, click on this link:                                

file:///C:/Users/Jo/AppData/Local/Temp/Connecting%20Families%20to%20Overcome%20Ovarian%20Cancer_Study%20Flyer.pdf

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Coping with COVID-19                              

The COVID-19 epidemic has unsettled everyone’s life, including forcing OGCC/Rhonda’s Club to postpone several events and classes planned for spring.  We intend to re-schedule when public health conditions allow.  In the meantime, we’ve compiled the following resources to guide you, especially those in treatment who may have questions about maintaining your treatment schedule, visiting hospitals and doctors’ offices, and similar concerns. 

from our national organization, OCRA…
https://ocrfa.activehosted.com/social/06997f04a7db92466a2baa6ebc8b872d.840

from the Foundation for Women’s Cancer…
https://www.foundationforwomenscancer.org/news-stories/covid-19/

from the Dana Farber Cancer Institute….
https://blog.dana-farber.org/insight/2020/03/tips-for-keeping-your-mind-healthy-and-active-in-the-time-of-covid-19/?utm_source=newsletter&utm_medium=email&utm_content=Read%20More%20%3E&utm_campaign=spotlight

If current conditions find you shopping online...
Please sign up with at SmileAmazon.com to support Rhonda’s Club at no cost to you every time you shop online at Amazon.  Just log onto Smile.Amazon.com and designate the “Ovarian Cancer Coalition of Greater Washington” (that’s us) and Amazon will donate a portion of the money you spend to Rhonda’s Club.  We greatly appreciate your support!

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RHONDA'S CLUB 2020 ANNUAL REPORT

Rhonda’s Club is empowered through contributions of time, energy and dollars to support survivors of gynecologic cancers in direct and practical ways, engage in outreach to our community, raise awareness of these diseases, and promote medical research to find better treatments and cures. We have assessed both the measurable and intangible outcomes of our programs in the areas of Medical Education, Assistance to Survivors, Public Awareness and Outreach, and Research in 2020 and present them here for your review. Please read more about our activities here.

We are grateful for your moral and financial support.  Every year, we lose too many good women to gynecologic cancers.  Please help us turn the tide against these devastating diseases.

Thank you,

JoAnn Symons, chair
Clare Donelan, Treasurer
Pat Goldman, founding member
Susan Kim
Mary Kinler
Erika Lunder
Christy Schmidt
Patricia Seggerman
Joan Stieber
Paige Whitaker
Susan Yaffe-Oziel




 

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