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Ovarian Cancer Patient Advocates: Survivors Help Steer the Future of Research.

By August 6, 2021August 8th, 2021No Comments

In their vision to eliminate ovarian cancer, the Department of Defense’s Ovarian Cancer Research Program (OCRP) was created to support critical research to “prevent, detect, treat, and cure ovarian cancer.” Since its inception in 1997, the OCRP undergoes a peer review process to determine which research should be funded. Patient involvement is very important from the beginning of the review process and adds a unique perspective and a sense of urgency.  Not only are researchers and gynecologic oncologists at the table, but also at the table are ovarian cancer patients, survivors, advocates, family members, and/or caregivers.  This coalition of individuals from across the ovarian cancer community provides insight and feedback on the final research recommendations, which ultimately help move ovarian cancer research forward worldwide. The NOCC sat down with two ovarian cancer survivors, Ilana Feuchter and Sachia Powell,  who have been past peer review participants to learn more about the program and why it is vital that survivors have a seat at the table to help steer the future of research.

 

Why did you initially decide to participate in the OCRP program?

Ilana Feuchter (IF): Like so many other survivors, I spent a lot of time on the internet when I was initially diagnosed. The more I learned, the more questions I had and the more I wished I’d paid closer attention in biology class. Over time, I kept googling unknown words or phrases until I realized I understood quite a bit for someone without any medical training. When I first heard about the program, I thought it would be a beautiful way to combine what I’d learned with my experience as a patient to potentially help advance ovarian cancer research. 

Sachia Powell (SP): It is important to me that survivors have a voice in what gets funded, and I was excited to help contribute to that voice.  

Please describe what is expected of survivors who serve on the panel.

IF: Survivors have the same voting privileges as the scientists who sit on the panel. They are not, however, expected to understand the science behind a given study. That’s what the scientists and physicians are there for! I’ll be honest that sometimes when they talk, it is like listening to a foreign language. That said, survivors are there to speak about the patient experience. We are told to focus on whether funding a given study would make a significant impact to those diagnosed with ovarian cancer or those who might be in the future.

SP: ​​Survivors are expected to read all the applications assigned to them – at least the parts that are pertinent to the impact of the proposal – and evaluate what impact the project will have on the teal community. Survivors are expected to listen to the scientists discuss the proposals, sometimes in very scientific terms, and ask for clarification when necessary.  Survivors are expected to feel comfortable speaking their opinions in a room full of people they don’t know, even if (and especially if) their opinions differ from others. Survivors are expected to represent the whole ovarian cancer community – not just those who are similarly situated to them – when they score the proposals presented to them. 

How did you benefit from participating?

IF: By participating in the OCRP program, I continue to expand my own knowledge about ovarian cancer. This in turn allows me to be successful as the Patient Insights & Advocacy Advisor for NOCC. Additionally, I’m always surprised that many of the PhDs on the panel have spent years in ovarian cancer research but have never met an actual patient! Once they can put a face to the disease, I think the researchers become more inspired to do the good work of researching early detection tools and treatments. 

SP: I learned how the scientists think and how I can help them more, and I gained relationships with scientists and other survivors that have opened up many wonderful opportunities and friendships. In addition, I feel that I have contributed to “doing something” about this disease.

How do you think the teal community benefits from having survivors participate?

IF: Having survivors on the panel brings real-world experience to the decisions being made. 

SP: The scientists are brilliant, motivated, and passionate about their work, but they don’t necessarily know what it’s really like to walk in our shoes. The scientists try to determine what our needs are and how to meet them, but you can’t ever really know unless you’ve been there.  By providing the scientist with the survivor perspective, the scientists have a better understanding of what we face, which allows them to focus on the things that will matter to us, and to avoid obstacles to our success.  

Would you recommend this role to other survivors?

IF: I would and I have! Applications to the OCRP require a recommendation letter from an advocacy group. I’ve written several letters for other survivors from my community, all of whom have participated in the program at least once. I encourage anyone who’s interested to apply in 2022. The OCRP welcomes the insights of new patients. 

SP: Absolutely!

To learn more about the Ovarian Cancer Research Program and ways that you can get involved, visit their website today.

Ilana Feuchter & Sachia Powell

Both Ilana and Sachia are past peer review participants for the Department of Defense’s (DOD) Ovarian Cancer Research Program (OCRP).

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Signs and Symptoms

Ovarian cancer signs and symptoms include:

  • Feeling the need to urinate urgently or often
  • Trouble eating or feeling full quickly
  • Pelvic or abdominal pain
  • Bloating
  • Back pain
  • Upset stomach or heartburn
  • Fatigue
  • Constipation or menstrual changes
  • Pain during sex

National Ovarian Cancer Coalition

30 Years of Courage

1991   

NOCC begins as a grassroots organization founded by advocates and survivors in Boca Raton, Florida

 1995   

NOCC incorporates as the country’s first national organization providing awareness and education about ovarian cancer.

1996   

The first national ovarian cancer information hotline is established (1-888-OVARIAN), now averaging 10,000 calls each year.

1998   

NOCC proclaims a week in September “National Ovarian Cancer Week,” with a declaration from President Clinton. “Walk for a Whisper” 5K Walk/Run is initiated.

2000   

NOCC and the ovarian community proclaim September as “National Ovarian Cancer Awareness Month.”

2002

The organization produces television PSA about early detection and distributes to 30 states.

2003

Ovarian.org received the Oncolink.com Award from OncoLink, the first online cancer resource founded by University of Pennsylvania cancer specialists.

NOCC receives the National Points of Light award in celebration of the success and impact volunteers have made in their communities.

2004

NOCC launches “Body Image/Body Essence” art exhibit by sculptor John Magnan as a tribute to his wife’s journey with ovarian cancer.

2006

NOCC launches the “Break the Silence” national education campaign.

2007

The “Break the Silence” campaign reaches 100M impressions.

NOCC helps launch the first consensus on ovarian cancer symptoms.

2008

NOCC moves its principal place of operation and state of incorporation/registration from Boca Raton, Florida to Dallas, Texas.

NOCC advocates help to double Department of Defense funding for ovarian cancer research to $20M per year.

2009

“Newly Diagnosed Patient Kit” is launched. DVD resource is made available in Spanish and Mandarin; 450,000+ pieces of literature are distributed nationwide.

2010

The Faces of Hope® program and term “Run/Walk to Break the Silence on Ovarian Cancer” are initiated. 

Annual fundraising events are branded “Run/Walk to Break the Silence on Ovarian Cancer®.”

2011

NOCC partners with The Dr. Oz Show to create his Break the Silence on Ovarian Cancer® campaign.

Over 1200 newly diagnosed women receive NOCC’s TEAL PACKET®

The “Ann Schreiber Ovarian Cancer Research Training Program of Excellence: A study by Dr. Ruth Perets” is supported by NOCC with a $50,000 contribution.

2012

NOCC supports quality of life research with the GOG 0225, LIvES Study, which is ongoing and conducted by the University of Arizona Cancer Center.

2013

More than 4,000 Faces of Hope TEAL totes are distributed.

2014

More than 575,000 pieces of education and awareness literature are distributed nationally.

NOCC affirms its commitment to research with the newest  initiative, collaborating with Stand Up to Cancer, Ovarian Cancer National Alliance, and Ovarian Cancer Research Fund to support the “Ovarian Cancer Dream Team.”

NOCC is featured in the highly coveted showcase window at 10 Rockefeller Plaza in midtown Manhattan.

2016

NOCC reaches its milestone 25th anniversary.

NOCC becomes an official charity partner for the New York Marathon and launches its first platform for endurance enthusiasts across the U.S - Team Teal®.

2017

Rejuvenate, the first event of its kind, is introduced by NOCC for survivors as a retreat experience centered around the mind, body and spirit; it later expands to a national series.

Not Knowing is Killing Us is launched as a hard-hitting national awareness campaign. 

2018  

NOCC's signature Run/Walk Series is rebranded and Together in Teal® Ending Ovarian Cancer is brought to life in communities across the nation.  

2019

Team Teal®, NOCC's endurance platform, expands internationally with participants in Greece and Canada.  

Together in Teal® Ending Ovarian Cancer is hosted at New York City's Intrepid Sea, Air & Space Museum, a national historic landmark.

2020

In response to the pandemic, NOCC introduces programming offering relief to women and their caregivers including home meal delivery, Comfort for the Soul, and online professional counseling through Comfort the Mind.  

Teal Hearts Network, a series of regional survivor support groups, commences in a virtual setting.

Together in Teal(R) hosts its first virtual experience, No Boundaries, and unites participants in 50 states and 9 countries.  

Stages of Ovarian Cancer

Stage 1

The cancer is confined to the ovary or fallopian tube

1A - The cancer is confined to one ovary only

1B - The cancer is found on both ovaries

1C - One or both ovaries are found with cancer cells spilling out from the ovaries

1C1 - Accidental rupture of the capsule by the surgeon during surgery

1C2 - Rupture of the capsule occurred before surgery

1C3 - Cancer cells are found in the fluid of the pelvis/abdomen

Stage 2

Growth of the cancer involves one or both ovaries with pelvic extension

2A - Extension of cancer to fallopian tubes or uterus

2B - Extension of cancer to other pelvic organs

Stage 3

Growth of the cancer involves one or both ovaries, and the cancer has spread beyond the pelvis

3A - Microscopic cancer cells found in upper abdomen or lymph nodes

3B - Visible tumor found in upper abdomen less than 2cm in size

3C - Visible tumor found in upper abdomen greater than 2cm in size, including disease on the surface of liver or spleen

Stage 4

The cancer growth is widely spread throughout the body

4A - Cancer is found in the fluid around lung

4B - Cancer is found inside the lungs, liver or spleen

National Ovarian Cancer Coalition

Stages of Ovarian Cancer

Before ovarian cancer - healthy ovaries

Stage 1 - Cancer is confined to one or both ovaries

Stage 2 - Cancer spreads within the pelvic region

Stage 3 - Average stage of diagnoses is stage 3C; cancer spreads to other body parts within the abdomen

Stage 4 - Cancer spreads beyond the abdomen to other body parts

 

National Ovarian Cancer Coalition