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Stories of Inspiration

Celebrating 10! How a Pair of Genes Changed My Life

By May 14, 2021June 14th, 2021No Comments

My story began in June of 2009 when I was about to find out that the word ‘genes’ can mean more than something you wear on the weekends. The path that I dreamed of when I was a young college student did not turn out exactly as I had planned. I probably seem normal to strangers walking down the street, but my journey has been anything but typical for a young woman.

The symptoms that would lead me to a startling discovery started right before my 29th birthday. I had long, heavy periods for months that were blamed on generic birth control or hormones. After several months of no answers, my doctor found a polyp in my uterus. With my mother’s history of endometrial cancer, I knew this could be serious. He had me wait a few months, but by that December the polyp and my conditions grew worse with three weeks at a time of painful bleeding. My surgery was scheduled for February 2010. The words of my doctor two weeks later will forever be burned into my brain. My mind went numb as my doctor told me that he was shocked because the results came back that the polyp was covering my entire uterus and it was endometrial Cancer.

Despite my shock and fear, I immediately sprang into action and became my own best advocate. I created a binder, did research, and tried to understand how this could be happening to a 29-year-old. My doctor ordered a CA125 test and it came back negative. I was placed on high doses of progesterone being that I was childless at age 29 and wanted to consider the preservation of my eggs to have a child in the future. The cancer was determined to be Stage 1 and, I decided to get a second opinion to be sure and took my biopsy samples across town (in a brown paper bag no less!) to UPenn Hospital in Philadelphia PA. They performed their own biopsy and determined the cancer was advancing. Time would not allow me to preserve my eggs and I needed surgery as soon as possible. I was devastated by the harsh reality that I would not be able to have children. For many years watching commercials with babies had me leaving the room since it was emotionally hard.

As my events were unfolding, my mother discovered she had a rare genetic disease called Muir-Torre Syndrome (a form of Lynch Syndrome). She found out she had a 50% chance of passing this disease onto her children. I was tested immediately, and it came back that I too possess the gene mutation explaining my recent cancer diagnosis. I met with the genetic doctor and began educating myself. I began a preventive care regimen that I must follow for the rest of my life. My genetic mutation was explained as hiccups or misspelled words in my genetic repair cells creating a high risk of many cancers. This includes an increased risk of developing colon and uterine cancer, and a greater risk of others such as the stomach, bladder, urinary tract, prostate, liver, ovarian, and various skin cancers.

I was now scheduled for a full hysterectomy two weeks before my 30th birthday on July 16, 2010. This included my fallopian tubes, ovaries, and uterus. It was clear that I would not have a celebration that I had looked forward to all year. The moments before heading to the operating room will stay with me forever as tears rolled down my face I said goodbye to my parents and my supportive husband. After the surgery, I had many complications. I then found out a couple of weeks later from a nurse that I also had Stage 1 ovarian cancer in my left ovary. The news was hard to digest, but thankfully I did not need to have radiation or chemotherapy due to both cancers being separate. I was very lucky in an unlucky situation.

Christa Schuckers Suchak

I am now 10 years cancer-free and just turned 40! I cannot express how proud I am of myself to have come so far. Although I did not have treatments, I have experienced many side effects that have challenged me along the way including chronic stomach pain, instant menopause without an option for hormone replacement until last year, weight gain, financial burdens, and the inability to have children through natural birth. I require yearly endoscopy, colonoscopy, and urine cytology testing along with checkups from a genetic dermatologist who screens me for skin mutations that can occur with Muir-Torre Syndrome. The awareness of Lynch Disease and ovarian cancer is very important to me. I’ve been involved in NOCC walks, seminars, and sharing my story with others in hopes of making a difference. I want to support not only ovarian, endometrial, and Lynch education, but for all cancers and diseases. I know my illness will always be a part of me, but it does not define who I am. Who knew how much a pair of genes would change my life! The best advice I could offer someone facing illness is to stay positive no matter how much it tears you down, fight for the life you deserve, and please be pro-active because no one at any age, class, or race is invincible to cancer, disease, and illness. Each day and year is a gift – what a year of milestones!

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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

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

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.  

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