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Stories of Inspiration

You Get What You Give: Empowering My Community Through Education

By October 15, 2021No Comments

My exposure to cervical cancer began in 1994, at age 24, when I had my annual gynecological appointment, and my pap came back abnormal. My doctor called to have me come back into the office for a meeting. She told me I had pre-cancer cells, and I had two options; I could have a cone procedure done or a less invasive LEEP procedure.  

I chose the cone procedure to make sure all pre-cancer cells were removed. In the meantime, all these crazy thoughts were running through my mind, and I needed to begin educating myself. This news blindsided me, and I needed to do some research.

I finally wrapped my mind around the next steps, and my doctor called me back the day before my cone procedure and had me come into the office. She wanted to push me towards the LEEP procedure because it was less invasive. She was concerned that I would not be able to carry a baby if she performed the cone, and she would never forgive herself if this happened. She sent me to her colleague who performed these procedures regularly. I met with her colleague and decided to move forward with the less invasive option. I scheduled my procedure for a few weeks out.

Two weeks later I found out some unexpected news…….I was pregnant!  

I wondered how this would change the current path I was taking. Finally, I met with my doctor, and she was thrilled! She said this baby could save my life; delivering the baby vaginally could possibly slough off the pre-cancerous cells. 

Nine months later, in 1995, I delivered my first daughter, Taylor, and began a clean bill of health. I continued to get paps every six months to make sure the cells did not reoccur. Eighteen months later, in 1997, I delivered my second daughter, Cydney.  

All was good in the world until 2009, when heavy bleeding started. I was standing in the line at Shoprite with my kids and hemorrhaged through all my clothes. 

It was awful. I went through testing and found a mass on my uterus and an elevated CA125 level, sometimes an indication of cervical/ovarian cancer. 

We scheduled surgery and, at the age of 41, I had my cervix and uterus removed. Thankfully, the biopsy came back benign. I continued to have my CA125 monitored and a vaginal ultrasound at my gynecological checkups twice a year. 

Everything seemed to move in the right direction until January 2012. Then, unexpectedly my mother, who was in Florida, became ill. It was a Thursday, and my father called to let us know that my mother was not feeling good and they were trying to get a doctor’s appointment with a gynecologist. My mother was 69, and her primary care doctor told her at age 65, she did not have to go to a gynecologist any longer. Coincidentally, I was flying down for the weekend and anxious to get a grasp on the situation.  

I arrived in Florida with my two children to find my mother incapacitated. She could barely move with all the signs; back pain, bloating, fatigue, weight gain – you name it. It was way worse than I ever expected. My mother was active and played golf several times a week, and now she couldn’t even get off the couch. My father told me she had seen a doctor that morning, and she was having surgery on Monday to have a mass removed on her ovary. In preparation, my sister flew down, and I sent my kids home without me on Sunday night.

Monday was surgery, and we were told if surgery is 1.5 hours, it’s good. If it’s longer, it may be cancerous. The doctor went in and removed a tumor from my mother, ultimately taking 5 hours. After hour 3, we knew we were dealing with an unexpected road. The doctor explained what transpired during surgery and diagnosed my mother with stage 3C ovarian cancer. They removed the tumor, but she had spots on her peritoneal cavity. He told us that we had 18 months, five years if we were lucky.

                                                                                                                                                                 

My mother, the bravest person I know, handled this with composure. My brother was getting married in a month, and her priority was to be well enough to fly home for the wedding. Needless to say – she did it! She had worked to strengthen herself to be able to fly home, attend the wedding and begin her treatment at Fox Chase Cancer Center in Philadelphia. We felt bringing her home to NJ rather than treatment in Florida was the best decision. Family and friends would surround my mother, Anita, and my father, to assist during treatment. An entire education process landed us to choose Fox Chase Cancer Center as her place of care. 

Each sibling took a hospital and researched it, along with the doctors. FCCC was ultimately the winner. My gynecologist knew the head doctor there and assisted in securing an appointment the Monday after my brother’s wedding. As we started the journey together, there was so much to learn. 

We did some research but couldn’t find any support groups. Finally, a high school classmate told me to reach out to Vanda Soldati, a fellow classmate whose mother passed from Ovarian Cancer in high school. I reached out to Vanda, and immediately our lives began to change.

Vanda was involved with the NOCC and immediately jumped into action to help support our family, floundering with education, support, what to expect, etc. Vanda sent out a care package, shared information, and told me the questions to ask along the way. She was an angel in disguise and a huge support system. I leaned on Vanda for support and encouragement. My mother went through her first round of chemo and never complained once. She was a survivor and was not going to give up. Vanda asked her to speak at an NOCC event sharing her journey with others. 

My mother, hesitant at first, decided she should share her journey and let others know there is support. So from this moment forward, I became a volunteer with the NOCC.

Unfortunately, my mother’s cancer returned 11 months after her last treatment. She, once again, entered treatment with her head held high. I requested that she and my father be tested for the BRCA gene, which they did, and both came back negative. This was important to me because, as my mother was in treatment for ovarian cancer, my ex-mother-in-law was also in treatment for ovarian cancer. This meant my children needed to be on high alert. I then went through a battery of genetic testing, resulting in a negative BRCA test as well. My daughters are 24 and 26, so it is time to think about them getting tested as well.

My mother’s journey lasted 3 ½ years, and she never complained once. She went through several types of treatments until we exhausted all options. The day the doctor told her there were no other options was one of the hardest days as she decided to go home on hospice. It was an eye-opening and educational experience. I remember asking my mother if she was afraid to die, and she said, “no.” She only kept apologizing for “getting” sick. I was proud to be by her side every step of the way and to have the support of the NOCC. She gained her angel wings on October 10, 2015.

In 2017, I went for my gynecological checkup, and my CA125 came back elevated. Since my mother passed from ovarian cancer, my doctor always ordered a vaginal ultrasound in addition to the CA125 test. Unfortunately, the ultrasound showed a mass on my right ovarian. I was in disbelief…..here we go again. 

I met with my doctor and scheduled a complete hysterectomy. I was 48 at this point and was not having any more children. I had a laparoscopic hysterectomy two weeks later. Waiting for my results was nerve-wracking, but I was so thankful when they came back benign.  

It has been a long journey, and it’s never over until it is over, so I continue to be monitored closely, as well as my children. It is scary that both their grandmothers passed away from ovarian cancer, and their mother has had some run-ins with the disease. However, my children are well educated, know the signs, and ask for the CA125 test as well as vaginal ultrasounds each year. So, is it always on our minds? Yes, of course, it is….and it’s our duty to spread awareness as well. The void of losing my mother will never be filled, but I can keep her memory alive by bringing attention to ovarian cancer and spreading awareness. My mother’s motto was, “You Get What You Give.” I can’t think of a better way to live out my life and honor her.  

Gina Sapnar

Gina is a passionate member of the NOCC Mid-Atlantic Region. Gina is dedicated to spreading early awareness and education in her local community of ovarian cancer’s risks, signs, and symptoms.

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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