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Stories of Inspiration

You’re Telling Me I Have Cancer?!

By May 17, 2021June 14th, 2021No Comments

My name is Sara and I was 34 years old and in the best shape of my life when I was diagnosed with ovarian cancer.

I had an IUD placed and on the follow-up placement ultrasound, they saw a cyst. I then had my CA125 drawn and it was normal. We followed up 6 months later with an ultrasound and still seemed just like a cyst. Then at my one-year post IUD placement follow-up ultrasound, the cyst had changed. My CA125 was only slightly elevated to 78. Thus started my journey. I met with a gynecology oncologist and surgery was scheduled. We were all very hopeful that it would turn out to be a cyst. I underwent a 6-hour laparoscopic surgery to remove the ovary/cyst. I refused at the time to sign for anything further as I wanted to have children and wanted to save my other ovary and uterus.

This is where my story takes a tragic turn. It was not a cyst. It was stage 3a high-grade clear cell ovarian cancer… my world fell apart. I had had no symptoms. My CA125 actually decreased right before surgery. How can this be?! I broke down in the hospital room. I cried. I screamed. I was broken. My doctor told me it was fertility vs survival at this point. We then decided to go back to surgery 2 days later, a large vertical incision, and remove all of my reproductive organs and biopsy everything in a 7+ hour surgery. This began the new chapters in my life.

Recovery from surgery was slow but I managed without any major complications. I started chemo about 3 weeks after surgery. I did do cold caps during chemo and kept 75% of my hair which was astonishing!! But such a complicated task! My chemo was carbo/taxol. I did carbo once every 3 weeks for 6 cycles and did taxol every week for 18 weeks. There was a lot of learning, a lot of crying, a lot of changes during that time. My body fought so so hard through chemo.

I finished chemo in December 2019 and started on a trial of oral and IV medications in Jan 2020 which will continue for 23 months. The oral medication is twice daily and the IV infusions are monthly. I see my doctor once a month and have regular labs and scans. I am currently about 1.5 years out from diagnosis and 1 year out from the end of chemo and am NED. My scan shows no evidence of disease and my CA125 is stable!!! My biggest worry besides dying was that I was going to lose myself when I was diagnosed. I was going to lose the positive outlook on life. I was going to hate my life going forward. That was all wrong. To those newly diagnosed you will be who you want to be/are. It will take some work, but you are still you and this time is trying but you can overcome it and push through and get back to YOU! I am a new version of myself, but my true character and outlook are the same. I still see the positive in life. I enjoy being active and getting outside. 2020 has slowed down the traveling but that is still a passion of mine! I am currently working with many girls to form a Young Ovarian Cancer Support Group on Zoom and I am so excited to bring this team together and show young girls that they are not alone.

Being diagnosed with ovarian cancer has taught me to say the hard things. There will be difficult conversations in life, not just with this diagnosis, but with life. They need to be had. Do not be afraid of what someone else will say. Say the hard things. Fight for your own happiness, ask for help, talk to someone, do not let yourself feel weak because of it. Being diagnosed with ovarian cancer isn’t your whole story. It’s your story and a huge part of it but it does not define you. YOU define you!

Sara Ianitelli

Sara is a nurse living in Livonia, Michigan who loves traveling with her boyfriend to new places and raising awareness of ovarian cancer wherever she goes! Hoping for more travel adventures in 2021!

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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