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Stories of Inspiration

My Ovarian Cancer Journey

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

My story begins in March 2019 when my gynecologist noticed that my uterus felt enlarged during my annual exam. She ordered a transvaginal ultrasound, which detected a 9cm mass in my left ovary. My bloodwork looked stable and my ca- 125 tumor marker was within the normal range, so we were optimistic the mass was benign. But during this time I became increasingly aware of symptoms including pain/pressure in my abdomen, persistent bloating, and frequent urination.

My newly-referred gynecological oncologist/surgeon gave me two options: surgery to remove the mass and left ovary/fallopian tube or wait a few months to monitor its growth. Given my healthy blood panel results, it seemed like a viable option to wait it out. But as my symptoms were increasing with each day, I opted for surgery without hesitation.

I went in for surgery on April 26, 2019, feeling hopeful my story would end here. But unfortunately, the biopsy results tested positive for cancer and a hysterectomy was also necessary.

The surgeon notified my mom and boyfriend who were in the hospital waiting room, and they were forced to make a very difficult decision on my behalf: either proceed with the hysterectomy that same day or give me the opportunity to consider freezing my eggs and endure a second major debulking surgery. I awoke from the three-hour surgery to hear the worst news of my life, but I was relieved this life-changing decision was still in my hands.

A few days later, I received even more bad news—the remainder of my surgical biopsy results revealed the cancer was not only in my uterus, but also my colon, omentum, and abdominal lymph nodes. I was told I had stage 3C low-grade serous ovarian cancer—a rare, aggressive form of cancer that’s slow growing, difficult to detect (thus my normal blood panel results), and resistant to chemo.

So not only did I require a full hysterectomy, but the doctors also wanted to resection my colon during the second surgery, followed by six rounds of carbo/taxol chemotherapy. I was still undecided about whether I wanted to freeze my eggs, but knowing a surrogate would be my only option for having a biological child, I decided that eventually adopting a child would be the best choice for me.

Six weeks later, I underwent a second surgery to remove my right ovary, uterus, omentum, appendix, and colon resection. Another six weeks later, I had my port placed and began my first round of chemo. With no family history of cancer, I opted for genetic testing, which fortunately all turned out negative. This was definitely a major win (and I graciously celebrate every victory), but I’m still left wondering how this happened to me—especially at such a young age. I finished chemotherapy two weeks after my 30th birthday on October 10, 2019. Tumor tests revealed that my cancer is hormone-responsive, so I’ve been taking a daily maintenance medication (Letrozole), which lowers my estrogen production and reduces my chances of recurrence.

Ovarian cancer has taught me so much about the fragility of life, and the importance of living in the moment and not wasting time sweating over the small stuff. But by far the silver lining of getting a cancer diagnosis is being able to spread awareness and help others. I’m incredibly grateful for NOCC as it provides a resourceful platform for connecting with other ovarian cancer warriors and having the opportunity to fulfill this purpose.

Alisa Manzelli

Alisa is a 31-year-old Los Angeles native and dog mom to a Chihuahua-Terrier mix named Piper, who she and her boyfriend adopted as an extra source of comfort through treatment. She is an avid hiker, self-taught home baker, and animal rights blogger. She can be followed on Instagram @zellinator.

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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