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Stories of Inspiration

Gaining a Community and a Cause

By May 18, 2021May 26th, 2021No Comments

I had never heard of ovarian cancer. Breast cancer, yes; lung cancer, yes; pancreatic cancer, yes. Prostate cancer is well documented on my dad’s side of the family, but OVARIAN cancer? I never heard of it, never knew anyone who had it.

A common question is, “What were your symptoms?” I usually giggle and tell them that the first concerning symptom was an unusual vaginal discharge. An uncomfortable expression will usually appear; however, I’ve shared my story often enough that I’m not embarrassed and consider it a public service announcement.

In hindsight, the discharge was not the first symptom. I had been feeling extraordinarily tired and taking two-hour naps daily. Suffering from irritable bowel syndrome with diarrhea (IBS-D) starting in my 20’s, stomachaches or other gastrointestinal distress was normal for me. I had backaches, but because I had slipped a disk in high school, that was normal as well. I had noticed that my seatbelt seemed tighter, and I figured the bloating was due to perimenopause, which had been confirmed the year prior at age 44.

During a road trip to California, I talked to my husband about the bundle of ailments I was experiencing. We both agreed that I should contact someone as soon as we returned to Phoenix. Easier said than done: my gynecologist had retired a couple of years earlier, and I wasn’t excited about finding a new one (we know how much fun that can be, right ladies?). I looked through our in-network providers after our return and picked one based solely on my intuition.

When I called the office, the receptionist said it would be eight weeks before I could be seen. I told her I didn’t think I could wait that long, and she found me an earlier appointment on May 6, 2014. The doctor sent me for a transvaginal ultrasound, and two hours later, her name was announced by caller ID. There were vascular masses on my ovaries, she said, and scheduled me for a CT scan. The detailed scan showed the tumors were likely cancerous, so exactly two weeks after my first appointment, I went into surgery to remove my ovaries and fallopian tubes. I started chemotherapy with carboplatin and Taxol three weeks later, six infusions, three weeks apart.

In October 2016, I was painting a room when I felt pain in my lower left side. It persisted, and I promised my husband that I’d move my regular CT scan up if the pain continued for a week. The scan on November 17 showed a mass near my left descending colon. The cancer had returned.

The second debulking, or tumor removal, resulted in removing half of my left descending colon, followed by six sessions with the “Red Devil” (Doxorubicin) and carbo. Afterward, I started a PARP inhibitor for maintenance and have been NED (No Evidence of Disease) for 3.5 years. I must add that there was a silver lining to the dark cloud of recurrence: the bowel resection cured my irritable bowel syndrome! The theory is that the cancer attacked my body’s weakest point, which turned out to be the constantly inflamed part of my bowel.

Being freed from IBS-D along with reaching NED status sparked something within me: anger. My chronic anxiety and its chorus of “What Ifs” combined with IBS had created a vicious, paralyzing cycle, holding me back from things I wanted to do. Now I was determined to break the cycle. I faced the anxiety by banishing the “What Ifs” and began embracing “Why Nots.” Four months after finishing chemo, my husband, sister, and I traveled to Crater of Diamonds State Park in Arkansas. We didn’t find any diamonds, but we had fun looking! I also applied to be a guest speaker for a new patient education initiative for a pharmaceutical company and was accepted. This has allowed me to travel, meet sister survivors and raise ovarian cancer awareness from coast to coast.

The Phoenix Chapter of the NOCC has been beside me as I walk this teal-colored path. I attended my first Run/Walk in 2014 and was welcomed -literally- with open arms. The dedication displayed at the monthly meetings solidified my decision to become involved as a regular volunteer. I’ve met amazing women who have become friends and mentors. I’ve sadly had to say goodbye to amazing women, too; I carry them in my heart and advocate in their names.

While I try to find the silver lining in every dark cloud, I’m also a realist: I know I’ll be checking my rearview mirror for ovarian cancer for the rest of my life. Therefore, I continue to promote awareness and advocate for new therapies, which hopefully will one day lead to a cure. I took my fear and transformed it into a brave, confident, empowering force to be reckoned with. I am committed to educating all about the early signs of this cancer and sharing my experiences, hoping it helps another woman who, like me, knew nothing about ovarian cancer.

Anna Valencia Hall

Anna lives in Phoenix, AZ, with her husband Fred and their two Standard Schnauzers, RiRi and Ash. She describes herself as a “Teal Warrior, wife, daughter, sister, Schnauzer mom, activist and chaser of so many ADD-induced ideas/dreams/wishes that her husband should earn overtime for his lost weekends.”

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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