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Stories of Inspiration

I survived cancer, but the fear is far from over

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

My first symptom — abdominal pain — started eight months before my diagnosis. Because I had been healthy my entire life, and because the pain came and went through the months and wasn’t consistent, I didn’t think it was serious. Twice I thought it might be a urinary tract infection: I saw a same-day physician assistant the first time and later a nurse practitioner. But ovarian cancer is very commonly misdiagnosed because the symptoms are vague and easily mistaken for everyday ailments. Pelvic pain could be cramps. Fatigue could be from a busy schedule. Abdominal swelling could be from last night’s dinner.

It wasn’t until my abdomen started swelling enough to make me look four months pregnant that I made an appointment to see my family physician last December. She took one look at me and my family history of cancer (there’s a lot of it) and was worried right away. Six days, an ultrasound, a CT scan, and a whole lot of blood tests later, I was called into her office and told to bring my partner with me. We braced ourselves, knowing it wasn’t going to be good news. But nothing prepares you for the moment when you find out you have cancer.

It was two days before Christmas, my favorite time of the year. I should have been wrapping gifts or baking cookies with my kids. Instead, I sat in the doctor’s office while she tearfully explained that it had already metastasized throughout my pelvis, my liver, kidneys, bowel, and spleen, and was trying to spread its way up to my lungs. I was devastated. In between sobs, I asked, “Is this going to be my last Christmas?” My doctor responded softly. “I don’t know.”

Cancer type is determined by the original site of the malignancy. Mine started on my ovaries, but by the time I had my biopsy on Dec. 27, it was all over my abdomen. But at 43 years old, with a 14-year-old daughter and an 8-year-old son who were much too young to lose their mother, there was no way this was going to beat me.

The weeks and months that followed were surreal and emotional. With support from Swedes, I managed to continue working through my first three rounds of chemo. I lost my red hair, I grew weaker, and I fought through the pain and sickness. I’m lucky in that I responded really well to the treatment and was in good shape for my March 17 debulking surgery in Madison. They gave me a total hysterectomy, re-sectioned my bowel, resectioned my diaphragm, cut cancer off my other organs, and removed my spleen.

The timing, of course, couldn’t have been worse. I was in the hospital the week that COVID-19 shut everything down. My partner, Gareth, was the only visitor with me in the hospital, and even he wasn’t allowed there on my last day. I also couldn’t have visitors for my final three rounds of post-surgery chemo. They were long days in the little chemo rooms, all by myself.

Six months after my diagnosis I got the good news. “No Evidence of Disease.” They call it “NED” instead of “cancer-free” because there’s no way to know for sure they got all of the cancer cells. As with all cancers, your chances of avoiding recurrence are better the sooner it’s detected. As a Stage IV ovarian cancer patient, the numbers tell me there’s a 90% chance the beast will return in my lifetime. My situation is particularly challenging because I tested positive for the mutated BRCA1 “cancer” gene. I’ll be on oral chemo medication to keep it at bay indefinitely. I am a cancer survivor now. But the terror is far from over. Not a day goes by that I don’t worry that it’s returning. I hold my head high and remain positive for my loved ones. I pray that I am one of the lucky ones who survive for years following my diagnosis, that I’ll be here for my daughter’s graduation, and that I’ll dance with my son at his wedding.

Ovarian cancer has taught me SO much. It’s taught me to appreciate life and all the little moments. It’s taught me how blessed I am with so many friends and family members who care. It’s taught me life is short, so don’t waste time worrying or trying to please others. It’s taught me that it’s OK to be vulnerable, to say “No,” and to ask for help sometimes. It’s taught me that I need to take care of myself as well as I take care of my children so that I can continue to be here for them. I would tell a newly diagnosed patient how sorry I am, that this is not going to be easy, and their life will never be the same. But then I would tell them to roll up their sleeves and get ready to fight because you can do this! Lean on your loved ones, stay positive, cry when you need to.

As odd as it sounds, I feel some days like I’ve been given a gift. Until you have stared your own mortality in the face, you have no idea how precious life is and what is really important. The brave people I’ve written about through the years understand. And now, weakened and scarred, but somehow stronger and prouder, I know how it feels to be a survivor myself.

Emily Tropp

Emily Tropp was diagnosed with Stage IV ovarian cancer in December 2019 at the age of 43. With the help of her partner, Gareth, and her children, Grace (14) and Ethan (9) she went through six rounds of chemo and surgery and has been NED since June 2020. She works as a public relations specialist for SwedishAmerican Health System in Rockford IL.

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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