Skip to main content
Stories of Inspiration

My Ovarian Cancer Journey: Everything isn’t Menopause

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

“I am sorry, Mrs. Tener, but you have all the markings of ovarian cancer.” I heard these words. The ER doctor must be talking to someone else, not me. I immediately thought of our daughter Marisa’s pending marriage in five months in Hawaii…would I even be alive then? Ovarian cancer sounded like a death sentence to me…I knew it was not a ‘good one.’ How did I get here? Definitely with the help of all the doctors who missed this diagnosis- my gynecologist, primary doctor, two radiologists.

At my check-up in January, I told my gynecologist I wanted my IUD removed, I was eight months into menopause. The string was lost, I had a retroverted uterus – it would be super painful and he said forget about it. I remember the exam was particularly painful and also mentioned intercourse was painful too. Menopause he said. I asked him again about a CA 125 blood test for ovarian cancer. His answer was always ‘The test is not reliable; there are too many false positives that lead to unnecessary surgeries.’ In February of 2009, I started noticing little painless pings on either side of my pelvis. My stomach seemed a bit bloated and I could not hold my stomach in. I urinated at least four times a night; I felt a weird pressure in my lower pelvic area when I got out of bed. I spoke to my gynecologist all the time as he is my husband’s oldest friend. He attributed all my symptoms to menopause. I again asked could it be my IUD, he said no- it was the only thing he would be right about.

My husband and I went to the Bahamas in February and I felt lousy the entire time – I had a constant feeling of heaviness in my belly and was not hungry, always feeling full. The pressure in my lower pelvis was consistently bothering me every time I got out of bed. I was urinating quite frequently and also noticed sitting by the edge of the pool, rectal pressure that I thought were hemorrhoids, which had not bothered me in several years. Finally, in April, my gyno sent me for a pelvic ultrasound to locate the string, because I was adamant to remove the IUD. The technician couldn’t see the string and be having a hard time, so she did a transvaginal ultrasound.

The radiologist report said I had fibroids, my ovaries ‘could not be visualized.’ What did that mean? To top it off the report said ‘malignancy cannot be ruled out.’ My gyno said because of my age and menopause they were too shrunken and small to be seen, and the malignancy comment was there to “protect their asses.” Menopause. My primary just deferred to my gyno and sent me for a kidney/bladder ultrasound which showed huge fibroids. I immediately told my gyno I wanted a hysterectomy and he said to see a gastroenterologist.

The appointments were made and as I waited for early June, I was so fatigued and uncomfortable I could barely function. I insisted on the CA125. My gyno did it grudgingly, examined me, and said my fibroids were huge and he had noted in January my uterus was distorted. News to me.

He told me the CA125 was useless, ‘By the time they find it, it is too late anyway. Anything over 1000 you are dead.’ Mine was 1900. He told me to let him know what the gastroenterologist says. Four days later my husband insisted on going to the ER at the University of Pennsylvania. After 10 hours, after a simple cat scan, we received the grim diagnosis. Cut to July 2020. I am now grateful beyond words to be an eleven-year survivor of Stage 3C epithelial ovarian cancer.

Three days after diagnosis, I had an optimal de-bulking (with complications of course) and 7 rounds of chemo. Turns out, with NO family history I am positive for the BRCA 2 genetic mutation. In July 2013, I had a prophylactic double mastectomy with a FLAP reconstruction. Unusual I was told, but I have had chronic Post Mastectomy Pain syndrome ever since. Eight months later, my cancer recurred – another surgery and 6 more rounds of chemo.

I was so fortunate to take part in an immunotherapy clinical trial, whereby I received 30 vaccines comprised of my own tumor and blood cells. I also had 18 more rounds of compulsory chemotherapy during the trial. It is a miracle I am alive and I know it. I am grateful for every day. I will take every pain, memory, and side effect for the gift of life. My dream was to take my two grandsons to Disney World and we went last year to celebrate my 10-year ‘cancerversary.’

Forgive me for this rambling tale – we all have our own unique journey – I try to live in the moment, but as we know, our lives can change in a split second. Ovarian cancer has taught me that I can survive and endure things that I could not have even imagined before my diagnosis. The standard answers are all true in regard to appreciating every moment of life; however, I feel prior to this, my life coping skills were not as strong as they are now.

Make a donation

Contact us

Find a support group

Close Menu

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