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Stories of Inspiration

BRCA sisters by chance and best friends by choice

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

Hi, we are Amy and Nicole – BRCA Sisters. We have been best friends for years with an extremely close bond, we believe there is something extraordinary that we are now bound together by being BRCA gene carriers. To have someone by your side throughout this testing time is literally gold to both of us and we couldn’t have asked for a better partner in crime. We hold each other’s hands every step of the way.

Amy

My name is Amy, I’m 33 years old. I have a lovely husband Matt and we have two beautiful daughters, Grace (3 years old) and Darcy 7 months). I first heard of the BRCA gene when I was 29 years old. My cousin, on my father’s side, who is a doctor, informed all of our family about the gene and the possibility that we could be affected. His mother (my lovely auntie) passed away at 56 years old on 24th September 2005, after a 10 year battle with both breast and ovarian cancer. She carried the BRCA2 gene mutation. My cousin explained that the BRCA mutation can be inherited from your mother or father, and if my father tested positive then myself and my brother would stand a 50% chance of also inheriting the mutation.

In light of this, my father was tested and it was confirmed that he too is BRCA2 positive. At the time, I didn’t feel like I wanted to know whether or not I was affected. I felt safe in my bubble and continued to live my life, choosing not to know. The truth is I didn’t fully understand what having the gene meant and the associated risks. It wasn’t until after I had my daughter, Grace, that my feelings changed. I now had a much greater sense of purpose and an overwhelming feeling of responsibility to be around for her as long as physically possible.

In June 2017, whilst I was away on holiday with my family and our friends, I received the news that my test results were positive for the BRCA2 mutation. The predicted test results confirmed that I have an estimated lifetime breast cancer risk of between 45% and 85% and ovarian cancer risk, estimated between 10% and 30%. My heart sank when I first found out and I felt more sad and guilty for my baby girl, as she too now stands a 50% chance of carrying the gene.

Having had time to digest the news, I feel much more confident about my decision to undergo risk-reducing breast and ovarian surgery. I am forever grateful for my auntie and her legacy, allowing me the opportunity to find out that I carry the gene and to be in a position to do something about it – KNOWLEDGE IS POWER!

I am hopeful by the time my children are old enough to be tested, medical advances will have changed so they don’t need to make the same decisions I am making. My friends and family have all been extremely supportive along the way, and it’s been great to have (Nicole by my side.)

Nicole

Hi, I am Nicole, wifey to my high school sweetheart Nathan and mum of two, Teddy who is three, & Harper who is 7 months old. Finding out whether or not I was a carrier of the BRCA gene was a fundamental part of my existence. My mother who was diagnosed with breast cancer two years ago is a BRCA gene carrier from her father who passed away at a young age from prostate cancer. Her mother also had breast cancer in her early thirties and passed away at the age of 42. My mother even though she had known for a long time that she had the gene, chose that she didn’t want to do anything about it, but cancer had other plans. Her hysterectomy came first due to findings in her ovaries and then the year after she got breast cancer. After her diagnosis, the plan was to have a double mastectomy which would ultimately remove all of the cancer. Due to the cancer being so severe and fierce my mother then had to go through a grueling round of chemotherapy and radiotherapy. I remember her saying to me, my younger brother and sister, “Please find out if you have this I don’t want you going through what my parents and I have experienced.” I then thought it was essential that I should find out.

I already had one child from IVF, as I have suffered from endometriosis, polycystic ovaries, the inability to ovulate, and an under-active thyroid. I was desperately trying to get pregnant again but I thought if I am a BRCA gene carrier does that throw a spanner in the works. I had discussions with my IVF consultant to find out if I was a BRCA gene carrier would I be able to test my five remaining eggs. They advised me that it was possible but if the egg was to have the gene mutation I would not be able to use that embryo. After weeks of deliberating, I thought after five failed rounds of IVF and a miscarriage I just wanted my baby. I also felt torn as I naturally wouldn’t know if my firstborn Teddy was a carrier. I felt in this instance there was no ‘right’ or ‘wrong’ decision I could make and I wanted to go ahead to keep trying with the IVF. In the meantime, I went for my blood test for the BRCA gene which came back positive that I was a BRCA 2 gene carrier.

My mind went into overdrive and I was overcome with emotion but I also felt extremely privileged how much science had evolved and that there is the option for me to have preventative surgery, unlike my dear grandma. I now have my darling healthy baby girl Harper and my plans to have my double mastectomy are in close proximity. My ovaries I don’t think just yet, I can’t make my mind up if I want to say goodbye to those sleepless nights yet.

I wanted to invite you to share my journey along the way. Thanks so much, Nicole x

Amy & Nicole

You can follow along on their BRCA journey here.
Email – thebrcasister@gmail.com
Instagram –  @BRCASisters

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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