My BRCA Story
Doctors recommend all women perform a monthly breast self exam. When you have family history, 5 generations deep, those monthly exams become daily exams. A brief time in the shower spent convincing yourself that you aren’t feeling changes or lumps. For as long as I can remember, I would poke and prod from my armpits to my sternum expecting to find the inevitable, or so I believed. I didn’t feel the “What if” about Breast Cancer, I felt the “When”.
So, when my mother tested positive for the BRCA 1 genetic mutation I felt pretty much assured that just like I was blessed with her big brown eyes, and perhaps jokingly “cursed” with her “child bearing” hips, this DNA marker would likely also be shared. When the family risk assessment program we had volunteered to be a part of contacted us about the testing, I was still nursing my youngest of 5 children, so my testing date was pushed out months past my sister, and my mother’s two siblings who were being tested. It was a great relief when all 3 of them came back negative for the gene-which meant no known genetic risk for them, and no genetic risk of passing the gene to their children either. About 2 months after I finished breast feeding my daughter, I had my blood taken and about 3 weeks after that I went into the genetic counselor for my results.
I chose to only have my mother come the day the results were read. It was kind of like a secret we would likely now share. It was like a “BRCA 1 Positive Club” that meant you were special and unique…two words that describe us both to a T. I wasn’t scared and honestly had already accepted the choices I would make, and later live out, when the genetic counselor said “Jen, your test results show are positive for the BRCA 1 genetic mutation”.
When I was a few months shy of my 35th birthday, I entered the operating room to have my prophylactic double mastectomy, with reconstruction. I had confidence in the surgeon and reconstructive surgeon, I had support from my husband, I had my mother’s example to follow, and I knew I was lucky to be choosing to not wait to see if I got sick, but to be proactive in my personal choice with this decision. I have to say the months with the tissue expander and the visions of my non-breasts were tougher than I thought. Maybe when you have cancer it’s easier to say goodbye to your breasts because they are diseased? I don’t know, but trust me when I say, I am happy that I will likely never know.
About 2 years later, after a few “ovarian cancer scares” I also opted to diminish my Ovarian Cancer risk by having a total hysterectomy and oophorectomy. At just under 38 years old, not even your mother who made the decision before you can prepare you to wake up from surgery in full blown menopausal hot flashes.
Yet again, I was empowered by my choice, and blessed to be cancer-free in making my decision, but to have been thru so much before the age of 40 is a mental and physical daily battle. I feel different than most women my age; I look different with scars and shapes that most women my age don’t have. I am very thankful that with so much emphasis being put on genetic testing, I was able to find a team of doctors to help me help myself. And now, with so much in the media and even celebrities making the same choices I made, my friends are calling me “brave” and saying I’m an example to all women. That feels good and reminds me that being BRCA 1+ does make me unique and sharing my story with other women who are survivors like my mom, or pre-survivors like me, means that my choices may lead the way for others to follow.
Now, with my own children, and even grandchildren, I am eager to share my story and do any part possible to be a part of finding a cure for this disease we call Cancer.
Daughter, Sister, Wife, Mother of 5, Grandmother of 1, Independent Sales Director w/ Mary Kay
LIFE AFTER CANCER
I was training to compete in a bodybuilding/fitness show back in 2007 - 2008 when I found a small lump on my right side. About a month later a biopsy confirmed my worst nightmare – I had breast cancer stage 1. I hit the gym hard and had to learn how to train around biopsies, surgeries, and various cancer treatments. It was a real learning experience because I had contacted several top level trainers and no one had any real experience training around lymph node removal and radiation. I got certified as a trainer and taught myself how to train around all of the above and had consulted with all of my doctors and health care providers so that I could learn as much as possible. I competed at The Arnold Expo in Columbus Ohio just three weeks before and eleven months after my surgery in the USMC Men’s Fitness challenge. Everyone thought that I was crazy for doing this – but I didn’t care because I believed that this would encourage other cancer patients and survivors. During the Expo – I had run into a trainer from the gym and he informed me that he had bone cancer twenty years ago and had to undergo chemo and lost part of his leg. I couldn’t believe it – he was in such great shape – I would have never guessed it.
Fast forward to 2011 – I competed at The Mid-Atlantic Grand Prix in November 2010 and placed fifth in the figure division first time out. I just competed at The Northern KY Beverly International and placed fifth in one of the biggest fitness shows in the US. People couldn’t believe that I had survived breast cancer and could still compete at this level. I thank God every day for getting me through all of the above – again I consider everything to be a miracle. I have doubled my strength in the gym. Guys will come up to me and say, ‘I have never seen a female do triceps dips or wide grip pull ups with no assistance,” and when I tell them that I survived breast cancer - they can’t believe it! They always mention someone in their life that has either survived cancer or is facing treatment right now. Hopefully I will be able to reach as many cancer patients as possible with a very positive message that there is life after cancer.
Lisa C. Nicolette
Under 40 Breast Cancer Study
This makes us keep fighting for the "Cure"
These are women which have benefited from genetic testing.
Some of the women who were tested submitted comments to us, which are excerpted below.
“I wish to greatly thank everyone involved with my case. Getting the grant to pay for my genetic testing has been a big relief for my family. Although this was hard information to find out I always have believed that knowledge gives great power. We now know that my mother's family definitely has a mutation and my family will know to get tested or to be very careful in making sure to have yearly tests done i.e.: mammograms and MRI's. My insurance would not pay for the genetic testing so we are so grateful for the help. Thank you again.”
“It helped by letting me understand more about how it was done, who is affected by it. It made me feel better about what I’m going through and the results made me feel relieved to know I don’t carry them.”
“I just wanted to thank you for your generosity. There is no way that I could have paid
for the genetic testing. I can't thank you enough, thanks for caring; you may have saved my life.”
“No matter what the age or extent of the disease, a cancer diagnosis is devastating. At the time of the diagnosis, I had no idea or understanding of the severity, stage, or growth rate. I did know that prostate cancer fell heavily on my father's side of the family. I also knew that I was 39 and fell into < .05% bracket. Since I fell into the smallest percentage of even having breast cancer, I couldn't comprehend how the insurance company could reject genetic testing since there was 'only' a 10% chance of a genetic link. That 10% sounded huge and vast compared to <.05%. A genetic link would have an impact on my sisters, cousins, niece and daughters. It would also have completely changed the course of my treatment. I would have opted for a complete mastectomy and the removal of my ovaries. Fortunately, this study provided me the opportunity to have the testing. It relieved me and my family from the genetic worry. I can now look at my daughters and know that they are safe from the brac1 and brac2 gene mutation. I'm also very happy to keep my body intact.
Looking back, I can tell you that the weight of what I am saying can not be understood by someone unless they have gone through this. I see cancer and cancer patients completely different. The stress and anxiety can truly be overwhelming. Coping with the diagnosis as well as the treatment that lies ahead is difficult. Having to deal with unknowns (i.e. if it's genetically linked) compounds the problem. Cancer patients should have every opportunity to effectively treat and cure this disease. Genetic testing is an important part of this process. “
Julie Carter 1/22/2007
Hi Diana, My husband and I have attended your benefit at Bossa Nova the past 2 years and we would like to thank you for all of your hard work you have done to make it a huge success every year. I was diagnosed with stage 0 (incarcinoma in-situ) in 1998 and had a bi-lateral mastectomy and have been cancer free since. However; my mother was diagnosed 2 years after me with stage 1 breast cancer. She battled it for 5 years, going through many different types of chemo treatments, radiation, etc. She came to live with my husband and I the last 3 years and I devoted my time taking care of her. She was my rock and she was so strong in how she dealt with what life had put before her. She passed away in November 2005 and I miss her dearly. I would love to help you in any way I can in honor of my mother. Thank you again for all that you do for the fight against breast cancer!
Trisha Grant 1/22/2007
I am a Steelers fan from the early to middle 70's. I was diagnosed with breat cancer at the age of 31 in 1995. This was one year after my first and only daughter was born. I had a 9 cm tumor and a lynph node that was 2 cm under my left arm. The tumor was really hard to feel and find because of my youth and the fact that I had breast fed my daughter for eight months of her life. With some good luck I was priviledge to have a new regimen of a chemo treatment come across my Doctor's desk a month before my diagnosis. This regimen was designed to reduce the tumor and for the tumor to be taken out with a lumpectomy instead of a mastectomy. I endured 6 months of chemo and 1 month of radiation. I had a lumpectomy and nodule dissection in the middle of my treatment. I have been cancer free for 10 years. I was at a stage III. So I am very lucky to be here and able to raise my daughter. Thanks for the work you are doing and GO STEELERS!!!!
Bonnie Grasha 1/5/2005
Dear Diana; I read of your project in North Hills Monthly. My Mom was diagnosed in July of 2003 with Stage IV and bone mets. She underwent a mastectomy, radiation and bone strengthening treatments. She passed away on March 11, 2004 at the age of 61. I quit my job to help care for her and take her to treatments. She was my rock all those years I felt the need to be there for her. I was there holding her hand as she was called on to another world. Cancer knows no boundaries for two weeks later uterine cancer claimed my aunt. I would love to help you out in any way. I am currently a stay at home mom/freelance photographer and would be willing to donate my time and talents, in memory of my Mom, and in hopes that no one should suffer the way that she did. Sincerely, Bonnie Grasha email@example.com
Judy R. Enslen 2/4/2004
Found your web site while surfing for information on chemotheraphy. I underwent a bi-lateral mastectomy 4 weeks ago and am awaiting my first chemo treatment the day after Thanksgiving. Kudos to you Diana for your site and your Glimmer of Hope.
Brad Esposito 2/4/2004
Hi Diana, I read your article in the Post-Gazette and thought you might be interested in our story. My mother Joann, was diagnosed with Stage 4 breast cancer in April of this year. Through the help of my uncle, Dr. Paul Wawrzynski and his colleage Dr. Dennis Slayman (sp?) in California she began agressive chemotherapy treatment at AGH. Today she is almost cancer free but still has 2 more chemo treatments, radiation, and surgery to go through. If you were to meet her though, you would never guess anything is wrong, she is that strong and determined to get through this. Then in July my father Andy, was diagnosed with Prostate cancer. Although not as life-threatening as breast cancer, it has still taken a toll on our family. What I am writing to you about is that in October 2004, my brother Brian is organizing a golf tournament in Las Vegas to benefit both breast and prostate cancer. He is the head professional at the TPC Canyons in LV. After reading your article I thought that you might be interested in joining us in LV for what is expected to be quite a large fundraiser. Please contact me either way, as it would surely be a pleasure to talk with you. And hopefully we could meet with you at your fundraiser. Sincerely, Brad Esposito (412)362-5804