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| Teri |
It may seem weird for a woman who has never had breast or ovarian cancer to think about it as much as I do. In fact, I thought about it so much I chose to have a prophylactic (refers to the removal of healthy tissue & fat) hysterectomy and bilateral salpingo oopherectomy (BSO) in October 2009, just a few days before my 39th birthday. I also had both of my breasts removed during a prophylactic bilateral mastectomy in February 2010.
While I don’t have breast or ovarian cancer, I do have a genetic mutation of my BRCA1 gene which makes my risk of getting breast cancer up to 87% and makes my ovarian cancer risk up to 44% over my lifetime. The average woman has an 8% chance. While science has come a long way, at this point in time, the best option for a woman with this mutation to avoid getting breast or ovarian cancer is to have her breasts and ovaries removed before the cancer strikes. In other words, the best way to fight cancer for us, to not get it in the first place, by removing our healthy breasts and ovaries.
When I first found out about my mutation I was thrown into a world of confusion and fear. Not only was my risk of cancer high but I learned that diligent surveillance would likely not be a good enough option for me. The type of cancer associated with BRCA mutations is very aggressive and reoccurrences of breast cancer are high. I could battle and beat breast cancer, only to have it come after me again and again. The reason the cancer acts so aggressively on those of us with mutated genes is because we are missing our tumor suppressors. Our bodies are missing (in our DNA) the natural ability to protect itself against these types of cancer.
I have a lovely family; a husband and two sons. Of course the idea of going through with these surgeries scared me senseless, but my fear of getting and dying of breast and/or ovarian cancer scared me even more. I value my life more than my body parts. My older son, Steven, is a sophomore in college. My younger son, Brady is just three years old. What message would it convey to my sons if I decided that I couldn’t go through with the surgeries, if I just couldn’t make myself part with my breasts and reproductive organs, and ended up with breast cancer? Wouldn’t that teach them to value our outside appearance more than our life? What of my toddler, who has no understanding of what is going on? How would my husband explain to our young son that his Mommy died because she was too afraid to take the best preventative steps that are available at this time?
As fearful as I was of having my breasts cut off, and my reproductive organs scooped out, I was so much more fearful of the alternative. I began to see the knowledge of my BRCA1 mutation as a gift rather than a curse. There is no denying the choices previvors like myself have to make are incredibly hard, but at least, if we take action soon enough, we do have a choice – something many of our relatives and friends didn’t have. We have the ability to be pro-active in our battle rather than to sit around waiting for cancer to strike. I feel empowered, blessed and brave. Yes, brave, because while at times my insides may shake with fear, I was selfless enough to do what I needed to do, to be around for my family.
For me, worrying only about myself and my struggles through the land of living with a deleted area on my DNA wasn’t enough. I found myself with so much empathy for other BRCA positive women forced to make these choices. Men can and do get this mutation as well, but the implications for women are more obvious, and come with a solution. A difficult solution, but a solution nevertheless. Initially I started blogging as a way to help myself make sense of all the fear and decisions that were suddenly placed before me. It didn’t take long for me to see that by sharing openly of myself that it was helpful to other women going through the same thing. My blog, Teri’s Blip in the Universe, is something I created that I’m incredibly proud of. To find a way to take an absolutely terrifying situation and turn it into something good and positive has been life changing for me. Later, when I co-created the BRCA Sisterhood group on Facebook with my good friend, Karen Malkin-Lazavoritz, my pride grew by leaps and bounds. To bring so many people together in a social environment that many of us used daily has been amazing.
Since I found out about my BRCA1 positive status I’ve had a chance to hear a lot of stories from others with the BRCA mutation, along with those with unknown mutations, or simply a family history laced with breast cancer, who decide to be proactive – who decide to be Previvors.
The point is, I have a BRCA mutation, but it doesn’t have to own me, it doesn’t have to be an automatic death sentence. The cliché that knowledge is power may be overused (it’s a cliché for a reason, right?), but few others fit better –genetic testing gives us knowledge of a very probable cancer diagnosis and the ability to be proactive in our fight – which is truly the gift of life.
Jeanne'
My story always shocks people as I am the woman that does not fit the
stereotype for developing breast cancer. I am 45 years old and I have
a developmentally disabled 15 year old son who is the most amazing
human being I know. I am blessed to be married to my soul mate and
have the sweetest cat.. :) I am a yoga teacher, work out daily,
meditate, eat well, buy organic and juice often. I also was diligent
with my mammograms since I turned 40.
Late in February of 2008, I was eating a cookie when a crumb fell down
my shirt - yes, folks, this is how I discovered my lump. Thank God I
never let a cookie crumb go uneaten as I found a rock hard lump under
my right breast that night. I wasn't worried as my breasts are very
cystic and I was scheduled for a mammogram the following week anyway.
Well, I was completely in shock when I was diagnosed with Stage 1,
Triple Negative, Grade 3 breast cancer. Thankfully there was no lymph
node involvement. I had a lumpectomy and started Mammosite radiation
which was completed by the end of April of that year. Life went on...
I had a hysterectomy in August of that year as I had a huge uterine
fibroid that caused heavy monthly bleeding. I kept my ovaries as my
cancer was not hormone positive. In February of 2009, I started get
sharp pains in my sternum area. I had a PET scan and an area near my
where my tumor was lit up slightly. My docs were not too concerned
saying that I had damage from radiation and inflammation in that area
- most likely, this was the cause of my pain. We all decided a wait
and see approach was the way to go and I had another scan in June.
This time, the PET showed much more intensity in that area and a bone
biopsy was ordered. The results were that my cancer had spread to my
ribs. I am currently considered Stage 4, which means chronic and
"incurable" as they like to say. I am doing six months of Taxol and
Avastin along with Aredia, then radiation after that. I will be on the
Avastin permanently. I have been given anywhere from 3 to 15 years to
live from all the medical "experts".
After getting over the shock of how this happened and why, I am
determined to prove all the statistics wrong. I believe that God
determines when we are finished with this life and that He is in
charge. Even while getting chemo, I am living my life. I still teach
my yoga class, work out, go out with friends and take care of my son.
I refuse to let this disease win. It will not take my spirit and it
will not drag me down. I believe I will be here for a very long time
and that my healthy lifestyle and positive attitude is over half of
this battle. Never give up - always keep that fire of hope deep within
you burning brightly. UPDATE : In November 2010, Jeanne' was diagnosed with metastasis of her breast cancer to her liver. In March, 2013, Jeanne' lost her battle with breast cancer. She inspired many women and will never be forgotten.
Jeanne'My story always shocks people as I am the woman that does not fit the
stereotype for developing breast cancer. I am 45 years old and I have
a developmentally disabled 15 year old son who is the most amazing
human being I know. I am blessed to be married to my soul mate and
have the sweetest cat.. :) I am a yoga teacher, work out daily,
meditate, eat well, buy organic and juice often. I also was diligent
with my mammograms since I turned 40.
Late in February of 2008, I was eating a cookie when a crumb fell down
my shirt - yes, folks, this is how I discovered my lump. Thank God I
never let a cookie crumb go uneaten as I found a rock hard lump under
my right breast that night. I wasn't worried as my breasts are very
cystic and I was scheduled for a mammogram the following week anyway.
Well, I was completely in shock when I was diagnosed with Stage 1,
Triple Negative, Grade 3 breast cancer. Thankfully there was no lymph
node involvement. I had a lumpectomy and started Mammosite radiation
which was completed by the end of April of that year. Life went on...
I had a hysterectomy in August of that year as I had a huge uterine
fibroid that caused heavy monthly bleeding. I kept my ovaries as my
cancer was not hormone positive. In February of 2009, I started get
sharp pains in my sternum area. I had a PET scan and an area near my
where my tumor was lit up slightly. My docs were not too concerned
saying that I had damage from radiation and inflammation in that area
- most likely, this was the cause of my pain. We all decided a wait
and see approach was the way to go and I had another scan in June.
This time, the PET showed much more intensity in that area and a bone
biopsy was ordered. The results were that my cancer had spread to my
ribs. I am currently considered Stage 4, which means chronic and
"incurable" as they like to say. I am doing six months of Taxol and
Avastin along with Aredia, then radiation after that. I will be on the
Avastin permanently. I have been given anywhere from 3 to 15 years to
live from all the medical "experts".
After getting over the shock of how this happened and why, I am
determined to prove all the statistics wrong. I believe that God
determines when we are finished with this life and that He is in
charge. Even while getting chemo, I am living my life. I still teach
my yoga class, work out, go out with friends and take care of my son.
I refuse to let this disease win. It will not take my spirit and it
will not drag me down. I believe I will be here for a very long time
and that my healthy lifestyle and positive attitude is over half of
this battle. Never give up - always keep that fire of hope deep within
you burning brightly. UPDATE : In November 2010, Jeanne' was diagnosed with metastasis of her breast cancer to her liver. In March, 2013, Jeanne' lost her battle with breast cancer. She inspired many women and will never be forgotten.
Koryn I am a breast cancer survivor. I am a mother of four and have been married to my husband for 24 years. I was diagnosed with breast cancer in October of 2008. After a unilateral mastectomy and a full year of chemo therapy, I have learned a lot about what may contribute to breast cancer and hope to share what I have learned with all women in hopes of reducing their risks for the disease. With knowledge comes power and with that power I believe we can eliminate breast cancer in our daughter’s life times. I have a 17 year old daughter who now has a family history of breast cancer – that is me, her mother.
I live in Virginia with my military husband and have two children in college and two in high school. We have lived overseas three times and in 6 different states. I am a former preschool teacher and work from home where I create handmade jewelry and run an online boutique. I write a blog about my personal battle with breast cancer where I also share how obtaining your mammogram transcribed radiologic report could save your life, or at the very least your breast, and how my physicians error led to my cancer's advancement (find this on the message to women tab). Here I share the ups and downs of a year in the life of a breast cancer patient, from mammogram, biopsy, diagnosis, mastectomy, chemo therapy, hair loss and beyond. It is a spiritual journey of courage and hope which serves to inspire anyone who is faced with this disease.
When I am not fighting breast cancer I enjoy walking, kayaking, photography, jewelry designing, baking, cooking, crafts and sharing a cup of coffee with a friend!
If you are a breast cancer survivor or are currently in treatment and would like to share your story, please e-mail me at
MothersPreciousGems@comcast.net so that I can add your story to this site and help educate other women through your experiences!
Donna
On October 17, 2007, I was diagnosed with Stage 2, three lymph node positive, Grade 1 (snail growing pace) Lobular Breast Cancer (more common in young women, 5 to 10 percent of all BCsosteopena, 6 weeks of radiation, 3 failed reconstruction surgeries, could only take Tamoxifen for a year due to horrible side effects, another BC scare in my other breast in 2010 and scheduled preventive mastectomy this year. After cancer and cancer treatment which I considered worst than cancer, the old me was gone and I decided that I had to pull myself up by my running shoes and create a whole new me.
After having breast cancer myself, I have devoted my life to fighting cancer and I fight it on many fronts. I am the creator of Kill the Beast which empowers people with cancer to fight and not be a victim while turning their challenges into helping others. In its infancy, Kill the Beast, LLC provides advocacy, awareness and fundraising services for cancer organizations while the Kill the Beast Foundation will help people financially who are fighting cancer. This was my husband's idea because we almost lost our home during my cancer treatment because we couldn't afford all the doctor bills that insurance didn't cover. As well, I am the Virginia State Lead Ambassador for the American Cancer Society Cancer Action Network (ACS CAN), the advocacy affiliate of the American Cancer Society which lobbies cancer issues at the federal, state and local levels. My legislative efforts have included the Affordable Care Act among others. I am the Vice President of the board for the Tigerlily Foundation which supports young women before, during and after breast cancer. I wanted to work with its founder Maimah Karmo, who was diagnosed with triple negative breast cancer at age 32, because I believed in her vision to stop breast cancer through prevention and early detection.
Before cancer changed my life, I worked in the US and abroad and founded Sponsorship Communications, a sponsorship and event marketing agency. Taking a sabbatical in 2003, I moved to Israel with my Foreign Service spouse, working on an UN project to market traditional Palestinian embroidery for Gazan women. A former US Army Officer working in public affairs, I studied International Affairs and completed my undergraduate degree at CINY Albany while doing graduate studies in Religious Studies at George Mason University. A three year breast cancer survivor now, my hobby is fitness to fight recurrence and prove that you can do anything after fighting the beast. I lives with my two children in Northern Virginia while my husband serves his third combat tour in Afghanistan.
Stacy
It has always been easy for me to fall asleep in my bed, snug, in the late evening. Unraveling the events of the day, and wondering about their obscure meanings. I often do this in bed at night, going through my day, eyes closed, always looking for a meaning, something or someone that made an impact in some way. As I flip through the pages of my day in my mind, memories seep from my veins. You see, I believe that each day becomes a part of you. Imprints on you, inspires you. I feel sometimes a willingness to follow my inspiration, to pay attention to uncanny coincidences and synchronistic events, which help me, attune to a higher order and magnetize good fortune.
This particular evening as I was flipping the pages in my mind, I thought nothing of what dreams may come while I sleep. I don’t remember that particular night, just my ritual. What I do remember is waking up, startled, and scared in the middle of the night, in the middle of the darkness. I sat up in bed, knees drawn to my chest. I took a deep breath, let it out, and knew I had Breast Cancer.Do you know the TV show Medium, which stars Patricia Arquette? She plays Allison Dubois, a psychic medium who while she is sleeping is able to tap into some “realm.” She is able to see visions, know things about people that others don’t know. Well, I’m nothing like that. Not even close. Phew, you are probably thinking, ok so she isn’t crazy. What happened to me while I slept was just my ability to attune to a higher order, if even for one night.
I placed my head on my pillow, eyes closed. Breathing slowly and deliberately, slowing my mind down to drift off to sleep. In the corridors of my mind, while I slept, pictures began to take shape. I found myself walking alone. I was barefoot, and I realized this the second I looked down. I could feel the dirt road beneath my feet. Along each side of me was grass, and in the distance beyond the grass were trees as far as I could see. I have no idea where I was, I had never seen this place before. The temperature was perfect, not to warm, not to cool, just perfect. I never looked behind me. I only noticed the trees, the smell of the grass, and the soft dirt under my bare feet. It was very still, very quiet, so quiet that I couldn’t hear my feet touch the ground as I walked.
A simple silence as I walked, tilting my head to the sun feeling the warmth and glow, I was approached by a man who seem to appear out of nowhere. He stood a little to the left of me, not blocking my next steps, and reached out and touched me. He put his right hand on my left leg, and immediately images were in my mind. Images of my leg, inside like a 3D model. He spoke to me and said, “Your leg is fine.” I had been worried about my leg; it had been aching for a while with no avail. He then reached his hand up and cupped my left breast gently and said, “You have breast cancer, go to the doctor.”
Simple. One moment I was enjoying a beautiful walk, barefoot with such amazing clarity in my mind, and then he appeared. I awoke, startled, shaken and knew at that very instant my life had changed forever.
Many of us spend all our time waiting for second chances. What if’s? I was lucky enough to get a second chance on life, and this was my second, second chance. I was diagnosed with Breast Cancer a couple of months, and many medical tests later. It was an early diagnosis, but alas just as devastating. I never felt it was a death sentence, but a life sentence. Memories that will forever be with me, be a part of me. What do you do with your memories? When they come bubbling up to the surface. Do you let the just float by? Do you analyze them, go into them, or just walk away?
I have my memories and many times my memories carry me to another level of understanding, another level of awakening. I am inherently inspired conscious and open to experimenting with new forms of imagination and understanding. Through my openness, optimism, enthusiasm for adventure or new ideas, and my willingness to go out on a limb and do something unusual or risky, blessings flow into my life. My blessing: Cancer.
How odd that may seem, and how inappropriate, but to me it was a blessing. Eckhart Tolle is also one of my blessings. He writes: “Die to the past every moment. You don’t need it. Only refer to it when it is absolutely relevant to the present. Feel the power of this moment and the fullness of Being. Feel your presence.”
He also talks greatly about coping with the now. You can never cope with the future—nor do you have to.
I live this way, and as each day comes to an end, and I lay my head on my pillow, and images line the corridor of my sleeping mind, I seek knowledge, and understanding. I offer no resistance to life and enter a state of grace, ease and lightness and know that I have been blessed.
Since my diagnosis of Breast Cancer in April of 2008, I have worked tirelessly to raise awareness for the cause. While recuperating from my Mastectomy my daughter and I came up with the idea of FightPink.org. A non-profit organization dedicated to the breast cancer cause. We unite with Authors, Physicians, breast cancer survivors, co-survivors, children of survivors, official non-profit community organizations and groups or individuals to support us in our global breast cancer awareness campaign. We connect Breast Cancer survivors, with newly diagnosed breast cancer patients to provide encouragement and support.
Fight Pink shares Survivorship stories through our web site, while raising awareness for Breast Cancer through community events and projects by partnering with local and national organizations dedicated to the cause and searching for the cure to Breast Cancer. We advocate for the patients needs as well as update our Fight Pink site daily to keep up with the latest news, legislation and Survivorship stories. Our motto is to “Unite, Become Aware, and Make a Difference!” Share your story, make a difference. If you are a Survivor, or a Co-survivor, help others by sharing your story. For more information please email stacy@fightpink.org.
