Breast Cancer PREVIVOR: Living With BRCA+ Genetic Mutation is a collection of thoughts about my journey as a breast cancer previvor diagnosed with a genetic mutation as well as an overview of what it means to be BRCA positive.
I am a breast cancer and ovarian cancer
PREVIVOR living with the
diagnosis of BRCA2+ genetic mutation
and high cancer risk (87% with family history).
BRCA+: Living With Genetic Mutation as a Breast Cancer PREVIVOR
Even though BRCA mutation diagnosis received a slew of press,
and a wide discussion of inherited breast cancer
ensued thanks to Angelina Jolie, you may
still be confused about the complexity of it all.
What is a breast cancer PREVIVOR?
I chose Prophylactic Surgeries to wipe out the
chance for developing ovarian and breast cancers,
which turned the lives of my mom, aunts, cousins,
and friends, upside down and has also been fatal for
too many of my female relatives.
Previving is a newer term to disease vocabulary and refers to wiping out the risk of cancer before it can develop.
Today is my mom’s birthday, and she is nearing the 5 year anniversary
of her breast cancer diagnosis.
Her birthday seemed like a great time to
celebrate her vibrant life while also raising
awareness about BRCA+ genetic mutations.
What do BRCA genes do?
First, inherited breast cancer involves one of two genes:
BRCA1 or BRCA2, and all of us, both men
and women, possess these two genes.
Second, the role of these genes is to repair cellular damage
and to keep breast cells growing normally.
In my case, the BRCA2 gene has an abnormality
or mutation, so it cannot do the job of
suppressing tumors as it is supposed to do.
While genetic mutations are complex,this analogy
helped a bit:
We can think of the mutations as spelling mistakes
or typos. Since genes are instructional manuals for
a cell, the same spelling mistake or typo in the
instructions keeps appearing in every cell
containing that gene.
(As a writer…OY…can I just tell you how frustrating it is
to think there’s this spelling error in my genetic code
which cannot yet be edited to give the proper
instructions to my sweet little cells that only
want to suppress tumor growth and repair
themselves?)
BRCA1 and BRCA2 mutations are harmful because
they increase the risk of several cancers including
ovarian, breast, pancreatic, and melanoma.
Who Has This Rare BRCA Mutation (beyond me and Angelina)?
People of Ashkenazi Jewish descent (who have a higher prevalence of BRCA1 and BRCA2 mutations than people in the general U.S. population) and Norwegian, Dutch, and Icelandic peoples also have a higher prevalence.
The difficult decisions I faced about surgeries
to prevent breast cancer and to reconstruct my breasts
were not made easily or alone.
With the help of excellent specialists, my husband,
my mom, and my sister (who also tested positive),
I chose a Prophylactic Surgery strategy because
it felt right for me.
Surgeries Are Not the Only Option
Many women living with the cancer risks involved
with BRCA+ diagnosis choose
Enhanced Screening, Chemoprevention,
and nonsurgical preventative options.
I deeply honor my BRCA+ sisters and brothers who for
personal reasons do not choose the option I chose.
No stranger to dramatic diagnoses,
I have been living with Crohn’s Disease (in remission since 2012)
since I was 18 years old; but learning about
the BRCA2+ mutation triggered mixed feelings.
I wasn’t yet sick yet I felt like a timebomb.
I faced critical decisions, fears,
and questions about my health and future.
I felt some fear, but I did not feel unlucky or doomed.
In fact, I felt grateful to be armed with
information about my genetics and indebted to
my mom who requested genetic testing for the
BRCA mutation
to possibly help her children avoid
the trauma, pain, and grief she endures.
Witnessing the suffering of my warrior mom as she
fights breast cancer, colon cancer, and melanoma
with surgeries, chemotherapy, and radiation,
has changed me in profound ways.
Joining her in the fight has helped me
gain perspective, beyond simply
issues of physical health.
Her pain and cancers have been a
teacher for me and my family about what it
means to be here on earth for a short time,
growing in wisdom and love.
My Journey as a Breast Cancer Previvor
I wish I could say the journey has resulted in
linear personal growth and that as I deepen and grow,
life gets better and better…oh my, that
has most certainly not been the case.
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Instead, the journey with BRCA and Crohn’s
is much more spiral-like, much more dizzying
and tricky to navigate than I ever imagined,
more ripe with meaning and
more rich in opportunities for
humility and
gratitude than I can say.
And I should really capitalize Humility
because. Oh boy. I had no idea how
much puffed up ego was in control
before my BRCA+ journey which
brought with it an extraordinary opportunity
t o l e t g o
of a whole lot of self-absorption and illusion.
One of the preventive surgeries I chose after
the BRCA+ diagnosis was Full Hysterectomy
with Bilateral Salpingo Oophorectomy.
which resulted in surgical menopause, and
menopause has been especially
challenging for both me and my sister.
Surgical Menopause Issues
Both of us developed chronic migraine with auras
which has been a debilitating health condition
affecting our daily lives.
About a year ago, I was experiencing 12-17 days
with severe migraine each month and feeling
increasingly hopeless about coping with
the illness.
Last summer, I sought treatment from a headache specialist,
who was determined to help me identify and eliminate
the possible triggers of these recurring headaches.
After eliminating aspartame, pain relievers,
and medicine which could be contributing factors,
it became clear that the main triggers
for my headaches are allergies, barometric pressure
changes, and dappled light.
(By the way, it’s unwise and insensitive to insinuate
to someone suffering from headaches that their
pain is likely psychosomatic…unless you
have graduate degrees in medicine,
psychology, and neurology, have lived
life in their skin, AND want to get smacked…
since I can tell you that hearing that
feels like being punched in the migraine.)
I tried multiple prescriptions to treat the headache
pain, but unfortunately have not yet found
one that helps so have pursued alternative
options like Botox (which for me has reduced
the number of migraine headaches
but may not have that side effect for everyone)
and Accupressure/Reflexology
(weekly treatments for a time, and now I administer
treatments to myself and family members).
Allergan Became a Friend
I realized just the other day that there are
multiple Allergan products which have
comforted me along the journey.
Products which have helped me to heal,
feel more like myself, and even
experience fewer headaches per month.
During a particularly difficult season with the
Crohn’s Disease, at a time I was not sure I would
survive the illness, a medicine made by Allergan
(Asacol) helped to calm the inflammatory condition
of my diseased bowel as it healed and returned to health.
It is still distressing for me to return in memory
to those 18 months of dark days where
I could not eat or drink anything
without rushing to the bathroom.
Grace, medicine, love, and a hard fight
for my health (which meant eating small quantities
of food around the clock, though it was the last
thing I felt like doing) eventually led to brighter days
of calm and remission.
In 2013, when I opted for a double mastectomy
and reconstruction of my breasts with implants,
I chose implants made by…yep…Allergan to feel more
comfortable and at home with the physical changes.
A Word About Organ Donors
I am so deeply grateful for AlloDerm tissue required in my reconstruction surgery offered by the company Acelity.
Since there wasn’t an area of my body to borrow skin required
for my surgery, it was necessary to secure another source.
Alloderm is created from donated human skin,
and after removing all of the cells
from the skin, its biochemical and structural
components are retained.
Since AlloDerm is an acellular tissue product,
there was no chance my body would reject it.
A Grateful Breast Cancer Previvor
DEAR ORGAN DONORS,
While I am expressing all this gratitude,
I must also send a huge shoutout to you incredible humans
who are organ donors and willingly donate your skin
after life has left your body.
YOU ARE SO VERY PRECIOUS.
If I think too long about the donated skin I required
for reconstruction…skin which covers my chest
and lives near my heart,
thankful tears will flood this keyboard.
So, you see, me and Allergan keep running into each other
through my adulthood (Asacol, Natrelle implants, Botox),
and the company seems destined to keep me company
on this journey with BRCA2+ genetic mutation.
Thank you so much for creating agents of
healing and comfort for me, Allergan.
Thank you, wonderful surgeons and doctors
who performed multiple surgeries for me and the
women in my family.
Thank you kindly, AlloDerm, Acelity and skin donors.
Thanks, geneticists.
And thanks, mom…you make us so proud.
Thanks, friends, for reading with love–
you’re important sources of light and
encouragement on this journey.
If you found this post as a result of an
internet search for BRCA genetic mutation
after receiving the diagnosis,
I hope you find a little hope here.
Be tender and gentle with your lovely self.
You’re in good company, friend.
And never alone.
If you care to connect,
feel free…you’ve got this.
BRCA Video I Made for You
Here’s a video I made just for you:
For more information and support for BRCA, visit
Facing Our Risk Empowered (FORCE).
Please share this post to raise awareness about BRCA genetic mutation.
Peace to you right where you are.
~michele
thank you for this post. I don't think there is enough information available on brca!
Thank you for holding my hand and propping me up the whole journey through. xox
Heart warming and heart felt, what great information and inspiration to look for the silver lining in all of our challenges and stay positive. Thanks Michele
Thanks for your tender heart, Leslie. xox
Thank you for sharing this story of your journey, humbling and inspiring…I am so grateful that I found your blog this year. You fill me with beautiful images and words every single time. You are, simply lovely….
What a kind thing to say. Thanks for reading, Christine. xox
Bravo, brave soul! Thank you for sharing this critical information so openly and positively.
Thanks for reading, friend. I love having you here. xox
I used to suffer from migraines as you have described. You might try a homeopathic remedy. Homeopathy is very safe and surprisingly works quickly once you get the right remedy. Peace to you and blessings.
Cyclamen – Best Homeopathic medicine for migraine that starts with visual aura or disturbances
Homeopathic medicine Cyclamen is majorly indicated for migraine attacks that begin with flickering, fiery sparks before the eyes or dim vision. These visual symptoms that precede the migraine headache are referred to as aura. Cyclamen is also useful where migraine headache starts on rising in the morning. Shooting pain is experienced in the temporal region. Vertigo, especially when standing, may accompany the headache.
Thanks so much for the tip! xox
What a beautiful post. I had breast cancer when I was only 39…still good 20 years later. Hoping the same for your mom!
That's fantastic, Mary Ann!!! xox
My dear friend, What a courageous warrior you are! I don't even know what to say except that in the midst of absolutely miserable diagnoses, you are a light and a joy and source of inspiration to all of us readers! Thank you for sharing your journey with us❤
Thanks for reading, warrior–you inspire ME! xox
From one BRCA sister to another…thank you. Thank you for sharing your heart and story. It's so hard to find words to explain everything to others. This is beautifully written. I just had my Full Hysterectomy with Bilateral Sapling Oophorectomy 3 weeks ago. I have my second set of consults with surgeons for the PDM in April-May. It's nice to not feel alone. Thank you! Hugs!
thanks for reading, sister carrie! thinking of you as you recover and get ready for the PDM. if it's any consolation, i was able to get on a plane for vacation 10 days after my PBM/reconstruction (i had both at same time)! you've got this! xox
Your one brave girl, thank you dear for the education xx
thanks for reading, dore! xox
You are beautiful from the inside out! Thank you for sharing your path and where life leads. Blessings…………
thank you for the kindness! xox
As a breast cancer survivor, I understand your journey. I was first diagnosed in 2004 at the age of 54, which is the exact age at which my mother died after fighting breast cancer which metastasized to her brain. I freaked. The surgery I had was a lumpectomy and radiation was my treatment. I then had gene testing and was found to carry the BRCA 1 triple negative gene mutation, which did not have a great survival rate. I joined FORCE (a lifesaving organization in my humble opinion), and met many wonderful men and women who provided me with the best support ever. At the time, it didn’t seem there was much information around about triple negative breast cancer. So, as a defense, I chose to have a complete abdominal hysterectomy and bilateral mastectomy with DIEP reconstruction which was performed by three of the most amazing doctors ever (Center for Restorative Breast Surgery in New Orleans, LA). I felt alive and ready to live cancer-free. But that was not to be – two years later my cancer metastasized to my left chest wall. I had chemotherapy and radiation treatments for six months, and now here I am, more than 11 years later, alive and well. I just wanted you to know there are others (and sad to say, many) who understand all you have gone through and I am sending you the biggest hugs and best wishes ever. I love your blog and thank you for sharing all your wonderful stories and decorating ideas with us all.
Author
What a journey you are on, sister. Sending a hug right back. It’s so wonderful to hear from fellow BRCA sisters, and it is important to hear your story about how initial previvorship does not guarantee one will not also become a surivor. I don’t know how I feel about all of those labels anyway. But you are here and your story is so encouraging to others. I wanted to go to the FORCE conference this year in San Diego, but my London trip overlapped so maybe next year! Have you attended any of those? Wishing you peace and love right where you are.
Hi, Michele. thank you for your sweet response. I tell my story not because I want people to feel sorry for me, but because I always deeply hope something I say will help someone else. I agree with you about all the labels, but IMHO, what the heck if they help someone feel better. I had planned on numerous occasions to attend one of the FORCE conferences, but sadly, never did. Something always seemed to get in the way. I have heard they are amazing and maybe one of these days, I’ll attend. Something I wanted to share even though it is very sad – when I was very active on the FORCE support page, there were only four women who knew they were triple negative. I never met any of them, but became very close with them online and knew their stories. All three of them have passed on, and I am the only one of the four who survived. It always bothered me because they were all much younger than I am and had young children and families. Survivor’s guilt, I guess. But it wasn’t God’s plan.
I’ve known Sue Friedman of FORCE for a very long time and she is a true God-send to us all. She helped me through so much and, along with all the other FORCE members, led me on my path to New Orleans for my surgeries.
I want to thank you for sharing your experiences with all of us. Your writings are so inspiring and I am so glad I found your blog. I wish you peace today and always, and may God watch over you and your family.
Author
Without a doubt, telling your story is helping others. FORCE is so incredible. I have walked with my mom on this survivor’s guilt journey. Each time one of her BC friends leaves their body – she feels that sense of despair that she is still here. I tend to think there must be much more light to spread here on earth. Thank you for being the light against all odds – we need witnesses to what it means to walk through fire and be ever refined and redeemed. It’s not so much just surviving the flames, but the glorious transformation which results on the other side! I’ll never tire of the stories of people who find beauty in unlikely places, of hearts that have broken open to somehow become divine vessels so the living water may flow freely. Thank you for the kindness and peace- you have added such a layer of beauty to this post, and I honor it.