Playing God?

Years ago when I was still in my 20’s, not long after I found out I carried the BRCA1 mutation, and after I enrolled in a research study through the NIH (National Institute of Health), a researcher involved with a physiological program through a University (I don’t remember which now), interviewed me over the phone.  She was gathering data from different BRCA+ women, discussing their psychological and emotional states after finding out they were mutation carriers, as well as asking other questions regarding future health decisions.  I specifically remember her asking me about genetic embryonic screening, if it would be something I would consider, eliminating the 50/50 chance of passing the mutation down to my children.  At the time, it was a relatively newer advancement and most likely not covered by insurance (though I did not look into it at that time), but the question itself has stayed with me for years.

When my husband and I were trying to conceive our first child (he’s a little over 2 now), it took us a lot longer than we anticipated.  I actually miscarried fairly early on, only about 2 months after initially trying, but then it took over a year to conceive again (I was 35).  Luckily that time, I carried a healthy baby boy to full term.  We were actually in the process of investigating IVF.  We already met with a fertility Dr multiple times and started the process with blood work and screenings to test for other possible genetic issues.   It was literally the month before we were going to start the IVF process that we finally conceived.  I remember calling the Dr’s office to inform them I was in fact pregnant and the receptionist said it actually happens more often than you think.  Perhaps women finally relax knowing they’re going to take steps towards IVF, which allows their bodies to simply create a more inviting atmosphere for conception?

Fast forward to today and we’re investigating IVF once again, but this time for very different reasons.  I mentioned in my previous blog post, that the best measure against ovarian cancer, is an oophorectomy.  As of late, some women have actually been pursuing these at fairly young ages, 20’s and early 30’s.  They are freezing their eggs beforehand, eliminating the need for ovaries when it comes to conception because you can actually carry a perfectly healthy baby to term through the IVF process without ovaries. They will still have their uterus and cervix. Amazing right?!

My Oncologist asked if I considered freezing my eggs prior to chemo, but that was more to help protect them against chemo.  Zoladex shots were proven to help, but it was not a guarantee.  There was so much going on at the time of my cancer diagnosis that the thought of freezing my eggs was way too overwhelming.  But luckily, the Zoladex shots did work and my egg quality is still great (refer to my last post “The Story of the Eggs”).

So now the decision of IVF for us, comes down to timing.  I turn 39 this August, which leaves about 7- 8 months of wiggle room, if that, since my ovaries will need to be removed by 40.  So why not take the IVF route?  Fertility Dr said IVF has 80% chance of conception, you can choose the healthiest embryo(s) to implant, you can possibly choose a boy or girl, and screen for the BRCA mutation (if insurance covers the cost since I am a cancer survivor), on top of other genetic abnormalities.  Hmmmm…. I thought to myself as I sat across my Dr at a circular marble table in front of a faux-fireplace (our Dr likes to have a relaxing, conversational atmosphere).

There were a lot of thoughts flowing through my mind in that “Hmmmm….”!  It’s a bit out of this world, futuristic to think one could possibly choose out of a lot of embryos.  IVF has been occurring for decades now, but being in the driver’s seat is a whole other story. You’re the one making these decisions that directly impacts your family’s future.  So I found myself asking if it’s normal to feel hesitation and ambivalence about this approach?  Is it normal to feel a bit guilty about “playing god”, so to speak?  I mean in a sense you are playing god on multiple levels; possibly choosing the sex of your baby, separating healthier embryos, and so forth.

In thinking it through since my last appointment (last week), I’ve found a bit of comfort on both sides of the fence.  Conceiving naturally is the easier approach, in that you don’t have to endure the IVF process, and provides a sense of contentment that nature did its job, our 2nd baby was “meant to be”.   IVF, however, also provides a sense of comfort, in that embryo viability is strong and you possibly know 100% it does not carry the BRCA mutation, which in its own can be extremely comforting for many BRCA carriers who have struggled with either prophylactic procedures and/or cancer treatment.

Of course there are no guarantees in life, even if you do implant a healthy, non-BRCA embryo.  And if you are a BRCA mutation carrier with family history of ovarian cancer, deciding to freeze your eggs and pursue an opphorectomy at a young age, IVF is your only choice to conceive, which is certainly not an easy path to take!

No matter what decision one makes in their BRCA journey, it will always have a mix of positives and negatives.  There is no crystal ball, no clear path in life.  We make decisions to the best of our abilities.  Sometimes those decisions work out and sometimes they don’t.  Life can be challenging enough, so let’s be kind BRCA sisters.  Let’s be kind to ourselves and allow the process to proceed with whatever our best intentions are.

I will keep you posted on our continued journey and welcome others to please share their own!!

The Story of the Eggs

During chemotherapy, I received Zoladex shots once a month and quickly learned what it possibly feels like to go through menopause, i.e. not fun! Zoladex shuts down your reproductive system. Its purpose for me was to help protect my ovaries and eggs from the harsh cocktail of chemo poisons I was receiving on a weekly basis. The most common type of cancer associated with BRCA1 mutation carriers is triple negative. Triple negative means the cancer tumor has no hormone receptors. This is the type of cancer both my Mom and I had, so shutting down my ovaries to help protect them was its sole purpose. Other types of breast cancer tumors with hormone receptors, Zoladex is used as a form of treatment to shut down hormone communication within the body in order to inhibit reproductive functionality, and prevent further tumor growth.

Unfortunately shutting down my reproductive system invited many unwanted menopausal systems such as major hot flashes and vaginal dryness. I never knew how debilitating a hot flash could be until I was on Zoladex. I’m sure many of my BRCA sisters who have gone through this can relate to the wave of anxiety that would hit right before a hot flash took effect. And once you knew it was coming, there was no way to stop it until it reached its peak and started to subside. My entire face, neck and chest would turn bright red. My skin felt like it was on fire from the inside out! If I was home, I would rush to the freezer and literally stick my head in the freezer door until it passed. And these hot flashes would hit at any time, day or night, with no rhyme or reason. They would wake me in the middle of the night. I’d throw the covers off and lift my shirt until the internal blaze passed! I know it’s not a pretty picture, but for those who’ve had to take Zoladex like myself, it’s nice to know that enduring months of uncomfortable red, sweaty hot flashes, was not an exercise of futility! These shots might’ve worked!

I recently had some blood work done that checks hormone levels at a specific time within the menstrual cycle. These levels indicate egg viability, and to my pleasant surprise, my numbers were strong, which means there’s a very good chance that Zoladex did in fact help protect my ovaries and eggs against the wrath of chemotherapy!! 🙌🏻

It is becoming more & more common for BRCA mutation carriers to freeze their eggs as women decide to take further prophylactic measures to ensure they don’t get ovarian cancer, which is significantly harder to detect vs. breast cancer. Screening techniques for breast cancer are more advanced. The only screening technique for ovarian cancer is a transvaginal ultrasound. I’ve been getting those since I found out I was a mutation carrier at 25. I’m sure MRI’s are used as well, but ultrasounds are the most common. They’re not, however, a great screening tool for early detection and ovarian cancer typically does not show many early symptoms of tumor growth, which makes it a dangerous type of cancer to have.

There’s also a blood test that may help indicate ovarian cancer, called a CA 125, but it is not as accurate as one would like CA 125 – Mayo Clinic.

Really, the best measure against preventing ovarian cancer is removing your ovaries. For many BRCA mutation carriers, recommended age is 40, though some studies suggest women with very high risk, BRCA mutation carriers with a strong family history of ovarian cancer, should consider oophorectomies by 35. In my case, being that there’s no family history of ovarian cancer besides being a BRCA1 mutation carrier, my Oncologist recommends oophorectomy by 40. I am currently 38.

Thankfully we have a beautiful healthy boy, now a little over 2 yrs old. We are considering adding to our family. I turn 39 this August, so when you think about how long it may take to conceive, plus the 9 months you’re pregnant, 40 is really just around the corner! My husband & I don’t want to risk anything being that I am already a breast cancer survivor. Once you have cancer, your risk for any type of cancer increases. We decided to meet with a fertility Dr to discuss our options. We were considering artificial insemination. After speaking with the Dr, we’re now considering IVF, which has the highest % of conception, 80%, which is ironically the same chance of breast cancer with a BRCA1 mutation. With IVF, we would also have the opportunity to screen embryos for the BRCA mutation. Considering embryonic genetic screening is fairly expensive, it’s possible insurance may cover it being that I am a cancer survivor (something to look into fellow survivors).

So now some decisions need to be made. Whether or not we have another child, my ovaries need to go by 40. Which leads me to the next topic, my BRCA sisters, regarding medically induced menopause at a younger age. There are multiple health factors to consider when dealing with early menopause. Topics such as hormone replacement therapy, osteoporosis, heart disease and even dementia, need to be discussed, as all are increased risk factors when deciding to pursue an oophorectomy at a younger age.

So much more to discuss! Until next time my BRCA sisters… As always, please feel free to share!!!

Your Significant Other

Today is my 10 year wedding anniversary.  My husband and I started dating not long after my genetic test results came in.  We both remember quite distinctly, that I shared very early on what it meant to carry a BRCA mutation.  BRCA was still relatively unknown in 2005 when we met, so I had to explain in detail how it would effect many important future decisions regarding my health and family.  Apparently I was very clear in stating that if he’s not along for the ride, then he should get out while he can.  I didn’t really say it in those words of course.  I’m sure my approach was a bit more soft, but it was very fresh in my mind.  The test results were real and solidified years of fear on one piece of paper that my cancer risk was very high.  I felt it was extremely important to explain the seriousness of what having this mutation meant.  If he couldn’t handle it at that point, then he certainly wouldn’t be able to handle it when I got a double mastectomy, or god forbid, cancer.

I was very lucky to find him.  Not only was he incredibly supportive early on, but he’s stuck with me through it all!  From day 1, BRCA has been a large part of our lives.  I can imagine that it has been quite a roller coaster for him!  From initially learning what BRCA meant, to supporting me through an NIH research study (I’ll get more into that in future posts), to understanding “scananxiety” (as Nalie Agustin puts it), to being diagnosed with stage 2 ductal carcinoma 6 months after having our first son, then cancer treatment and mastectomy surgeries…. Did I list enough here ladies?!!!

I still struggle to this day with various elements directly related to my BRCA journey.  Screenings can feel intrusive, overwhelming, robotic.  How do you undress in front of doctors, open yourself up to poking and prodding, but then allow your body to feel loved and romanticized by your partner?  Our breasts are “ground zero” in the fight or race against the BRCA mutation.  Can you allow your partner to lovingly embrace that part of your body when there’s so many complex emotions surrounding them?  These were some of my challenges and after mastectomy surgery, any physical sensation, sexual pleasure connected to that part of my body is gone.

For many years, I separated myself from that part of my body.  It was the only way I knew how to cope with all the doctor visits and complexity of emotions surrounding them.  It has been over a year now since my mastectomy surgery, and almost a year since my second reconstruction, or as we “Breasties” say, swap surgery, and I have yet to truly connect with my new breasts.  Someone can literally stab me in the chest and I would not feel a thing.  Mirroring scars on each side fade over time, but they’re still scars.  Their shape and feel will never be as they once were no matter how great the plastic surgeon.  To have a partner who understands and fully provides unyielding love & support through all of this craziness is simply priceless!!

For those going through preventative mastectomies at a young age, perhaps you are nervous about how this will impact future relationships, disclosing the path you have chosen and the physical changes made to your body?  My sister, who also tested positive for BRCA1 at 19, decided to pursue a preventative mastectomy at 30 after I was diagnosed with stage 2 ductal carcinoma at 36.  She was engaged at the time and like me, found a great deal of support and understanding from her then future husband.  But I understand that not all of us are as fortunate.  For those who are engaged or married, have your significant others been understanding of your BRCA journeys?  I encourage you to share any advice and helpful tips/guidance… and we have not even touched the subject of our ovaries yet!!

More to come my fellow BRCA’nites…

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Mastectomy Nerves

The completely overwhelming feeling of knowing your surgery date is approaching is hard to explain to others who’ve never experienced such anguish.  My BRCA sisters can probably relate to the fact that it’s a very different type of anxiety.  For some it’s elective surgery, preventative measures against the possibility of developing breast cancer.  For others like myself, it’s the next necessary step in the fight against cancer, to ensure it hopefully never returns.  Either way, the thought process one has to go through to prepare for the fact that they will lose both their breasts, is extremely scary, and even with newer nipple sparing procedures, your breasts will not be the same as they were.

When I found out I too carry the BRCA1 mutation like my Mom, at 25 years old, I was in no place to mentally handle such a challenge as a prophylactic mastectomy.  I was single, in my dating prime, and building my marketing career.  Perhaps if I wanted a physical change to adjust how I looked, it may have been an easier decision to make, but I was happy with my physique.  My Mom and I both thought at the time, that diligent surveillance was the right approach.  She was 39 when first diagnosed with stage 2 ductal carcinoma.  At 25, the looming fear of possibly getting breast cancer, even knowing I had the BRCA1 mutation, wasn’t eminent.  My thinking was, god forbid if they find something, it will be early enough to treat easily and at that point, I would get a mastectomy.  In 2005, it was not nearly as common as it is now for young women in their early 20’s to get preventative mastectomies.  I even enrolled in a research study through the NIH and none of the Oncologists in that study discussed prophylactic measures with me.

So how does one handle anxiety as their mastectomy date approaches?  Some of my helpful tips below and please feel free to share your own:

  1. Make sure you have a great support system in place and don’t be shy to share your fears and needs with them – family, close friends, great doctors, etc.
  2. Ask, ask, ask…  The more questions you ask your surgeons the better.  Knowledge can be comforting.  Most breast surgeons have many years of practice with patients in all types of medical situations and can help ease your fears.
  3. Research products that can help make your recovery a little easier such as specialty support tanks designed to hold drainage bulbs out of sight, specialty pillows designed to help support the areas of your upper body for more comfort, etc.
  4. Don’t be fearful to take meds and painkillers.  Valium helped me a great deal! I found sleep to be my best friend during recovery.  The less you move around, particularly within the first few weeks of recovery, the better.
  5. The morning after surgery can be the most difficult.  It’s hard to get a good night’s sleep in a hospital, let alone after major surgery.  I was nauseous from being under anesthesia for many hours as well.  It will be greatly beneficial to make sure you have a close relative or friend there for you when you wake.
  6. Scar reducing/healing products are very helpful.  I used ScarAway silicone strips.  They’re reusable and easy to take on and off.  Some scars are more concealed then others depending on where incisions have to be made.  Mine are quite visible on the sides of each breast, so I wanted a product to reduce inflammation and aid in healing as quickly as possible.

I urge others to comment and share what helped them during mastectomy surgery and aided healing afterwards.

xo fellow BRCA-nites

Learning BRCA

It wasn’t until Mom had a recurrence in 2001 when she read about BRCA mutations. Her recurrence was in the opposite breast, completely unrelated to her first breast cancer diagnosis in the early 1990’s, when she had a lumpectomy followed by chemotherapy and radiation treatment. Linked to Ashkenazi Jewish ancestry, she found reasoning within her BRCA research to get tested for the mutation. The information was still new, but luckily having a PHD in Library Science, she was able to obtain the information needed that lead her towards the decision of testing for it. She was in her early 50’s at the time and did in fact test positive for BRCA1 mutation.

She informed me about being BRCA when I was 25. She knew the chance of passing the mutation down to my sister (who was only 17 at the time and tested at 19), or I, was 50/50, and if I did in fact carry the mutation, thought 25 would be a good age to start getting baseline screenings (mammographies, sonograms and MRI’s).

We met with a genetic counselor who briefly explained what it meant to carry the BRCA mutation, but sadly, having a Mom who had breast cancer twice, both times needing chemotherapy, and a double mastectomy and oophorectomy after her 2nd diagnosis, I knew exactly what having this mutation meant. I didn’t have to read any statistics (which indicate by the way, chance of breast cancer over one’s lifetime with BRCA1 mutation is 80%).

I waited an anguishing few weeks for my results to come in and the news was unfortunately my worst fear come true, positive for BRCA1 mutation. My Mom was sitting next to me at the appointment and I completely broke down, sobbing on her shoulder. It was 2005 and again, I was only 25 years old (my sister tested positive at 19 years old). The question we had for the genetic counselor, what comes next? What should we do?

Hindsight my BRCA sisters is 20/20….

Hello BRCA Sisters!

Simply search #brca on Instagram and you will find over 37,000 images connected to beautiful, brave, strong women in various stages of their BRCA+ journey.  It is significantly more common now to find women, as young as age 23, brave their BRCA world head-on with preventative mastectomies and oophorectomies.

My story is just 1 out of thousands of women who have also been diagnosed with BRCA mutations.  My story starts at the pre-adolescent age of 10 when my mother was first diagnosed with breast cancer in 1990, when little was known on how to effectively treat triple negative breast cancers.  The now common A/C and Taxol chemotherapy regiments were relatively brand new and exploratory back then.  The medical community knew nothing of BRCA genetic mutations and its connection to breast and ovarian cancers.

Perhaps others can find comfort, solace, and further understanding of what it means to identify as BRCA through my story.  I share with all my sister BRCA fighters and encourage you to engage, learn, ask, and seek support.  We are all in this together.

I start my blog with a Facebook post I made the night I received my remission news about a week after my mastectomy surgery.  I, like my mom, am a breast cancer survivor. Mastectomy is just one small piece of my BRCA story, but quite an important piece to share.

February 3rd, 2017

Facebook Family & Friends – In light of all the heavy political news, I’d like to take a moment to announce some very positive news!

At the end of January, my family & I embarked upon the second phase of my breast cancer journey; one that we hoped would be the very last, necessary step to conquer and prevent the disease from ever recurring again. I am ecstatic to report, that I’m now 100% in remission!!

While this last phase physically changed me, it will never define who I am as a woman.  I will always be a mother, daughter, wife, sister, aunt, niece. I bare scars of a survivor and damn proud of it!

Thank you again to my wonderful circle of support.  I am very lucky and extremely thankful!!

“Remember that bravery is not a lack of fear, but the ability to move forward in spite of fear”…

Much more to come my BRCA sisters…  stay tuned!

Good company in a journey makes the way seem shorter. — Izaak Walton