I have many days that start with a big pit in my stomach.  The pit could be the result of a terrible night of sleep as my mind may have wondered all over the map, or even a good kind of pit that stems from great anticipation for the positive proactive steps I will be taking with my own health.  Either way – that pit seems to hang with me most days.

Like many others, I’ve recently grown rather fond of one type of “pit” – that being Angelina Jolie Pitt.  I’m sure you have heard about the recent stories regarding her recent surgery, where she underwent the removal of the ovaries and Fallopian tubes (prophylactic bilateral salpingo-oophorectomy, or “BSO“).  I’m so thankful to her for sharing her story with the world and encouraging others to take a proactive look at their own health, including me.  As silly as it sounds, I appreciate the fact that now when I discuss my BRCA “world” with someone, I or my husband can reference Angelina Jolie Pitt, making it much easier for that person to understand what a BRCA mutation is and may mean, even if that’s at a very high level.

Two years ago, as a BRCA+ young woman, Angelina had a prophylactic mastectomy to essentially eliminate her breast cancer risks, which was a major surgery with a rather lengthy recovery.  I’m in awe at her strength, courage and ability to make these tough decisions rather quickly after she learned of her BRCA1 mutation.  She also discussed quite candidly how having her ovaries and tubes removed was a much more difficult decision, even if the recovery was much different than that of her prior life saving surgery.  Here’s why…

Having your ovaries out puts you straight into early menopause.  Big deal, right?

Wrong…

There are some MAJOR lifestyle changes that can occur from going into early menopause.  I’m not just talking about hot flashes, one of the most commonly discussed menopausal symptom you may be thinking about.  Until faced with my own decisions about ovary removal, I too did not fully understand the risks that come with menopause, especially if you are thrown into it 20+ years earlier than your body naturally would have done so on its own. Compared with women who go through natural menopause, women undergoing premature menopause spend a greater portion of their lives without the protective benefits of their own estrogen.

Menopausal risks are no joke and can vary greatly from person to person, without a clear crystal ball to understand how it will affect you vs. the lady sitting next to you.  These risks are why BRCA positive gals like me are faced with really hard decisions relating to timing the various life saving surgical options.  The laundry list of menopausal risks is long and very overwhelming, but here we go…osteoporosis, early onset dementia, heart disease, weight gain, mental fuzziness,changes to hair, skin & nails, hot flashes, night sweats, pain during intercourse, increased anxiety or irritability, the need to urinate more often….the list goes on.  I am most bothered by the first three, osteoporosis, dementia, and heart disease.  There is not enough research done to truly show what the long term affects on young women thrown into menopause will look like.   So for me, making sure that I preserve my hormones as long as possible is important to avoid some of these major health concerns.  I don’t want to be alive at 50 with dementia or heart disease – that will not be a fun outcome for my family when my goal is to preserve a healthy life.  Ugh, the pit returns…

On the flip side, many, like Angelina, go on hormone replacement therapy (HRT) to manage these menopausal symptoms I am dreading.  My doctor groups will NOT support my use of HRT because I still have my breasts – being a BRCA2 gal, I am more susceptible to breast cancer fueled by estrogen.  While HRT can effectively manage menopausal symptoms, it is uncertain whether they are safe for women with BRCA1/BRCA2 mutations. Studies in women without these mutations have indicated the combined (estrogen plus progestin) hormone therapy increases the risk of breast cancer.  

I need a diagram to highlight the fun, confusing circle that all of these decisions are thrown into.  In short – I need to find a way to reduce my chances of getting ovarian cancer, but in removing my ovaries I would be thrown into menopause.  I can’t counteract early menopause and the lovely symptoms described above with hormone replacement therapy as it could increase my risk of breast cancer.  See where the pit comes from?

Let’s talk about timing….current expert guidelines recommend that women with BRCA mutations undergo bilateral salpingo-oophorectomy (removal of the ovaries and fallopian tubes) between the ages of 35 – 40 or after childbearing is completed.  However, ask any doctor and they will give you a different age in which they feel women with the BRCA mutations should have the BSO surgery.  “We’re really quite pushy about oophorectomy,” one doctor noted.  From their point of view, it is the only sure fire way to eliminate risk, since there is no effective screening for ovarian cancer.  My doctor only sees the “after childbearing is complete” portion of these recommendations and feels strongly that I need to act now, even if I am only 31 years old.

I get it, I really do.  My ovaries need to come out.  I am just not sure that I am ready to part with them just yet.  I am encouraged that there is a movement of surgeries happening for younger BRCA gals like me, ones that want to be proactive but aren’t ready for the forced menopause.  New research suggests that some ovarian cancers may actual begin in the fallopian tubes. Some experts have proposed that “interval salpingectomy”—removing the fallopian tubes and leaving the ovaries intact until after natural menopause—might lower risk for ovarian cancer in high-risk women while avoiding the negative side effects and long-term health consequences associated with oophorectomy at a young age. After menopause women would then undergo a second procedure to remove their ovaries.

Many doctors, like my gynecological oncologist, do not support this surgery just yet.  There is not enough evidence that removing the fallopian tubes can and will reduce my risk of ovarian cancer.  When I brought this concept up to her for the first time last month, she shut it down as quickly as it came out of my mouth.  I was very overwhelmed by the pressure I felt to do something now.  I naturally started to get that immense, not so good pit in my stomach when the doctor reminded me that she has no way to detect ovarian cancer prior to it developing into its deadly stages.  I know she is the expert and I can only imagine that it sincerely pains her to treat ovarian cancer patients each and every day.  The last thing she wants is to have a young woman like me back in her clinic with cancer, when she could have done everything in her power to convince me to throw my ovaries out with the trash.

This appointment was my first true ‘call to action’ appointment, since I know I am done having children.  I know my next step is to be proactive with my breast and ovarian health in a way that makes the most sense for me and my family.  I am ever thankful my mom was at this appointment with me.  She doesn’t even realize what it meant to have her walk through the doors of the “Courage Clinic” with me, side by side.  That her presence alone was the support I needed that day, not to mention I needed her clear mind to ask the tough questions I could not sputter out on my own.  I do believe that appointment truly opened my mother’s eyes as well – as she now understands the risk/benefit weighing game I have to play with my own health and how hard these decisions are to navigate.  My mom is my rock and I’m so thankful for the strength she gave me, that “I could cry right now but I won’t” face that most of you have seen.  I get that from her and it sure comes in handy these days.

My dad visited this week where we discussed my very recent surgery decision.  It felt so refreshing to hear “Carey, I’m proud of you for making a really difficult decision that we are confident in.  We know you did a lot of research and we will be here for anything you need as you recover.”   The hug that came with that spoke volumes.  To be there for me is to understand…to support…to give out extra hugs.  My dad understood in a way that is unique to both of us.  He has read the research about his daughter so that he can be there to support my decisions in the midst of navigating the anxiety and weight of his own high risk challenges.

Thank you for the many texts, emails, prayers, surprise coffees and extra hugs lately.  Those speak volumes and turn my “pit” into a positive one.  One that makes me feel empowered, supported, in charge of my health.  Thanks to my dear husband for putting up with me as my anxiety and call to action has been at an all time high since meeting with my ovarian cancer specialists last month.  Thank you Angelina for sharing your strength with the world and giving me that extra push I needed.  Thank you for my faith in the Lord’s plan with all of this – he has definitely been the shining light that has brought me to peace with my recent decision.

Stay tuned for my surgery update…

My pit remains, but I know it’s in His hands.

xox

Carey

My twins are 14 months old, my daughter is three.  I can’t hide behind being pregnant anymore.  Any doctor I have met with has made me feel like I am a ticking time bomb.  You see, when I was pregnant or nursing, I could delay the reality of any major surgery to greatly reduce my chance of getting breast or ovarian cancer.  However, now that my ovaries have no further use other than to perhaps grow cancer cells, most doctors would not understand why I would want to wait another second to have them removed.  Same goes for my “girls.”   Others challenge that once I am done with nursing, why would I hesitate to undergo major surgery to chop them right off?

Let me  back up a bit and get you up to speed with how I got to this point today.  Back in December of 2010, my aunt approached me about getting tested for the BRCA gene mutation.  You see, cancer has been no stranger to my family, specifically on my father’s side.  My grandfather had lost his battle to prostate cancer and my dad’s female cousin had lost her battle to breast cancer, all within a week.  Shortly after, my great aunt (my grandfather’s sister) continued to battle both breast and ovarian cancer AND my godfather/uncle also got diagnosed with prostate cancer – both since have passed away from this terrible disease.  Three of my dad’s other cousins have had and survived breast cancer as well – one of which was male.  Do we sense a theme?

The amount of loss my family has faced due breast, ovarian and prostate cancer has been heartbreaking.  My grandfather was my hero and my godfather was such an amazing uncle, father and husband.  Losing them to the same disease was so hard on all of the loved ones left behind.  To learn from my aunt that there was a test that would detect whether or not I was more likely to get cancer was a bit overwhelming after what we had all been through.  At the time, I approached my father about getting tested, but he refused.  Rightfully so, the wounds were so fresh from losing his father and learning of his brother’s diagnosis, he couldn’t handle yet another potential bit of bad news.  I decided to get test anyway without him knowing, which was such an extremely hard decision.

In late January of 2011, I went through genetic testing through my OBGYN office.  My 60 year old doctor said to me, “I have never had to call anyone back to tell them that they are positive, so I’m betting I won’t have to with you, Carey.”  After two weeks of painful waiting, my doctor called and after saying his name, he was silent.  In that moment, I just knew.  I somehow found the courage to say, “Doctor D, I won’t even make you say it out loud, I’m positive aren’t I?”  His voice trembled as he said “Yes, I’m so sorry…”

It was as if I was given a cancer diagnosis right then and there.  My doctor was so scared of and nervous about the positive test result, making me feel even worse.  I felt bad for him as well!   He quickly referred me to a genetic counselor and suggested I get in touch with groups like FORCE and Bright Pink for support.   

To bring this full circle, now I was in a position of understanding that I had inherited the BRCA2 mutation from my father, however was not in a position to yet share this with my parents as they didn’t want my dad to go through testing.   Personally, I had absolutely doubted that there was some test that could actually accurately define that I would basically one day get cancer.  It felt like a bit of hocus pocus and I really didn’t believe it.  Until I had to.  It was clear to me that this gene was the reason that so many of my relatives have had or lost their battle to cancer.  At the young age of 28, I was given a full deck of cards with so many emotions attached to each hand I would potentially lay out.  Not to mention, I had to carry the weight of some troubling news about my father’s cancer risk as well.

Within weeks of learning about my positive test result, my husband and I met with a genetic counselor.  I was numb and to a large extent, sad and then angry and then sad all over again. The counselor lost me when she said that my lifetime risk of breast cancer was 89%… I am guessing my family is what is bringing UP the averages, so the counselors have me preparing for the when vs. the might unless I undergo some major surgeries by my mid 30’s.  You want me to cut off my WHAT??  Having to recreate who I am emotionally and physically…I wasn’t even 30 yet when this news hit.

That said, the counselor had done her very best to encourage me by going through all of the things that I could do to take charge of my health – these included enhanced screening, prophylactic (risk-reducing) surgery, and chemoprevention drugs.  The topic of children came up, which really put the timing of my decisions into perspective.  In short – I needed to have children asap so that I could have my ovaries out and breasts removed to ultimately save my life.  While my husband and I wanted a big family some day, we weren’t prepared to have to start trying so soon, nor did we know that our “trying” felt like we needed to get pregnant now or else…it surely wasn’t the romantic “let’s make a baby” experience many couples get.  At the time, I felt like that entire experience was robbed from us, since all we could think about was that we needed to make our family, like yesterday, otherwise we would be pushing too close to the time when experts greatly urged BRCA positive patients to consider surgery that would no longer allow for us to conceive and/or breastfeed if we did have children.

Within a few months, we were blessed to learn that we were pregnant with our daughter.  Knowing that I was going to be a mom certainly put everything into an even better perspective for me.  On my up days, I could absolutely find hope and confidence that everything would be alright.  I tried my hardest to avoid thinking about what I was up against with regards to my own health realities and just enjoy each day as it came.  I did end up sharing with my mom, who then shared with my father, the news of our BRCA2 gene mutation.  My mom could just tell I wasn’t the same.  I was making decisions a bit more quickly than I had in the past – donating more money, going on more family outings, buying the forever home I always wanted.  My mom knows what a conservative person I am, so to see me make some major decisions rather quickly and emotionally, she called me out on it.  My answer to that “I’m living like there is no tomorrow.”

I should have mentioned earlier that I had let my older brother in on the “secret” news shortly after learning of my BRCA positive diagnosis.  He was a good sounding board since neither he nor I chose to tell our father out of respect for his own wishes.  My brother went through testing himself and unfortunately was also positive, increasing his risk for prostate cancer.  We now both have a 50% chance of passing this along to our children, something you better believe we would rather NOT have in common.  My brother is a smart, successful family man and I know the worry is his heart is there, but he sure does not show it.  He is living out his own dreams and is wildly successful.  I don’t know if he has ever admitted to me that he is now fueled with extra ambition under him with what he now knows.  Either way, I can tell he’s living his life to his fullest personally and professionally, enjoying every minute he can with his loving wife and two amazing kids.

By mid 2013, my daughter was barely a year old when we learned we were expecting again.  I had spent that last year enjoying every minute of my little girl and was able to nurse her right up until I got pregnant with double the blessing – twin boys.  As much as I was shocked to learn we would be having twins, it was another moment for me that I knew the Lord was on my side.  He knew I wanted three kids but that my time to conceive was running out.  He absolutely blessed us with a two for one deal that I am SO grateful for.  My family could be complete and I didn’t have to worry about squeezing in a third pregnancy just before I needed to go in for surgery.  We are now a family of five, and I am so thankful for the beautiful, healthy children God has blessed us with.

My boys went full term and were a lot of fun from day one.  Let’s talk about one of their favorite bed time rituals – breastfeeding.  While many do this naturally, some don’t at all, and some just can’t, I was on a mission to ensure my twins had breast milk for as long as humanly possible, for so many reasons.  Breastfeeding made me feel like my breasts were actually doing good, since I now had such a love/hate relationship with them.  I am confident my husband felt the same and had grown to despise them over the past few years.  I don’t blame him, but it certainly changed things.  My self confidence in that department was close to zilch, but I continued to focus on the positives.  I thanked the man upstairs for giving me a way to provide good nutrition for my kids.  Not to mention, I knew that the longer I breastfed, the more it would protect me from getting cancer. As experts state (in way that actually makes me smile) – making milk 24/7 limits breast cells’ ability to misbehave.  Click on the hyperlink in that prior sentence to read the other reasons breastfeeding helps lower breast cancer risks.

On the other side of the coin, my surveillance options are a bit limited as long as I am producing milk.  My breast care group is eager to get a baseline MRI on my breasts, but cannot do so until I am done nursing.  While a traditional ultrasound and mammogram “will do” for now, they really need a deeper look at my breast tissue.  I will dive into my surveillance journey in a future post.  Having said all of this, my twins are approaching 15 months and get a majority of their nutrition from table foods and drink both breast milk and whole milk in sippy cups.  I might finally be at a point where I can no longer hide behind creating and pumping milk for the boys.  Perhaps I have hit that stage in my life where I need to face my breast and ovarian cancer risks head on with no further mask up.  I actually have to put my big girl pants on, dive into my surgery options and timing and take ownership of something that I am actually privileged to understand about my own health.  Being pregnant and/or nursing the better part of the past four years really has allowed me to avoid this exact moment.

But, It’s time…

My journey continues…

xox

Carey