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