I opened the email to read that this very morning she had
been tested for the BRCA (breast cancer) gene. Her mother had breast cancer in
her 40’s and the daughter’s gynecologist recommended she get tested. Insert
that dreaded feeling of having sent off for a test and now waiting the weeks
for a determination. Not a fun few days, I imagine. I was surprised to find
that the email was asking me for words of advice. My reply was a simple “no
words until you have a definitive answer” and uttering on about panties in a
wad for no reason, hoping for the best, may be a moot point. But the email had
my mind pondering. What WOULD my words of opinion be?
A few summers ago I pondered this question for myself in a
blog post titled “The Burning Question” (http://tradinginthetatas.blogspot.com/2013/05/may-5-burning-question.html).
I recall asking Ron “did we make a mistake in doing this?” As we dissected that
question and in turn wrote the words on the screen, I realized regret would not
be in my vocabulary of this experience. I don’t want to answer that same
question from someone else regarding what path they should choose. It is a
personal decision that no one can really walk you through or to. We can share
our experiences, but a choice to undergo prophylactic mastectomy is not a
decision I want to help you make. Not because I don’t deeply care for you and
want to support you, but because I don’t want anyone to ever look back with
regret and think of my words of advice. Nor do I want you to find yourself
grateful for your decision and think back to my words of advice. Instead I want
the decision to be all yours but based on being informed either through the
eyes of my experience or that of someone else you may know on this same path.
You may fly through with flying colors, or you may find yourself status post
multiple surgeries and complications. I simply want you to know that each
surgical outcome is individual and not necessarily predictable. You may find
yourself consumed with emotions or you go in the OR one day and leave that same
day all the same. It’s not predictable. And experiences are certainly not
transferrable.
In prophylactic mastectomy:
·
You may feel guilt. As one person put it “we
just picked up our ball and went home before the game even started.” We chose
to dodge the bullet instead of facing the beast. There’s guilt in choosing that
path as so many women face breast cancer. You can at times feel lesser of a
woman as a result. But as another friend put it “no one looks down on you for
saving your life”. There is no shame in being proactive.
·
You may feel vain. You lop off both boobs in a
life sparing measure and find yourself maybe not totally loving their reconstructed
counterparts. It would be less vain to remain boob-less indeed, but as I
learned in mastectomy, these things carry a powerful sense of self that you
would never guess until they are no longer at home on your chest. Sure we
banter and prod each other with jests of sag and droop and sizes of miniscule
and boulder proportions, but the minute they are no more, you find that sag and
droop was absolute perfection. These breasts that use to be a nuisance now
carry with them a sense of womanhood and you find just how endearing they can
be when you choose to make them no more. My one point of advice I will offer, if given the choice, do immediate reconstruction. If you don’t have that
choice, just know you may feel some things you have never felt before during
the waiting period. And it’s normal.
·
You may feel pride, and that emotion will
surprise you! There is a sense of pride when you can bring yourself to choose
removing your breasts. Kind of a feminine empowerment. Or maybe a sense of if I
can do this, then I certainly can do (insert whatever you want)…. It’s subtle,
but it may be there underneath the other emotions that take forefront on any
given day.
·
You may feel financial burden. Even when covered
by (and even encouraged to pursue) insurance companies still only pay the majority.
The reminder is still rather pricey. So know this in advance. Ask questions up
front and get price estimates and quotes from your hospital. Insurance
companies are required by law to cover reconstruction if they cover mastectomy,
but it still isn’t 100%.
·
You may feel frustration. You will have many
restrictions immediately after surgery. You can lift this, you can’t life that.
You can take a sponge bath, you can’t shower. You can’t change your own
bandages, depending on where they are. You can’t change your clothes by
yourself when you can’t lift your arms. And for risk of being too blunt, you
may or may not need help in the bathroom. You will have to rely on someone to
help you in many areas and for those of you that are super independent, this is
incredibly frustrating.
·
You may feel a strong need for a female friend.
There are going to be some female things your male counterparts just won’t understand.
My husband recognized this early on and called in my mom for reinforcements.
Find yourself a gal you want to do life with and put them in your mastectomy
pocket. There will be plenty of moments for female laughing (and maybe crying).
·
You may feel indecision. No matter which option
you choose, removal or not, you will wonder if you made the right decision.
Particularly when things get tough. But as with any choice in life, you do the
best you can with the information you have on hand at the time. Do your part to
educate yourself, choose, then don’t look back.
·
You may feel nothing at all.
So instead of advice, I can only offer up this 130+ page
blog of the triumphs and trials of boob 1 and 2.2. I don’t regret my choice,
though it was plagued with 3 more surgeries than intended at the point of the
decision, as I am wiser for it and now most certainly to be breast cancer free.
After all of this uttered on the many preceding pages of screen, I still would
lay down on that table as I did August 7th. But I know many may not
choose that same path given the same experience. In fact, I still haven’t found
another woman who chose this fate in my same circumstance (though I am sure she
is out there), but I have met many who have chosen his path in response to a BC
diagnosis or a BRCA gene confirmation. If you choose to “go for it”, these are
women who can share their perspective with you because though we all had very
different and similar journeys into mastectomy, I know not one who won’t choose
advocacy for you and yours. It’s a club you never want to be in, but once you
find yourself inducted, you most certainly feel loved and supported as we all
learn the boob is much more complex than we realized and an envelope of skin is
never just that.
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