In winter of
2013 my family found out that the BRCA 2 gene was among us. I remember reading
the email from my aunt that started the “family affair.” I was sitting there
with my husband on the couch and I remember crying as I read the email. At 31
it is not something you really think about or want to think about. I remembered
immediately talking to my mom to see if she was going to be tested, which she
was. I remember telling myself not worry and wait to find out if my mom was
positive first before really “thinking” about it. In January, the news came
back that both my grandma, who is a two time breast cancer survivor, and my mom
tested positive for the gene.
My mom took
action quickly and by March she was all set to have her preventative double
mastectomy and her complete hysterectomy. I was there with my step-dad the day
my mom had her marathon surgeries. It was a long day, but knew my mom was getting
excellent care and getting to kick cancer’s ass before it could kick hers.
By the end
of April 2014, I made my appointment to see the genetic counselor and after what
seemed like forever, my insurance finally approved the test. In June, a few
days after my first cousin was diagnosed with breast cancer at 33, I got my
results; I too was BRCA 2 positive. I have an 84% chance of breast cancer by
the time I am 70 I was told. I remember sitting there in the doctor’s office,
expecting my results to be positive, but still crying when I heard the news. I
guess I was holding out hope that the 50% chance was going to be in my
favor. The genetic counselor and I
talked about the results and what the different options do to diminish your
chances of breast and ovarian cancer.
I called my
husband right after I left the doctor’s office, crying as I told him the results.
He was so encouraging and supportive. We had decided prior to finding out the
results that I wasn’t going to “jump” right in a do the preventative double
mastectomy because we had a trip to Jamaica planned for a friend’s wedding in a
few months. We thought in the next year or two, that is when I will do it. So,
I chose the early screening route. Not once did I think I would have any issues
in regards to insurance. Call it naïve, but I just assumed that because I was
deemed high risk, everything would be okay on that front. So, I scheduled my
very first mammogram.
On a Friday
afternoon, I got a call from the breast center that preformed my mammogram; this
also happened to be the day my cousin was having her double mastectomy. I was
told that there were some microcalcifications that were of some concern and they
wanted me to come in for a diagnostic mammogram. I remember feeling defeated
and thinking how much I didn’t want to follow in my cousin’s footprints, but
knew the possibility was there.
A few days
later I had both my vaginal ultrasound and my diagnostic mammogram. My
ultrasound came back fine…just an ovarian cyst, but nothing to be concerned
about. My diagnostic mammogram still caused some concern for the radiologist
and we subsequently scheduled a contrast MRI and a breast biopsy. By the time
all of this went down, my husband and I had to cancel our trip to Jamaica. We
just didn’t have the finances at that time to pull off the expenses of the MRI,
breast biopsy, and the trip to Jamaica. Thankfully, the MRI came back clear and
the biopsy didn’t show any signs of cancer. I remember feeling so relieved. I
was at work and remember coming out my office crying, happy tears, that I dodged
it for now.
Everything
happened so quickly and it took a month for my explanation of benefits to
arrive for my screenings and procedures. My MRI and biopsy were all preapproved
and I had no issues. My mammogram, diagnostic mammogram, and vaginal ultrasound
were a different story.
Each one
came back denied for not being a covered benefit under my plan…over $1800 worth
of procedures. After nearly 5 months of calling the cancer center and my
insurance company, things were slowly getting sorted out. The diagnostic
mammogram was cleared first, a billing code error and it was covered at 100%.
Then my ultrasound was finally corrected and covered as well at 100%. However
the first mammogram, the one that started my roller coaster kept coming back
denied, regardless of the information submitted or the codes that were used. It
became clear that my last hope was to do an appeal to my insurance company.
So in
December, almost 6 months after it all started, I sat down and wrote an appeal
letter to my insurance company, making my case to cover the mammogram. I
submitted my test results, peer-reviewed journal articles, information from
different websites, and information given to me by my doctor. During that time,
I kept getting the bill for the mammogram. Watching as the deadline would come
and pass. I knew the “drop dead” date in which the bill needed to be paid by
before it would go to collections…February 4, 2015. A week before the deadline,
I finally received a response. My insurance company granted me a ONE time
exemption to their policy for the mammogram. They made it really clear; this
would be the only time they would make this exception.
So here I am
now, wishing I could have a preventative double mastectomy so I can kick
cancer’s ass before it has a chance to kick mine, but I can’t. My insurance
company, which I have through work, doesn’t cover enhanced screenings for women
at high risk nor does it cover preventative surgeries. I also make too much
money to receive assistance to cover mammograms from multiple non-profits in
the area.
I have
moments of jealousy when I hear of women, even ones in their early 20s, having
no problems getting the screenings or the preventative surgeries covered. Why?
Why can’t I be one of them? I remember initially thinking that I was happy I
was the sister who came out positive while the other two came out negative
because I felt I had the support system and finances to handle what was a head
of me. Now, I don’t think that way as much, instead I have the weird feeling of
wishing that the biopsy showed cancer so I could just bite the bullet now instead
of wondering when it will happen. I mean sure there is a 16% chance I will
never get breast cancer, but the odds are so not in my favor.
So what am I
doing? Well, in June I will have another mammogram, which I will pay completely
out-of-pocket. It is hard to say what I want the results to be. If it shows
cancer, I can do something about it now. If I don’t have breast cancer than whoohoo,
I don’t have cancer, but will be left wondering when will my time come? When
will I get the news my grandma received twice and my cousin, who is just a year
older than me, received? When I turn 35, I will be able to get one mammogram
covered, but will have to wait until I am 40 before they would cover another
one and then 50 until they will cover them yearly. All I am left with is hoping
my insurance will change its policy sooner rather than later. I cannot afford
the traditional early screenings my doctor and many other doctors recommend. I
cannot afford paying for a yearly contrast MRI, but at least I can afford the
yearly mammogram and I can only hope that if cancer does make its presences in
my “time bombs” that the mammogram will catch it and catch it early.
~Acacia
Fike-Nelson~