I was 54 years old, and my GYN had retired. He had taken care of me for 17 years. He knew my mother had been diagnosed with
breast cancer in 1995 and then again in 2012.
That is because he also took care of her. Nothing had ever been mentioned to me about
getting genetic testing done to see if I had an increased risk of developing
breast cancer. At the time, we thought
my mother was the only family member that had been diagnosed and treated for
breast cancer.
With my GYN retiring, I had to choose another GYN. I was fortunate enough to have picked one
that believed in doing genetic testing when there was a family member that had
already been diagnosed with cancer. I
was not pushed to do the testing, but was informed that it was available, and
my family history on the questionnaire revealed that my mother was a 2 time
breast cancer survivor. With this
information revealed, my GYN stated I was a good candidate to see if I carried
the genetic mutation that would increase my risk of getting cancer. I was all for getting it done, just to see if
I was possibly going to follow in my mother’s footsteps. Having watched my mother go through her
phases of discovery of the cancer, verified diagnosis, treatment with tissue sparing
surgery, power port placement, chemotherapy, hair loss, the “yucky” feeling of
all the side effects, and then radiation, I knew that I wanted to avoid getting
cancer if I had any way of knowing my risk factor.
I did my BRCA testing on October 3, 2013. Fortunately my insurance covered the entire
cost. My results (BRCA2+) were called
to me by my GYN on October 31, 2013.
Along with the results, she informed me that she was referring me to a
breast specialist who dealt with genetic mutations for breast cancer. In early November 2013, I had my appointment
with my breast specialist. She examined
me, asked lots of questions about my family history, and explained all the
options available to approach this knowledge of my mutation. There were three options: 1) increased surveillance, 2) long term oral
meds (tamoxifen), and 3) preventative surgery - bilateral mastectomy with
reconstruction.
I knew that for me, doing increased monitoring was not a
good option. I would need to be seen
every six months for a mammogram and then bilateral MRI of the breasts at
alternating visits. I had a hard enough
time making sure I was getting in at one year intervals to be seen for my GYN
appointment and mammogram. My increasing
number of visits was a not going to fit well with my schedule.
Taking long term oral meds was not a good option for me
either, because I did not take any meds on a routine basis, and I knew that I
would have a difficult time remembering to be faithful in following
through. Plus, I was aware of the
possible side effects of the medication.
The plan that fit best for me was to have the preventative
surgery. But to get to that point, I
still had to have the MRI, which needed to be approved by my insurance
company. In the meantime, my breast
specialist strongly encouraged me to have a hysterectomy because of the
increased risk of getting ovarian cancer which is harder to detect.
I had my robotic laparoscopic assisted total hysterectomy
with bilateral salpingo-oophorectomy in December 2013. My pathology was clean – no presence of
cancer in the tissue removed.
Hooray! One type cancer risk had
been decreased.
In January 2014, my insurance approved my MRI. That was scheduled for February 2014. The results looked good -no suspicious
lesions. That was great news.
Now I had to wait for my insurance to give approval to have
the preventative surgery. Finally in
April 2014, my insurance approved my bilateral mastectomy with
reconstruction. I went to see my chosen
plastic surgeon and we discussed reconstruction options for me. I chose to have reconstruction using
Latissimus Dorsi muscle flaps with insertion of tissue expanders. This was going to give me a more natural
appearance after all the surgeries were complete. I chose not to save my nipples because my
mom’s cancer was invasive ductal carcinoma.
I wanted as much tissue gone as possible.
In May 2014, my breast specialist and plastic surgeon had
coordinated time they could both work together to get my surgery
completed. It was an all day event, but
I did well, and stayed in the hospital for 3 days. My pathology for this surgery was clear and I
was now a “Previvor”. I managed to get
all my preventative surgeries done and escaped the cancer diagnosis.
Granted I still had other surgeries to go through. I had multiple fills on my expanders through
the next few weeks, and my plastic surgeon wanted me to wait for at least 3
months after the last fill before doing the tissue expander exchange to the
implants. I was all for the wait, I
needed a break and try to have a normal schedule for a while.
In September 2014, I was able to get my 2nd stage
reconstruction with fat grafting to fill in the areas around the implant to
give my breasts a full natural look.
That was the easiest surgery so far.
Fast forward to today, early April 2015, I am now at the
point in my journey where I need to decide if I want to have my nipples
reconstructed. That is something I have
not decided upon. I go see my plastic
surgeon again in late April 2015 to discuss this and make a decision. If I do the reconstruction, I will later get
nipple tattoos to make them look natural.
If I do not do the nipple reconstruction, I can leave them as they are,
or go for 3D tattooing or some interesting tattoo to cover my scars. I am not unhappy with my scars. I literally have a circle scar on each breast
where the mastectomy was performed. I
also have a straight scar under each breast on the mammary fold. It is not even visible. These scars under the breast were from the
exchange surgery.
Who knows what the future will bring. I have shared my test results and progress
with my family from the beginning. After
I got my BRCA2+ results, my mom and sister had their testing, later followed by
my daughter, my 3 nieces, my brother and my son. There were a total of nine in the family
tested. Of those nine, five are positive
for the BRCA2 mutation. Fortunately, for
the four that had negative results, they will not have to worry about their
children ending up with the mutation.
For the rest of us, well, we will see as the children grow to adulthood
and decide if they want to get tested.
A good thing in my favor was my very supportive family,
friends and co-workers. Just within our
family, we had four of us with overlapping Dr.’s appointments, surgeries,
various testing, treatments, etc. We
were all in it together. We are Facebook
users, and my sister found the BRCA Sisterhood page. We each asked to be a member of this page,
and we were accepted because of our BRCA status. There is a wealth of information provided,
lots of stories of others and their journey, pictures that were shared from
transformation of before surgery to results along the way through the healing
stages, and final pictures of completed reconstruction. There are also stories about those that chose
to do increased surveillance instead of preventative surgery. This group of ladies is extremely supportive,
and there is usually someone available at any time of the day or night. They may be in a different town, state, or
even country, but we all are traveling this road. The sharing of others journey lets you know,
you are not alone.
For anyone trying to decide if they should get tested for a
genetic mutation, it is a personal decision to discuss with your Doctor and
genetic counselor. Get all the
information you can and make an informed decision on what works best for
you. There is no right or wrong
answer. Each needs to decide what is
best for their situation.
I am aware the sharing of my story
will be used on a public blog. I have
consented to placing my story on this blog, in hopes that others will gain
knowledge and/or benefit from my experience.
~Marie Wheeler~