Meet the Models: Rebecca Muse-Orlinoff, Love Local, Concord

My name is Rebecca Muse-Orlinoff; I am a Concord native; I moved back almost two years ago with my
husband Justin and two kids, Levi and Zara who are in first grade and kindergarten at Alcott. We love it
here – the great schools, wonderful people and community – and it’s sort of a comfort to know that the
level of cell phone service is about the same as when I last lived here. In the nineteen hundreds.

My breast cancer story is about prevention, about family, and – strangely enough – about cilantro and
bunions and unibrows.
A few years back, I decided to send away for an ancestry test through 23andme. As an impulse buy, I
tacked on their health and wellness trait analysis option too. I spit into a tube and dropped it in the mail
and a few weeks later I got an email with my results.
Now I don’t know if any of you have taken one of these tests but when I tell you the level of randomly
specific information you get back – like whether you have
 a longer ring finger than index finger
 that aversion to cilantro where you think it tastes like soap
 a likelihood of developing bunions
 and a unibrow
(Yes, no, no, and unfortunately, yes)
Side note! I was also quite interested to find out that “misophonia” is a real trait they can identify
through DNA. For those who don’t know what misophonia is: it’s an intense dislike of someone’s eating
sounds, like chewing, or slurping cereal, and – just my own experience here – but if you have a husband,
you probably have misophonia.

Over the next few months, 23andme would send emails announcing newly identifiable traits. In spite of
the initial excitement about no bunions (yay!), I usually ignored these emails because first of all, I had
gotten the information I was most interested in, and second, because unfortunately I am that person
with 13,000 unread emails, which – who knows – may actually be a trait that 23andme can detect now,
but I will never know, because I never check my emails.
But one day I happened to see one that said, “We can now detect an elevated risk of breast cancer.”
And I opened that one. And I’m a bit ashamed to admit it but I think I was driven to open it because I
was highly confident that I would not have that marker in my DNA; we had no family history of breast
cancer. Looking back now I equate the feeling of opening that email to the feeling of writing down
something on your to do list that you’ve already done, just to get the dopamine hit of crossing it out.
Well, I’m standing here today, and so I’m guessing that you can guess the gist of the email. It said they
had detected the BRCA1 gene mutation in my DNA and that meant I had an elevated risk of breast and
ovarian cancer.

I was surprised, and didn’t really know what to do, if anything. This wasn’t a diagnosis, and I had
happened upon it so randomly. Was it even a big deal?
I emailed my primary care doctor for a gut check because she was typically pretty conservative in her
treatment plans. I think she prescribed me antibiotics only once over the course of a decade, and she
certainly never offered to do anything to help my misophonia, or my unibrow.
But she wrote back right away and said I needed to get a mammogram immediately. She gave me the
name of an oncologist and said I should see her the following week. I was 37. And that’s when I guess I
knew that this was a big deal.
The BRCA1 genetic mutation was made famous by Angelina Jolie in a 2013 op-ed in the New York Times
(which I mention because it has often been said that I have a lot in common with Angelina Jolie). For
every 100 women with BRCA1, over 60 will end up with a breast cancer diagnosis, and, depending on a
variety of other factors, anywhere from 35 to 70 of them will receive an ovarian cancer diagnosis by the
age of 70.
My grandmother, Dot, had one son – my father. Dot died at the age of 49 from ovarian cancer, which I
never knew, until I opened that email from 23andme, prompting some family conversations.
My two sisters both got tested, and are both also carriers of BRCA1.
The recommendation for carriers is monitoring via mammograms and MRIs alternating every 6 months,
likely followed by mastectomy and oophorectomy – and increasingly – hysterectomy too.
 My oncologist told me I should have had my ovaries out before 35 and that I was playing with
fire by waiting even a day longer. She said we could address a mastectomy a little later because
early detection for breast cancer is more reliable.
 My functional medicine doctor told me to focus on a healthy lifestyle and less invasive detection
and prevention methods – like thermography. She said that surgery would do more harm than
good and that semiannual mammograms and MRIs were too much radiation for a healthy body.
I felt really underequipped to make a plan. I had a lot of complicated feelings wrapped up in what to do
– matters ranging from family size to staring down the barrel of surgically-induced menopause to
navigating the conflicting medical advice I was getting. I felt really on my own in the decision, and I also
felt guilty, for holding the privilege of this information, and yet not being entirely sure whether I would
act on it.
Ultimately, at 40, I made the decision to get a bilateral oophorectomy and full hysterectomy. In the next
couple of years I will also get a prophylactic double mastectomy. Between my sisters and me, the
current surgery tally is 4 out of 6 breasts, 4 out of 6 ovaries, 4 out of 6 fallopian tubes and 2 out of 3
uteruses (or is it uteri?)
Among the three of us there are 4 daughters – Dot’s great-granddaughters. I’ve been told to get my
daughter, Zara, tested no earlier than 20 years old. I’m glad I didn’t know at that age – but then again – I
recognize that’s the privilege of lucking into this information instead of finding out under more urgent
circumstances.
So that’s me.

And I know that many of you have a far deeper and more challenging relationship with breast cancer.
For anyone who is considering testing, family history or not, of course I can’t tell you what to do if you
find out that you have elevated risk factors; it may not be as obvious of a choice as you kind of assume it
would be. It wasn’t for me. But I can tell you that in my opinion, it is worth receiving the complicated,
but ultimately empowering gift of being able to make the decision of whether to act – even if you don’t.
Or even if someone you love, didn’t, or couldn’t.

And that brings me back to Runway and the wonderful work that Olivia and the team do every day for
families impacted by a breast cancer diagnosis. They create community for survivors and for those
grieving a loss; they fund summer camps and tutoring and house cleaning so that kids can keep on being
kids and households can keep on running when mom is undergoing treatment or when treatment stops
being effective; they produce a runway show, that becomes this joyful catharsis…a place for all these
painful and hopeful and exuberant feelings to go, and be together. As Olivia has said, while many breast
cancer organizations look to find the cure, Runway is looking to find ways to help those families for
whom the cure does not come in time.
So as my good friend Angelina Jolie once said, “When other girls wanted to be ballet dancers, I kind of
wanted to be a vampire.” But she ALSO said,

“I wanted to write this to tell other women that the decision to have a mastectomy
was not easy. But it is one I am very happy that I made. My chances of developing
breast cancer have dropped from 87 percent to under 5 percent. I can tell my children

that they don’t need to fear they will lose me to breast cancer.

I want to encourage every woman, especially if you have a family history of breast or
ovarian cancer, to seek out the information and medical experts who can help you
through this aspect of your life, and to make your own informed choices.”

Thank you so much for coming tonight – and if your genes enjoy Cilantro like mine do, go get some
guacamole and the pink drink at Adelita, as a portion of proceeds will go to Runway – but only go after
you give generously here at Love Local. And if you see me at Adelita, please don’t chew too loudly,
Justin.