[00:00:00] Adam Walker: From Susan G Komen, this is Real Pink, a podcast
exploring real stories, struggles, and triumphs related to breast cancer. We’re
taking the conversation from the doctor’s office to your living room.
It’s common for people diagnosed with breast cancer to experience depression,
anxiety, and depression. fear and mental and emotional distress. Today’s guest
was undergoing twice yearly screenings for breast cancer because her mother
and aunt had previously been diagnosed. She was scheduled to leave five days
later for a vacation, but then Alecia Robinson was called back for additional
screenings and diagnosed with stage 1a invasive ductal carcinoma ER,
PR positive, HER2 positive breast cancer. She’s here today to share the mental
anguish that can come with a breast cancer diagnosis, particularly in some of the
unknown and waiting moments and how she’s been able to cope and move
forward. Alecia, welcome to the show.
[00:01:01] Alecia Robinson: Thank you. Very glad to be here.
[00:01:04] Adam Walker: I’m looking forward to hearing about your story.
And I want to start off with your diagnosis, but first, let’s dive a little bit into
your history of breast cancer, your family, I understand you’re being screened
every six months; did you have some anxiety and worry as you went in for
those scans? Or was it just a part of your regular routine at that point?
[00:01:23] Alecia Robinson:It was just part of my regular routine at that point.
And this particular scan, when I was getting ready to go in for it, as you said, I
was thinking about vacation five days away from vacation and it was just on my
checklist of things to do. So I didn’t have any particular anxiety about this visit.
[00:01:44] Adam Walker: Gotcha. Okay. And so, walk us through it. You went
to the appointment, you’re supposed to go on vacation, so tell us about the
diagnosis. Did you go on vacation or not? And walk us through that whole
thing.
[00:01:57] Alecia Robinson: No. So what happened was, I remember very
clearly it was a Monday.
I go in, I was doing twice yearly MRIs. And I have the MRI and I leave and I
head to Macy’s because I need to get clothes for vacation. So I’m in Macy’s
thumbing through clothes. And I get a call and it’s from the doctor who’s read
those results and says, and he says to me, “Ms. Robinson, we see something on
this, this scan that we did not see on your last one. And we need you to come in.
We’re going to do an ultrasound. And if we see it on the ultrasound, then we’re
going to biopsy it right then and there.” So, my mind is blank and racing at the
same time. And we arranged for me to come the next day and I go in the next
day. They do the ultrasound, they see the spot and then they do the biopsy.
And he says to me, “it will probably be,” I think he said “four or five days.”
Well, this point we’re at Tuesday and on Thursday by Thursday of that week,
I’m at work. And he calls me to tell me that it is positive for breast cancer and
that there was also, it wasn’t another spot that was a tumor, but there was
another spot that lit up a little bit on the test and he wanted to do a biopsy of that
spot. Because it was pretty far from the tumor spot. And he said, “we need to
make sure that’s not cancer because then that has ramifications for the surgeon.”
So I go back. So this point we’re at Thursday. Vacation is supposed to be
Saturday. He says to me, “I’m not sure how fast we can get you in.”
And he said, “if we can’t get you into next week or later next week, you can go
on vacation.” And I’m like, “I’m going to, my mind’s crazy now.” So fortunately
he was able to get me in the following Tuesday, canceled all of the vacation
plans. And I go in for an MRI guided biopsy for the second spot.
That spot, fortunately, came up clear. But later on, that’s what was clear, later
on when I got my results, there was some other breast cancer in the breast that
just never showed up on any test at all.
[00:04:36] Adam Walker: Gotcha. And now how are you feeling mentally up
to that point? Your world just went from like vacation mode to breast cancer
diagnosis to figuring out next steps. What was that like?
[00:04:50] Alecia Robinson:Well, I’ll tell you, I didn’t have at that point any
major meltdown. My major meltdown was going to come later. It did. And it
came twice. But I think, of course I was, Thursday when I got the diagnosis, I
remember calling my sister and calling my aunt. And of course I felt teary, but I
went into mode of, “okay, what’s next?” Because the thing is, one of the
difficult things about this, there are many difficult things, but one of the things
is diagnosis, all of a sudden you’re having to make some major decisions in a
relatively very short amount of time.
From a personality standpoint, my brain just went into, “okay, what’s next?
What happened? What needs to happen next?” I won’t tell you that, I mean, of
course it was in my head. It’s cancer, but I think I was so like, “you’ve got to do
this. You’ve got to do this next.” And so I went into that mode at that point.
[00:05:56] Adam Walker: Gotcha. Okay, and so you did surgery, right? You
woke up, talk to your surgeon about lymph node involvement. Walk us through
all of that. What was that about?
[00:06:09] Alecia Robinson: So let me go back a little bit and say that after we
did that second MRI, guided biopsy and I met with the surgeon and all of this
happened within the span of two weeks.
By the end of the two weeks, I’m with the surgeon and the surgeon says to me,
“it looks like according to what we can see on the scans and the testing, that this
is early breast cancer. Probably stage one, we won’t know until we get in there.”
According to what they saw, there was no lymph node involvement. So she
gives me my options and my options are, lumpectomy or mastectomy.
Lumpectomy, I’m going to have to do chemo and radiation and at that point I
decided I wanted to do a lumpectomy in the office. At that point, left her office.
Something was just not sitting real right with me. And I was concerned about, I
really didn’t want to do the radiation.
I knew that they could do radiation and very targeted radiation, but it was on the
side of my heart. So I didn’t want to do that. So I ended up with a double, I
decided to go double mastectomy. So I have the double mastectomy. Now
again, she has said to me, when I met with her, “we don’t know for sure, we get
more definition when we get in to see.”
And, when you go in to have breast cancer surgery, they check your sentinel
lymph nodes, which are those closest lymph nodes to the breast, because they
want to see if there are any cancer cells in there, even in a situation like me,
where the imaging showed that there was no cancer.
So, she explained to me, “we’ll check those.” So I go through the surgery and
you were talking about just the emotional toll. I’m doing pretty good leading up
to the surgery. The day of the surgery, going in that morning, feeling okay. I’ve
had many surgeries, so I’ve had a lot of health things. This is different. This is
cancer, but I knew the drill.
It wasn’t until they were about to literally roll me in, when they got ready to roll
me in that I had, I just melted down and started crying. And my sister who was
there with me just got in my face and was like, “God has you, you know that,
right? You know that.” And I was like, “yes.” And so they rolled me off.
I wake up from the surgery and the first thing that’s in my head is, “I’d like to
talk to the surgeon because I want to know what the situation is.” And so she
comes over and she says to me, she’s looking, she has an interesting kind of
look on her face. And she says to me, “well, unfortunately, we did find breast
cancer in your lymph nodes, those first nodes.”
And she said, “and so I had to take more and she shakes her head and she says, I
wasn’t expecting, it’s just I really wasn’t expecting that.” And then she tells me
later, she’s had to take 17 lymph nodes out, 17 additional lymph nodes because
they have to be checked. So that means that literally coming out of the surgery,
that starts.
My stress and my spiral into what became over the next couple of days of a
pretty bad meltdown. I remember getting dressed and waiting for my sister, she
told her to bring the car around and they rolled me out. And the first thing I said
to her when I got in the car was, “they found it in my lymph nodes.” Because I
know at that point it’s in my lymph nodes, we have to do further testing to see if
it has spread.
[00:10:02] Adam Walker: Yeah.
[00:10:03] Alecia Robinson: So that’s Thursday, I have my surgery on a
Thursday and I was scheduled to see my surgeon on a video call the next
morning. So when we talk, she asked me if I remember the conversation and I
say, “yes.”
She again recounts to me, and she again says to me, “I was not expecting that.”
And I immediately say, “do I need a PET scan?” And she said “yes, you do,
because we need to find out.” So, I get through that. And she explains to me that
we’re going to do the PET scan. It’s going to take about a week to get my tissue
results back from everything.
And so I get off the call with her and over the next days I just pretty much
ended up hitting rock bottom by Monday. I started looking up things on the
internet, which I always know they tell you not to do that, but I did. And I’m
that patient that’s always trying to be informed.
At some point I saw, and I don’t remember, it’s probably because it uploaded in
the computer system. I saw the information from my surgery and I saw that it
was written on there that it hit metastasized to the lymph nodes. Now I
understand that intellectually, but my brain is, I’m so stressed that my mind just
goes, “is this metastatic cancer?”
[00:11:43] Adam Walker: Yeah. Yeah. Yeah.
[00:11:44] Alecia Robinson:I’ve not been, I’m not there at that point. We don’t
know. But it’s still hard for me to even just get my brain from going. And I
remember, I think I sent a message to the surgeon. She was like, “Ms. Robinson,
it has to say that because it did metastasize. But we don’t know yet.”
We are waiting. I remember that night I literally did not sleep. Literally, there
was no sleep and by Saturday I found out just through looking through some
things that the American Cancer Society has a program called Reach to
Recovery where they match you with people who have similar cancers as you
do, you put all your information in. Because I felt I think I just wanted to, I just felt
like I needed to talk to somebody.
And I got matched with a woman who almost had identical, the identical
everything lined up from a cancer standpoint. She had lymph node involvement
and I think I just needed someone to be able to, I needed to see somebody that
was still alive, that was still functioning because my brain had so gone to, “I’m
not going to survive this.” And I remember talking to her and it helped me, it
just helped calm me some.
[00:13:11] Adam Walker: Yeah.
[00:13:12] Alecia Robinson: And, so I get through to Sunday and I remember
Monday morning I had drains on because, you have a mastectomy, you have the
drains and my sister was changing, was measuring the fluid and everything and
I looked at her and I said, “I’m not going to survive this. That’s how far I had
gone in that many days. Fortunately, I’m a huge proponent of having a therapist
and I’d had a therapist for years and I just so happened that I had a schedule
appointment that morning. And so I meet with her and she gets me to a point
where I can at least just get myself through the next couple of days.
And then by Thursday, my surgeon calls and says that the other lymph nodes
were clear. It was like, “so it had gone to one and a half” is what my doctor said.
The other lymph nodes were clear. She did say to me also, which was surprised,
my brain was so focused on the lymph nodes, I didn’t really think about the fact
that they look at all of the tissue. And she said to me, it “was good that I had
decided to have a mastectomy,” because they found cancer cells that never
showed up in any imaging that were also there. So that’s how, that’s what
transpired from the time I was diagnosed to surgery, which was about five
weeks.
[00:14:40] Adam Walker: Wow. That is quite the journey.
[00:14:42] Alecia Robinson: Yeah. Yeah. And I honestly, I had never really
tanked so badly in my life. It was just really- because you know what you know,
intellectually, but it’s hard because, I think it’s a combination of fear and anxiety
and everything just takes over.
I knew that I wasn’t going to know anything until I talked to my doctor next,
until they got this stuff back next Thursday. But it was just trying to keep
myself, not as a friend of mine said, “having one foot in the grave.”
[00:15:20] Adam Walker: Yeah. Yeah. Wow. That is quite the journey in such
a short amount of time.
Wow. So, I understand, just shifted gears a little bit. I understand that you
reached out to the Komen helpline for financial assistance at one point you
found an empathetic ear on the other end. I’d love to know what that happened
with that.
[00:15:41] Alecia Robinson: Yeah. Yeah. Well, of course, I couldn’t work. I
know some women, I’ve met women who say, “well, they were just a little
fatigued,” but that wasn’t me. I couldn’t work at all. And of course you still have
bills. And in addition to that, you have expenses. I found something that I could
take that would help alleviate my nausea some, and it was expensive.
And so you have additional things. I knew that there were organizations that
would help financially with breast cancer patients and I had a list of them and I
called Komen. What struck me about when I talked to the person at Komen was
first of all, just how kind and supportive and how much she let me know that
they wanted to be there to help.
I’ve never been someone who’s really afraid to ask for help, but if you are
someone who afraid is not the word I want to use, who may feel self conscious
about asking for help. Yeah. Uncomfortable about it. If you were someone like
that, her whole demeanor and her energy and her empathy would just help to
alleviate some of that.
It was like, we’re here to help. So she walked me through the process and which
I have to say, after I even looked at some other organizations, Komen’s process,
they make it simple for you. The application, it’s not that hard. I got the
information from my oncologist to send over that say, “this is where she is what
she’s been treating for.”
The woman I spoke with said, “it may take, we’re getting a lot of requests now.”
So I think she said initially it could take up to six weeks, but it was in my
account, three weeks later. As I have said several times before, just speaking to
people about it, it helped lift some of the burden. Because when you are in an
ideal world, you want to be able to have your energy and use all of your energy
to try to get yourself well.
And if you are stressing about other things, financial things, that just adds to it.
So it helped. And I appreciated the empathy on the other end of that line.
[00:18:08] Adam Walker: Yeah. I think, you know what I hear from you and
what I’ve heard from many guests on this show is that resounding like you are
not alone.
If you’re going through breast cancer, you’re not alone. You’re not alone. There
is support and it’s not just support, it’s people that like you. Like I love how you
said like that they wanted to be there, that they wanted to support, to help you.
[00:18:29] Alecia Robinson: And I think, thinking back on it, it’s even more
important for people who find themselves
in some way feeling like they’re going through it alone. I have a breast cancer
support group and I can think of two times when someone has said, “I haven’t
talked to anybody about this” or they’ll say, “I really am alone. I don’t have a
village and I’m so glad I can talk to be on this support group.”
So, I think it’s even more important for people who may not have an immediate
village of people, because breast cancer is not something that you should walk
through alone. You just shouldn’t. And so I always say, “reach out to people
because you need people to hold you up.” And it’s not a time if you happen to
be the type of person who is, who takes care of others a lot or again, you feel
like you don’t want to ask for help, it is not time to be Wonder Woman. If it’s a
man, we know men get breast cancer, it’s not time to be Superman. It’s time to
lean on people. And when people ask you what they can do, you tell them. And
if you can, if you have those feelings of feeling like you’re being a burden, try to
squash that.
You need a village around you.
[00:20:00] Adam Walker: That’s right. And people genuinely want to help
more people, I think, than you realize, genuinely want to help.
[00:20:06] Alecia Robinson: They want to help, but they may not know how.
[00:20:09] Adam Walker: That’s right. That’s right.
[00:20:10] Alecia Robinson: And so it’s specific to be able to say, “Hey, I need
you to do this. I need you to come over and do this.” Or if you have children, “I
need you to help me with my kids. Can you pick them up from school?”
Whatever it is.
[00:20:20] Adam Walker:That’s right. That’s right. Alright, Alecia, as you’ve
moved into survivorship, what challenges do you still experience? Still
experiencing emotional challenges? Kind of walk us through.
[00:20:31] Alecia Robinson: Yeah. Well, it’s interesting, as I talked to before,
that when I look back on this whole journey, there are two times where I just
majorly melted down and the second time was actually after my last chemo. I
had gotten through chemo, I was talking to my oncologist and my oncologist
was talking to me about the medications I was going to have to take post cancer
because my breast cancer was estrogen positive, ER positive and PR positive.
Now I knew I was going to have to take medications. My mind had been so
focused on getting through chemo that, the side effects of those meds were just
not in, I wasn’t talking about that. So we’re on a video call, I’m talking to her
and we’re on a video call and she starts giving me my options. “Here you can
take these aromatase inhibitors. Here is this whole thing of side effects with
those, or you can take tamoxifen and here’s those.” I was, borderline because I
was not a menopausal woman yet. So I had a choice. From a side effect
standpoint, neither is great. Neither is a great choice, but I remember as she’s
telling me I’m watching her and I’m on the screen and I’m literally starting to
sob because here I was, I had made it through chemo and I was very weakened
by chemo like most people.
And in my mind, I thought, “okay, you got through this. So now you’re going to
start to be able to get your body some of your strength back. Now it’s not going
to be you’re walking up four stairs and you can’t breathe or you walk from the
car to the doctor’s office, your legs hurt so badly.” Not that you can try to get
some of that back and she’s rattling off what the side effects are of the
rheumatism inhibitors. You got muscle pain. You got to be worried about here,
maybe blood clots. And I was just, it’s like it dashed that whole idea that I was
going to start moving on the upward trajectory. And I remember she said to me,
and I can laugh about it now, but she goes, “Ms. Robinson, I know you’re not all
right.”
And I was like, “I am not all right. I am, no, I’m not alright.” And she said to
me, “you’ve gotten through the hardest part. And I know that this is a lot to take
in and it’s still another decision to have to make, but you can do this.” So I make
the decision. I decide to go with an aromatase inhibitor.
And, I first started on what’s a nastrozole. It gave me itching. And so we went to
letrozole, which is what I’m on now. I’ve been on for about a year and a half. At
first I was not too bad, but side effects have gotten pretty severe. Like foot pain
and knee pain, like interrupting my being able to walk.
I started working out with a trainer who worked specifically with survivors and
breast cancer patients, and I had to miss and feeling like I was 90 and I’m like, and rolling and just hurting.
And so it was really affecting my quality of life. And so that is an emotional
thing to to deal with. I want to take these meds because I know they can help
me. But how do I do this? Because my quality of life is so severely affected.
And right now I am working with my oncologist to try to figure out what we
can do to try to manage it. It’s tough. And it’s also about, yeah, it’s tough
because you want to have a good quality of life. You want to do everything you
can, or at least I want to do everything I can to try to make sure to lessen my
chances of recurrence.
[00:24:26] Adam Walker: That’s right. That’s right. Yeah. So important.
So, Alecia, your story is, it’s inspiring. And I appreciate you being vulnerable
and just taking the time with us today. Before we go, do you have any final
advice that you’d like to give to our listeners about just how to keep moving
forward?
[00:24:47] Alecia Robinson:I think you just have to take it a day at a time and
take every small victory you can get, each day. So if that is that you’re going
through chemo and you’re having a time getting up steps, but you get up one
extra step that you didn’t yesterday, or, and this is something I applied to my life
even before breast cancer. I think sometimes we forget to grab the small victory.
When you are getting it, even if it’s that I had to do six rounds of five. Well, I’ve
gotten through four, whatever it is that you hold onto that. I think also it’s
important to get help. As I said, I’m a big proponent of therapy. Do not feel
afraid.
I think it’s wonderful to be able to talk to our friends and family, but there are
limits to that. If you can get someone, talk to a psychologist or a psychiatrist,
who has tools to help you manage some of the stress and the worry, please reach
out. There is no shame in reaching out again. So I would say those are the two
main things that kind of pop out in my mind.
[00:26:06] Adam Walker:That’s right. There’s no shame in reaching out and
there are plenty, plenty of people that want to help. Alecia, you are an
inspiration. Thank you so much for joining us on the show today.
[00:26:17] Alecia Robinson: Thank you. It’s been my pleasure.
[00:26:23] Adam Walker:Thanks for listening to real pink, a weekly podcast
by Susan G Komen. For more episodes, visit realpink.komen.org and for more
on breast cancer, visit komen.org. Make sure to check out @SusanGKomen on
social media. I’m your host Adam. You can find me on Twitter @AJWalker or
on my blog, adamjwalker.com
