S1Ep1 The Diagnosis

Welcome to the first episode of Care Partner's Compass: Navigating CRC.

In today's episode, we'll look back at the beginning of the my wife Kristine's stage 4 colorectal cancer journey, the diagnosis.

I am joined by CRC patient advocate and friend Annie Delores, whose information can be found here or through the podcast's website. 

Full transcription can be found on the website.

Host, producer/editor, and composer: Elsa Lankford
Guest: Annie Delores

Special thanks to Tina for her feedback and friendship. 

Helpful links related to this episode:

• NCCN guidelines for Colon Cancer 
• NCCN guidelines for Rectal Cancer
• WHO fact sheet on Colorectal Cancer

• (00:43) - Intro to Special Guest - CRC Patient Advocate Annie Delores
• (01:07) - Before Kristine's diagnosis
• (02:57) - Kristine's health background
• (04:41) - Beginning tests and scan
• (05:36) - Colonoscopy
• (06:59) - Stage 4 cancer - don't always start with surgery
• (08:36) - What seemed impossible
• (10:14) - Meeting with the oncologist
• (12:05) - Formulating the plan
• (13:32) - NCCN Guidelines
• (15:02) - Tumor board
• (15:41) - Goal: Liver surgery
• (17:16) - Difficult stats
• (19:39) - Why telling this story is important

Creators & Guests

Host

Elsa Lankford

I'm the host of Care Partner's Compass: Navigating CRC, a patient advocate for colorectal cancer, and a care partner to my incredible wife Kristine. I am an artist, composer, educator, and podcaster. I'm a professor in the Electronic Media and Film Department at Towson University.

Guest

Annie Delores

For the last six-1/2 years, Ann has become an experienced patient advocate especially in the areas of clinical trial assistance for colorectal cancer patients (including knowledge of relevant biomarkers such as MSI, BRAF, KRAS and NRAS). Ann shares information on (almost) a daily basis with a number of online colorectal cancer groups – from small specific biomarker driven groups (BRAF CRC, KRAS mutated NRAS group) to very large online communities e.g. Stage 4 Colorectal Cancer FB and the Immunotherapy Support groups. She volunteers for KRAS Kickers and Fight CRC's Research Advocates Training program which includes attending oncology and cancer conferences and workshops. She is a fierce advocate for CRC patients and carepartners.

What is Care Partners Compass: Navigating CRC?

A podcast for care partners, cancer patients, and anybody who knows or loves somebody with cancer, particularly colorectal cancer (CRC). Care Partners Compass is told through the lens of a Stage 4 CRC care partner with occasional guests.

Season 1 will be primarily from my personal experience as a stage 4 CRC care partner. Topics will include diagnosis, biomarkers, clinical trials, second opinions, finding hope and joy, and more.

The podcast trailer is out now. Please listen and share widely.

Logo design: Kristine Dunkerton

Episodes will be dropping in March 2024 - Colorectal Cancer Awareness Month.

If you are 45 and older, or are any age and are experiencing anemia, unexplained weight loss, or other symptoms, please schedule your colonoscopy.

Disclaimer:
This podcast and its content is for entertainment purposes only. The views and opinions expressed by any hosts or guests on this podcast are their own personal opinions.

Reference to any specific product or entity does not constitute an endorsement or recommendation.

This podcast does not contain medical or legal advice. Please consult your medical professional about any medical questions or concerns.

Elsa: Welcome to Care Partners
Compass Navigating CRC. My name

is Elsa Lankford. I am the care
partner to my incredible wife,

Kristine, who has stage four
colorectal cancer.

Elsa: In today's episode and in
a few of the episodes, I am

joined by my friend Annie
Dolores. She's been a patient

advocate for CRC for almost
seven years. She's very involved

in colorectal cancer and KRAS
social media groups and

communities. She selflessly
shares her wisdom and research

at conferences and online.

Elsa: It kind of started back in

May 2021. Peak COVID. Era. So,
yeah, So she went to her primary

care for her annual physical and
in the in the bloodwork, her

iron was low.

Annie Delores: She was 45 in
2021.

Elsa: I think she was 48.

So she was put on iron pills for
a month and had the bloodwork

checked again and her iron was
even lower.

Annie Delores: Wow.

Elsa: So yeah, so there's
obviously something wrong,

but it didn't seem like, you
know, a big deal.

Annie Delores: Did she? So she
was anemic. Did she feel tired?

Elsa: She does a lot of exercise,

a lot of steps, a ridiculous
amount of steps for normal

humans.

So it seemed.

Annie Delores: She might want us
to edit that out. But I think

you should hold on to that one.
I think you can prove that

legally, with over 10,000 steps
a day you're.

Elsa: On, right?

Annie Delores: It's clearly. Yes.

Elsa: Yes. 15,000 steps a day as
your minimum.

Annie Delores: Oh, my gosh. Wow.

Elsa: Not normal, but she likes
it In. retrospect. She was

losing weight.

Annie Delores: Oh, interesting.

Elsa: She was doing a ridiculous
amount of exercise.

Annie Delores: So I was thinking
maybe it might be worthwhile to

mention her health background at
this point.

Elsa: So Kristine has been like
I have been vegetarian. I became

vegetarian earlier than her.

Annie Delores: Like two months
is no big deal.

Elsa: Well, it was two years. It
was actually three years. She

she became vegetarian at the age
of 16.

Annie Delores: Oh, wow.

Elsa: So so at that point then,
she had been vegetarian for,

what, 30, 33 years in 2016, she
had been diagnosed as type two

diabetic. And after a month,
well, I guess during the the

month that she was on insulin,
she became diet controlled. She

did not want to do medicine. You
know, it's like one of those

things where when you look back
at pictures, then you can see it.

But when you're living with
somebody and I mean, this was

COVID, so I was seeing her every
day, all day,

and it seemed completely normal.

Annie Delores: It's 15,000 steps
a day. They lose weight like I

would make cause effect with
that. So I totally understand,

you know, that you want assume
something, but you're right.

When you see each other all the
time, you're not going to notice

what might be more noticeable to
other people or in photos.

Elsa: Yes. So now looking back,
it's like, oh, wow, You know,

she really had, you know, been
skinny.

Elsa: So after those iron pills,
the next step was to check for

blood in the stool. And they did
find blood in the stool,

microscopic. Something that she
had told the primary care was

that she felt a bump like
physically on her stomach. And

she had she had not told me that
until this started to become

more obvious that something was
wrong. It turns out that that

bump was part of her liver tumor.
I don't want to spoil anything,

but yeah, it was huge. I mean,
it was a huge tumor, the next

step was to do a CT scan and we
went to where we normally get

our mammograms. And did the scan.
There was what's considered now

distant lymph nodes. But

Elsa: the next step was to do
both a colonoscopy and an

endoscopy, and the first
available date was on her

birthday. So so we did that.
They said that they do the

colonoscopy first, and if that
was clean, then they would do

the endoscopies, but not to do
both, You know, if it wasn't

necessary,

Annie Delores: You were in the
waiting room and you found out

more.

Where do they bring you back to?
an office?

Elsa: It was to like, No, it was
she was on the cot still or the

gurney. Okay. You know, still
kind of, you know, waking up.

And they said that there was a
that there was a tumor in her

sigmoid part of her colon. And,
you know, they they they stopped.

Annie Delores: How much
information did they give you at

that point? Just that we're not
doing surgery. It's metastatic

colorectal cancer with a liver
met. Is that sort of where you

sort of knew you were at and the
lymph nodes, the.

Elsa: Well, they didn't
necessarily connect anything

together, but they did say that
there is a cancerous likely

cancer. So I don't even know if
they could say for sure. But he

knew

Annie Delores: He had to send it.
to pathology.

Elsa: But yeah, to pathology.
Yeah, but he knew that it looked

at least cancerous.

Elsa: When somebody has cancer,
you kind of assume that you just

cut it out. When you see it, yo
cut it out that if you ask a

doctor to cut it out, that
they'll cut it out. And it's

just not that simple. I've had
to go on a huge learning journey

during this process and in the
beginning it was like, okay,

well, you came across cancer,
you got to see the cancer. Let's

get rid of the cancer.

Annie Delores: Look, when I
found out they they didn't take

stage four primary cancers out
or usually not until later. I

was like, What? What is that
about? But then when you realize

it's going to take you weeks to
recover and they want to start

chemo right away, if that's the
next step for stage four, they

want to control everything in
all the metastatic settings and

all the outside the colon
settings like that's that's the

primary focus.

Elsa: The tech had felt so badly
that she was being notified

about, you know, this cancer on
her birthday that that he bought

a you know, from the from the
vending machine bought a of Rice

Krispies treat and wrote in
Sharpie like happy birthday I'm

so sorry. I'm so sorry that
you're having a bad day. But,

you know, it was very sweet.

Annie Delores: Oh, that was so
sweet and, like, ridiculous too

and lovely.

Elsa: The thought of her or
anybody our age or younger

having colon cancer, I mean, it
just seemed impossible. I had an

impression that it was older
people, an impression that it

was more older guys and it was
never, never on the radar at all.

Annie Delores: Yeah, I think
you're so on the money. I think

people do think of it as an
older man's disease over 60,

over 70. And, you know, they say
that the biggest risk for cancer

is age just getting older. And
now it's like it used to be that

you'd had to be over 50 to be
more at risk. And now it's

getting earlier for colorectal
cancer, where just being 45 is

enough of a risk factor that
it's like, okay, I get checked

out that the polyps removed, you
know, sure of yourself. And I

mean, she was already taking
care of herself. You know,

trying to get an annual physical
is a great step for anybody.

Elsa: After I recorded with
Annie, I actually had to go back

and look at the calendar because
between the colonoscopy and the

oncologist appointment, it could
have been a month. It could have

been a day. I it was such a blur.

So it turns out that it was the
next week that we met with her

oncologist.

Elsa: When we met, I believe,
with her oncologist the first

time. Well, everything was

everything in the beginning
anyway, is overwhelming.

Yeah. And it's it's hard
sometimes to remember that exact

feeling because time has gone
past and other things seem

overwhelming. But that was the
most. And when I hear from new

care partners, when they when
they post on on message boards,

I always get reminded of how
what it's like being at that in

the beginning time and not
knowing what's what's going on.

Annie Delores: Or what's
important.

Elsa: Yes. Or anything. I mean,
I mean, I went in I mean, we

both went in not knowing we knew
what it was, but he was mostly

concerned not about the giant
liver tumor, but about her, her

distant lymph nodes. And I
didn't understand why. But

during this first meeting, tha
was what he was the most

concerned about. He talked about
what plan he had he wrote it

down I was taking notes, but I
couldn't understand what he was

saying because he was using
acronyms. Even when he wasn't

using acronyms, I didn't
understand how to spell words

like Oxaliplatin and Irinotecan
and.

Annie Delores: Really, you can't
spell them now. I think that's

bizarre.

Hats off to you for being able
to pronounce them.

Elsa: Well, it was. It was We
got a lot thrown at us.

Elsa: And he explained that
there is some recent studies

that showed that because she was
young and because she was

healthy, other than the cancer
that he thought that should be

aggressive to try to get her to
surgery, that his plan was to

put kind of all the chemo's
together and do the most

aggressive attack on the cancer.

Annie Delores: So like a triplet.

Elsa: Exactly. And, you know,
and now now that I know better,

it was a triplet. It was
FOLFOXIRI. So 5FU plus

Oxaliplatin plus Irinotecan
typically 5FU is used with

either Oxaliplatin or Irinotecan.
In this case, it's like putting

it all together and then adding
Avastin to it.

Annie Delores: I just want to I
want to ask one question. How

like a spoiler, how did she do
on the chemo to cheat, tolerate

it pretty well.

Elsa: She tolerated it like a
champ. I mean, she had fatigue

and that was it. This was a lot
of chemo. She was she was lucky.

She also follows instructions
like nobody's business. She is

the ideal patient

for so many reasons, but she
listens to everything that you

know that any medical
professional says and follows it

to the tee.

Annie Delores: So and the other
thing I wanted to bring up is

that one of the things that is
available is the NCCN, like the

National Comprehensive Cancer
Network, something like that.

And they have actually
guidelines for rectal cancer and

for colon cancer, Like I try to
like promote it and just say

if you print it out and you can
use it to write notes, you can

see that word oxaliplatin
written out or you can, you know,

you can have that kind of cheat
sheet to figure it out because,

you know, understanding what
it's what's being said to have a

little head start or to be able
to like, look it up on a piece

of paper. It's a it's a lot to
take in and it's a lot to write

notes that aren't scribbles that
are indecipherable. And it's

really well written.

Elsa: I found that afterwards,
and I found it incredibly

helpful. But of course it was
afterwards and it helped explain

for me, it was like the the
Cliff notes of yes, what I wish

I had had beforehand. But I by
ended up with after and yeah

that's that is a great idea to
have it with you.

Annie Delores: You know having a
notepad is one thing, but having

like a cheat sheet of these are
probably the things that are

going to come up the genetic
testing or the mutational

testing or like all the
treatment things. I did want to

go back, you know,

Annie Delores: go a little bit
further with the meeting with

the oncologist and like in terms
of understanding it or like

having too much information, is

Elsa: this had come up to the
tumor board. The tumor board is

basically where oncologists and
radiologists and surgeons and,

you know, a lot of different
medical professionals in the

cancer center go through
patients cases. And they come up

with plans. And that way it is
not just one person's point of

view, it's getting the point of
view of multiple people and

multiple departments. And it is
crucial!

Elsa: So her case had come up to
the tumor board and he had roped

in a liver surgeon and a colon
surgeon and they were already

kind of part of the team. And he
had a plan that he was kind of

working on with them. But for
that plan to happen, the chemo

had to happen first and the
chemo had to work. And and it

needed at least ideally like a
50 percent reduction, primarily

the liver tumor, because that
her her big liver tumor was over

half of her liver.

Annie Delores: They thought it
was limited to two mets and that,

you know, if they could get to
shrinkage, then she could be

eligible for surgery. And so
that's why they had that as a

goal. Does that sound right?

Elsa: Yes. The remaining part of
her liver was healthy and the

liver surgeon believed that he
could remove the cancer from her

liver.

Annie Delores: I guess the
takeaway is that it's. Like some

people at first, they might not
even think they have a chance to

get to liver surgery. But if you
have an exceptional response to

chemo, you know, then you can go
to an expert liver surgeon and

see if they think it's surgical.
It's it is like you said, it's a

complicated disease and it's
anything can happen. And they're

trying to prepare for anything
can happen. And part of it is

preparing for something good can
happen.

I think

Elsa: I mean, he

Elsa: was. Also very realistic
with her. And with us and said

that there was a, you know, the
chance of her getting to liver

surgery was 20%.

Annie Delores: Oh, wow. Wow.
That that's amazing that she

made it. 20%. Wow.

Elsa: Yeah. Yeah. There's a lot
of statistics with this disease

that are mind boggling

Annie Delores: And some of them
you never forget.

Elsa: That was one that I will
never forget

Annie Delores: And you heard
that the first day. The first

appointment with the oncologist.

Elsa: Yes. Now, what I did block
out

was when he asked if she wanted
survival statistics and she said

yes. And there's a lot of crying

from that from those numbers
that were said.

They are

humbling, to say the least, and
hopefully continuing to, you

know, get better.

But yeah, that 20% became the
hurdle to get past. That was THE

goal. And that's that was that
was really like the only goal

was get to liver surgery. Then
we'll see what's next. But we

have to get the liver surgery
because it was very clear that

if she didn't get to liver
surgery, that this was.

This was going to be a...

Annie Delores: This was not
going to end the way, you wanted

it to.

Elsa: No. No.

Annie Delores: So Kristine asked
for that to be told.

Elsa: He asked if she wanted to
hear it. And she said yes. I

said no.

Annie Delores: Oh,

Elsa: yes. Oh, because he wasn't
asking me. But I still gave my

opinion. Because I didn't want
to know.

Reading them and then hearing a
doctor tell you are two

different things. But also
reading them was also, you know,

horrible.

Annie Delores: And

Annie Delores: is there anything
else about getting diagnosed

that you want that we haven't
talked about or.

Or that why you feel like a
podcast about getting diagnosed

is important?

Elsa: Everybody has a story.
Maybe not exactly like this,

because it's Kristine's story.
Life changes.

So.

Incredibly much. You know, at
this point, every changed.

Everything that I ever thought
was important all of a sudden

became it. It was no longer
relevant. The only thing that

was important was for her to be
in that 20% category, to get to

that liver surgery. That was the
only thing that mattered.

Outro: Thank you for joining me
for this episode of Care

Partners Compass: Navigating CRC.
Please listen up for the next

episode, which will come out
next week. If you subscribe to

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exactly when the next episode
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transcript of Care Partners
Compass: Navigating CRC and

additional links can be found on
our website

Carepartnerscompass.

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