March 1, 2024 • 21 mins
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
Mark as Played
Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Elsa (00:00):
Welcome to Care Partners Compass Navigating CRC. My name
is Elsa Lankford. I am the carepartner to my incredible wife,
Kristine, who has stage fourcolorectal cancer.
(00:43):
In today's episode and in a few of the episodes, I am
joined by my friend AnnieDolores. She's been a patient
advocate for CRC for almostseven years. She's very involved
in colorectal cancer and KRASsocial media groups and
communities. She selflesslyshares her wisdom and research
(01:04):
at conferences and online.
It kind of started back in
May 2021. Peak COVID. Era. So,yeah, So she went to her primary
(01:28):
care for her annual physical andin the in the bloodwork, her
iron was low.
Annie Delores (01:36):
She was 45 in 2021.
Elsa (01:38):
I think she was 48.
So she was put on iron pills fora month and had the bloodwork
checked again and her iron waseven lower.
Annie Delores (01:57):
Wow.
Elsa (01:57):
So yeah, so there's obviously something wrong,
but it didn't seem like, youknow, a big deal.
Annie Delores (02:06):
Did she? So she was anemic. Did she feel tired?
Elsa (02:11):
She does a lot of exercise,
a lot of steps, a ridiculousamount of steps for normal
humans.
So it seemed.
Annie Delores (02:28):
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 stepsa day you're.
Elsa (02:38):
On, right?
Annie Delores (02:38):
It's clearly. Yes.
Elsa (02:41):
Yes. 15,000 steps a day as your minimum.
Annie Delores (02:45):
Oh, my gosh. Wow.
Elsa (02:46):
Not normal, but she likes it In. retrospect. She was
losing weight.
Annie Delores (02:52):
Oh, interesting.
Elsa (02:53):
She was doing a ridiculous amount of exercise.
Annie Delores (02:57):
So I was thinking maybe it might be worthwhile to
mention her health background atthis point.
Elsa (03:03):
So Kristine has been like I have been vegetarian. I became
vegetarian earlier than her.
Annie Delores (03:11):
Like two months is no big deal.
Elsa (03:14):
Well, it was two years. It was actually three years. She
she became vegetarian at the ageof 16.
Annie Delores (03:22):
Oh, wow.
Elsa (03:23):
So so at that point then, she had been vegetarian for,
what, 30, 33 years in 2016, shehad been diagnosed as type two
diabetic. And after a month,well, I guess during the the
(03:45):
month that she was on insulin,she became diet controlled. She
did not want to do medicine. Youknow, it's like one of those
things where when you look backat pictures, then you can see it.
But when you're living withsomebody and I mean, this was
COVID, so I was seeing her everyday, all day,
(04:08):
and it seemed completely normal.
Annie Delores (04:13):
It's 15,000 steps a day. They lose weight like I
would make cause effect withthat. So I totally understand,
you know, that you want assumesomething, but you're right.
When you see each other all thetime, you're not going to notice
what might be more noticeable toother people or in photos.
Elsa (04:33):
Yes. So now looking back, it's like, oh, wow, You know,
she really had, you know, beenskinny.
So after those iron pills, the next step was to check for
blood in the stool. And they didfind blood in the stool,
microscopic. Something that shehad told the primary care was
(04:55):
that she felt a bump likephysically on her stomach. And
she had she had not told me thatuntil this started to become
more obvious that something waswrong. It turns out that that
bump was part of her liver tumor.I don't want to spoil anything,
(05:16):
but yeah, it was huge. I mean,it was a huge tumor, the next
step was to do a CT scan and wewent to where we normally get
our mammograms. And did the scan.There was what's considered now
distant lymph nodes. But
(05:37):
the next step was to do both a colonoscopy and an
endoscopy, and the firstavailable date was on her
birthday. So so we did that.They said that they do the
colonoscopy first, and if thatwas clean, then they would do
the endoscopies, but not to doboth, You know, if it wasn't
necessary,
Annie Delores (05:57):
You were in the waiting room and you found out
more.
Where do they bring you back to?an office?
Elsa (06:05):
It was to like, No, it was she was on the cot still or the
gurney. Okay. You know, stillkind of, you know, waking up.
And they said that there was athat there was a tumor in her
sigmoid part of her colon. And,you know, they they they stopped.
Annie Delores (06:27):
How much information did they give you at
that point? Just that we're notdoing surgery. It's metastatic
colorectal cancer with a livermet. Is that sort of where you
sort of knew you were at and thelymph nodes, the.
Elsa (06:39):
Well, they didn't necessarily connect anything
together, but they did say thatthere is a cancerous likely
cancer. So I don't even know ifthey could say for sure. But he
knew
Annie Delores (06:51):
He had to send it. to pathology.
Elsa (06:53):
But yeah, to pathology. Yeah, but he knew that it looked
at least cancerous.
When somebody has cancer, you kind of assume that you just
cut it out. When you see it, yocut it out that if you ask a
doctor to cut it out, thatthey'll cut it out. And it's
(07:15):
just not that simple. I've hadto go on a huge learning journey
during this process and in thebeginning it was like, okay,
well, you came across cancer,you got to see the cancer. Let's
get rid of the cancer.
Annie Delores (07:31):
Look, when I found out they they didn't take
stage four primary cancers outor usually not until later. I
was like, What? What is thatabout? But then when you realize
it's going to take you weeks torecover and they want to start
chemo right away, if that's thenext step for stage four, they
want to control everything inall the metastatic settings and
(07:53):
all the outside the colonsettings like that's that's the
primary focus.
Elsa (07:59):
The tech had felt so badly that she was being notified
about, you know, this cancer onher birthday that that he bought
a you know, from the from thevending machine bought a of Rice
Krispies treat and wrote inSharpie like happy birthday I'm
(08:23):
so sorry. I'm so sorry thatyou're having a bad day. But,
you know, it was very sweet.
Annie Delores (08:28):
Oh, that was so sweet and, like, ridiculous too
and lovely.
Elsa (08:36):
The thought of her or anybody our age or younger
having colon cancer, I mean, itjust seemed impossible. I had an
impression that it was olderpeople, an impression that it
was more older guys and it wasnever, never on the radar at all.
Annie Delores (09:01):
Yeah, I think you're so on the money. I think
people do think of it as anolder man's disease over 60,
over 70. And, you know, they saythat the biggest risk for cancer
is age just getting older. Andnow it's like it used to be that
you'd had to be over 50 to bemore at risk. And now it's
(09:23):
getting earlier for colorectalcancer, where just being 45 is
enough of a risk factor thatit's like, okay, I get checked
out that the polyps removed, youknow, sure of yourself. And I
mean, she was already takingcare of herself. You know,
trying to get an annual physicalis a great step for anybody.
Elsa (09:44):
After I recorded with Annie, I actually had to go back
and look at the calendar becausebetween the colonoscopy and the
oncologist appointment, it couldhave been a month. It could have
been a day. I it was such a blur.
(10:07):
So it turns out that it was thenext week that we met with her
oncologist.
When we met, I believe, with her oncologist the first
time. Well, everything was
everything in the beginninganyway, is overwhelming.
Yeah. And it's it's hardsometimes to remember that exact
(10:28):
feeling because time has gonepast and other things seem
overwhelming. But that was themost. And when I hear from new
care partners, when they whenthey post on on message boards,
I always get reminded of howwhat it's like being at that in
(10:52):
the beginning time and notknowing what's what's going on.
Annie Delores (10:56):
Or what's important.
Elsa (10:57):
Yes. Or anything. I mean, I mean, I went in I mean, we
both went in not knowing we knewwhat it was, but he was mostly
concerned not about the giantliver tumor, but about her, her
distant lymph nodes. And Ididn't understand why. But
(11:22):
during this first meeting, thawas what he was the most
concerned about. He talked aboutwhat plan he had he wrote it
down I was taking notes, but Icouldn't understand what he was
saying because he was usingacronyms. Even when he wasn't
using acronyms, I didn'tunderstand how to spell words
(11:44):
like Oxaliplatin and Irinotecanand.
Annie Delores (11:50):
Really, you can't spell them now. I think that's
bizarre.
Hats off to you for being ableto pronounce them.
Elsa (12:00):
Well, it was. It was We got a lot thrown at us.
And he explained that there is some recent studies
that showed that because she wasyoung and because she was
healthy, other than the cancerthat he thought that should be
aggressive to try to get her tosurgery, that his plan was to
(12:21):
put kind of all the chemo'stogether and do the most
aggressive attack on the cancer.
Annie Delores (12:29):
So like a triplet.
Elsa (12:30):
Exactly. And, you know, and now now that I know better,
it was a triplet. It wasFOLFOXIRI. So 5FU plus
Oxaliplatin plus Irinotecantypically 5FU is used with
either Oxaliplatin or Irinotecan.In this case, it's like putting
it all together and then addingAvastin to it.
Annie Delores (12:52):
I just want to I want to ask one question. How
like a spoiler, how did she doon the chemo to cheat, tolerate
it pretty well.
Elsa (12:59):
She tolerated it like a champ. I mean, she had fatigue
and that was it. This was a lotof chemo. She was she was lucky.
She also follows instructionslike nobody's business. She is
(13:20):
the ideal patient
for so many reasons, but shelistens to everything that you
know that any medicalprofessional says and follows it
to the tee.
Annie Delores (13:33):
So and the other thing I wanted to bring up is
that one of the things that isavailable is the NCCN, like the
National Comprehensive CancerNetwork, something like that.
And they have actuallyguidelines for rectal cancer and
for colon cancer, Like I try tolike promote it and just say
(13:56):
if you print it out and you canuse it to write notes, you can
see that word oxaliplatinwritten out or you can, you know,
you can have that kind of cheatsheet to figure it out because,
you know, understanding whatit's what's being said to have a
little head start or to be ableto like, look it up on a piece
of paper. It's a it's a lot totake in and it's a lot to write
(14:20):
notes that aren't scribbles thatare indecipherable. And it's
really well written.
Elsa (14:26):
I found that afterwards, and I found it incredibly
helpful. But of course it wasafterwards and it helped explain
for me, it was like the theCliff notes of yes, what I wish
I had had beforehand. But I byended up with after and yeah
that's that is a great idea tohave it with you.
Annie Delores (14:48):
You know having a notepad is one thing, but having
like a cheat sheet of these areprobably the things that are
going to come up the genetictesting or the mutational
testing or like all thetreatment things. I did want to
go back, you know,
go a little bit further with the meeting with
the oncologist and like in termsof understanding it or like
(15:08):
having too much information, is
Elsa (15:11):
this had come up to the tumor board. The tumor board is
basically where oncologists andradiologists and surgeons and,
you know, a lot of differentmedical professionals in the
cancer center go throughpatients cases. And they come up
with plans. And that way it isnot just one person's point of
(15:34):
view, it's getting the point ofview of multiple people and
multiple departments. And it iscrucial!
So her case had come up to the tumor board and he had roped
in a liver surgeon and a colonsurgeon and they were already
kind of part of the team. And hehad a plan that he was kind of
(15:56):
working on with them. But forthat plan to happen, the chemo
had to happen first and thechemo had to work. And and it
needed at least ideally like a50 percent reduction, primarily
the liver tumor, because thather her big liver tumor was over
(16:18):
half of her liver.
Annie Delores (16:21):
They thought it was limited to two mets and that,
you know, if they could get toshrinkage, then she could be
eligible for surgery. And sothat's why they had that as a
goal. Does that sound right?
Elsa (16:32):
Yes. The remaining part of her liver was healthy and the
liver surgeon believed that hecould remove the cancer from her
liver.
Annie Delores (16:41):
I guess the takeaway is that it's. Like some
people at first, they might noteven think they have a chance to
get to liver surgery. But if youhave an exceptional response to
chemo, you know, then you can goto 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'sanything can happen. And they're
(17:06):
trying to prepare for anythingcan happen. And part of it is
preparing for something good canhappen.
I think
Elsa (17:15):
I mean, he
was. Also very realistic with her. And with us and said
that there was a, you know, thechance of her getting to liver
surgery was 20%.
Annie Delores (17:25):
Oh, wow. Wow. That that's amazing that she
made it. 20%. Wow.
Elsa (17:33):
Yeah. Yeah. There's a lot of statistics with this disease
that are mind boggling
Annie Delores (17:41):
And some of them you never forget.
Elsa (17:43):
That was one that I will never forget
Annie Delores (17:48):
And you heard that the first day. The first
appointment with the oncologist.
Elsa (17:52):
Yes. Now, what I did block out
was when he asked if she wantedsurvival statistics and she said
yes. And there's a lot of crying
(18:14):
from that from those numbersthat were said.
They are
humbling, to say the least, andhopefully continuing to, you
know, get better.
But yeah, that 20% became thehurdle to get past. That was THE
(18:37):
goal. And that's that was thatwas really like the only goal
was get to liver surgery. Thenwe'll see what's next. But we
have to get the liver surgerybecause it was very clear that
if she didn't get to liversurgery, that this was.
(19:00):
This was going to be a...
Annie Delores (19:05):
This was not going to end the way, you wanted
it to.
Elsa (19:07):
No. No.
Annie Delores (19:09):
So Kristine asked for that to be told.
Elsa (19:12):
He asked if she wanted to hear it. And she said yes. I
said no.
Annie Delores (19:18):
Oh,
Elsa (19:19):
yes. Oh, because he wasn't asking me. But I still gave my
opinion. Because I didn't wantto know.
Reading them and then hearing adoctor tell you are two
different things. But alsoreading them was also, you know,
horrible.
Annie Delores (19:38):
And
is there anything else about getting diagnosed
that you want that we haven'ttalked about or.
Or that why you feel like apodcast about getting diagnosed
is important?
Elsa (19:55):
Everybody has a story. Maybe not exactly like this,
because it's Kristine's story.Life changes.
So.
Incredibly much. You know, atthis point, every changed.
Everything that I ever thoughtwas important all of a sudden
(20:16):
became it. It was no longerrelevant. The only thing that
was important was for her to bein that 20% category, to get to
that liver surgery. That was theonly thing that mattered.
Outro (20:32):
Thank you for joining me for this episode of Care
Partners Compass (20:35):
Navigating CRC. Please listen up for the next
episode, which will come outnext week. If you subscribe to
the podcast on your favoritepodcast app, you will know
exactly when the next episodecomes out. I hope that you'll
share the podcast with yourfriends and family. The
(20:55):
transcript of Care PartnersCompass: Navigating CRC and
additional links can be found onour website
Carepartnerscompass.
transistor.
Welcome to Care Partners Compass Navigating CRC. My name
is Elsa Lankford. I am the carepartner to my incredible wife,
Kristine, who has stage fourcolorectal cancer.
(00:43):
In today's episode and in a few of the episodes, I am
joined by my friend AnnieDolores. She's been a patient
advocate for CRC for almostseven years. She's very involved
in colorectal cancer and KRASsocial media groups and
communities. She selflesslyshares her wisdom and research
(01:04):
at conferences and online.
It kind of started back in
May 2021. Peak COVID. Era. So,yeah, So she went to her primary
(01:28):
care for her annual physical andin the in the bloodwork, her
iron was low.
Annie Delores (01:36):
She was 45 in 2021.
Elsa (01:38):
I think she was 48.
So she was put on iron pills fora month and had the bloodwork
checked again and her iron waseven lower.
Annie Delores (01:57):
Wow.
Elsa (01:57):
So yeah, so there's obviously something wrong,
but it didn't seem like, youknow, a big deal.
Annie Delores (02:06):
Did she? So she was anemic. Did she feel tired?
Elsa (02:11):
She does a lot of exercise,
a lot of steps, a ridiculousamount of steps for normal
humans.
So it seemed.
Annie Delores (02:28):
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 stepsa day you're.
Elsa (02:38):
On, right?
Annie Delores (02:38):
It's clearly. Yes.
Elsa (02:41):
Yes. 15,000 steps a day as your minimum.
Annie Delores (02:45):
Oh, my gosh. Wow.
Elsa (02:46):
Not normal, but she likes it In. retrospect. She was
losing weight.
Annie Delores (02:52):
Oh, interesting.
Elsa (02:53):
She was doing a ridiculous amount of exercise.
Annie Delores (02:57):
So I was thinking maybe it might be worthwhile to
mention her health background atthis point.
Elsa (03:03):
So Kristine has been like I have been vegetarian. I became
vegetarian earlier than her.
Annie Delores (03:11):
Like two months is no big deal.
Elsa (03:14):
Well, it was two years. It was actually three years. She
she became vegetarian at the ageof 16.
Annie Delores (03:22):
Oh, wow.
Elsa (03:23):
So so at that point then, she had been vegetarian for,
what, 30, 33 years in 2016, shehad been diagnosed as type two
diabetic. And after a month,well, I guess during the the
(03:45):
month that she was on insulin,she became diet controlled. She
did not want to do medicine. Youknow, it's like one of those
things where when you look backat pictures, then you can see it.
But when you're living withsomebody and I mean, this was
COVID, so I was seeing her everyday, all day,
(04:08):
and it seemed completely normal.
Annie Delores (04:13):
It's 15,000 steps a day. They lose weight like I
would make cause effect withthat. So I totally understand,
you know, that you want assumesomething, but you're right.
When you see each other all thetime, you're not going to notice
what might be more noticeable toother people or in photos.
Elsa (04:33):
Yes. So now looking back, it's like, oh, wow, You know,
she really had, you know, beenskinny.
So after those iron pills, the next step was to check for
blood in the stool. And they didfind blood in the stool,
microscopic. Something that shehad told the primary care was
(04:55):
that she felt a bump likephysically on her stomach. And
she had she had not told me thatuntil this started to become
more obvious that something waswrong. It turns out that that
bump was part of her liver tumor.I don't want to spoil anything,
(05:16):
but yeah, it was huge. I mean,it was a huge tumor, the next
step was to do a CT scan and wewent to where we normally get
our mammograms. And did the scan.There was what's considered now
distant lymph nodes. But
(05:37):
the next step was to do both a colonoscopy and an
endoscopy, and the firstavailable date was on her
birthday. So so we did that.They said that they do the
colonoscopy first, and if thatwas clean, then they would do
the endoscopies, but not to doboth, You know, if it wasn't
necessary,
Annie Delores (05:57):
You were in the waiting room and you found out
more.
Where do they bring you back to?an office?
Elsa (06:05):
It was to like, No, it was she was on the cot still or the
gurney. Okay. You know, stillkind of, you know, waking up.
And they said that there was athat there was a tumor in her
sigmoid part of her colon. And,you know, they they they stopped.
Annie Delores (06:27):
How much information did they give you at
that point? Just that we're notdoing surgery. It's metastatic
colorectal cancer with a livermet. Is that sort of where you
sort of knew you were at and thelymph nodes, the.
Elsa (06:39):
Well, they didn't necessarily connect anything
together, but they did say thatthere is a cancerous likely
cancer. So I don't even know ifthey could say for sure. But he
knew
Annie Delores (06:51):
He had to send it. to pathology.
Elsa (06:53):
But yeah, to pathology. Yeah, but he knew that it looked
at least cancerous.
When somebody has cancer, you kind of assume that you just
cut it out. When you see it, yocut it out that if you ask a
doctor to cut it out, thatthey'll cut it out. And it's
(07:15):
just not that simple. I've hadto go on a huge learning journey
during this process and in thebeginning it was like, okay,
well, you came across cancer,you got to see the cancer. Let's
get rid of the cancer.
Annie Delores (07:31):
Look, when I found out they they didn't take
stage four primary cancers outor usually not until later. I
was like, What? What is thatabout? But then when you realize
it's going to take you weeks torecover and they want to start
chemo right away, if that's thenext step for stage four, they
want to control everything inall the metastatic settings and
(07:53):
all the outside the colonsettings like that's that's the
primary focus.
Elsa (07:59):
The tech had felt so badly that she was being notified
about, you know, this cancer onher birthday that that he bought
a you know, from the from thevending machine bought a of Rice
Krispies treat and wrote inSharpie like happy birthday I'm
(08:23):
so sorry. I'm so sorry thatyou're having a bad day. But,
you know, it was very sweet.
Annie Delores (08:28):
Oh, that was so sweet and, like, ridiculous too
and lovely.
Elsa (08:36):
The thought of her or anybody our age or younger
having colon cancer, I mean, itjust seemed impossible. I had an
impression that it was olderpeople, an impression that it
was more older guys and it wasnever, never on the radar at all.
Annie Delores (09:01):
Yeah, I think you're so on the money. I think
people do think of it as anolder man's disease over 60,
over 70. And, you know, they saythat the biggest risk for cancer
is age just getting older. Andnow it's like it used to be that
you'd had to be over 50 to bemore at risk. And now it's
(09:23):
getting earlier for colorectalcancer, where just being 45 is
enough of a risk factor thatit's like, okay, I get checked
out that the polyps removed, youknow, sure of yourself. And I
mean, she was already takingcare of herself. You know,
trying to get an annual physicalis a great step for anybody.
Elsa (09:44):
After I recorded with Annie, I actually had to go back
and look at the calendar becausebetween the colonoscopy and the
oncologist appointment, it couldhave been a month. It could have
been a day. I it was such a blur.
(10:07):
So it turns out that it was thenext week that we met with her
oncologist.
When we met, I believe, with her oncologist the first
time. Well, everything was
everything in the beginninganyway, is overwhelming.
Yeah. And it's it's hardsometimes to remember that exact
(10:28):
feeling because time has gonepast and other things seem
overwhelming. But that was themost. And when I hear from new
care partners, when they whenthey post on on message boards,
I always get reminded of howwhat it's like being at that in
(10:52):
the beginning time and notknowing what's what's going on.
Annie Delores (10:56):
Or what's important.
Elsa (10:57):
Yes. Or anything. I mean, I mean, I went in I mean, we
both went in not knowing we knewwhat it was, but he was mostly
concerned not about the giantliver tumor, but about her, her
distant lymph nodes. And Ididn't understand why. But
(11:22):
during this first meeting, thawas what he was the most
concerned about. He talked aboutwhat plan he had he wrote it
down I was taking notes, but Icouldn't understand what he was
saying because he was usingacronyms. Even when he wasn't
using acronyms, I didn'tunderstand how to spell words
(11:44):
like Oxaliplatin and Irinotecanand.
Annie Delores (11:50):
Really, you can't spell them now. I think that's
bizarre.
Hats off to you for being ableto pronounce them.
Elsa (12:00):
Well, it was. It was We got a lot thrown at us.
And he explained that there is some recent studies
that showed that because she wasyoung and because she was
healthy, other than the cancerthat he thought that should be
aggressive to try to get her tosurgery, that his plan was to
(12:21):
put kind of all the chemo'stogether and do the most
aggressive attack on the cancer.
Annie Delores (12:29):
So like a triplet.
Elsa (12:30):
Exactly. And, you know, and now now that I know better,
it was a triplet. It wasFOLFOXIRI. So 5FU plus
Oxaliplatin plus Irinotecantypically 5FU is used with
either Oxaliplatin or Irinotecan.In this case, it's like putting
it all together and then addingAvastin to it.
Annie Delores (12:52):
I just want to I want to ask one question. How
like a spoiler, how did she doon the chemo to cheat, tolerate
it pretty well.
Elsa (12:59):
She tolerated it like a champ. I mean, she had fatigue
and that was it. This was a lotof chemo. She was she was lucky.
She also follows instructionslike nobody's business. She is
(13:20):
the ideal patient
for so many reasons, but shelistens to everything that you
know that any medicalprofessional says and follows it
to the tee.
Annie Delores (13:33):
So and the other thing I wanted to bring up is
that one of the things that isavailable is the NCCN, like the
National Comprehensive CancerNetwork, something like that.
And they have actuallyguidelines for rectal cancer and
for colon cancer, Like I try tolike promote it and just say
(13:56):
if you print it out and you canuse it to write notes, you can
see that word oxaliplatinwritten out or you can, you know,
you can have that kind of cheatsheet to figure it out because,
you know, understanding whatit's what's being said to have a
little head start or to be ableto like, look it up on a piece
of paper. It's a it's a lot totake in and it's a lot to write
(14:20):
notes that aren't scribbles thatare indecipherable. And it's
really well written.
Elsa (14:26):
I found that afterwards, and I found it incredibly
helpful. But of course it wasafterwards and it helped explain
for me, it was like the theCliff notes of yes, what I wish
I had had beforehand. But I byended up with after and yeah
that's that is a great idea tohave it with you.
Annie Delores (14:48):
You know having a notepad is one thing, but having
like a cheat sheet of these areprobably the things that are
going to come up the genetictesting or the mutational
testing or like all thetreatment things. I did want to
go back, you know,
go a little bit further with the meeting with
the oncologist and like in termsof understanding it or like
(15:08):
having too much information, is
Elsa (15:11):
this had come up to the tumor board. The tumor board is
basically where oncologists andradiologists and surgeons and,
you know, a lot of differentmedical professionals in the
cancer center go throughpatients cases. And they come up
with plans. And that way it isnot just one person's point of
(15:34):
view, it's getting the point ofview of multiple people and
multiple departments. And it iscrucial!
So her case had come up to the tumor board and he had roped
in a liver surgeon and a colonsurgeon and they were already
kind of part of the team. And hehad a plan that he was kind of
(15:56):
working on with them. But forthat plan to happen, the chemo
had to happen first and thechemo had to work. And and it
needed at least ideally like a50 percent reduction, primarily
the liver tumor, because thather her big liver tumor was over
(16:18):
half of her liver.
Annie Delores (16:21):
They thought it was limited to two mets and that,
you know, if they could get toshrinkage, then she could be
eligible for surgery. And sothat's why they had that as a
goal. Does that sound right?
Elsa (16:32):
Yes. The remaining part of her liver was healthy and the
liver surgeon believed that hecould remove the cancer from her
liver.
Annie Delores (16:41):
I guess the takeaway is that it's. Like some
people at first, they might noteven think they have a chance to
get to liver surgery. But if youhave an exceptional response to
chemo, you know, then you can goto 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'sanything can happen. And they're
(17:06):
trying to prepare for anythingcan happen. And part of it is
preparing for something good canhappen.
I think
Elsa (17:15):
I mean, he
was. Also very realistic with her. And with us and said
that there was a, you know, thechance of her getting to liver
surgery was 20%.
Annie Delores (17:25):
Oh, wow. Wow. That that's amazing that she
made it. 20%. Wow.
Elsa (17:33):
Yeah. Yeah. There's a lot of statistics with this disease
that are mind boggling
Annie Delores (17:41):
And some of them you never forget.
Elsa (17:43):
That was one that I will never forget
Annie Delores (17:48):
And you heard that the first day. The first
appointment with the oncologist.
Elsa (17:52):
Yes. Now, what I did block out
was when he asked if she wantedsurvival statistics and she said
yes. And there's a lot of crying
(18:14):
from that from those numbersthat were said.
They are
humbling, to say the least, andhopefully continuing to, you
know, get better.
But yeah, that 20% became thehurdle to get past. That was THE
(18:37):
goal. And that's that was thatwas really like the only goal
was get to liver surgery. Thenwe'll see what's next. But we
have to get the liver surgerybecause it was very clear that
if she didn't get to liversurgery, that this was.
(19:00):
This was going to be a...
Annie Delores (19:05):
This was not going to end the way, you wanted
it to.
Elsa (19:07):
No. No.
Annie Delores (19:09):
So Kristine asked for that to be told.
Elsa (19:12):
He asked if she wanted to hear it. And she said yes. I
said no.
Annie Delores (19:18):
Oh,
Elsa (19:19):
yes. Oh, because he wasn't asking me. But I still gave my
opinion. Because I didn't wantto know.
Reading them and then hearing adoctor tell you are two
different things. But alsoreading them was also, you know,
horrible.
Annie Delores (19:38):
And
is there anything else about getting diagnosed
that you want that we haven'ttalked about or.
Or that why you feel like apodcast about getting diagnosed
is important?
Elsa (19:55):
Everybody has a story. Maybe not exactly like this,
because it's Kristine's story.Life changes.
So.
Incredibly much. You know, atthis point, every changed.
Everything that I ever thoughtwas important all of a sudden
(20:16):
became it. It was no longerrelevant. The only thing that
was important was for her to bein that 20% category, to get to
that liver surgery. That was theonly thing that mattered.
Outro (20:32):
Thank you for joining me for this episode of Care
Partners Compass (20:35):
Navigating CRC. Please listen up for the next
episode, which will come outnext week. If you subscribe to
the podcast on your favoritepodcast app, you will know
exactly when the next episodecomes out. I hope that you'll
share the podcast with yourfriends and family. The
(20:55):
transcript of Care PartnersCompass: Navigating CRC and
additional links can be found onour website
Carepartnerscompass.
transistor.
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