Episode Transcript
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Speaker 1 (00:01):
eventually, you or a
loved one are likely to get a
serious illness and embark uponan uncharted journey, a journey
that may be filled withuncertainty and fear.
Having experienced this journeywith patients and with family,
there are eight lessons thatmight help you Join me in this
(00:29):
discussion.
Hi, I'm Dr Bobby DuBois andwelcome to Live Long and Well, a
podcast where we will talkabout what you can do to live as
long as possible and with asmuch energy and vigor that you
(00:50):
wish.
Together, we will explore whatpractical and evidence-supported
steps you can take.
Come join me on this veryimportant journey and I hope
that you feel empowered alongthe way.
Important journey and I hopethat you feel empowered along
the way.
I'm a physician, ironman,triathlete and have published
(01:15):
several hundred scientificstudies.
I'm honored to be your guide.
Welcome, my dear listeners, toepisode number 50, navigating a
Serious Illness.
If it hasn't already happenedto you, it likely will at some
point.
Either you or a loved one mayfeel well, but then something
(01:37):
happens.
Diagnostic tests are performedand a serious diagnosis is
shared with you Perhaps canceror MS or lupus or Parkinson's
disease, or serious heart orkidney failure, or a rare
illness in a child.
You are suddenly in veryuncharted territory.
(01:59):
How can you navigate thisserious illness?
I hope that after listening tothis discussion, you'll have
some tangible steps that youmight take and that might help
you, and that you'll feel a bitmore like the navigator on this
journey.
Well, I've been thinking aboutthis episode topic for a long
(02:22):
time, as it's a really importantone.
It increased in relevance a fewmonths ago and I want to tell
you my personal story.
Gail, my wife, and the love ofmy life had uterine bleeding one
Sunday night.
Now in medical training theteaching was bleeding in a
(02:44):
postmenopausal woman is canceruntil proven otherwise.
So off to the ER we went.
The ultrasound showedthickening of the uterine lining
.
The next day she got a biopsyand soon thereafter we learned
that it was endometrial cancer.
Mri CT scans showed significantspread and we had the diagnosis
(03:05):
ultimately of stage 4endometrial cancer.
Gail's cancer journey had begun.
She had extensive surgery andjust finished her six courses of
chemotherapy, now on toradiation therapy and three
years of a newly approvedimmunotherapy.
(03:26):
Gail is doing well and we aretruly optimistic about the
future.
During the course of thisjourney, we've experienced the
eight lessons, or eight issues,that I'd like to share with you.
There are many others of thesetopics I could discuss, but
that's enough for now.
I will also be joined by DrHelen Eshed in the next segment.
(03:51):
I want to welcome Dr HelenEshed.
To Live Long and Well.
Dr Eshed is board certified inobstetrics and gynecology and
gynecologic oncology.
In obstetrics and gynecologyand gynecologic oncology, she
takes care of women withgynecologic cancers like
cervical uterine and ovarian.
She did her fellowship ingynecologic oncology at Columbia
(04:14):
Cornell, her residency at UCDavis Medical School in Albany
and went to Dartmouth for herundergraduate education.
And, very importantly, she'sGail's doctor and guide on her
cancer journey.
Thank you so much for beinghere today and for all the care
and support you're giving thelove of my life, dr Ashed,
(04:37):
welcome.
Any thoughts before?
Speaker 2 (04:39):
we just dive in.
Thank you for having me.
I love taking care of your wifeand I appreciate the
opportunity to talk througheverything with you.
Speaker 1 (04:47):
Dr Shedd focuses on
gynecologic cancers, but the
topic for Decay, which isnavigating a serious illness,
applies to really any seriousillness cancer or Parkinson's
disease, heart failure, copd,whatever.
So when somebody gets adifficult diagnosis, when should
(05:08):
they consider getting a secondopinion?
Speaker 2 (05:10):
I think it varies
from person to person.
Your comfort level with asecond opinion.
You know, anytime you get adiagnosis that's new, especially
if it's something major.
It can be a really scary timein your life and I think it's
important that you feel verycomfortable with the physician
(05:32):
you're working with.
You feel comfortable with therecommendations you're being
given, and that's gonna varyfrom person to person.
Some people need to hearsimilar recommendations from
multiple people and some peopleimmediately feel comfortable
with their doctor and feelcomfortable moving forward with
the plan that's put in place.
(05:52):
So I think it's very variableperson to person.
I also think to some extent youhave to rely on your doctor.
Your doctor will know this issomething that I can take care
of or this is something whereyou need to go to a specialty
center.
This is something rare andunusual that needs to be
directed to a hub, and when theythink that it's something that
(06:27):
you need to seek a subspecialtycenter or you can get your care
right at home.
Speaker 1 (06:33):
Right.
You made a couple of reallyimportant points.
You know part of it is yourcomfort with your doctor.
Do you get a sense that this issome problem that they see all
the time and to the extent thatsense in your gut that might say
I probably don't need a secondopinion.
You know, one question I oftenask a specialist is how often do
(06:58):
you see this problem?
Or how often do you operate onthis problem?
And if they say, well, a coupleof years, I would say it's time
to start shopping.
If it's I see this all the timeand you feel good that this is
a person you can interact with,I would say you may not need a
second opinion.
Now we did exactly that.
We felt completely comfortablewith you, both Gail and I you
(07:28):
both Gail and I and for us timewas of the essence, because she
had advanced cancer and waitinga couple of weeks to get a
specialty visit and then gettingon that person's schedule, it
might've been four or eightweeks before we had an operation
and we weren't willing to takethe risks that things could have
spread during that time.
So we chose not to get a secondopinion.
Now, if there's a recurrenceand we're looking for a clinical
trial.
Okay, maybe then we'll get asecond opinion, but I think for
(07:51):
now we're great.
Okay, so somebody decides theyreally want a second opinion.
How do you decide whether it'sjust good enough to get the
doctor down the street or do Ineed to go to the Mecca, whether
it's MD Anderson for cancer orHopkins for some rare disorder?
How do you make that decision?
Speaker 2 (08:13):
I think you ask your
doctor.
You know, if you ask me, if yousaid to me I want to get a
second opinion, I want to see ifthere's any other options out
there, then I can tell you,based on what's going on with
you medically.
If you put 100 of me in frontof you, we're all going to tell
(08:33):
you the same thing.
Then you go to the doctor nextdoor and if there's something
you're seeking in particularfrom that person a different
personality, you know are yougetting a second opinion to
confirm the information you'rebeing given or it's not a good
match?
You and the physician thatyou're meeting with that can
(08:53):
determine who would be the bestperson to see if you want a
second opinion.
Also, I can tell you okay, thisis really rare and they have
trials a good program in sarcomaat this location or a good
program in some very niche, raredisease type at any place, and
(09:16):
that could be anywhere in thecountry, depending on what's
going on with you medically.
Speaker 1 (09:22):
So let's shift gears.
One of the critical pieces ofnavigating a serious illness is
having a quarterback, somebodywho kind of oversees all aspects
of your care.
A worst case scenario in somerespects might be breast cancer.
Your primary care doctor or thegynecologist feels a lump, or
(09:45):
you come to them with a lump.
Then you get a diagnosis, soyou're off to the breast surgeon
to remove the lump and look atlymph nodes and then you're
going to get referred to anoncologist and then likely not
likely, but depending upon thediagnosis you may need radiation
therapy.
That's yet another doctor.
(10:06):
You might end up with breastreconstruction.
So now you're visiting with theplastic surgeon.
It seems scary not to have oneperson I mean Gail, if you have
to have a cancer, you know agynecologic cancer in some
respects is better from acoroner's standpoint because you
(10:29):
, you are everything you are.
You were the surgeon, you didthe big surgery, you're doing
the chemo and the immunotherapy,you're, you know, overseeing
the radiation therapy and you'regoing to be seeing her for the
next bunch of years, hopefullynext bunch of decades.
But for so many other illnessesit doesn't naturally fit into
(10:53):
one quarterback.
Any guidance for folks.
Speaker 2 (10:58):
Right.
I think this is incrediblychallenging and it's definitely
one of the reasons that I lovegynecologic oncology and I'm
happy to be in this field,because you really take
ownership of the entiresituation from the very
beginning.
So it is difficult.
We're unique in gynecologiconcology that we do the surgery,
that we do the chemo and thatwe do the surveillance over time
(11:21):
.
And there are other cancers orother disease processes where
you're going to involve multiplesubspecialties.
You mentioned breast cancer.
So typically for breast cancerthe medical oncologist would be
the quarterback and it dependson the disease process.
But the breast cancer,typically again the medical
(11:42):
oncologist makes the plan.
And breast cancer, typicallyagain the medical oncologist
makes the plan and they'll tellyou based on a whole it's very
complex these days, but a wholebunch of different factors Do
you start with a surgery, do youstart with chemo, do you need
radiation, do you need an oral,and they'll guide you step by
step and then afterwards they'lltell you who's going to be the
(12:03):
one monitoring you over time.
All cancers.
They're going to follow youover time until you're five
years cancer-free and themedical oncologist would take
the role of the quarterback.
Speaker 1 (12:13):
What about your PCP,
your primary care doctor?
Is there a role in theseserious illnesses for them to be
the quarterback, or is it sucha unique set of knowledge skills
that it would be hard?
Speaker 2 (12:38):
oncologist, but the
PCP still has a really important
role because even when you havecancer, you might have high
blood pressure or heart failureor diabetes or any of a number
of other medical problems, oryou can get sick just like
anyone else.
You can get a cold or the fluor an upper respiratory tract
infection or pneumonia, and sothen your primary care physician
(12:59):
is going to work hand in handwith your oncologist.
If it's related toimmunosuppression from therapy
or something that is eitherdirectly related to cancer or
the therapies being given forcancer, then your oncologist is
going to play an active role.
But if it's something unrelated, then your primary care
physician is going to play anactive role.
And I actually think you knowhaving all of the other medical
(13:22):
problems that any one person hasin good control is incredibly
helpful in terms of how wellpeople do and how healthy they
are through treatment andrecovery in their life.
Speaker 1 (13:35):
The next topic is
sort of near and dear to my
heart and kind of the backboneof this podcast, as my listeners
will know.
You know, where is thereevidence, where is there not?
How can we make sure that we'redoing stuff that actually works
?
This happens to all of us.
You know we hear something onthe radio and a new way to lose
(13:57):
weight or a new way to, you know, feel stronger after the gym,
and you know we're chasing afterthat shiny object.
This gets magnified when peopleget a diagnosis that's
life-threatening, it's cancer,it's, you know, end-stage kidney
disease, and they feelemotionally out of control that
(14:20):
this is a disease that'shappened to them.
They can't control it, and sothey grasp for something that
they can control.
I think it's just very natural.
We want agency, we want to beable to do something.
If I do this, I'm going to beatthis disease.
You know fill in the blankswhat the disease is, so it's
(14:41):
totally understandable.
The problem is, is that bytalking to friends and reading
articles and going on theinternet, you know you're going
to hear about oh, this specialdiet gets rid of the cancer and
people live so much longer, oryou need these supplements to
support this disease you've got?
Or how about these you know IVvitamins that you see driving
(15:05):
down the street at thesestorefront places, or hyperbaric
oxygen, you know, and peopleare grasping for something to
give them a sense that I can dothis, I will get better, but in
most of certainly the cases Ijust mentioned, you know,
there's no evidence to supportthem.
How do patients I'm sure thishappens all the time, I mean it
(15:28):
happened with Gail and we cameto you and got some guidance how
do you counsel people?
You know what to read, what notto read, and then how do they
separate the hype from you?
Know something to read, whatnot to read?
And then how do they separatethe hype from you?
Know something that mightactually help?
Speaker 2 (15:42):
I think this is a
challenge and I think it's very
common.
I think people around you loveyou and care about you, and so
you're going to get all kinds ofadvice from family and friends.
And then between AI and theinternet and there's this
constant feed of information,and what will actually be
helpful and what won't isdifficult to navigate.
(16:04):
It's very difficult to navigate.
I think that, essentially, whenyou want to incorporate other
complementary medicine or careinto your cancer care, it's
important to talk directly withyour doctor.
As open as your communicationcan be, I think, the more
successful it's going to be foryou.
And there are times thatholistic complementary medicines
(16:30):
are very helpful and there aretimes they can actually be
detrimental.
So there are times thatsupplements, for instance, be
detrimental.
So there are times thatsupplements, for instance, can
impact metabolism pathways andkeep chemo in your system longer
or flush it out faster, and itcan actually impact your cancer
care negatively, even thoughyou're trying to help yourself.
So some of these high-dosevitamin supplements can actually
(16:54):
be incredibly detrimental.
So it's important that you letyour doctor know.
I want to give this a try.
This is what I read.
What do you think and see whereto go from there and rely on
your doctor to give you guidance.
On the other hand, some of thetoxicities from treatment and
that sort of thing.
You can get tremendous benefitfrom massage, acupuncture,
(17:16):
hyperbaric oxygen can impactwound healing.
There are times that theseother care can be beneficial and
you really have to take it kindof a step at a time.
It's an individual plan thatunfolds.
Same thing with complementaryand alternative medicine.
You have to have a reallyhonest discussion with your
(17:40):
physician about what will andwill not be helpful in your care
.
Speaker 1 (17:44):
That makes a lot of
sense.
So we're not going to dive intothis topic too much because I'm
going to make it a topic for awhole nother episode.
But it's the issue of the powerof positive thinking.
You know, when people say Iwill pray for you, or you have
such a strong spirit, I knowyou're going to, you know, win
(18:04):
this battle, and I want toexplore what's the evidence to
support it or not support it.
Do you have any just sort ofoff-the-cuff thoughts about this
?
Speaker 2 (18:15):
Definitely.
I think that your journey isnot just that a physical medical
, it's not just a plug and play.
That is not how health works atall.
I think your mental, emotional,physical well-being all plays
into your journey.
And I think positive thinking,I think minimizing your stress,
(18:38):
I think general self-care, goodsleep, eating well, having a
good support system all of thesethings play into your outcome.
We know some things directly,like cortisol levels, is
detrimental, but overall, Ithink that it's not so simple.
(18:59):
As you have this, you do this,everything will be better.
It's definitely more complexthan that and the mental and
emotional component is huge.
There's tremendous resourcesfor that too.
There are social workers.
There are tons of systems inplace to help with your entire
journey.
But positive thinking, I thinkit's huge.
(19:22):
I think it's absolutely huge.
Speaker 1 (19:25):
Well, this is a great
tip off to the next episode
that will be coming down.
Dr Ashed, thanks so much forjoining me today and for being
Gail's quarterback on her cancerjourney.
Speaker 2 (19:38):
Thank you so much for
having me.
I care very deeply for yourwife and I'm happy that she's
doing well.
It's good to talk.
Speaker 1 (19:47):
Wonderful, thank you,
my discussion with Dr Ashed.
We discussed several of theeight topics when to consider a
second opinion and who to see,finding a quarterback to oversee
all aspects of your care, therole of your primary care doctor
and the desire for agency to dosomething, which can lead to
(20:09):
believing in treatments thatdon't really have evidence to
support them.
But there are a few more ofthese topics I want to go
through with you.
First, number one make sure youhave the right diagnosis.
Make sure that you know is itreally MS or Parkinson's, or
(20:32):
what specific subtype of cancerit might be, type of cancer it
might be.
Ask your doctor how certain areyou of the diagnosis?
Ask could additional testinghelp us understand what's going
on?
Without the right diagnosis,the therapy may not be
appropriate for you and,depending upon the answers to
(20:54):
those questions, you may feelcertainty.
You may feel like you're on theright path.
But if you're feeling uncertain, that may be a time for a
second opinion.
Lesson thought number two asklots of questions of your doctor
.
Don't be shy.
(21:15):
I might suggest you write downthe questions in advance and
bring a listener with you,because sometimes, when you are
facing an illness, it's hard tolisten and retain that
information.
So bring a spouse, bring afriend, bring somebody that can
be there and take notes andlisten.
Ask your doctor what's myprognosis?
(21:38):
Not just the average, what doesthe average person experience?
But what about the tail of thecurve?
What is the long-term possiblesurvival with this diagnosis?
So it's not just the averageyou might be interested in, but
how many people do?
Extremely well, clearly.
(21:58):
What are my treatment options?
What are the risks of each oneof them, the benefits, the costs
?
Here's an interesting one.
Are we going for a cure?
Is this a disease we can cure,or is it a disease we're just
going to palliate?
That's very helpful for you toknow, emotionally and from an
(22:19):
educational and intellectualstandpoint.
Are there clinical trials toconsider Now?
If the therapy is prettyroutine and understood, maybe
not now, but if there's arelapse or things aren't going
well, then maybe.
Then it's a time to consider aclinical trial.
And with all these questionsyou may run out of time.
(22:42):
The doctor may be just too busy, so ask to have another
appointment, perhaps even atelehealth appointment.
Lesson number three anticipate aroller coaster of emotions.
Be resilient, if possible.
As the saying goes, it's amarathon, not a sprint.
(23:03):
We thought initially with theultrasound that Gail had
something that was confined toher uterus, but then the MRI
showed it was way beyond theuterus.
And then when surgery happened,we weren't sure if surgery
could even remove the cancer.
Turned out surgery was verysuccessful in doing that.
(23:27):
Her lung CT showed nodules.
We thought these were just oldthings and not related to the
cancer.
But with chemotherapy they gotsmaller and so what was a stage
3 cancer became a stage fourcancer.
So anticipate that the journeyahead of you will have twists
and turns.
Anticipate that roller coaster.
(23:51):
Fourth, find where you can haveagency, where you feel like you
have something you can do.
That would be proactive and putyou in a sense of control,
because it is very natural tofeel out of control that the
disease is happening to you.
So for many illnesses and formany people, exercise can have a
(24:15):
role.
Nutrition might have animportant role.
Exercise can have a role.
Nutrition might have animportant role.
Really interesting study thatlooked at patients with colon
cancer that were in remission.
They had had adjuvant therapyand they were doing really well.
And they asked the question ifyou exercise, will you have a
greater survival, greaterlikelihood that the cancer won't
(24:38):
come back?
There were about 900 people inthe study, so it was quite a bit
, and one half got a structuredexercise program, one half did
not.
They just got some healtheducation sessions.
They followed them for abouteight years and what they found
is the people who exercised hada 28% better likelihood of not
(25:02):
having a recurrence.
That's really a big deal.
Now, will it happen for otherdiseases?
We don't know, but at leasthere's one where people were
able to do something and changethe trajectory of their illness.
But, as I discussed with DrHachette, in a goal of trying to
take control, to be proactive,there will be many things you
(25:26):
will run across on the internetand social media and hearing
from friends that may soundremarkable claims to cure your
disease but, frankly, may nothave any evidence to support
them.
Gail ran across a video thattalked about cancer and how you
(25:46):
can't have any sugar becausesugar feeds the cancer.
As I am a doctor and have ahealth background, I could walk
her through this show, her otherresearch and made her
understand that wasn't really afear that she should have.
Number five create a supportsystem.
(26:06):
You may not have the strengthemotionally or physically to do
it yourself, so have otherpeople prepare it for you.
But there are multiple layersof a support system.
It isn't just one aspect ofwhat you might need.
On the medical side, a closefriend of mine was diagnosed
(26:27):
with kidney cancer and he's alawyer.
But as soon as he heard thediagnosis, his ability to focus
and make decisions really prettymuch shut down.
So for him, his adult daughterstepped in, found places for
therapy, found him a clinicaltrial.
That was just right for him andhe's doing really, really well.
(26:48):
So you may need a supportsystem to help you with some of
the medical issues.
Clearly, on the emotional side,it's critically important to
have a support system For Gail.
I hope I am her rock.
I'm also her medical guide, butI hope I am her rock.
Get as many emotional supportfolks in your corner as possible
(27:13):
.
Third, this is not something Iwas trained to think about and
that's the spiritual side.
The help you might need Now.
It isn't just prayer.
It isn't prayer that othersmight do, it isn't prayer that
you might do.
That, of course, could be veryimportant for you.
But there's another spiritualside.
Our daughter, rachel, realizedthat Gail was going to undergo a
(27:39):
large surgery.
Her uterus and ovaries andeverything would be removed and
it would be a really big dealand a deal that could be
frightening and sadnessprovoking.
Rachel came up with this idea,which was extraordinary to do a
ceremony with her female friendsand relatives to thank her
(28:02):
uterus.
She was going to lose heruterus, but that uterus had
provided multiple babies and hadserved her so well in her life.
So Rachel helped Gail turn whatwas a sad and scary surgery
into something that at least hada component of gratitude
(28:24):
connected to it.
Gail, before each chemotherapyround, has had a telehealth with
a woman who underwent treatmentfor ovarian cancer many years
ago, is doing well and counselsfolks.
So there's a blessing, there'sgeneral guidance, so that's a
whole side of care that youmight not have thought about.
(28:47):
I certainly hadn't thoughtabout it.
And of course, there's theeducational side.
There are many patient supportorganizations by disease and
they can give you lots ofinformation about the illness
and it's also, of course,emotional support.
And, lastly, prepare for thecosts.
(29:08):
The costs can be high.
They can be hopefully not sohigh for you.
Gail is on Medicare and she hasa Medigap plan.
But we received a bill when shehad her surgery and that was
outpatient surgery and it was$189,000 for the outpatient
(29:31):
surgery.
And she's on this newimmunotherapy and it's $12,000
every three weeks immunotherapyand it's $12,000 every three
weeks.
So in our case we were veryfortunate that Medicare and the
Medigap policy pretty much paidfor everything so far and likely
will continue to do so.
So our out-of-pocket expensesmay be very, very little.
(29:56):
But try to find out so you'renot surprised.
And it adds another stresslevel.
Sometimes it's hard to knowexactly what it will cost for
cancer in a cancer center.
There often are people thatwill walk you through that.
They will have checked withyour insurance company and give
you a pretty good sense of it.
Do ask the question, do try tounderstand sense of it.
(30:21):
Do ask the question, do try tounderstand.
You may have deductibles, youmay have co-pays.
Hopefully you have anout-of-pocket maximum so at some
point you will be protectedfrom additional costs.
So keep that in mind.
Well, it's time to summarize youor a loved one may develop a
serious illness and the fear,the uncertainty and many other
(30:44):
emotions are truly to beexpected.
I've walked through eight stepsor issues that can help you
feel at least a bit more incontrol and be more of the
navigator of your own illness,and I hope you found this useful
.
Please let me know, pleaseshare the podcast with others
(31:05):
and, as I mentioned on aprevious podcast, I'm going to
be doing a free live workshop onOctober 2nd at 6 pm Central,
and it's really, how do we takeall the things that I've talked
about, things that will improveyour health and wellness but not
turn it into a full-time jobhow to practically figure out
(31:29):
what to focus on, perhaps whatnot to worry about?
Please go to my website,drbobbilivelongandwellcom, and
you can sign up.
Sign up for the newsletter,which will also give you more
information.
As always, I hope you live longand well with the knowledge that
if something bad does happen toyou or a loved one, you have a
(31:53):
few new tools to help you.
To help you.
(32:21):
Newsletter on practical andscientific ways to improve your
health and longevity.
Please visit me atdrbobbilivelongandwellcom.
That's, doctor, as in D-R Bobby.
Live long and wellcom.