Healing and Hope in Pediatric Cancer Care

Transcript

00:00 --> 00:01Funding for Yale Cancer Answers
00:01 --> 00:03is provided by Smilow Cancer
00:03 --> 00:04Hospital.
00:05 --> 00:07Welcome to Yale Cancer Answers
00:07 --> 00:08with the director of the
00:08 --> 00:10Yale Cancer Center, doctor Eric
00:10 --> 00:11Winer.
00:11 --> 00:13Yale Cancer Answers features conversations
00:14 --> 00:14with oncologists
00:15 --> 00:16and specialists who are on
00:16 --> 00:17the forefront of the battle
00:17 --> 00:18to fight cancer.
00:19 --> 00:20This week, it's a conversation
00:20 --> 00:21about the care of pediatric
00:21 --> 00:23patients with cancer with doctor
00:23 --> 00:24Prasanna Ananth.
00:24 --> 00:26Doctor Ananth is an associate
00:26 --> 00:28professor of pediatrics and hematology
00:28 --> 00:30oncology at the Yale School
00:30 --> 00:30of Medicine.
00:31 --> 00:32Here's doctor Winer.
00:33 --> 00:34Maybe you could just tell
00:34 --> 00:35us a little bit about
00:35 --> 00:36your background.
00:38 --> 00:38Tell us
00:39 --> 00:40how you got to where
00:40 --> 00:42you are.
00:42 --> 00:44I've always been very interested in
00:44 --> 00:46the illness experience
00:47 --> 00:48and gravitated naturally
00:49 --> 00:51from probably high school onwards
00:51 --> 00:51towards
00:52 --> 00:54working with children. So pediatrics
00:54 --> 00:56was a natural fit.
00:56 --> 00:58And then as
00:58 --> 01:00a final year medical student,
01:00 --> 01:00I had a
01:02 --> 01:03visiting elective
01:03 --> 01:05at Boston Children's Hospital. And
01:06 --> 01:07while I was there, I
01:08 --> 01:10met my future and longtime
01:10 --> 01:12mentor, doctor Joanne Wolf.
01:12 --> 01:14And here was a
01:15 --> 01:18phenomenal, powerful woman who is
01:18 --> 01:19trained as a pediatric
01:19 --> 01:20oncologist,
01:20 --> 01:22so a cancer specialist, as
01:22 --> 01:24well as a pediatric palliative
01:24 --> 01:25care doctor.
01:27 --> 01:28She founded pretty much
01:29 --> 01:30the first palliative care program
01:30 --> 01:32in this entire country and
01:34 --> 01:35is also a researcher and a
01:37 --> 01:38mom of three kids.
01:39 --> 01:41And having met her, I
01:41 --> 01:42was just really inspired
01:43 --> 01:44by the work that she
01:44 --> 01:45did, by her
01:46 --> 01:47demeanor, her approach,
01:48 --> 01:49her passion for the work
01:50 --> 01:53that she engaged in, and
01:53 --> 01:54just the
01:55 --> 01:55intellectual
01:56 --> 01:57inquiry as well as the
01:57 --> 01:58sort of practical
01:59 --> 02:01aspects of pediatric palliative care
02:01 --> 02:02research. So that's really sort
02:02 --> 02:04of where I derived my
02:04 --> 02:05inspiration.
02:05 --> 02:06And let me just say, having
02:07 --> 02:08been at Dana Farber for
02:08 --> 02:09many years,
02:10 --> 02:12Joanne was my colleague
02:13 --> 02:14for many of those years,
02:14 --> 02:15if not all of those
02:15 --> 02:16years.
02:19 --> 02:21And on some level, she
02:21 --> 02:23founded this whole field of
02:23 --> 02:25pediatric palliative care, and is an
02:26 --> 02:28amazing person who's now the
02:28 --> 02:30chair of pediatrics at Mass
02:30 --> 02:32General Hospital.
02:36 --> 02:37You came to Yale a
02:37 --> 02:39number of years ago, and
02:40 --> 02:41here you both
02:42 --> 02:44spend some time taking care
02:44 --> 02:44of kids
02:45 --> 02:47and also do research focused
02:47 --> 02:48on palliative care.
02:49 --> 02:49Let's first
02:50 --> 02:51talk about
02:51 --> 02:52cancer in children.
02:54 --> 02:54Thankfully,
02:55 --> 02:56this is not something we
02:56 --> 02:58talk about all that often
02:58 --> 02:59because, thankfully, it's not very
02:59 --> 03:01common. Can you speak to
03:01 --> 03:02that a little bit?
03:04 --> 03:06As you mentioned, it is
03:06 --> 03:07very rare for a child
03:07 --> 03:08or an adolescent to
03:09 --> 03:10experience cancer.
03:11 --> 03:12Probably around
03:12 --> 03:15sixteen thousand children and adolescents
03:15 --> 03:17are diagnosed with cancer every
03:17 --> 03:17year
03:18 --> 03:19in the United States.
03:20 --> 03:21It's much higher across
03:21 --> 03:24the globe, but fortunately in
03:24 --> 03:26the United States, we have,
03:26 --> 03:28even in rural communities, we
03:28 --> 03:29have pretty good access to
03:29 --> 03:31medical care for kids with
03:31 --> 03:31cancer.
03:32 --> 03:33So that
03:34 --> 03:36amounts to about one in
03:36 --> 03:38every two hundred and sixty children
03:39 --> 03:40who might experience cancer in
03:40 --> 03:42a given year.
03:42 --> 03:43To put that in context, if
03:43 --> 03:45you just look at breast
03:45 --> 03:46cancer, for example,
03:47 --> 03:47it's
03:48 --> 03:50far less than ten percent
03:50 --> 03:51of the number of breast
03:51 --> 03:52cancer cases each year
03:53 --> 03:54of all kids with
03:54 --> 03:56cancer.
03:56 --> 03:57And breast cancer is just one
03:57 --> 03:59of many cancers in adults.
04:02 --> 04:03Across the country,
04:04 --> 04:06access to care seems to
04:06 --> 04:07be okay?
04:08 --> 04:10Well, in general, it's a
04:10 --> 04:11little bit different from treatment
04:11 --> 04:13of adult cancers in that we
04:15 --> 04:18generally treat childhood cancers at
04:18 --> 04:20major cancer centers.
04:20 --> 04:22So we do know that
04:22 --> 04:23in some
04:24 --> 04:25locales, like the state of
04:25 --> 04:27California where there's a lot
04:27 --> 04:29of rural areas and
04:31 --> 04:33very limited access to
04:33 --> 04:34large cancer centers,
04:35 --> 04:36that there can be gaps
04:36 --> 04:37in care.
04:37 --> 04:39But what is sort of
04:39 --> 04:42different about childhood cancer treatment
04:42 --> 04:42is that
04:43 --> 04:44it's very standardized.
04:45 --> 04:47So we often follow
04:47 --> 04:48protocols
04:49 --> 04:51according to a big cooperative
04:51 --> 04:52clinical trials group, the Children's
04:52 --> 04:54Oncology Group.
04:54 --> 04:56So for the most part,
04:56 --> 04:58pretty much anywhere you go
04:58 --> 04:59in the country,
04:59 --> 05:01if you're seeing an oncologist
05:01 --> 05:03for a childhood onset cancer,
05:03 --> 05:05likely you will be offered
05:05 --> 05:06treatment according
05:07 --> 05:08to the
05:08 --> 05:11latest published trial through the
05:11 --> 05:13Children's Oncology Group
05:14 --> 05:15or based on a new
05:15 --> 05:17clinical trial that they're rolling
05:17 --> 05:18out.
05:18 --> 05:19And are there many kids in clinical
05:19 --> 05:21trials?
05:24 --> 05:26Yeah, it's nice in that there
05:26 --> 05:27is this standardization.
05:28 --> 05:29And a lot
05:29 --> 05:30of times families that are
05:30 --> 05:32newly diagnosed are sort of
05:33 --> 05:33panicking,
05:34 --> 05:34understandably,
05:35 --> 05:36and trying to figure out
05:36 --> 05:38where the best place is
05:38 --> 05:39to go for care.
05:39 --> 05:41And what I
05:41 --> 05:42always tell families is that,
05:43 --> 05:44for the most part, no
05:44 --> 05:45matter where you go in
05:45 --> 05:46the country
05:47 --> 05:48there will be
05:48 --> 05:50differences in terms of the
05:50 --> 05:52services that you have access to
05:53 --> 05:55and the
05:55 --> 05:57types of doctors, the surgeons,
05:57 --> 05:59the radiation oncologists, etcetera.
05:59 --> 06:01However, the treatment itself
06:02 --> 06:03is pretty standard
06:04 --> 06:06and there will be very
06:06 --> 06:08minimal to no differences
06:08 --> 06:10regardless of where you go.
06:11 --> 06:13And of the cancers that
06:13 --> 06:14occur in children,
06:15 --> 06:16what are the most common?
06:16 --> 06:19They're very different than
06:19 --> 06:21in general adult cancers.
06:21 --> 06:23Yeah. So the most common
06:23 --> 06:24types of cancers that we
06:24 --> 06:25see in kids
06:25 --> 06:27and adolescents are leukemias
06:28 --> 06:30and lymphomas, so cancers of
06:30 --> 06:32blood cells and of lymph
06:32 --> 06:33nodes.
06:34 --> 06:35And is there a reason
06:35 --> 06:36for that?
06:37 --> 06:38You know, I don't know.
06:38 --> 06:40I mean, we're trying to
06:40 --> 06:41understand more and more through
06:41 --> 06:43our clinical trials about what
06:44 --> 06:45predisposes
06:45 --> 06:46a child to cancer,
06:47 --> 06:48and I think there's a
06:48 --> 06:51growing understanding that most children
06:51 --> 06:52with cancer, especially children who
06:52 --> 06:54are really young who develop
06:54 --> 06:55cancer,
06:55 --> 06:57have probably inherited
06:57 --> 06:58some sort of predisposition,
06:59 --> 07:00but we're really
07:01 --> 07:03lacking an understanding of
07:03 --> 07:05what causes cancer in kids.
07:06 --> 07:08And that is a
07:08 --> 07:09real shift from the adult
07:09 --> 07:11world where a lot of
07:12 --> 07:13cancers arise in people who
07:13 --> 07:14have been long time smokers
07:15 --> 07:15or who
07:16 --> 07:18have other sort
07:18 --> 07:20of lifestyle choices that have
07:20 --> 07:21predisposed them. It's not the
07:21 --> 07:22case in kids.
07:24 --> 07:25And in children,
07:26 --> 07:29leukemia typically is acute leukemia.
07:29 --> 07:31It's not a chronic leukemia.
07:32 --> 07:33It is diagnosed
07:33 --> 07:34somewhat
07:35 --> 07:37abruptly. Someone has symptoms
07:37 --> 07:39and they are diagnosed pretty
07:39 --> 07:40quickly usually.
07:41 --> 07:42But the outcome is very
07:42 --> 07:43different
07:43 --> 07:45than it is in
07:45 --> 07:46adults.
07:46 --> 07:47Mayeb you could tell us a little bit
07:47 --> 07:49about what the usual
07:49 --> 07:51course is for a child
07:51 --> 07:51with leukemia.
07:54 --> 07:55As you pointed out, usually
07:55 --> 07:56it's sort of
07:57 --> 07:59abrupt or acute onset, and
07:59 --> 08:00that can come with a
08:00 --> 08:02lot of challenges both in
08:02 --> 08:03terms of diagnosing
08:04 --> 08:06and expediting treatment,
08:07 --> 08:08and then also in terms
08:08 --> 08:10of adjustment for families and
08:10 --> 08:11children. We have to move
08:11 --> 08:12very, very quickly.
08:15 --> 08:16The likelihood of cure for
08:16 --> 08:18the vast majority of leukemias
08:18 --> 08:20and lymphomas is greater
08:20 --> 08:21than eighty five percent.
08:22 --> 08:23Recently,
08:24 --> 08:25there has been a novel
08:25 --> 08:27targeted therapy
08:28 --> 08:29that has
08:29 --> 08:29improved
08:30 --> 08:32the outcomes for kids with
08:32 --> 08:33acute leukemia,
08:33 --> 08:34the most common type of
08:34 --> 08:36leukemia, ALL, to
08:38 --> 08:39a greater than ninety five,
08:39 --> 08:41almost ninety eight percent
08:42 --> 08:44likelihood of cure. And so
08:44 --> 08:45we've really moved
08:45 --> 08:47quickly, because
08:47 --> 08:49if you think back to
08:49 --> 08:51honestly, like, maybe seventy years
08:51 --> 08:52ago, that was when
08:53 --> 08:55leukemia treatments were even being
08:55 --> 08:55introduced
08:55 --> 08:56in kids.
08:59 --> 09:01And the likelihood of cure was very,
09:01 --> 09:02very low.
09:02 --> 09:04Now we're curing
09:04 --> 09:06virtually almost all children with
09:06 --> 09:08leukemia.
09:08 --> 09:10We fortunately
09:10 --> 09:11have amazing outcomes,
09:12 --> 09:13and we have a lot
09:13 --> 09:14of really great treatments.
09:16 --> 09:17That's not to say that
09:17 --> 09:19it isn't grueling. Leukemia treatment
09:19 --> 09:20lasts over
09:21 --> 09:21two years.
09:22 --> 09:24So as compared with a
09:24 --> 09:26lot of cancers in adults,
09:26 --> 09:27you know, it's a
09:27 --> 09:29lot of visits to the
09:29 --> 09:30cancer clinic,
09:31 --> 09:32a lot of hospitalizations,
09:33 --> 09:35and especially in the first
09:35 --> 09:36six months can be
09:36 --> 09:38very, very intensive.
09:42 --> 09:44And with this new targeted therapy,
09:44 --> 09:45have you been able to
09:45 --> 09:47peel back any of the
09:47 --> 09:48other therapy, or is that
09:48 --> 09:49a hope for the future?
09:49 --> 09:50I think that's a hope
09:50 --> 09:51for the future. It's a
09:51 --> 09:53little too soon to tell.
09:54 --> 09:56This particular therapy, blinatumumab,
09:58 --> 09:59has been introduced
10:00 --> 10:02in the setting of children
10:02 --> 10:04with relapsed leukemia, and only
10:04 --> 10:06recently in a trial in
10:06 --> 10:07the last couple of years
10:07 --> 10:08was introduced
10:08 --> 10:10earlier on in cancer treatment.
10:11 --> 10:12And it was the subject
10:12 --> 10:14of a New England Journal
10:15 --> 10:16paper in December,
10:17 --> 10:18and a lot of media
10:18 --> 10:21coverage because the outcomes in
10:21 --> 10:23this trial that's still ongoing
10:23 --> 10:24were
10:25 --> 10:27so favorable towards children who
10:27 --> 10:28had received blanatumumab
10:29 --> 10:31upfront that they had to
10:31 --> 10:32close the trial early.
10:33 --> 10:34Wow.
10:34 --> 10:36That's kind of amazing, and I
10:36 --> 10:37think the hope would be
10:37 --> 10:38to try to reduce some
10:39 --> 10:41of the toxic chemotherapies
10:41 --> 10:43because, you know, other chemo
10:43 --> 10:46medications, unfortunately, can't differentiate between
10:46 --> 10:48healthy cells and cancer cells.
10:48 --> 10:49We have very
10:49 --> 10:51few targeted therapies that are
10:51 --> 10:52shown to be effective in
10:52 --> 10:54pediatric cancers. And so, you
10:54 --> 10:56know, now that we know
10:56 --> 10:57this, the idea would be
10:57 --> 10:58to try to remove
10:59 --> 11:00or minimize some of those
11:00 --> 11:02more toxic chemotherapies
11:04 --> 11:06that have long term side effects.
11:07 --> 11:09And apart from leukemias and
11:09 --> 11:09lymphomas,
11:10 --> 11:11the other cancers in kids
11:13 --> 11:14that strikes me that cancers
11:15 --> 11:17that involve the brain are
11:17 --> 11:18pretty common.
11:18 --> 11:20They're not very common.
11:21 --> 11:22What's unfortunate about a lot
11:22 --> 11:24of brain tumors in children
11:24 --> 11:25is that
11:25 --> 11:28they are often not curable.
11:28 --> 11:30And so that's
11:30 --> 11:31why we just hear about
11:31 --> 11:32them a lot.
11:32 --> 11:34Yeah. And the same goes,
11:34 --> 11:34unfortunately,
11:35 --> 11:37for solid tumors. Sometimes they
11:37 --> 11:39can behave more aggressively,
11:39 --> 11:41especially in adolescents and young
11:41 --> 11:42adults.
11:43 --> 11:45But fortunately, brain tumors and
11:45 --> 11:46solid tumors outside of the
11:46 --> 11:48brain are very, very rare.
11:48 --> 11:49And is that just because
11:49 --> 11:51everything apart from leukemia and
11:51 --> 11:52lymphoma is rare?
11:53 --> 11:54I think so.
11:55 --> 11:56There's leukemia and lymphoma,
11:57 --> 11:59and they're really one and two
12:00 --> 12:01then there isn't really three.
12:01 --> 12:03Everything else is like ten.
12:04 --> 12:06That's right.
12:09 --> 12:11I know that the treatment
12:11 --> 12:13of children who have various
12:13 --> 12:14types of brain tumors
12:15 --> 12:16can be quite challenging.
12:17 --> 12:18That's right. Yeah.
12:19 --> 12:20And, you know, the other
12:20 --> 12:22thing that I think
12:22 --> 12:23that people have become more
12:23 --> 12:25and more aware of over
12:25 --> 12:26the last
12:28 --> 12:29decade or more
12:30 --> 12:32is that there can be
12:32 --> 12:33long term consequences
12:35 --> 12:36of this therapy.
12:37 --> 12:39And for that matter, people
12:39 --> 12:40can get second cancers both
12:40 --> 12:42from the therapy and perhaps
12:42 --> 12:43because they have some predisposition.
12:46 --> 12:47That's right. The long term
12:50 --> 12:50consequences
12:51 --> 12:52that we worry about the
12:52 --> 12:54most are
12:54 --> 12:56infertility, unfortunately.
12:56 --> 12:58So for boys and men,
12:58 --> 13:00low sperm count. For girls
13:00 --> 13:01and young women,
13:01 --> 13:03premature ovarian insufficiency.
13:04 --> 13:05Unfortunately,
13:06 --> 13:07early
13:07 --> 13:08sort of failure of the
13:08 --> 13:10ovaries to function.
13:13 --> 13:14It depends a little bit
13:14 --> 13:15on what sorts of treatments
13:15 --> 13:17you've received. So we worry
13:17 --> 13:18about radiation
13:18 --> 13:19related growth challenges,
13:20 --> 13:22bone health in cancers that
13:22 --> 13:23we treat with a lot
13:23 --> 13:23of steroids.
13:24 --> 13:25A lot of those side
13:25 --> 13:27effects are manageable
13:28 --> 13:30with lifestyle changes, with medications,
13:31 --> 13:32and with close follow-up.
13:33 --> 13:35The risk of a second
13:35 --> 13:38cancer related to chemotherapy is
13:38 --> 13:40pretty low. We estimate probably
13:40 --> 13:41less than one percent of
13:41 --> 13:42children
13:42 --> 13:43will have that, but that's
13:43 --> 13:45why it's just so critically
13:45 --> 13:47important even after a child
13:47 --> 13:48is done with treatment to
13:48 --> 13:50continue to follow-up really closely
13:50 --> 13:51with their doctors and their
13:51 --> 13:52medical team.
13:53 --> 13:54Well, that's really helpful.
13:55 --> 13:56I'm certainly getting educated.
13:58 --> 13:59I think we're gonna
13:59 --> 14:00take a one minute break,
14:01 --> 14:03and then we'll be back
14:03 --> 14:04and proceed with the
14:04 --> 14:06second half of the show.
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15:11 --> 15:13You're listening to Connecticut Public
15:13 --> 15:14Radio.
15:15 --> 15:16This is Eric Winer with
15:16 --> 15:18Yale Cancer Answers, and I'm
15:18 --> 15:20back with our guest,
15:21 --> 15:23doctor Prasanna Ananth,
15:24 --> 15:25who is a pediatric
15:25 --> 15:26hematologist
15:26 --> 15:28oncologist. We've been talking about
15:28 --> 15:29pediatric cancer.
15:29 --> 15:31We're gonna talk just a
15:31 --> 15:32little bit more about that,
15:32 --> 15:33and then we're gonna get
15:33 --> 15:34into some of her research.
15:36 --> 15:37I just wanted to ask
15:37 --> 15:37youm about
15:39 --> 15:40pediatric cancer survivorship
15:41 --> 15:41programs
15:42 --> 15:43and what has become
15:44 --> 15:45the standard
15:45 --> 15:46these days,
15:47 --> 15:49and finally,
15:50 --> 15:51how you think about the
15:51 --> 15:53transition to adulthood
15:54 --> 15:54when
15:55 --> 15:56people who have been seeing
15:56 --> 15:57their pediatrician for a long,
15:57 --> 15:58long time
15:59 --> 16:00are twenty six years old
16:00 --> 16:01and still going to the
16:01 --> 16:02children's hospital.
16:03 --> 16:05Yeah. So it's interesting.
16:05 --> 16:06Survivorship
16:07 --> 16:09care has really evolved.
16:10 --> 16:11It is
16:11 --> 16:13conceived of as very interdisciplinary.
16:14 --> 16:16So most survivorship clinics are
16:16 --> 16:17staffed by
16:17 --> 16:19physicians, nurse practitioners,
16:19 --> 16:19dietitians,
16:20 --> 16:21psychologists,
16:22 --> 16:22endocrinologists,
16:23 --> 16:24cardiologists.
16:25 --> 16:26I think there's a
16:26 --> 16:27general
16:29 --> 16:31consensus in the field that
16:32 --> 16:33survivorship
16:33 --> 16:34requires
16:34 --> 16:36all of this interdisciplinary
16:36 --> 16:38input and that the effects
16:38 --> 16:40of childhood cancer can really
16:40 --> 16:41last.
16:43 --> 16:44So one of
16:44 --> 16:46the things that I find
16:46 --> 16:47a lot of
16:48 --> 16:48folks who take care of
16:48 --> 16:50adults are really surprised by
16:51 --> 16:52is that we take care
16:52 --> 16:52of children
16:53 --> 16:55anywhere from birth all the
16:55 --> 16:57way until they fall off
16:57 --> 16:58their parents' health insurance. So
16:58 --> 17:00we sometimes take care of
17:00 --> 17:00adults.
17:01 --> 17:01In fact,
17:02 --> 17:03I had on my list
17:03 --> 17:05a patient who is
17:06 --> 17:08a childhood cancer survivor who
17:08 --> 17:10is thirty years old.
17:10 --> 17:11And I can't say that
17:11 --> 17:12I feel
17:13 --> 17:14entirely comfortable
17:14 --> 17:15taking care of thirty year
17:15 --> 17:16olds,
17:16 --> 17:17you know, because there's a
17:17 --> 17:18lot of other chronic health
17:18 --> 17:19problems that I don't have
17:19 --> 17:21the skills to necessarily manage.
17:22 --> 17:24However, we really rely heavily
17:24 --> 17:25upon our colleagues in the
17:25 --> 17:26adult world.
17:26 --> 17:27And for most survivors
17:29 --> 17:31they continue to come
17:31 --> 17:32back at least to the
17:32 --> 17:34survivorship clinic at least once
17:34 --> 17:35a year
17:35 --> 17:37for many years after cancer
17:37 --> 17:39therapy. So it depends
17:39 --> 17:40a little bit on what
17:40 --> 17:42type of cancer you've had,
17:42 --> 17:44but for most children with
17:44 --> 17:45cancer, they come back at
17:45 --> 17:46least in the first several
17:46 --> 17:48years very frequently to the
17:48 --> 17:50oncology clinic. And we do
17:50 --> 17:52labs, we do an exam,
17:53 --> 17:55and carefully monitor for recurrence
17:55 --> 17:56of that cancer and for
17:56 --> 17:57any of the side effects
17:57 --> 17:59and counsel around
17:59 --> 18:01late effects as well.
18:02 --> 18:04Usually, about two years
18:04 --> 18:06after they've completed therapy, we
18:06 --> 18:08will also refer them to
18:08 --> 18:10our dedicated survivorship clinic for
18:10 --> 18:11some added counseling
18:12 --> 18:13and guidance around
18:14 --> 18:15specific late effects to be
18:15 --> 18:16aware of.
18:17 --> 18:19And then at about five
18:19 --> 18:20years out, we can often
18:20 --> 18:22start to see patients once
18:22 --> 18:23a year in our clinic and
18:25 --> 18:26try to transition, especially for
18:26 --> 18:28those adolescents and young adults,
18:28 --> 18:29you know, people that are
18:29 --> 18:31at college or working, etcetera,
18:32 --> 18:33who may have some difficulty
18:33 --> 18:35coming to appointments regularly, we
18:35 --> 18:36try to transition some of
18:36 --> 18:38that care to primary care
18:38 --> 18:39providers.
18:40 --> 18:42And what I will say
18:42 --> 18:44is that different primary care
18:44 --> 18:46providers have differing levels of
18:46 --> 18:47comfort with that.
18:48 --> 18:50So some feel perfectly fine
18:50 --> 18:51with receiving the
18:51 --> 18:53guidelines and managing the sort
18:53 --> 18:54of long term care,
18:55 --> 18:57and others aren't as familiar
18:57 --> 18:58with that. And that's very
18:58 --> 19:00understandable. And so that's why
19:00 --> 19:02the survivorship clinic exists to
19:02 --> 19:03be able to help support
19:04 --> 19:05those primary care doctors in
19:05 --> 19:06that multidisciplinary
19:06 --> 19:08way.
19:08 --> 19:09Primary care doctors are
19:09 --> 19:10under a great deal of
19:10 --> 19:12stress these days. They have
19:12 --> 19:14fifteen minutes to
19:14 --> 19:15see a patient and
19:17 --> 19:19I think over time,
19:19 --> 19:19it's
19:20 --> 19:21probably likely
19:21 --> 19:23that they'll be less and
19:23 --> 19:24less comfortable in this
19:24 --> 19:25arena.
19:25 --> 19:28That's right. But, we'll see.
19:29 --> 19:30As we
19:30 --> 19:32segue into your research, I
19:32 --> 19:34just wanna ask one other
19:34 --> 19:34question
19:35 --> 19:37that's more general, which is
19:37 --> 19:38about the families
19:40 --> 19:41and what this is like
19:41 --> 19:43for a family. I mean,
19:44 --> 19:46I can only imagine
19:47 --> 19:48as a parent
19:48 --> 19:49what it would be like
19:49 --> 19:51to have my child diagnosed
19:51 --> 19:53with any serious illness
19:53 --> 19:54and in particular
19:55 --> 19:55cancer.
19:58 --> 19:59Well, it's as you
20:00 --> 20:01stated, it's unimaginably
20:02 --> 20:03difficult for families.
20:04 --> 20:06We know that cancer
20:06 --> 20:06treatment
20:07 --> 20:07disrupts
20:08 --> 20:10family financial,
20:11 --> 20:12stability.
20:13 --> 20:15Sometimes families experience food and
20:15 --> 20:16housing instability.
20:17 --> 20:19You know, many families
20:19 --> 20:20can't work.
20:22 --> 20:23The other children in
20:23 --> 20:25the household will be
20:26 --> 20:26undoubtedly
20:27 --> 20:29affected, and so it is
20:29 --> 20:30a whole family
20:30 --> 20:31disruption.
20:33 --> 20:35And when you talk to someone
20:35 --> 20:36who had a sibling with
20:36 --> 20:37cancer
20:37 --> 20:38as an adult,
20:39 --> 20:41I've always
20:41 --> 20:42been struck that so
20:42 --> 20:44much a part of their childhood
20:44 --> 20:46is their sibling who had
20:46 --> 20:48the cancer no matter
20:48 --> 20:49what happened with that sibling.
20:50 --> 20:51Right. I mean, it is
20:51 --> 20:52a whole family
20:52 --> 20:54experience. And in part, I
20:54 --> 20:55think for a lot of
20:55 --> 20:56us who work in this
20:56 --> 20:56world,
20:57 --> 20:59this is what is both
20:59 --> 21:02most challenging about this work
21:02 --> 21:02and
21:03 --> 21:04the most inspiring.
21:04 --> 21:05I mean, I went
21:05 --> 21:07into this field primarily because
21:07 --> 21:08it was such a beautiful
21:08 --> 21:10opportunity to be able to
21:10 --> 21:12shepherd families through their treatment
21:12 --> 21:14and to sit with them
21:14 --> 21:15in their grief,
21:15 --> 21:16and really
21:17 --> 21:19be a part of an
21:19 --> 21:21extremely difficult experience for
21:21 --> 21:22many families.
21:23 --> 21:24And that longitudinal
21:25 --> 21:27relationship is really, really important
21:27 --> 21:28and very fulfilling.
21:30 --> 21:30So
21:31 --> 21:32the good news
21:33 --> 21:34is most children with cancer
21:35 --> 21:36survive,
21:36 --> 21:38and the majority of those
21:39 --> 21:41survive well and go on
21:41 --> 21:42and lead
21:43 --> 21:44very full lives.
21:45 --> 21:46The
21:46 --> 21:48bad news is that some
21:48 --> 21:49of them don't. It's a
21:49 --> 21:51small proportion, but they exist.
21:52 --> 21:54And your research has focused
21:54 --> 21:54on
21:55 --> 21:56how we care
21:56 --> 21:57for those
21:58 --> 22:00patients and families, those children
22:00 --> 22:01and families
22:02 --> 22:02where
22:03 --> 22:05cure is no longer possible.
22:06 --> 22:08Tell us about that if
22:08 --> 22:08you would.
22:12 --> 22:13As I mentioned
22:13 --> 22:15earlier that I was really
22:15 --> 22:15inspired
22:16 --> 22:17largely by a mentor
22:18 --> 22:19and then, of course, clinical
22:20 --> 22:20experiences.
22:20 --> 22:22So when I was in
22:22 --> 22:23training for pediatric
22:24 --> 22:26hematology and oncology, I had
22:26 --> 22:27a number of experiences
22:27 --> 22:29of children with advanced or
22:29 --> 22:30incurable cancer
22:31 --> 22:33who had really difficult
22:34 --> 22:35and contentious
22:36 --> 22:37last weeks and months of
22:37 --> 22:38life. So there was
22:39 --> 22:40disagreement between the
22:40 --> 22:41care team and the family
22:41 --> 22:43or between the patient and
22:43 --> 22:44the family,
22:44 --> 22:45and those
22:46 --> 22:46experiences
22:47 --> 22:48kept occurring.
22:48 --> 22:50And it really made me
22:51 --> 22:52think about what
22:53 --> 22:53good
22:54 --> 22:55end of life care looks
22:55 --> 22:57like, what good advanced cancer
22:57 --> 22:58care looks like. And we
22:58 --> 23:00are talking about a very
23:00 --> 23:02small proportion of patients, fifteen
23:02 --> 23:03percent to twenty percent of
23:04 --> 23:06kids with cancer will not
23:06 --> 23:06be cured.
23:07 --> 23:09And we also now have,
23:09 --> 23:10as I mentioned earlier, a
23:10 --> 23:12lot of targeted therapies, a
23:12 --> 23:14lot of novel treatments that
23:14 --> 23:15help these children
23:15 --> 23:17live for a very long
23:17 --> 23:18time with a high quality
23:18 --> 23:20of life or a reasonable
23:20 --> 23:21quality of life.
23:21 --> 23:22But
23:22 --> 23:24I really focus my research
23:25 --> 23:26in this area of
23:27 --> 23:29where are the gaps in
23:29 --> 23:30the provision of
23:31 --> 23:32care for these children with
23:32 --> 23:34advanced cancer? Where can we
23:34 --> 23:35do better?
23:38 --> 23:38And
23:40 --> 23:41are the problems at the
23:41 --> 23:42end of life
23:43 --> 23:46more prominent in older children,
23:48 --> 23:50where
23:50 --> 23:51the patient,
23:52 --> 23:54him or herself, is trying
23:54 --> 23:54to
23:55 --> 23:56take more control?
23:58 --> 23:59I wouldn't say that it's
23:59 --> 24:01more prominent in older children,
24:01 --> 24:02but I do think that
24:02 --> 24:04the problems and the challenges
24:04 --> 24:06are different. As adolescents and
24:06 --> 24:07young adults,
24:08 --> 24:09increase their sense of agency
24:12 --> 24:13and become more independent,
24:14 --> 24:15there is
24:15 --> 24:17another layer to
24:18 --> 24:20decision making and shared decision
24:20 --> 24:21making. So I do think it
24:23 --> 24:24adds some complexity.
24:25 --> 24:27And there are a lot
24:27 --> 24:29of amazing investigators who are
24:29 --> 24:31focusing their work on trying
24:31 --> 24:33to improve advanced cancer care
24:33 --> 24:34for adolescents and young adults.
24:34 --> 24:36I've mostly focused my research
24:36 --> 24:38on younger children in order
24:38 --> 24:39to sort of carve out
24:39 --> 24:40a niche for myself.
24:41 --> 24:42That being said, a lot
24:42 --> 24:43of what we've learned in
24:43 --> 24:46our research applies to older
24:46 --> 24:48adolescents and young adults.
24:48 --> 24:50And so one could imagine
24:50 --> 24:52that you could make
24:54 --> 24:55that end of life care
24:55 --> 24:56easier
24:56 --> 24:59by preparing people more. On
24:59 --> 25:00the other hand, when someone
25:00 --> 25:01is newly diagnosed,
25:02 --> 25:03talking about
25:04 --> 25:05not doing well is not
25:05 --> 25:07exactly what they wanna hear.
25:08 --> 25:09So there's a limitation
25:10 --> 25:11there, I would imagine.
25:12 --> 25:13Yeah. I mean a lot
25:13 --> 25:14of these
25:16 --> 25:16conversations
25:17 --> 25:19are a process.
25:20 --> 25:21It is very
25:22 --> 25:24rare that we would tell
25:24 --> 25:26someone at the initial diagnosis
25:26 --> 25:28that their cancer is not
25:28 --> 25:28curable,
25:29 --> 25:31with a few exceptions. There
25:31 --> 25:32are some
25:33 --> 25:35brain tumors, for example, that
25:35 --> 25:37are universally, unfortunately,
25:37 --> 25:38not curable. And so we
25:38 --> 25:40can extend life, but we
25:40 --> 25:41can't necessarily cure.
25:42 --> 25:43And so I really
25:44 --> 25:46value honesty and truth telling
25:46 --> 25:47in my
25:48 --> 25:48communication and
25:50 --> 25:52that approach has really been
25:52 --> 25:54bolstered by all of the
25:54 --> 25:55experiential
25:56 --> 25:56learning,
25:57 --> 25:58and learning from masters in
25:58 --> 25:59palliative care,
26:00 --> 26:00honestly.
26:01 --> 26:02I am not a clinical
26:03 --> 26:04palliative care practitioner.
26:05 --> 26:06That being said, there's a
26:06 --> 26:07lot that we can learn
26:07 --> 26:09as clinicians who take
26:09 --> 26:11care of children with serious
26:11 --> 26:12illness, we can learn a
26:12 --> 26:13ton from the ways in
26:13 --> 26:16which pediatric palliative care clinicians
26:16 --> 26:16communicate.
26:17 --> 26:19But you are very
26:19 --> 26:20much the one who's
26:21 --> 26:23walking that journey with the
26:23 --> 26:24patient and family.
26:24 --> 26:25That's right. And
26:26 --> 26:27introducing
26:27 --> 26:28ideas about
26:29 --> 26:30maybe cure isn't possible
26:31 --> 26:33when that comes up.
26:33 --> 26:34I mean, I often
26:34 --> 26:36and I have, of course,
26:36 --> 26:37a very different experience as
26:37 --> 26:39an adult cancer doctor.
26:40 --> 26:42But I generally find that
26:43 --> 26:44over time as you
26:45 --> 26:47go through an illness with
26:47 --> 26:48a patient that
26:49 --> 26:51as a doctor and as
26:51 --> 26:53a patient, you're often in
26:53 --> 26:54sync. And
26:54 --> 26:56that's the ideal situation, of
26:56 --> 26:57course.
26:58 --> 26:59Yeah. I mean, I think
26:59 --> 27:00that
27:01 --> 27:03the research shows that
27:03 --> 27:04pediatric oncologists
27:05 --> 27:07are variable in their ability
27:07 --> 27:08to kind of walk that
27:08 --> 27:09journey and be honest.
27:12 --> 27:14It can be really challenging,
27:14 --> 27:15and it's sort of interesting
27:15 --> 27:17being in sort of both
27:17 --> 27:18worlds, being a pediatric
27:18 --> 27:20palliative care researcher as well
27:20 --> 27:21as a pediatric oncologist.
27:22 --> 27:23I know that it's really
27:23 --> 27:25difficult to have honest conversations
27:25 --> 27:27about the curability or lack
27:27 --> 27:29of curability of a particular
27:29 --> 27:29cancer.
27:30 --> 27:31And at the same and
27:31 --> 27:32I know that a lot
27:32 --> 27:33of my peers in pediatric
27:33 --> 27:35oncology struggle with that tension.
27:36 --> 27:38At the same time, we
27:38 --> 27:40also know that preparation is
27:40 --> 27:41better, honesty
27:41 --> 27:42is better.
27:44 --> 27:46And being very, very forthright
27:46 --> 27:47about prognosis
27:48 --> 27:50helps families prepare, helps families
27:50 --> 27:51grieve,
27:52 --> 27:54and helps them long term
27:54 --> 27:54in their bereavement.
27:56 --> 27:57And have you or others
27:58 --> 27:58studied
27:59 --> 28:00interventions
28:01 --> 28:03for the pediatric
28:03 --> 28:04oncologists
28:04 --> 28:05as a way of helping
28:06 --> 28:07to improve end of life
28:07 --> 28:09care for children and families?
28:10 --> 28:12So my research is not
28:12 --> 28:14intervention focused, but there are
28:14 --> 28:16a number of people who
28:16 --> 28:18are very interested in trying
28:18 --> 28:20to intervene on the style
28:20 --> 28:21of communication.
28:22 --> 28:24So communication research is a huge
28:26 --> 28:28and impactful area of research
28:28 --> 28:28in our world.
28:29 --> 28:31Doctor Prasanna Ananth is an
28:31 --> 28:33associate professor of pediatrics and
28:33 --> 28:35hematology oncology at the Yale
28:35 --> 28:36School of Medicine.
28:36 --> 28:37If you have questions, the
28:37 --> 28:39address is cancer answers at
28:39 --> 28:40yale dot edu,
28:41 --> 28:42and past editions of the
28:42 --> 28:43program are available in audio
28:43 --> 28:45and written form at yale
28:45 --> 28:46cancer center dot org
28:46 --> 28:47we hope you'll join us
28:47 --> 28:48next time to learn more
28:48 --> 28:50about the fight against cancer
28:50 --> 28:52funding for Yale Cancer Answers
28:52 --> 28:54is provided by Smilow Cancer
28:54 --> 28:54Hospital.

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Healing and Hope in Pediatric Cancer Care with guest Dr. Prasanna Ananth January 26, 2025

Yale Cancer Center

visit: http://www.yalecancercenter.org

email: canceranswers@yale.edu

call: 203-785-4095

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Dr. Prasanna Ananth

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