Healing and Hope in Pediatric Cancer Care

Name: Healing and Hope in Pediatric Cancer Care
Uploaded: 2025-01-27T13:47:03.61Z
Duration: 29 min

January 27, 2025

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