Navigating Cancer as a Young Adult

Transcript

00:00 --> 00:03Funding for Yale Cancer Answers is
00:03 --> 00:06provided by Smilow Cancer Hospital.
00:06 --> 00:08Welcome to Yale Cancer Answers
00:08 --> 00:10with Doctor Anees Chagpar.
00:10 --> 00:11Yale Cancer Answers features
00:11 --> 00:13the latest information on cancer
00:13 --> 00:15care by welcoming oncologists and
00:15 --> 00:17specialists who are on the forefront
00:17 --> 00:19of the battle to fight cancer.
00:19 --> 00:21This week it's a conversation about
00:21 --> 00:22Ewing Sarcoma with Doctor Hari
00:22 --> 00:24Deshpande and his patient, Julia.
00:24 --> 00:26Doctor Deshpande is an associate
00:26 --> 00:28professor of medicine and medical
00:28 --> 00:30oncology at the Yale School of
00:30 --> 00:32Medicine where Doctor Chagpar is
00:32 --> 00:34a professor of surgical oncology.
00:35 --> 00:38Julia, maybe we can start off by you
00:38 --> 00:40telling us a little bit about yourself
00:40 --> 00:43and your story.
00:43 --> 00:46Absolutely. I feel honored to be here.
00:46 --> 00:49So thank you so much.
00:49 --> 00:52I'm a 30 year old woman.
00:52 --> 00:57I was diagnosed with Ewing Sarcoma in 2015,
00:57 --> 01:03so quite a while ago and
01:03 --> 01:08it was to my surprise, I was in
01:08 --> 01:10PA school, physician assistant school,
01:10 --> 01:15I was in my graduate year and had
01:15 --> 01:19been having some pain for a while and
01:19 --> 01:24I got a work up and got the
01:24 --> 01:26diagnosis, had to take off about a year
01:26 --> 01:31and a half of school to do upfront
01:31 --> 01:35therapy and that was very difficult
01:35 --> 01:40you know, being 22, starting my career
01:40 --> 01:43to be a PA and I was so excited and
01:43 --> 01:46and this threw a big
01:46 --> 01:50wrench in my life
01:50 --> 01:53plans as a cancer diagnosis often does.
01:56 --> 02:00So at that point I started my therapy
02:00 --> 02:03at Yale in the pediatric
02:03 --> 02:06world because it's a pediatric
02:06 --> 02:08cancer and a young adult cancer
02:08 --> 02:10but often in younger children.
02:11 --> 02:15So I did that therapy and
02:15 --> 02:17then there were
02:17 --> 02:19more bumps along the road.
02:19 --> 02:24There were multiple relapses and while
02:24 --> 02:27I was having these relapses I decided
02:27 --> 02:31to go back to school and get my degree.
02:31 --> 02:34So I finish and
02:34 --> 02:36became a physician assistant.
02:36 --> 02:40So that was really a very proud part
02:40 --> 02:45of my journey and then as things
02:45 --> 02:48progressed I started to incorporate
02:48 --> 02:51my cancer as part of my life
02:51 --> 02:53instead of something that hindered
02:53 --> 02:56my life. And so I decided that I
02:56 --> 02:58really wanted to work in oncology.
02:58 --> 03:01So I got
03:01 --> 03:04my first job at Mass General
03:04 --> 03:08in pediatric radiation oncology.
03:08 --> 03:10and I've worked there for several years at
03:10 --> 03:13the beginning of my career while
03:13 --> 03:16getting my treatment and so as things
03:16 --> 03:19had progressed there were many
03:19 --> 03:22bumps along the road
03:22 --> 03:24as many cancer patients experience
03:24 --> 03:29and many relapses.
03:29 --> 03:33And this was about a year or so
03:33 --> 03:36ago and there was a a pretty big shock to
03:36 --> 03:38everybody and that was when I contacted Dr.
03:38 --> 03:41Deshpande because the
03:41 --> 03:44cancer had spread to my brain and so
03:44 --> 03:47that was a pretty shocking moment in my life.
03:47 --> 03:52Again was was halted pretty severely and Dr.
03:52 --> 03:55Deshpande was there and surprised
03:55 --> 04:00supported me and and he's a
04:00 --> 04:01really special man
04:04 --> 04:06that's that's fantastic and and
04:06 --> 04:09Doctor Deshpande Hari I want to bring
04:09 --> 04:12you into this conversation just to
04:12 --> 04:15kind of flesh out a little bit more
04:15 --> 04:17about what exactly is Ewing sarcoma.
04:17 --> 04:21So can you kind of tell us what it is
04:21 --> 04:24and a bit about the demographic that
04:24 --> 04:27is affected by it and how it presents
04:29 --> 04:30Yes. So thank you, Anise.
04:30 --> 04:33It's, it's nice to see you again
04:33 --> 04:36and it's great to see Julia here.
04:36 --> 04:37It's a rare disease.
04:37 --> 04:39So it's not quite one in a million,
04:40 --> 04:42but it's probably two or three in a million.
04:42 --> 04:47So it's not surprising that
04:47 --> 04:48people haven't heard of it.
04:48 --> 04:50And even when you're at PA school,
04:50 --> 04:52it's probably not high on your list
04:52 --> 04:55of lectures that you hear about.
04:55 --> 04:57But Julia's absolutely correct.
04:57 --> 04:59It's mainly a disease of
04:59 --> 05:01children and young adults.
05:01 --> 05:02In children,
05:02 --> 05:07it's almost always a disease of the bone.
05:07 --> 05:08In other words,
05:08 --> 05:10it starts in one of the bones.
05:10 --> 05:12In adults, it can be either,
05:12 --> 05:15it can start either in the bone or
05:15 --> 05:17in what we call the soft tissue.
05:17 --> 05:20So that's other areas of the body.
05:20 --> 05:23And if it does occur in the bone,
05:23 --> 05:25and you may remember this from your
05:25 --> 05:27medical school lectures, Anesic,
05:27 --> 05:30it can have a very characteristic appearance.
05:30 --> 05:32We call it an onion skinning
05:32 --> 05:34appearance in the shaft.
05:34 --> 05:37So, but it really,
05:37 --> 05:40it's difficult to predict where
05:40 --> 05:43it's going to occur and who it's
05:43 --> 05:45going to occur and it doesn't
05:45 --> 05:47seem to have a specific cause,
05:47 --> 05:49some cancers that we see.
05:49 --> 05:51We can say oh,
05:51 --> 05:53this runs in your family or you got
05:53 --> 05:55this because you work around nuclear
05:55 --> 05:57material or something like that.
05:57 --> 05:59But that's not really the case with Ewings.
06:00 --> 06:02And. And so Julia, you know,
06:02 --> 06:04when you were telling your story,
06:04 --> 06:05you had mentioned that
06:05 --> 06:07this started with pain.
06:07 --> 06:09Can you tell us a little bit more?
06:09 --> 06:12I mean, certainly when you're 30 years old,
06:12 --> 06:15you know, you're, you're APA student,
06:15 --> 06:18I can't imagine that you were thinking,
06:18 --> 06:21you know, if I have some sort of pain,
06:21 --> 06:23this is going to be a Ewing sarcoma.
06:23 --> 06:25So can you tell us a little bit
06:25 --> 06:26more about what was this pain,
06:26 --> 06:28where was this pain and and what
06:28 --> 06:30actually brought you to the doctor
06:30 --> 06:32cause many of us I would think
06:32 --> 06:34would shrug that kind of stuff off.
06:35 --> 06:39Absolutely. I I I second what doctor
06:39 --> 06:41Deshpande says about not learning
06:41 --> 06:43much about ewings in PA school.
06:43 --> 06:45I don't, I don't even know
06:45 --> 06:46if we learned of about it.
06:46 --> 06:49So it wasn't on my mind.
06:49 --> 06:53But I so at at 22 I I was not it
06:53 --> 06:55was definitely not on my mind
06:55 --> 06:58when I was having some pretty
06:58 --> 07:00severe pain in my right hip.
07:00 --> 07:03But it presented as a sciatica
07:03 --> 07:04type of presentation.
07:04 --> 07:07So some numbness kind of down
07:07 --> 07:10my leg and in my glute muscle.
07:10 --> 07:12And so that that it started kind of
07:12 --> 07:15vague and it would be on and off.
07:15 --> 07:16And so I started physical therapy,
07:16 --> 07:20which is often the the case.
07:20 --> 07:23This kind of typical course of,
07:23 --> 07:25I think, I'm sure Doctor Spondee
07:25 --> 07:26would agree that you know,
07:26 --> 07:28usually they see, you know,
07:28 --> 07:30you go to physical therapy and you kind
07:30 --> 07:33of do exercises and see if it gets better.
07:33 --> 07:35And it did get better for a bit and
07:35 --> 07:37then it got worse again and then
07:37 --> 07:40it got better and it got worse and
07:40 --> 07:42that that was about nine months.
07:42 --> 07:45And they saw orthopedic an orthopedist
07:45 --> 07:50who had diagnosed piriformis syndrome
07:50 --> 07:54like which is again you know something
07:54 --> 07:57that would would be relieved with
07:57 --> 07:59with stretching and and exercises.
07:59 --> 08:00So I would start to do
08:00 --> 08:02those and it didn't improve.
08:02 --> 08:07So actually a rheumatologist he he
08:07 --> 08:10was the one who had done a a very
08:10 --> 08:12thorough exam and ordered the the
08:12 --> 08:15first image and that was nine months
08:15 --> 08:17after the the beginning of my pain.
08:17 --> 08:19So I finally got an image,
08:19 --> 08:22and the image showed the tumor
08:22 --> 08:25in my right pelvis and at the I
08:25 --> 08:27was metastatic A diagnosis.
08:27 --> 08:31So it had spread to my lungs at that time,
08:31 --> 08:34likely because of the length of
08:34 --> 08:38time it took to to to to find it.
08:38 --> 08:39So again,
08:39 --> 08:43you know that vague type of pain
08:43 --> 08:45could be many things, right?
08:45 --> 08:48We think of a we don't think of the
08:48 --> 08:50zebra you know all the time And so
08:52 --> 08:55I I think that there's it's I look back
08:55 --> 09:00on that time and and I I have of course
09:00 --> 09:02feelings about wishing I had pushed
09:02 --> 09:05for an image but it it wasn't really
09:05 --> 09:08standard of care to do that. Yeah.
09:09 --> 09:11So, Hari, can we pick up on this
09:11 --> 09:13conversation in, in the sense that,
09:13 --> 09:15you know, understandably, right.
09:15 --> 09:18You would think common things being common,
09:18 --> 09:19this is going to be, you know,
09:19 --> 09:21a muscle pull is going to
09:21 --> 09:22be piriformis syndrome,
09:22 --> 09:23it may even be sciatica.
09:23 --> 09:26You should do physical therapy.
09:26 --> 09:30Is there often a delay in that diagnosis
09:30 --> 09:34and how is the diagnosis actually made?
09:35 --> 09:37Yeah. No, I think both you
09:37 --> 09:39and Julia just picked up on,
09:39 --> 09:41on the main problem with this
09:41 --> 09:43presentation is that it is a very,
09:43 --> 09:44very rare disease.
09:44 --> 09:48And so when you see people who don't see
09:48 --> 09:51this every day or may not ever see this,
09:51 --> 09:54then it's not something they're thinking of.
09:54 --> 09:59And that's why I it's important really
09:59 --> 10:01in in all of medicine if something
10:01 --> 10:03doesn't get better in a time frame
10:03 --> 10:05that you expect it to get better,
10:05 --> 10:08it is worth taking a look to see
10:08 --> 10:11whether it's something else.
10:11 --> 10:13But that's a very general statement
10:13 --> 10:16and that time frame is it can be
10:16 --> 10:18a very long time unfortunately.
10:18 --> 10:22But if you are thinking about either
10:22 --> 10:25Ewing sarcoma or another what we
10:25 --> 10:28call a primary cancer of the bone
10:28 --> 10:31or even any abnormality in the bone,
10:31 --> 10:34the first thing that we really want to
10:34 --> 10:38do to make a diagnosis is to get a biopsy.
10:38 --> 10:40So, and this can be done in
10:40 --> 10:40many different ways,
10:40 --> 10:44but the most common is to somehow get
10:44 --> 10:48a needle into the area of concern,
10:48 --> 10:50get a small piece of tissue which
10:50 --> 10:53our pathologists can then look over
10:53 --> 10:55and hopefully make a diagnosis.
10:55 --> 11:01The the problem with sarcomas in general
11:01 --> 11:04is sometimes the if any surgery is
11:04 --> 11:07going to be done after the biopsy,
11:07 --> 11:09then they have to not just
11:09 --> 11:11remove the lesion itself,
11:11 --> 11:15but remove the entire biopsy tract.
11:15 --> 11:16So in other words,
11:16 --> 11:18if the needle goes into the skin and
11:18 --> 11:21then through the muscle and to the bone,
11:21 --> 11:23they have to reset that whole
11:23 --> 11:25area that the needle went through
11:25 --> 11:28if they're going to do surgery.
11:28 --> 11:32And so we have a special radiology
11:32 --> 11:34service which many tertiary centres
11:34 --> 11:36have who are very experienced
11:36 --> 11:38in doing these biopsies.
11:38 --> 11:41And and that's what they will do to
11:41 --> 11:43make sure they do it in the safest
11:43 --> 11:46but also the best possible way
11:46 --> 11:48presumably a,
11:48 --> 11:52a bone biopsy doesn't tickle.
11:52 --> 11:54Is that done under anaesthesia?
11:54 --> 11:56I mean it, it sounds like it's
11:56 --> 11:57certainly not something that
11:57 --> 11:59you would do in the office.
11:59 --> 12:00It depends what kind
12:00 --> 12:03of bone biopsy. So in my earlier
12:03 --> 12:06days I I used to see some hematology
12:06 --> 12:08patients and a bone marrow
12:08 --> 12:10biopsy can be done in the office.
12:10 --> 12:12And I would say most of our
12:12 --> 12:14biopsies are done as an outpatient.
12:14 --> 12:17For someone like Julia who we're
12:17 --> 12:19looking at a particular area,
12:19 --> 12:23then you do have to use a type of
12:23 --> 12:24guided biopsy, in other words,
12:24 --> 12:27some kind of imaging to guide the
12:27 --> 12:29biopsy needle where it's going to go.
12:30 --> 12:31And and I can't remember Julia,
12:31 --> 12:32what they used with you.
12:32 --> 12:33Do you remember,
12:33 --> 12:36was it a CAT scan or an ultrasound?
12:36 --> 12:37But that's usually the,
12:38 --> 12:40I think it was on ultrasound.
12:40 --> 12:42Yeah, that's typically how we do it.
12:43 --> 12:47Julia had mentioned that her cancer was
12:47 --> 12:50metastatic at the time of her diagnosis.
12:50 --> 12:53So Julia where had it spread
12:53 --> 12:55by the time it was diagnosed?
12:56 --> 12:59At the time of diagnosis it
12:59 --> 13:01had spread to my lungs.
13:01 --> 13:04I had a couple lung nodules which
13:07 --> 13:09doctor Deshpande will comment on,
13:09 --> 13:12but I think is very commonplace
13:12 --> 13:14that the sarcoma will spread to.
13:14 --> 13:17So there weren't any other organs and
13:17 --> 13:20I did have a bone marrow biopsy that
13:20 --> 13:22he had mentioned which was negative.
13:22 --> 13:25So the primary tumor had spread
13:25 --> 13:28to the lungs only at that time.
13:28 --> 13:30Well, we need to take a short
13:30 --> 13:32break for a medical minute,
13:32 --> 13:34but please stay tuned to learn
13:34 --> 13:35more about Julia's story and
13:35 --> 13:38Ewing Sarcoma with my guests Dr.
13:38 --> 13:40Hari, Deshpande and Julia.
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13:59 --> 14:02obstacles to face when quitting smoking as
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14:09 --> 14:12cancer treatment as it's been shown to
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14:45 --> 14:49You're listening to Connecticut Public Radio.
14:49 --> 14:49Welcome
14:49 --> 14:52back to Yale Cancer Answers.
14:52 --> 14:53This is Doctor Anees Chagpar,
14:53 --> 14:56and I'm joined tonight by my guests
14:56 --> 14:58Doctor Hari Deshpande and Julia.
14:58 --> 15:00Now we're talking about Julia's
15:00 --> 15:02cancer journey with Ewing Sarcoma.
15:02 --> 15:04And right before the break,
15:04 --> 15:05Julia was mentioning that
15:05 --> 15:08her pain was in her hip.
15:08 --> 15:10They thought it might be sciatica,
15:10 --> 15:12might be piriformis syndrome.
15:12 --> 15:14Ultimately, A rheumatologist
15:14 --> 15:16sent her for some imaging.
15:16 --> 15:18She had a biopsy and ultimately
15:18 --> 15:20was diagnosed with Ewing sarcoma.
15:20 --> 15:23But by the time she was diagnosed,
15:23 --> 15:26it had already spread to her lungs.
15:26 --> 15:28So Hari, is that common that
15:28 --> 15:32at the time of diagnosis most
15:32 --> 15:34patients are already metastatic?
15:36 --> 15:37You know that's a good question.
15:37 --> 15:40I don't know the exact numbers.
15:40 --> 15:43We do see patients who it's
15:43 --> 15:44what we call localised.
15:44 --> 15:46So it hasn't spread anywhere.
15:46 --> 15:48But if it is going to spread,
15:48 --> 15:51then the first place it usually spreads
15:51 --> 15:55to is the lung, just as Julia says.
15:55 --> 15:57And with bone sarcomas,
15:57 --> 16:00we actually have different stages
16:00 --> 16:02that you people listening have
16:02 --> 16:04probably heard of stages of cancer.
16:04 --> 16:09And with sarcomas, we have a stage
16:09 --> 16:114 if it's spread to the lungs,
16:11 --> 16:14but it's 4A if it's spread to the lungs,
16:14 --> 16:17whereas it's 4B if it spreads somewhere else.
16:17 --> 16:19And the reason we do that is
16:19 --> 16:21even if it's spread to the lungs,
16:21 --> 16:24we still treat very, very aggressively.
16:24 --> 16:25As Julia said,
16:25 --> 16:28she got over a year of chemotherapy
16:28 --> 16:31and other treatments as well.
16:31 --> 16:34And that's because we know that people like
16:34 --> 16:37her can get treatment and do well for years.
16:37 --> 16:40So that's it's not like other
16:40 --> 16:42cancers where if it has spread
16:42 --> 16:45to the lungs from somewhere else,
16:45 --> 16:48then we may be scaling back on
16:48 --> 16:50treatments because we're not
16:50 --> 16:52sure how well they'll do with
16:52 --> 16:53very aggressive treatments.
16:54 --> 16:55Yeah. And so, Julia,
16:55 --> 16:59I can only imagine what it must have
16:59 --> 17:03felt like being 22 in PA school and being
17:03 --> 17:07told that you had metastatic sarcoma.
17:07 --> 17:09Can you talk a little bit about
17:09 --> 17:12kind of how you felt at that moment?
17:12 --> 17:15I mean, was this despondent?
17:15 --> 17:16Was it optimistic?
17:16 --> 17:18And I'm going to fight.
17:18 --> 17:20What was your emotional
17:20 --> 17:23response to this diagnosis?
17:23 --> 17:25Yeah, I, you know,
17:25 --> 17:28I I think I I oscillated back and
17:28 --> 17:31forth between many different emotions.
17:31 --> 17:34Anger is not a very common or
17:34 --> 17:36a familiar emotion for me.
17:36 --> 17:40So I would say probably sadness and fear.
17:40 --> 17:45And I have a close friend who's
17:45 --> 17:49a childhood cancer survivor who
17:49 --> 17:52really stepped up for me and
17:52 --> 17:54was kind of my main support.
17:54 --> 17:57And it was enormously helpful.
17:57 --> 18:01I had, I had a a tribe, you know,
18:01 --> 18:02for lack of a better word.
18:02 --> 18:04And these and people, they,
18:04 --> 18:07my girlfriends came together and when my
18:07 --> 18:11blood counts were OK and safe to go places,
18:11 --> 18:14they would throw a head wrap on like me.
18:14 --> 18:16And we would all go somewhere safe,
18:16 --> 18:16you know,
18:16 --> 18:18go to a restaurant or something.
18:18 --> 18:20And we all would would have had wraps on.
18:20 --> 18:23So I didn't have to feel different.
18:23 --> 18:25And it was those little things
18:25 --> 18:28that made an enormous difference in
18:28 --> 18:30that year and a half of treatment.
18:30 --> 18:35And I had to relocate for some
18:35 --> 18:37radiation up to Boston.
18:37 --> 18:40And that was a difficult part of
18:40 --> 18:41the journey for me,
18:41 --> 18:45knowing that I was leaving my support system,
18:45 --> 18:48my family and my friends and they
18:48 --> 18:50travelled at least twice a month up
18:50 --> 18:52there to do the same thing and you know,
18:52 --> 18:55bring bring my spirits up.
18:55 --> 18:59And and I do remember specifically just
18:59 --> 19:05feeling that love kind of, it didn't make,
19:05 --> 19:06didn't make the fear go away,
19:06 --> 19:10but it felt a whole lot less lonely.
19:10 --> 19:13And so I'm forever grateful for the
19:13 --> 19:17time and effort that that my tribe,
19:17 --> 19:17you know,
19:17 --> 19:20put in for me and I wouldn't be
19:20 --> 19:21where I am today without them.
19:21 --> 19:23So yeah,
19:23 --> 19:24I think, I think we all,
19:24 --> 19:26we all need a tribe,
19:26 --> 19:28whether we're going through cancer
19:28 --> 19:30or or anything else in our lives.
19:30 --> 19:32But particularly when you're
19:32 --> 19:34facing that kind of a diagnosis,
19:34 --> 19:38that's scary. And you know,
19:38 --> 19:40just knowing that you've got people
19:40 --> 19:43around you who love you and care for you
19:43 --> 19:46and we'll go through that with you or at
19:46 --> 19:49least stand by you as you go through it,
19:49 --> 19:52so that you're not alone is so important.
19:52 --> 19:54Hari, can you talk a little
19:54 --> 19:56bit about the treatment itself?
19:56 --> 19:59I mean, on this show we talk a lot about
19:59 --> 20:01different modalities of treatment,
20:01 --> 20:02whether it's surgery,
20:02 --> 20:03radiation, chemotherapy,
20:03 --> 20:08immunotherapy and we talk about
20:08 --> 20:10this multidisciplinary kind
20:10 --> 20:13of approach to to cancers.
20:13 --> 20:16Can you can you talk a little
20:16 --> 20:19bit about how sarcomas and Ewing
20:19 --> 20:22sarcoma in particular are treated?
20:23 --> 20:26Yes. So I'm glad you mentioned
20:26 --> 20:27the multidisciplinary approach.
20:27 --> 20:32We have a tumour board which meets
20:32 --> 20:37once a week and any patients who we see
20:37 --> 20:40either if they're seen by the surgeon
20:40 --> 20:44or by myself or by one of the radiation
20:44 --> 20:46doctors presented at that meeting.
20:46 --> 20:49And we come up with a treatment plan and
20:49 --> 20:50that can involve just like you said,
20:50 --> 20:53either surgery, radiation or some kind
20:53 --> 20:55of what I call systemic treatment.
20:55 --> 20:59So that could be chemotherapy or
20:59 --> 21:01immunotherapy or a combination
21:01 --> 21:03of two or even three of them.
21:03 --> 21:05And for Ewing Sarcoma,
21:05 --> 21:09I think you have to go back to
21:09 --> 21:12the early 1900s when it was first
21:12 --> 21:15first discovered and named.
21:15 --> 21:20And at that time there were very little
21:20 --> 21:22treatments for it and most people,
21:22 --> 21:24even if it was localized in one area,
21:24 --> 21:27did very, very badly with the disease.
21:27 --> 21:30But then in the 1960s and 70s when
21:30 --> 21:32chemotherapy was being developed,
21:32 --> 21:35they started using it on children
21:35 --> 21:38with different kinds of cancers.
21:38 --> 21:42And Ewing's sarcoma had an A really
21:42 --> 21:45very good response to the initial
21:45 --> 21:47chemotherapy regimens and eventually
21:47 --> 21:50they came up with a treatment that
21:50 --> 21:53was a combination of three different
21:53 --> 21:55chemotherapies all given together
21:55 --> 21:57given every two or three weeks.
21:57 --> 21:59And for the first time,
21:59 --> 22:01people were surviving with Ewing sarcoma.
22:01 --> 22:04It was not seen before.
22:04 --> 22:07And even the people who had a relapse
22:07 --> 22:09after that had a good response
22:09 --> 22:11to a second line treatment.
22:11 --> 22:14And so many people make fun of
22:14 --> 22:16oncologists because they say, well,
22:16 --> 22:18if one medicine doesn't work,
22:18 --> 22:19how about we add another one to it?
22:19 --> 22:21And that's exactly what they did.
22:21 --> 22:23So they gave the first regimen,
22:23 --> 22:25waited 3 weeks and then gave the
22:25 --> 22:27second round treatment and then went
22:27 --> 22:29back to the first round treatment.
22:29 --> 22:32So it's an alternating chemotherapy of
22:32 --> 22:36really very high doses of medications.
22:36 --> 22:37But as a result,
22:37 --> 22:41the survival rates went way up from very,
22:41 --> 22:44very low numbers to many people
22:44 --> 22:46with localised disease doing very,
22:46 --> 22:49very well with the with the condition.
22:49 --> 22:52The downside is it's a long treatment,
22:52 --> 22:55so 48 weeks of chemotherapy is very
22:55 --> 22:58daunting when you're talking to someone,
22:58 --> 22:59especially young people,
22:59 --> 23:01about what they have to face.
23:01 --> 23:07But after that, we often in in between,
23:07 --> 23:09I should say in the middle of that treatment,
23:09 --> 23:11we often do either surgery or
23:11 --> 23:14radiation or both to try and control
23:14 --> 23:16the place where it started.
23:17 --> 23:19And that's typically the treatment
23:19 --> 23:21definitely for localized disease and
23:21 --> 23:24often for metastatic disease as well.
23:24 --> 23:27And so, Julia, it sounds like you started
23:27 --> 23:30on this long journey of chemotherapy.
23:30 --> 23:32I mean 48 weeks, my goodness,
23:32 --> 23:34that's almost a year.
23:34 --> 23:37And and you mentioned that you had
23:37 --> 23:39to relocate for radiation therapy.
23:39 --> 23:41Why? Why was that?
23:41 --> 23:44Was it because the radiation that
23:44 --> 23:46you required wasn't available where
23:46 --> 23:49you were being treated or or is was
23:49 --> 23:51it for a particular clinical trial?
23:51 --> 23:54Can you tell us a little bit more about that?
23:54 --> 23:55Yeah, absolutely.
23:55 --> 23:57So surgery and radiation were
23:57 --> 24:00both on the the table for me.
24:00 --> 24:03However the surgery would be pretty morbid.
24:03 --> 24:07So radiation was was was the the
24:07 --> 24:11choice that we made and I relocated
24:11 --> 24:15because of the location of the tumor.
24:15 --> 24:18And they Boston has something
24:18 --> 24:21called proton beam radiation,
24:21 --> 24:25which is a certain type of radiation that
24:25 --> 24:28can spare surrounding tissues of radiation.
24:28 --> 24:33And given that it was in my pelvis,
24:33 --> 24:35my ovaries are there and
24:35 --> 24:36many other important organs.
24:36 --> 24:38And so the radiation oncologist
24:38 --> 24:41here at Yale had had said,
24:41 --> 24:43you know, I think that this is,
24:43 --> 24:46this is the best type of radiation for
24:46 --> 24:50you and and referred me up to Boston.
24:50 --> 24:50Yeah.
24:51 --> 24:54And Hari, you know Julia had
24:54 --> 24:56mentioned as she was telling her
24:56 --> 24:59story that she had many relapses.
24:59 --> 25:03Is that kind of classic for Ewing sarcoma
25:03 --> 25:06that people will relapse and what are
25:06 --> 25:08their options at that point are are
25:08 --> 25:11there clinical trials that are ongoing?
25:12 --> 25:16Unfortunately, the relapse rate is quite
25:16 --> 25:19high for metastatic Ewing sarcoma.
25:19 --> 25:24We do have other what we call
25:24 --> 25:26salvage treatment options and
25:26 --> 25:29Julia's had some of those already.
25:29 --> 25:30As far as clinical trials,
25:30 --> 25:34I know Julia was on one up in Boston.
25:35 --> 25:38We did have one specifically for Ewing
25:38 --> 25:41sarcoma probably about 10 years ago.
25:41 --> 25:45It did not do very well in terms of
25:45 --> 25:48the results were not very promising
25:48 --> 25:53and I like to keep in touch with my
25:53 --> 25:55colleagues from paediatric oncology.
25:55 --> 25:58As Julia also said earlier,
25:58 --> 26:00this is a disease that affects children
26:00 --> 26:01a little bit more than adults.
26:01 --> 26:04So most of the trials will include
26:04 --> 26:06very young children and they'll
26:06 --> 26:09have an upper age group of 30,
26:09 --> 26:12sometimes up to 50 and I will be
26:12 --> 26:15involved in some of the older patients.
26:15 --> 26:19So at the time that Julie was diagnosed,
26:19 --> 26:22we didn't have an available trial,
26:22 --> 26:26but definitely when one opens,
26:26 --> 26:28Julia will be first on my list.
26:30 --> 26:32So, so Julia, it sounds like you went
26:32 --> 26:36up to Boston, you had your radiation,
26:36 --> 26:39you had more chemotherapy and and then
26:39 --> 26:42it sounds like life was going along well
26:42 --> 26:44and then you relapsed again and again.
26:44 --> 26:47Tell us about what that was like,
26:48 --> 26:50how those relapses were were found
26:50 --> 26:53and and how you were treated and
26:53 --> 26:55if at any point you kind of went,
26:55 --> 26:57Oh my goodness, like here we go again,
26:57 --> 26:59How much more is this going to be?
27:00 --> 27:03Yeah, those thoughts definitely cross
27:03 --> 27:06my mind here and there for sure.
27:06 --> 27:10But yeah, so I I enrolled on
27:10 --> 27:12a clinical trial in Boston.
27:12 --> 27:14And at that time,
27:14 --> 27:17I had passed my physician assistant
27:17 --> 27:19boards and said to myself,
27:19 --> 27:23I'm going to continue my life and try to
27:23 --> 27:26incorporate they don't cancer into my life.
27:26 --> 27:29So I was on this clinical trial for about
27:29 --> 27:345 1/2 years while I was working in Boston.
27:34 --> 27:36So that was an interesting,
27:36 --> 27:39beautiful, challenging all all of
27:39 --> 27:43the above experience and during that
27:43 --> 27:46time had relapses multiple times,
27:46 --> 27:50about three or four times And you
27:50 --> 27:54know we would locally treat the area
27:54 --> 27:57and I'd continue on the clinical
27:57 --> 28:00trial and I was be monitored very
28:00 --> 28:04closely And then and and that was
28:04 --> 28:08that was feasible with living and
28:08 --> 28:11working because I had pretty minimal
28:11 --> 28:13side effects from that systemic
28:13 --> 28:15treatment and those local treatments.
28:15 --> 28:19And then when when it spread to
28:19 --> 28:22the brain that was really kind of
28:22 --> 28:24the decision maker that you know
28:24 --> 28:27this clinical trial is not not the
28:27 --> 28:29the best course anymore and it's
28:29 --> 28:30time to take a pause and and really
28:30 --> 28:32think about where I'm going next.
28:33 --> 28:35Julia is a patient of doctor Harry Desponday,
28:35 --> 28:37an Associate Professor of
28:37 --> 28:38Medicine and Medical Oncology
28:38 --> 28:40at the Yale School of Medicine.
28:40 --> 28:42If you have questions,
28:42 --> 28:44the address is canceranswers@yale.edu,
28:44 --> 28:47and past editions of the program
28:47 --> 28:49are available in audio and written
28:49 --> 28:50form at yalecancercenter.org.
28:50 --> 28:53We hope you'll join us next time to learn
28:53 --> 28:55more about the fight against cancer.
28:55 --> 28:57Funding for Yale Cancer Answers is
28:57 --> 29:00provided by Smilow Cancer Hospital.

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Navigating Cancer as a Young Adult with guest Hari Deshpande May 12, 2024

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Dr. Hari Deshpande

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