Jul 18, 2019
A doctor describes her 50+ history as a survivor of lymphoma treated with mantle radiation. Read the related article on JCO.org.
Transcript:
The purpose of this podcast is to educate and to inform. This is
not a substitute for professional medical care, and is not intended
for use in the diagnosis or treatment of individual conditions.
Guests on this podcast express their own opinions, experience, and
conclusions. The mention of any product, service, organization,
activity, or therapy should not be construed as an ASCO
endorsement.
The Arc of Therapy-- From Cure to Humbling Legacy, Gene Bishop,
M.D.
In June 1965, at the age of 18, I sat in a room with my parents and
heard an oncologist tell me that I had Hodgkin lymphoma. If I
shared that diagnosis with people, he said, they would look at me
as if I were dying, because almost no one with this disease
survived, but I would. With breathtaking confidence, the oncologist
said a new treatment, radiation, would cure me. In October 2018, at
the age of 71, I sat in an oncologist's office as he told me I had
stage IV non-small-cell lung cancer, presumably as a result of that
radiation in 1965. He offered palliative therapy. His goal-- more
good days than bad. He called me "our humbling legacy."
I reflect now on that arc, from optimistic cure through a mounting
problem list of likely consequences of radiation, to the almost
certainty that I will die of the treatment of a cancer I had in
1965. I received the best treatment there was in 1965, and I'm
getting the best treatment there is in 2019, but I am no longer
being promised a cure. Both my oncologist and I are living with the
reminder that no treatment does only what we want it to do, and
that one year's miracles may have serious consequences, even 50
years later. And although some of these may be known or
theoretically possible, many are not even imagined until one, two,
three, or many case reports begin to appear and random events turn
into warnings and known consequences.
For the patient seeking cure and life, an unknown but potentially
dangerous future is hard to imagine. Some new miracle will come
along. Physicians waiting for data, recruiting patients for the
next clinical trial, or facing pressure from patients for positive
results can also be focused more on immediate results. They may
minimize the known or unknown future. How will physicians be both
wise and humble?
The first oncologist was right. I was cured of lymphoma. I
graduated, went to medical school, and had a family and a full
life. I shared the story with friends, patients, and colleagues
when I thought it was appropriate or helpful. Look, I said to
families facing radiation, I had radiation, and here I am, alive
and well. A little hope never hurt anyone I never thought of myself
as a cancer survivor on an ongoing journey. I thought of myself as
a cure. And I certainly didn't think about the difference until
many years later.
If oncologists were no longer interested in me, then cancer was
over. There was no concept or field of study of adult survivors of
childhood cancer. Certainly no physician, neither the oncologists I
saw initially nor the internists who later followed me when the
oncologists lost interest, raised the issue.
Why and when did I even begin to consider that I might be at some
kind of risk? In 1979, 14 years after my treatment, the worst
domestic nuclear power accident in US history occurred at the Three
Mile Island nuclear plant in Pennsylvania. I was more than
sympathetic to the nuclear disarmament movement. And although I
understood that nuclear war and my radiation treatment were
considerably different, I did begin to wonder if the treatment
could have had unexpected consequences.
I began to ask questions of physicians, with very few answers. Thus
began almost 20 years of symptoms and consequences of being in the
earliest cohort, not part of any study, before the age when anyone
could request, if it occurred to them, weekly updates from the
National Library of Medicine on consequences of earlier cancer
treatment.
In 1981, at age 34, I asked whether I should start mammograms
early, and my internist asked the mammographers. "We don't know," I
was told, "but it might be a good idea." In 1985, seeking answers
to a persistent tachycardia cardiopulmonary testing and a Holter
monitor showed a baseline heart rate in the 90s. I was told I was
deconditioned and anxious. In 1986, a physician studying effects of
radiation on the heart-- he had a seven-year follow-up at that
point-- told me the only known effects was constrictive
pericarditis, which I did not have. "Don't worry," I was told.
Both were correct. I was anxious, but my ectopy and tachycardia
were not symptoms of anxiety, they were the cause of the anxiety. I
was anxious about the effects of radiation. I never tried to be my
own doctor. But only I looked through the lens of a radiation
treatment survivor.
Not until 2006 did I find early consensus-based guidelines of which
my physicians were unaware. In the late 1980s, I was denied life
insurance because of the new right bundle branch block, but not
until 2001, 36 years after my initial treatment, did a cardiologist
name it radiation-induced heart disease. I imagined it as static
rather than dynamic. Not only was my heart not static, but the
entire field of radiation-induced heart disease was evolving. I
didn't have a permanent scar, I had ongoing damage. And neither I
nor my doctors had the evidence for where it was heading.
I found a cardiologist who focus on cardiac consequences of cancer
treatment. When I mentioned that hiking in the Canadian Rockies and
trekking in Vietnam had ceased to be fun, the cardiologist found
critical aortic stenosis. My already damaged conduction system did
not survive an aortic valve replacement, and now I had both a
pacemaker and a new aortic valve.
In 2015, at age 68, I read a published report of abnormal exercise
response in long-term survivors of Hodgkin lymphoma treated with
thoracic irradiation. I recognized myself in graphic detail. No
amount of training at the gym would get my heart rate below 90.
That article appeared 50 years after radiation and 30 years after I
first sought help, one of several sobering lessons in the length of
time it can take to discover the effects of medical treatment.
The truth is, in my own therapy arc, I was lucky. Every consequence
until the lung cancer was treatable with the promise of a good
outcome. I saw the article recommending breast magnetic resonance
imaging for those who had received mantle radiation, appealed my
insurance denial, and found my breast cancer early. However, two
medical oncologists, two breast surgeons, and three radiation
therapists all had vastly different treatment recommendations for
my situation, reflecting the murky state of knowledge on treatment
of Hodgkin survivors. A huge thyroid nodule was benign, but out
came my thyroid with a different small focus of cancer.
I faced each challenge, albeit with some depression and fear, with
the knowledge that I would get better. Cure was still the operative
word. In the arc of my disease, radiation had consequences, but
they were not insurmountable. As I reached more than 50 years out,
I think I breathed an inward sigh of relief. I expected to have
progressive cardiac disease. I imagined I would develop congestive
heart failure. I worried about lung cancer. It had been reported 40
years out. But there were few studies on 50 years out. I thought I
was done with my cancers.
When I developed a sudden and persistent cough, I began to worry. I
could hear gurgles high in my mid-chest, but my doctors heard
nothing. I doubted the pulmonologist's diagnosis of cough-variant
asthma newly-present in a 70-year-old. My doctors began gently
suggesting what they do when a patient has unexplained symptoms.
"Perhaps you are anxious," they said. The classically-trained
psychiatrist noted he hadn't seen a conversion symptom in a long
time, but thought I might never have really thought through what it
meant having cancer at age 18. Several unexplained symptoms and
normal computed tomography scans later, I contemplated what a
non-physician would do. What if I weren't thinking like a doctor,
but more like my fellow survivors?
Off I went to Facebook, an unimaginable resource in 1965. I typed
"Hodgkin's survivors" in the search box, and up popped a closed
group-- Hodgkin's Lymphoma Disease Survival and Late Effects, 1960s
to Early 2000s. Here were 500 people from around the world who had
received radiation, chemotherapy, or both. It was hardly a tidy
cohort. Their treatments for Hodgkin's spanned the years from
mantle radiation, to chemotherapy, splenectomy, improved imaging,
and actual staging. As befits a social media site, they were
seeking support, medical advice, and shared experiences.
I was one of only two survivors on the site who were more than 50
years post-treatment. Initially, I felt lucky, at least until the
lung cancer diagnosis. The number of valve replacements,
arrhythmias, pacemakers, and stents was extensive. Many had severe
neck contractures from radiation. Breast cancer seemed to be an
everyday occurrence. The question of prophylactic mastectomies
frequently was raised. Cough, lung disease, and esophageal reflux
with aspiration all appeared. I briefly let myself be reassured
that my pulmonologist was correct, and my cough had a reflux
component, even if I never had a classic reflux symptom and a
gastroenterologist was doubtful.
If the medical world has been slow to recognize cancer
survivorship, this non-random group has not. Many of them travel
hundreds of miles to find survivorship clinics in various countries
around the world. The more recently-treated ones had both the good
fortune to benefit from the new field of cancer survivorship, but
the bad fortune to be beset constantly by worries about what the
future holds. As with much of the lay public, many believe that
screening and early diagnosis are always beneficial, and are
unaware that the evidence in our cohort is scant.
I found myself alternately fascinated, riveted, terrified, and
reassured, but refrained from diagnosing myself from Facebook. I
also knew I had found my peeps, a cohort more aware of their risk
factors than much of the medical world. One woman expressed relief
when her new oncologist said, "this is all our fault." Others
chimed in they had never heard a physician acknowledge that.
My new oncologist had fancier words, "you are our humbling legacy."
I am the living-- or perhaps I should say dying-- history of one of
our more successful efforts to treat and cure cancer in the last 50
years. There are now numerous other efforts, especially to treat
childhood malignancies. Awareness of long-term consequences, the
concept of survivorship, and the concept of shared decision-making
are but a few of the inflections in the arc of therapy. Many
patients make difficult decisions choosing extremely toxic
therapies that will extend life only months, with imminent
consequences that are known. But many also make decisions on the
basis of limited information, filled with hope.
In early 2019, should an American woman wait while the Food and
Drug Administration continues to investigate textured breast
implants, or imagine she lives in France where sales have been
halted because of reports of an association with a rare lymphoma?
What will be the effects of the successful immunotherapy in 10, 20,
or 50 years? Of course, physicians are focused on near-term cure,
yet they must also acknowledge the uncertainty regarding possible
late effects of the very treatment that is now saving their
patients' lives.
But if I am a humbling legacy, humility is needed. We need
clinicians to provide guidance and information to patients as they
find themselves in unknown and often frightening terrain, years or
decades after completing their course of treatment. In my primary
care practice, I often told patients I had left my crystal ball at
home along with my magic wand. But I was usually referring to when
they could return to work after a viral illness, not whether they
would get a terminal illness 50 years later.
I tried to imagine my 18-year-old self, and the doctor peering into
his crystal ball. "You will have symptoms no one will believe. You
will happily marry and successfully have one child." As long as he
has a crystal ball, I might as well learn everything. "You will
develop heart disease and require an artificial valve and a
pacemaker. You will develop three other cancers, two of which will
be treatable, but the third, at age 72, will be the cause of your
death. Would you like the radiation and cure we can offer you
now?"
[MUSIC PLAYING]
Cancer Stories, the Art of Oncology Podcast, presents the essay,
The Arc of Therapy-- From Cure to Humbling Legacy, by Gene Bishop,
published online in Journal of Clinical Oncology, June 10 issue,
2019.
I'm Lidia Schapira, editorial consultant for The Journal of
Clinical Oncology's Art of Oncology, and your host for Cancer
Stories. My guest today is Dr. Gene Bishop, who is a retired
general internist, and primary care physician and a clinical
professor at the University of Pennsylvania. Dr. Bishop's essay,
The Arc of Therapy-- From Cure to Humbling Legacy, addresses the
personal and lived experience of a cancer survivor.
Gene, welcome to our program.
I'm so happy to be here. Thank you for having me.
We're absolutely delighted. And your essay is so inspiring, and
also so educational. I wonder if you can tell us a little bit about
what you wish to convey to the audience of cancer clinicians about
the experience of being a long-term cancer survivor.
That's really an interesting question. Because one of the questions
is how many long-term cancer survivors are still seeing
oncologists. And to the oncology community, I want them to always
have an open mind about possible effects of the medications they're
using. I could see how it easily could become so exciting to find
people in recovery, if not cured-- always a tricky word-- from new
therapies that it's hard to think what it might be like 10, or 20,
or 30 years down the line. And I think that just needs to be
acknowledged.
I think the more difficult question is how to have an open mind
about therapies people might have received years ago, and to sort
out possible unknown effects.
This is such a challenge, and it is such an important point, I
think, for all physicians-- not just cancer clinicians, but all
specialists and all primary care physicians and generalists,
because we may not know what to look for. And you have this unique
experience of having being among the first in the cohort of very
young patients who were cured by radiation. Tell us a little bit
about what it was like for you as you were encountering symptoms
which perhaps you thought were related to that therapy, but nobody
really knew what to do with you.
Yes, and I think that that's terribly important. One thing to
remember is I was young. I was 18 when I was treated. And I
probably didn't actually realize the import of what was going on.
My 96-year-old mother is still alive. And needless to say, now
still facing the fact that her 72-year-old daughter will die before
her. But she really thought she was going to lose me at age 18. But
I never skipped a beat. You know, I got radiation, didn't get sick,
never missed a day of college, and thought everything was behind
me.
But once I became a physician-- which I don't think has anything to
do with that, with my illness, it really had to do with the women's
health movement of the 1970s-- once I became a physician, I noticed
that I was having symptoms that didn't seem to me to be normal for
a woman in her 30s and 40s. And I couldn't get anyone to consider
that these could be an effect of radiation. They were right on
board with, you're cured, that was a long time ago, and a
seven-year follow-up somebody had. And they were way too willing,
as many doctors are, to ascribe them to psychological symptoms.
Now I didn't expect anybody to know that, 30 years later,
particular effects of radiation would be reported, but I expected
people to at least have an open mind, and say, you know, we can't
find anything now. Maybe this has to do with your treatment. Let's
make a follow-up plan. And I think that's terribly important. And
nobody I saw was an oncologist. The oncologists were done with me.
I was cured-- until I wasn't.
And as I said, we don't have crystal balls. But one of the things
that I learned from the Facebook group, which is quite an amazing
place, is that people treated for Hodgkin's even much later than I
am, and I presume other cancers, are still facing, from primary
care docs and other doctors, "this happened a long time ago, it
cannot possibly be affecting you now."
And I think doctors need to remember there's a lot we still don't
know about the human body and what we're doing to it. And default
should be, "this happened a long time ago, I don't know anything
about this, but let me look into it." And that's not always the
default.
You know, one of the things that struck me in your narrative is
that here you are, 70-plus, a medical educator, and where you found
your people was in an online community. You know, it was not
exactly where I thought you would take a story.
Well, I'm going to modestly say that I have a lot of faith in
myself as a clinician. And I just knew I didn't feel right, and
that nobody was coming up with an answer that made sense to me in
terms of explanations of various symptoms. And I thought, well,
what do people do? Oh, they go online. So I searched Facebook,
which is not something I-- I do have a Facebook page, but it says,
"I don't actually use this page. If you're really my friend, you
know other ways to reach me."
And I went on Facebook, and there is a closed group of Hodgkin's
survivors. You have to apply to be in it. And it's moderated by a
woman in the UK. And it was an unbelievable cohort. Of course, it
wasn't, as I said in the article, tidy. Because it included people
like me, who were treated only with radiation, before CAT scans,
before staging. I've always been thankful that I missed the
splenectomy stage.
[BOTH CHUCKLING]
I have my spleen. And for being such an untidy cohort, they had
experienced many similar problems and were extremely well aware
that they were lucky to be alive and that the treatments they had
been given had serious long-term side effects. And although I had
to refrain as a physician-- I basically didn't participate, I would
say I was a lurker-- what I did do was post the previous article I
have written, and I posted anything that I thought would be useful
from the medical literature. I was not the only medical
professional on the site. But when people say, gee, I'm having
chest pain, what do you think I should do, let somebody else say,
you should go see a doctor or you should go to the emergency
room.
But an incredible number of people who had seen doctors and gone to
survivorship clinics but also been dismissed as, "this can't have
an effect." And I realized-- I always thought I was pretty special,
and I realized that it was a pretty large community, particularly
in regard to Hodgkin's, of successful cures but with was
sequelae.
And what did you find in this community? Was it the connection with
others or was it specific information? What kept you going
back?
Well, after a while, I got kind of tired of it. Not tired of it,
that's not the right word. It was became disturbing, actually,
because of the seriousness of the problems. What I found in the
community were, one, people were supporting each other. And two, I
found other people who had unexplained cough, who-- at one point, a
physician was trying to convince me that my cough was all due to
reflux even though I'd never had a reflux symptom.
And I found many people who had shared some of the symptoms that I
had had, which didn't make me think, oh, good, now I have this, but
it made me realize that I was very far from alone, and that even I,
who thought I had spent quite a lot of time learning about
long-term effects of radiation, had not understood how many people
were living with serious neck contractures, reflux so severe that
they had to be hospitalized, chronic cough. It seems that because I
had escaped them, I hadn't realized. And I'm not sure anywhere I
had seen the collection of symptoms that you can see in this
cohort.
So I didn't feel necessarily supported by the community. I wasn't
looking for emotional support. But I was looking-- in the National
Library of Medicine I hadn't found a good explanation for my
symptoms. And so I thought, well, let's see what social media has
to offer. Maybe somebody will have something that I can go back to
my doctors with. I was astounded, around the world, by the
community of survivors.
It's so interesting. Because through social media, we can actually
find out so much about how patients and survivors experience their
disease and their trajectory after we say goodbye, thinking that,
as you put so nicely in your essay, that we're done.
I have a question for you based on one of the things you just said.
And mentioned survivorship clinics. How do you think they are now
helping patients who have similar stories to yours who are
long-term survivors have they developed in the way that you
anticipated? Do you think they're helpful? Well, that's a good
question. And I can easily get out of it by saying I know nothing
about it. Because in my own case, there were no survivorship
clinics. And I was the only person who kept trying to think, gee,
is this a problem that I'm going to have, or how do I think about
this.
And so for instance, the University of Pennsylvania where I'm now
being treated, has a survivorship clinic. But I've never been
there, because I already, as a primary care doctor, have two
oncologists-- I mean, I already have such a team that the
survivorship clinic has nothing to offer me. So the most I know
about the survivorship clinics is really from the Facebook group,
where people find them quite helpful. Because a knowledgeable
person is can actually look up and see who they are, what year they
were treated, what treatments they received, and what they now know
that they're at risk for.
So I think there's probably a good use to survivorship clinics. I
think, as a former primary care doc, there's just no way I could
know that about every treated cancer patient that I see and what
the treatments they might have received.
So I think that survivorship clinics are probably quite useful, but
I have no personal experience with them at all. I think if I were
still in practice and I saw somebody who said to me, I was treated
for childhood leukemia, or sarcoma, or whatever, I would refer
them, at least for an evaluation, and then see them back and see
what they thought. But I have no personal experience.
I think survivorship has gotten pretty trendy. And one of the
interesting questions is, how do you even define a survivor?
So as we bring this interview to a close, I have one question for
you. You end the story by saying that even if you knew then what
would happen as a result of treatment, you would do it again. At
least that's what I understood. Can you tell us a little bit about
the emotional journey of being a cancer survivor.
Sure. I mean, of course I would do it again. I was 18, and I'm 72.
I've had a life. But I think, for me, there was a turning point
between thinking of myself as a cure-- over and done with-- and
being a survivor. And I wrote about that a little in a Journal of
General Internal Medicine article that's referenced in my article,
called "Seeking the Proper Tense." I spent, I'd say, the first
20-something years just feeling like it was in the past, that
whatever was going to happen, I could deal with, that I had really
escaped.
And getting breast cancer-- which, by the way, was very lateral,
and there was no agreement among my physicians whether I got breast
cancer because I was a 60-year-old American woman or because I had
had radiation-- getting breast cancer really hit me in a different
way. And I said, oh, I could actually have a lot of problems, and I
could have a lot of different problems than people who randomly get
some other cancers. And I felt like I really had to make plans for
the latter part of my life to think about what the consequences of
this treatment might be. Could I continue to live in a three-story
house? It was clear to me that I had ongoing heart disease.
And I made a transformation in my head between being a cure to
being a survivor. I joined a writing group at Penn for cancer
survivors. And before that, I never thought of myself as a survivor
because I hadn't lost my hair or vomited, which I think is what a
lot of people think of if you have cancer-- If you really have
cancer then you have to undergo therapy that makes you ill. And
none of that was part of my past.
But I realized that I was a survivor, and that something had
changed in my body, and I would have to deal with it. And it's been
very difficult. I'm very sad right now, you know? And it was hard
to write the article.
I imagine. I imagine. Well, those of us who read the article and
continue to learn from it appreciate that you did write it. We
thank you for it. And we wish you also good health. And thank you
so much for sharing your reflections.
You're welcome. I hope they are helpful to physicians. I really
appreciated my oncologist-- his calling me "our humbling legacy"
really sparked the article in a way. I'm far from cure at this
point. Thank you.
Thank you for sharing your story. That was Dr. Gene Bishop sharing
her reflections on being a cancer survivor and living with lung
cancer. This is Lidia Schapira, your host for Cancer Stories. Join
me next time for another conversation about the Art of
Oncology.