Cancer Answers: A Survivor's Prospective: Lung Cancer, January 2, 2011

Janet Brown, A Survivor's Prospective: Lung
Cancer
January 2, 2011Welcome to Yale Cancer Center Answers with Dr. Francine Foss
and Dr. Lynn Wilson, I am Bruce Barber.  Dr. Foss is a
Professor of Medical Oncology and Dermatology specializing in the
treatment of lymphomas.  Dr. Wilson is a Professor of
Therapeutic Radiology and an expert in the use of radiation to
treat lung cancers and cutaneous lymphomas.  If you would like
to join the conversation, you can contact the doctors
directly.  The address is canceranswers@yale.edu
andthe phone number is 1888-234-4YCC.  This evening
we continue our series of survivor stories with guest host Peter
Lamothe who is a cancer survivor himself and Peter is joined this
week by fellow survivor Janet Brown.Lamothe
It is terrific to have you with us and I thought we could begin by
first talking a little bit about who you are and about your
background before we get into your cancer experience.Brown
My name is Janet and I live in Old Saybrook.  I was 48 when I
was diagnosed and I am almost 52 now.  I have three children
in their early 20s and I have been married to my high school
sweetheart for 28 years. Before my diagnosis I was a preschool
teacher with a degree in special education, but I was teaching
preschool in Old Saybrook.Lamothe
Let's talk a little about the last four years beginning with your
diagnosis.Brown
I have stage IV non-small cell adenocarcinoma lung cancer.  It
started in my right lung and spread to 3 spots on my spine and to
the pons area of my brain.Lamothe
When was this exactly?Brown
I was diagnosed on December 22, 2006.Lamothe
What was your initial reaction when you got this news?Brown
That is a hard thing to bring back to my memory, because it was
such a horrible, horrible experience.  I was all alone when I
was told.  It came totally out of the blue.  I had always
thought I might have cancer at some point in my life because my
grandmother did, as did my mother and my aunt, but I never thought
lung cancer at 48 years old. The whole world went black, I could
not breathe, I could not talk.  I just kept running to throw
up.  I just wanted to die right that second, I kept thinking I
cannot do this to my children and a million emotions all flooded
in.Lamothe
Where were you when this happened, were you in the clinic with your
doctor?Brown
I was in an emergency room. What had happened was I had gone to my
GP because I had back pain and she sent me in for an MRI and CT
scan and then called me up a couple of hours later and3:13 into mp3 file 
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 said I want you to go meet a neurological doctor and to meet him
at the emergency room.  She did not tell me why.  I got
to the emergency room and they started asking a million questions
and they kept saying, do you smoke? Do you work in a toxic
environment? And finally I said, why am I here? And the doctor just
blurted out, "you have lung cancer" and so that's how I found
out.Lamothe
What did you do next with that information, you went home and told
your husband?Brown
           
 Well it was pretty bad in my spine, the spots, and my spine was
compromised.  My husband was in the waiting room.  They
had not let him in.  So the first thing I said was, "can you
please go get my husband?" He came in and they wanted to admit
me.  So we talked to the doctor.  He said "you need to be
admitted, your spine is very compromised." Then I said, is this
fast, is lung cancer fast, am I going to be gone in a few months?
He said not a few months, maybe a year and I said to him, "so you
are telling me this will be my last Christmas?" And he said that
was very likely so I said I am not spending it in the hospital. We
checked ourselves out, went home and did not tell anybody, made it
through Christmas and went back to the hospital the day after
Christmas and spent the week.Lamothe
Who did you meet with and what were some of the next steps that
occurred because it was so aggressive?Brown
I originally met with a neurological doctor.  He was
originally going to do surgery on my spine, take out the tumors and
fuse my spine together.  Then they found it in my brain, I had
more CAT scans, more MRIs, more x-rays and they found that it has
spread to my brain.  So the plan changed.  Instead, they
just did a biopsy and scheduled me for radiation because they
wanted to get the treatment as soon as possible, so I was there
about a week.Lamothe
Can you tell us about the type of treatments that you received over
the course of the ensuing three months?Brown
I started with radiation on January 2, 2007, I did not start at
Yale, I started over at Saint Raphael's.  Radiation lasted
until February 15.  I had radiation to my spine and to my
brain.  On February 15, I moved over to Yale and started on a
drug call Tarceva, which is an oral chemotherapy drug.  I have
been on that since and then every three months now, it was every
month, I have an infusion of Zometa, which is a calcium
supplement.Lamothe
Can you say little bit more about Tarceva, and why that particular
drug was selected for you?Brown
Tarceva was selected for me, thankfully, because I came to
Yale.  Yale was my second opinion,6:15 into mp3 file 
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Dr. Scott Gettinger was my second opinion and when I came to see
him he asked if I had been tested for the EGFR mutation, and I
hadn't.  So he tested my biopsy and I have a mutation on my
genes that the drug Tarceva works especially well with.  So
instead of going through the regular chemoinfusion, I went right to
the Tarceva.Lamothe
So after your diagnosis you were told that this was stage IV that
you might not see a second Christmas, and that time was of the
essence and yet you went and had a second opinion.  What drove
that decision?Brown
I hate to sound curt but it seems like no-brainer. I was given a
diagnosis that I had an incurable disease and it was going to kill
me.  I had never met this man before, this first oncologist,
why would I trust him with my life? It only seems sensible to go
speak to somebody else.  My sister happens to work at Yale, so
she got me an appointment with Dr. Gettinger and I also went down
to Sloan-Kettering and had an appointment with them and they agreed
with Dr. Gettinger's plan of action.  So I stayed here at Yale
and I think you just know when you are not clicking with a doctor,
and my first oncologist pretty much just said, this is the
treatment plan I do with my patients.  Dr. Gettinger said,
this is the treatment plan I am going to do with you as an
individual and I just really appreciated that.Lamothe
With these targeted therapies, the Tarceva drug you are taking for
the EGFR mutation, this is really treating your cancer and not just
stage IV lung cancer.Brown
It is treating my cancer with my mutation and there are more
targeted therapies coming out. I have some friends online that are
getting different targeted therapies that are treating their
mutations.  More things are being developed all the time.Lamothe
Had you heard of targeted therapies before, or gene mutations?Brown
I thought you got cancer, you did chemo.Lamothe
Right.Brown
That is what I thought happened.Lamothe
I think the trends now are towards personalized cancer therapies so
that you are not among only a group of lung cancer patents, but
that your lung cancer is being treated in a personalized way that
is specific to you.Brown
And the success is just wonderful.9:07 into mp3 file 
http://yalecancercenter.org/podcast/jan0211-cancer-answers-brown.mp3Lamothe            
 Can you say a little bit about the effects of Tarceva and what
began happening over the ensuing weeks or months?Brown
There is no sign of cancer progression and so it is pretty much
stopped the growth.  It has some lovely side effects that I
have learned to live with.  You think you are just taking a
little pill and I look at it every night and I think, how can this
little pill be stopping the cancer? But it seems to be.  I
lost my hair.  It gives you a terrible rash that happened on
my scalp and caused my hair to fall out.  It gives you
conjunctivitis like symptoms on your eyes, sores on your nail beds
and pretty much constant diarrhea, so it is not an easy drug. 
I think it is much easier than traditional chemo, but it does have
side effects.  When people ask me how I am feeling, the cancer
I could completely forget about, it is the side effect from the
Tarceva that make you remember that you are sick.Lamothe
This type of diagnosis and what you have gone through must be
particularly difficult for you, but I imagine this is very
difficult for your family and for your children.Brown
I am not a father so I can't say, but I know the first thing that
comes to a mother's mind is her children.  I lost my mother
when I was in my early 30s so the thought of my children losing
their mother when they were in their early 20s was devastating. I
just kept thinking, how can I do this to them I am ruining their
lives and it has been very hard.  They are very strong kids
and we have decided to laugh about it and joke about it and some
people are a little part put off by us, but it is the way we get
through.  They have been very strong and very supportive, but
I still really worry.  My oldest daughter is in Boston, she
has got a career.  I do not want her to have to stop that to
come and take care of me as things get bad.  My middle child
just started medical school, I mean the last thing she needs is the
stress of her mother, and my son is just about to graduate college,
so it is very difficult.  They are not at the point where I
feel they are settled and they still need their mother, so I need
to survive.Lamothe
You do not ever stop being a mother. How have you individually, and
perhaps with your husband and then your kids too, begun to maybe
live your life a little bit differently since this diagnosis?Brown
I think I live much differently.  I did stop working.  I
taught 3 year olds and that is exhausting for any 50-year-old, for
a 50-year-old on Tarceva it was really exhausting.  So I did
stop working.  I wanted to be able to have the time and the
energy to spend with my husband.  He comes home for lunch
everyday.  I would like to be there.  I wanted to be able
to visit with my kids, so I did stop working.  I have started
volunteering so I am busy, but on my own terms. I am much more
patient with people because I realize you never know what somebody
is going through.  If a cashier is grumpy at me, I do not
grump at her, I just kind of let it go and I really live each
day.  I am not climbing mountains and I am not bungee jumping
or traveling the world, but everyday, even if I do not leave my
house, I live and I enjoy it and I enjoy all the little things and
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become much closer.  It is odd to say, but it has really been
a blessing and we have become a very close group of 5.Lamothe
It sounds like you had always lived a very full life and have
blessings in life and we know that a cancer diagnosis affects more
than just the patient and their family, but also their friends and
in many cases, the community.  Can you say a little about how
your friends and neighbors, people you have known for your entire
life, took this news and how they responded?Brown
Friends are amazing and immediately meals started coming in, people
were cleaning my house, people were coming by with a glass of wine
just to chat.  My friends have really been behind me and
supportive of me.  My church has been behind me.  The
nursery school where I worked sent us on a cruise.  I mean
people been really kind.  Some people have backed off and some
people do not know how to deal with it and I totally understand
that, sickness is hard, so you can understand that but they have
been wonderful.  Everybody has been truly wonderful.Lamothe
We are going to take a short break now for a medical minute. Please
stay tuned to hear more about Janet Brown's Story.Lamothe
Welcome back to Yale Cancer Center Answers.  I am Peter
Lamothe and I am joined today by Janet Brown and we are discussing
her story of cancer survivorship.  Janet, before the break we
were talking a little bit about how your close friends and family
responded to your cancer and in the public at large, I think it is
safe to say, that there is a certain stigma attached to a lung
cancer diagnosis and I think there is a lot that we can say about
that.16:20 into mp3 file 
http://yalecancercenter.org/podcast/jan0211-cancer-answers-brown.mp3Brown 
           
 Lung cancer is a cancer where it is very hard to tell people what
you have because the reaction is not usually hugs and warm fuzzies.
95% of the people who I have told I have lung cancer, the first
words out of their mouth are, do you smoke? And that is a really
harsh question for a couple of reasons.  First of all, what
does it matter? And if I said yes, what would your answer be, what
would your response be?  I did not smoke, but even people who
do smoke do not deserve lung cancer.  Nobody deserves that and
because it has got this negative stigma and people seem to feel
that you brought it on yourself it does not get the funding that it
deserves.  It is the biggest cancer killer that kills more
people every year than breast, prostate, colon, and pancreatic
cancer combined, and yet it gets a really small fraction of the
funding.  The money that it raises usually gets put towards
smoking cessation programs instead of research.  Tarceva was
discovered with research dollars and we need more research dollars
to find more targeted therapies so the negative stigma is very hard
and it is hard to have a cancer that people have no sympathy
for.Lamothe
Why do you think that stigma exists?Brown
In one way I think it's the media and you know cigarettes are bad,
and in another way it makes people feel safe to think it's
cigarettes.Lamothe
Smoking cessation is important, but it's the research into the
disease after it affects people, you are saying, is so critical and
is being short changed.Brown
Maybe 65% of the people who are newly diagnosed with a lung cancer
never smoked at all, or quit smoking decades ago, so even though it
is important to stop smoking from many reasons, not just cancer but
for your heart, for your general health, stopping smoking is not
going to stop lung cancer, it is happening whether you are a smoker
or not.Lamothe
There are many-many environmental factors, genetic factors as you
have said with the EGFR mutation, that can effect this. During the
course of this journey that you have been on, have you reached out
to or joined support groups, have you come into contact with other
cancer patients whether they be lung or another cancer, and if you
have, how has that helped?Brown
When I was first sent home with the radiation and everything I got
on the computer and I joined an online support group through a
group called LUNGevity and it is a kind of support group where you
can send questions and everybody who has experience would answer
that and there is also just the chat room where we just chat and I
have met some very good friends through that.  It got very
difficult for me because I also lost some very good friends through
that. And then on Facebook I have become friends with cancer
survivors and caregivers that I found through Facebook or
groups.  When I first started at Yale, Irene Scanlon who runs
the Lung Cancer Support Group at Yale, came up to me after every
appointment and said, I just want to let you know that we have
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support group, she always said it very gently and I always very
politely said no thank you.  I did not think that that would
be for me, face to face talking with people, I thought it would be
too awkward, but after losing quite a few friends on the online
group and with all the worries going through my head about my
children and the guilt about leaving work and not helping out with
the family finances and feeling very, very alone, I finally joined
at the beginning of the summer.Lamothe
What has that experience been like for you?Brown
It is wonderful.  It is a wonderful group of people.  It
is not at all what I expected.  There are probably 20 of us,
survivors and caregivers, and everybody is there to help each
other. We laugh a lot, we cry some, it is wonderful to have
somebody verify what you have been thinking.  You will think
that you are the only one that thinks that way and somebody will
come out and say it at support group, and it is just a good
feeling.  With the side effects from the Tarceva, there are
other people there that are on the same drug.  We help each
other out.  We give each other names of doctors and drugs that
we have tried.  We just were interviewed by a journalist from
the New Haven Register and she was shocked when she came in. I
think she expected to see a group of sad faced people and she
walked in and we were all just laughing and having a nice time with
each other.Lamothe
Now that you have lived with this disease for a few years, it
sounds to me that you have moved through or beyond just dealing
with and focusing on it, to reaching out to other people for help
and now it sounds like you are giving help. Have you got into any
advocacy or fundraising or things like that in lung cancer?Brown
No, I really have not. My daughter and I walked in the Boston Lung
Cancer Walk in November and that is the first thing I have
done.  Most of it has been just helping people on the support
lines and being in a support group, but I really have not got into
any of that yet.Lamothe
In your support group, have you found yourself giving advice and
comforting other people?Brown
Certainly, when new people come into the support group or on the
online group, they are so lost, and you remember that.  You
remember how scared you were and so it is important to tell them
that it gets better and it is hard for them to believe that and we
give them advice, what to do when they go to a doctor's
appointment, what to ask, and just to let them know that here I am,
it is four years later, it can happen.Lamothe
In my definition of survivorship, it is from the moment of
diagnosis, and also includes those people who are closest to
them.  With my own case of Hodgkin's disease almost five years
ago, I think my wife and son and many of my family members survived
that cancer too, so thinking
                     24:07 into mp3 file 
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across the cancer disease spectrum, what would you say to that
cancer survivorship community based on your own experience? What
types of tips or suggestions for dealing, or not dealing because
sometimes it is better to shut it down if you have to in the cancer
experience, would you give?Brown
For the patient, I think I would say you are not used to doing it,
but you have to put yourself first, stick up for yourself, do not
give up hope. Do everything you can and research, bring people with
you to the doctor's appointments, that is so important because the
doctor is throwing terms at you and numbers and to have somebody
there with a pen and pencil writing it all down is great. 
When people offer help, take the help.  It felt really funny
at first, but someone reminded me that that is a gift to them, they
do not know what else to do and you are helping them out by
accepting it, accept the help, take care of yourself. When you need
a nap, take your nap, when you do not feel up to going to a party
or doing what is supposed to be done that day, do not do it, put
yourself first.  For the family, it is hard, but they have to
take care of themselves too and they cannot live their life around
your disease. I know that it is very hard for them but they have to
remember to take care of themselves and not let themselves get worn
down worrying and to live their lives.Lamothe
For patients, talking about their cancer when they are able to is
very therapeutic, and you sound like you have always been, if not
at least talking about it, it has not been something that you have
been unable to talk about, but what always strikes me as
interesting is what other peoples say to you about your cancer, or
cancer in general, and I will not bore you with some of the things
that I heard, but I think what was most meaningful to me was what
people closest to me had to say. My son was not old enough when I
was diagnosed first to have a conversation about it, but we have in
the intervening years, and my wife and my family as well, I am just
curious to say a little bit about what you have heard from your
children and what it may have taught you about them or how you
raised them.Brown
My children all have reacted very differently, and when I have
first diagnosed my son could not even get out of bed, and now I
find out that he talks with his friends.  His friends write to
me now to offer support or something they have read.  He calls
them with the good news if I had a good report, so that just makes
me feel so good.  My oldest daughter has always been the one
who needed me the most, and when I was first diagnosed that got
even stronger where she could not leave my side, and that was
frightening to me, but she has grown so much and I know she can do
this now and she still has a hard time talking about it.  She
does not like to talk about it, but she will, and then my middle
daughter, and people who know her will be surprised because she
seems very fun loving and easy going, is the sensible child and she
has started medical school and we talk about it all the time and I
actually call her up and ask her to tell me exactly what the
Tarceva is doing and she will explain it to me and I think it is
wonderful that she is doing this because I think28:35 into mp3 file 
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she will be a huge comfort to her brother and sister if things get
bad. She will be able to explain things to them and it will be
good.Lamothe
We talked a little bit about changing perspective in your life and
your are living with the disease now, but my question is, you seem
to me a person who has boundless energy and optimism and it would
not strike me, even though we have only known each other for a
little while, as unusual that you have a long term plan for life,
and I am just curious as to how you look at the rest of your life
in front of you and what you want to accomplish and whether cancer
will always be a part of your life.Brown
I have strong faith, and when I got cancer I said to God, I need to
see my children settled. And what I meant by that is I want to see
them married, I want to see grandchildren, but I am not going to
ask for all that because I know not to ask for too much.  I
wanted to see my son graduate high school, and he graduates college
in May, and I tell everybody I am going to be the loudest mother at
that ceremony, but I want to see my children settled and then as
little things happen in life, the recession and the breakups with
long-term boyfriends, I say okay this is good, things are a little
unsettled, it will keep me alive longer, so I don't plan on going
any place soon.  I am having too much fun and I have things to
do and I have always wanted to be a grandmother and my children
have no intention of making that happen anytime soon, so I am
sticking around.Janet Brown and Peter Lamothe are cancer survivors.  If
you have questions or would like to share your comments, visit to
yalecancercenter.org where you can also subscribe to our podcast
and find written transcripts of past programs.  I am Bruce
Barber and you are listening to the WNPR Health Forum on the
Connecticut Public Broadcasting Network.