Talk Shows and Stories : Featured Talk Shows : Carecast on Lung Cancer
Carecast on Lung Cancer
Recorded November 19, 2001
Welcome and Participant Introductions
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Dr. Harpham:
Hello. Welcome to CareCast. This is a live Internet broadcast brought to you
by the Cancer Survivors Network, a free service from your American Cancer Society.
I'm Dr. Wendy Harpham, your host. Today's topic is: Cancer Survivorship after
a Diagnosis of Lung Cancer. I will be talking with some special guests from
across the country who are survivors or caregivers, and with you, our listening
audience. You will be able to email your questions and comments to me by using
the comment box on the webcast page or emailing me at webcast@acscsn.org.
I will take as many questions as I can and those we can't include will be answered
in writing by the Cancer Survivors Network staff.
As a Doctor of Internal Medicine and also a lymphoma survivor myself, I'm looking
forward to leading this discussion, the first in this new series of webcasts.
First, let me briefly introduce our guests and then I'll open up the discussion
as we talk about issues such as; how to find the information you need; dealing
with the guilt some lung cancer patients feel; what it's like to be a nonsmoker
with lung cancer; dealing with the comments and reactions of others; financial
burden created by the cancer experience; coping with caregiver isolation; dealing
with mood swings between survivors and their caregivers; losing a loved one
to lung cancer; and moving on after completion of treatment for lung cancer
and how surviving cancer can change your lifestyle and outlook.
 First, I'd like to introduce our special celebrity guest, Alan Landers, the
former Winston Man. In the 1960's and 70's, Alan appeared in national ads for
Winston cigarettes and Tiparillo cigars. Now he devotes himself to the fight
against cancer, especially to urging young people not to smoke. Alan is a two-time
lung cancer survivor. In 1987 he went to the hospital for a hernia problem.
A routine chest x-ray revealed a tumor. Surgeons removed the cancer along with
a large portion of one of his lungs. He did well until 1993, when Alan developed
recurrent lung cancer and had more of his lung tissue removed. He remains in
remission, but his surgeries left him permanently disabled with chronic shortness
of breath. And lung cancer was not the only health consequence of his smoking.
In 1997 he underwent double-bypass heart surgery for coronary artery disease.
Alan is 61 years old, single, and lives in Florida. Welcome Alan, and thank
you for joining the group and sharing your experience today.
Alan:
Thank you for having me on your show. I also had reconstructed vocal cords as
the result of the operation in '87 on my vocal cord. I have severe emphysema
along with nerve damage from taking out two nodules in my neck that, thank God,
turned out not to be malignant. So, I am very happy to be alive and happy to
be on your show and get that message out about anti-smoking and about surviving
lung cancer.
 Dr.
Harpham:
Well, we're really looking forward to talking with you, Alan. Our next guest
is Nadine, a 43-year-old lung cancer survivor. Her symptoms began in the year
2000 with a chronic cough. She went to a doctor who treated her for allergies
and asthma, which didn't help. After months of coughing, she had a chest x-ray
that revealed a mass. A biopsy was done and revealed non-small cell lung cancer.
Her treatment consisted of chemotherapy and radiation therapy to shrink the
mass, followed by surgery to remove the upper portion of the lobe of her lung.
Nadine is doing well and lives with her significant other in California. Hi,
Nadine.
Nadine:
Hi there.
Dr. Harpham:
Welcome to the group today.
Nadine:
It's great to be here. I feel very fortunate to be able to be here. Thanks for
having me.
Dr. Harpham:
You bet! And joining us from Wisconsin is Mark, a 42-year-old lung cancer survivor
who was diagnosed in February of 2001. A few months earlier, Mark was working
two jobs and developed fatigue and a cough. His physicians treated him for two
months for presumed pneumonia. When his condition did not improve and he complained
of missing work due to fatigue, a chest x-ray was done which revealed a spot
on his right lung. Mark had a biopsy which diagnosed small-cell lung cancer.
Further evaluation revealed that it was extensive, having spread outside his
lungs to his liver and lymph nodes. Mark's treatment consisted of six cycles
of chemotherapy followed by preventive irradiation of his brain; x-ray therapy
to his brain twice a day for 15 days. Mark is married and has a 16-year-old
son. Hi, Mark.
Mark:
Hi.
Dr. Harpham:
Welcome to the group.
Mark:
Hi. I'm happy to be here, and wish we had more of these conferences for people
like us.
 Dr.
Harpham:
And hopefully we will. And now I'll introduce our next guest, Wendi, from California.
Wendi is a caregiver for her significant other, a lung cancer survivor. Wendi
and her boyfriend were recovering from an auto accident when her boyfriend developed
a cough. As they were seeing a rehabilitation doctor on a monthly basis for
the injuries, Wendi suggested that her boyfriend have the cough checked out
when he went in for his monthly visit. The doctor noticed a lump on his neck.
Scans and biopsies determined that he had lung cancer that had metastasized
to the trachea, the windpipe, and to his brain. He was treated with chemotherapy
and radiation. Wendi, who is 37, lives in California with her boyfriend and
their two boys, ages 13 and 14. Welcome to the group, Wendi.
Wendi:
Thank you very much. I'm happy to be here.
 Dr.
Harpham:
And last but not least is Jo Anne, a 60-year-old lung cancer survivor from Texas.
In 1999 Jo Anne noticed that her heart was skipping beats and she felt out of
breath. A cardiologist ordered an x-ray as part of the evaluation, and a spot
was discovered on Jo Anne's lung as well as some enlarged lymph nodes in the
lung. Biopsy confirmed lung cancer. Jo Anne was treated with chemotherapy for
seven months with five and a half weeks of radiation in the middle of that chemotherapy.
As a result of her treatment she has lost 50% of her hearing and has acquired
numbness in her feet and hands. Jo Anne is married and has four adult children.
Hi, Jo Anne.
Jo Anne:
Hi!
Dr. Harpham:
Welcome and thank you for joining the group.
Jo Anne:
I am very pleased to be here with everyone. Very pleased!
Dr. Harpham:
Now, in addition to our scheduled guests, we have other important guests, namely
you, our listeners. Please feel free to join our conversation, and you can do
this in one of two ways. First, by emailing your questions and comments to this
show using the comment box on the webcast page. Or, second, by emailing us at
webcast@acscsn.org. That's webcast@acscsn.org.
I will take as many questions as I can, and those that I can't include will
be answered in writing by the Cancer Survivors Network staff. Well, we have
lots to talk about. Let's get started.
Finding Credible Information about Lung Cancer
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Lung cancer is the most common type of cancer and is the leading cancer killer
of both men and women. Each year more Americans die of lung cancer than breast,
prostate and colorectal cancer combined. And yet, for many patients when they
first learn that they have lung cancer, they don't know much about the disease
or its treatment. If you believe that knowledge is power and that knowledge
enables you to be your own best advocate, how do you get the knowledge you need?
Mr. Landers, as the Winston Man, you knew a lot about cigarettes. How much did
you know about lung cancer and what to do when you were first diagnosed?
Alan:
 Absolutely
nothing! It was a nightmare. I was totally shocked and I went into panic. I
thought I was going to die for sure and I prayed to God for strength. I knew
nothing about it. In fact, I didn't even have any symptoms, the first lung cancer
that I had. I went in thinking that I had a hernia repair operation, and they
x-rayed my lung and they found the tumor on my right lung the size of a golf
ball. I wound up having two lobes removed and I was just praying to stay alive
and stay positive about everything.
Dr. Harpham:
What did you do about finding out about cancer?
Alan:
What did I do since then?
Dr. Harpham:
No. When you learned you had cancer, how did you start learning about the medical
aspects of cancer, the work-up, the treatment and dealing with it?
Alan:
Well, then I started reading a lot about it and looking at the research to find
out what type of cancer I had, and talking to the doctors and the specialists
and try to get as much information as possible. Because as you said earlier,
knowledge is power, and the more that I knew about it the less fear I had about
it and just said, "Okay, this is what I have to do." I had to change my whole
lifestyle and lead a very--put the odds in my percentage because twice I was
given a five percent chance that I would only live for five years. So, that
really said, "Hello!" Let's do everything to change those odds by listening
to the doctors, praying to God, having a strong spiritual connection, eating
properly, exercising; just a complete change of lifestyle.
Dr. Harpham:
So, knowledge helped you because it tamed your fear, and knowledge helped you
know what you could do.
Alan:
Exactly.
Dr. Harpham:
Where did you go for information? You mentioned books. How did you know which
books were good and which ones weren't?
Alan:
Well, there's a place in San Francisco called the Alpha something that had a
book out. Somebody, I think a doctor or somebody told me to read it because
I was terribly depressed. Not only did it attack the disease itself, giving
you all the information, but it also gave you psychologically how to deal with
it, and that was very helpful for me. So just by talking to doctors and talking
to the American Cancer Society, your organization and just any place I could
get the information that I could stay positive.
Dr. Harpham:
When you read something or learned something, did you talk with your doctors
about it?
Alan:
Oh sure, yeah! I discussed everything with them. But at the same time, it just
made common sense to me was that if they tell you you've got a five percent
chance of living five years that you want to change the odds and put them in
your favor as much as possible. So that meant diet, exercise, plenty of rest,
a positive outlook, a strong spiritual connection. I'm a very strong believer
in God, and just taking one day at a time and going right through the pain,
because I had pain whether or not I was doing exercise. If I was doing nothing
I was in pain. I figured I might as well do the exercise.
Dr. Harpham:
And help yourself.
Alan:
Oh yeah. And it worked fantastically. I thank God that I'm alive. Also mentally,
every day I get up in the morning, I thank God for another day of life and I
say let me get through this day with love in my heart, a sense of humor and
a positive attitude. That's the way I go through the day.
Dr. Harpham:
Now Mark, you were a young nonsmoker. I'm guessing that lung cancer was not
something you worried about. So, where did you go for information after you
were diagnosed?
Mark:
I immediately hit the Internet. I found out so much information it was overwhelming.
And I started to get into different websites and discussion boards and--
Dr. Harpham:
How did you feel when you started reading about lung cancer on the Internet?
Mark:
It scared me. It still scares me; the statistics and all. You're not supposed
to believe in them, but they're not the best; got less than five percent chance
of surviving for five years. I try not to always dwell on that. And I had my
oncologist tell me that in June I was in remission.
Dr. Harpham:
Right.
Mark:
But in the same sentence, she said this type of cancer will come back, and come
back with a vengeance. That sort of threw me for a loop because I asked her,
"How am I supposed to react to that? I'm happy it's in remission, but now you're
telling me it's going to come back." So it's still very, very confusing.
Dr. Harpham:
Well, you mentioned that when you first hit the Internet it was overwhelming.
So how did you begin to sort through the information?
Mark:
I sorted through starting with small-cell and then got into extensive small-cell
and--
Dr. Harpham:
So you went to your diagnosis?
Mark:
Right.
Dr. Harpham:
Now, how did you know which sites were good and which sites might not be so
good?
Mark:
I really didn't. I just took a shot in the dark and went to as many as I could
find.
Dr. Harpham:
And what happened over the next couple of weeks as you acquired this information?
Mark:
I felt more in control of the cancer because I knew more about it. It was like
a personal quest, you might say, because I wanted to learn everything I possibly
could about it.
Dr. Harpham:
So, even when you learned things that were upsetting it made you feel more in
control?
Mark:
Right. I felt--
Dr. Harpham:
Did you check the information with your physician?
Mark:
Yeah. I had asked her a few times about it, my oncologist, and she even gave
me a couple of websites to check out, which I thought was nice.
Dr. Harpham:
Do you remember which websites she recommended?
Mark:
Lung cancer online, www.lungcanceronline.org.
That's a good site I found, and www.webmd.com.
I go to that one a lot.
Dr. Harpham:
Now, you mentioned you looked at medical information on the Internet. Did you
look at any other source of information or support on the Internet?
Mark:
Yeah. I got through to a list server on email for lung cancer patients, and
every day I get probably ten, fifteen messages from people. We keep each other
updated as far as our condition and different tests we've had, and stuff like
that.
Dr. Harpham:
So, you continue to do that even though you're done with treatment?
Mark:
Right.
Information: A Weapon of Defense in the Cancer Battle
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Dr. Harpham:
How do you think information helps you?
Mark:
It helps me by, I don't know--I've always been the type--I want to know. If
something's wrong with me, I want to know exactly what's wrong. What's it all
entail? Before I heard the word "cancer", I just thought, "oh, cancer." I never
realized there were so many different types. I try to educate people about my
disease because a lot of them are still, "Well, I had a friend that had cancer
and he's fine, and you're going to live," and all this. But then when I try
to explain it to them; different cell types and this and that, they just look
at me like I'm stupid or something.
Dr. Harpham:
Because cancer is not just one disease; it's really almost 200 diseases.
Mark:
Right, right. But I was like everybody else. I just heard the word "cancer"
and I just thought that was it. I didn't know there was thyroid cancer and bone
cancer and all the many different types. All you hear about mostly, unfortunately,
is breast cancer. I'd like to hear more about lung cancer research, but for
this being November--being lung cancer month--I haven't seen much that has impressed
me much.
Dr. Harpham:
And again, that's why we're doing this show. To get out the word about lung
cancer so people can learn about it. Wendi, how did information play into your
boyfriend's survivorship?
Wendi:
 Well,
he didn't look into things very much. I was the one that did. I found looking
through the Internet was a very resourceful tool, and the hospital that he is
going to also has their own website, which became very helpful. There's also
books out there, which I also got through the hospital.
Dr. Harpham:
And how do you think it helped you as the caregiver?
Wendi:
I think having information is one of the best weapons you can have.
Dr. Harpham:
Why is that?
Wendi:
The more you know about it, even though it's scary as it is, you know what you're
dealing with and kind of what to expect and what you're going to have in the
future that's going to come up.
Dr. Harpham:
So you can prepare a little bit.
Wendi:
Correct.
Dr. Harpham:
And what did you do when you read things that were upsetting?
Wendi:
Well, I tried to explain a little bit to him--what was going to happen to him
and how--as he was getting worse with radiation and chemo. On the hopeful side
of it, which there isn't too much out there on the hopeful side when it's metastasized,
especially for the survival rate. And my doctor was pretty honest with us about
it, that his survival rate for under six months was even very dim. But he passed
that and is doing good, too. So at least you know what to expect; if it's good,
that is all the more--
Dr. Harpham:
And it sounds like reading allowed you to see the other side of where you were
right now? Meaning; while you were dealing with the rigors of treatment, reading
helped you see that there was a side after treatment?
Wendi:
Right.
Dr. Harpham:
What about you, Jo Anne?
Jo Anne:
 Well,
when I was first diagnosed I also spent about a week in the hospital. And all
of the oncologists, I had about three or four doctors that I was being cared
for by, every one of them were very good about giving me information. My oncologist
said to me, "I know, Jo Anne, you're going to hit that Internet, and that's
fine, but I want you to bring whatever information you find there to me so we
can talk about it." And I must say that, like everyone else, some of the information
can be quite depressing. But knowledge is power! And it does give you a sense
of knowing what you're talking about when friends, family have opinions or want
to speak on the subject. You know yourself what you have discussed with your
doctors, your healthcare givers, and it just gives you a sense of comfort, I
guess. I mean, it's a scary moment. I think I probably was in denial for an
awfully long time.
Dr. Harpham:
Or it was just hard to believe it was true?
Jo Anne:
Well, really, I mean I was going through the [laughs] you know, getting up and
going off. This person picking me up and taking me to my chemo and to radiation
but I would come home and I would be so weak, and I would sit there and say,
"I can't really have cancer! This can't really be true!"
Dr. Harpham:
Yeah.
Jo Anne:
So I was going through the motions for a long time. But having that information
really helped me with dealing with other people and explaining to other people
what was going on with me.
Dr. Harpham:
Well, every guest has mentioned that when they first learned of their diagnosis,
not only their initial reaction but what they initially learned was very upsetting,
it was very depressing.
Nonsmokers and the Diagnosis of Lung Cancer
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Dr. Harpham:
I want to note that the Cancer Survivors Network is a very good site for getting
hope beyond just getting medical information. And when people register on the
Cancer Survivors Network, I think they'll find access again, not just to medical
information, but to hopeful information about dealing with lung cancer. A number
of our listeners have emailed some questions, and Joan, who recently lost her
mother to lung cancer, emails us that her mother was an ex-smoker when she was
diagnosed. And now Joan is concerned about her father's risk of developing lung
cancer because he had 35 years of exposure to the second-hand smoke. Joan emails
us and wants to know if her father's risk is increased, and if and how he should
be screened for lung cancer.
So let's talk a little bit about screening for lung cancer. That's an important
question, Joan. Most types of cancer, including lung cancer, have a better prognosis
the earlier they are diagnosed. The discouraging statistics regarding lung cancer,
relate to the fact that 85% of lung cancers are diagnosed when the disease is
no longer localized--in other words, when the lung cancer is more advanced.
And when lung cancer is detected early, the five-year survival rate could reach
80%. Well, researchers are actively looking at this question. How best to screen
patients at risk for lung cancer, and they're looking at newer screening techniques
such as specialized spiral CT scans. And when you have a question like this,
"Am I at increased risk?", "What can I do about screening?" I encourage Joan
and listeners with other similar medical questions to get sound information
about these questions so that you can take advantage of cutting edge advances.
And a good starting point is the National Call Center, which is sponsored by
the American Cancer Society. The telephone number is 800-ACS-2345, and the American
Cancer Society's website also offers an easy-to-navigate search, and the website
is www.cancer.org . And another good resource
I have found is the National Coalition for Cancer Survivorship, www.cansearch.org.
Well, let's talk with our guests about the fact that not all lung cancer is
smoking related. More than 50% of those newly diagnosed with lung cancer are
former smokers or they are people who have never smoked. Nadine, you were a
nonsmoker who was not even around smoke, and yet you developed lung cancer.
Nadine:
 Right.
Dr. Harpham:
Can you tell us what it was like for you to learn that you had lung cancer?
Nadine:
Well, it was extraordinarily surreal. It just never really registered, and to
tell you the truth, it still doesn't. I still have a hard time believing that
I went through chemotherapy and radiation and surgery and I can talk about it.
It's like a complete--like almost one year of my life-- was kind of a nightmare
that is pretty much a blur.
Dr. Harpham:
Well, maybe you knew people got cancer and people got lung cancer?
Nadine:
Right.
Dr. Harpham:
Why do you think it seems so unreal? Why was that so hard to believe that happened
to you?
Nadine:
Well, first of all, I'm a health professional. I've been working as a dietician
for the past 15 years. I've been a vegetarian for twenty years. I have been
very active physically with running and swimming and hiking and biking, and
I've always been in really good shape. Even when my doctors were trying to--the
one doctor I went to who said to me, "Oh, you must have asthma or allergies."
And he kept on telling me--putting me on cough suppressants and inhalers, and
it just--nothing seemed to help. In fact, I joked and I said to him, "Well,
maybe I have lung cancer." And we both kind of laughed.
Dr. Harpham:
Because it just didn't seem possible. You were young, you had no risk factors
and you were health oriented.
Nadine:
Right. And it was just sort of chaotic that the diagnosis was what it was. Even
when my pulmonologist sat across from me to tell me what it was--when you first
hear it, it was like I was watching a soap opera. It was like it wasn't actually
happening to me. She was talking to--it was somebody else. It was somebody--talking
to the audience. [laughs] You know? It wasn't me. It just couldn't have been.
It was really hard to get that into my brain.
Dr. Harpham:
How do you think you will get it into your brain? What is it about lung cancer
that you can now understand that you can see that it really was you?
Nadine:
Well, I think that the more I learn about how people get lung cancer, who aren't
smokers or have not been around smoke. I think with more research I'll figure
out. You know, it'll occur to me, "Yeah, that was it. That's how it happened."
I need to see some kind of proof why I got lung cancer. I am not convinced how
I got lung cancer although my physicians think that it was due to having many
upper respiratory infections as an adult and a child that might have caused
some mutation in my lung that caused the cancer.
Dr. Harpham:
How did your diagnosis make you feel about all the health measures you took
before your diagnosis?
Nadine:
Well, yeah, that's another thing, too. I mean, I felt like all this eating all
the right foods was like bogus. You know, maybe it's not real. Maybe you shouldn't
even worry about nutrition after a while [laughs]. You know?
Dr. Harpham:
Well, how do you feel about that now, Nadine?
Nadine:
Well, I'm sort of--it's ingrained in me to eat healthy. I always try and eat
healthy. I eat lots of vegetables, and I'm sure I'm getting plenty of my antioxidants.
So it's hard for me to go back and say, "Well, I'm just going start eating meat
again and fried foods, and I'm not going to care about my health." Because I'm
already programmed to eating healthy. But I don't--I'm not a fanatic. If I don't
eat right one day, I'm not going to drive myself nuts. I'm pretty easy on myself
because I know that I can't completely--it's not nutrition. I mean, part of
it is. But in my case, it didn't really help me. Although possibly I could have
died if I was eating really poorly and I still had--I mean maybe the nutrition
did help me in some way. Maybe it kept me going longer.
Dr. Harpham:
Maybe your cancer occurred later. Maybe you dealt with your treatment better
because you were otherwise healthy.
Nadine:
Exactly! I mean, I went through all my treatments very well. I didn't really
have any problems. I stayed healthy. My weight didn't fluctuate very much.
Dr. Harpham:
I think these are important points.
Nadine:
Right. And I also went to somebody who did alternatives. Of course, I did all
the traditional stuff, but I went to an alternative practitioner.
Dr. Harpham:
You know as a physician and a cancer survivor myself who has been in and out
of treatment for multiple recurrences, the idea that we can affect our health
and we can affect the outcome, but we can't always control it, I have found
very helpful. Because sometimes there is this tendency, if you do everything
right and there is a setback or things don't go well, you want to throw up your
hands and say, "Nothing I do matters!" And that may be the wrong conclusion.
Nadine:
Well I believe that, even though as a survivor I'm still trying to do the best
I can. I'm still taking my vitamins and my herbs. And every time I get that
CAT scan back that says that I'm still disease-free; it makes me just want to
like keep going and taking my vitamins and herbs, and swim and hike and bike
and do all those things that I feel like I have control over.
Dr. Harpham:
So, you're trying to affect your course?
Nadine:
Right. I'm trying to.
Dr. Harpham:
Now, with these herbs and other things, is your oncologist aware of everything
you're doing?
Nadine:
Well, at first when I was under the care, when I was getting chemo and radiation,
I told him everything. In fact, I spoke to a pharmacist who was actually right
on the site where I was getting the chemo. He and I, we emailed each other back
and forth. I wanted him to know exactly what I was taking. And he would send
me information back telling me, if he approved or disapproved. And a lot of
the evidence was not conclusive. There wasn't enough evidence to say that if
you take this it's going to affect the outcome of your chemo.
Dr. Harpham:
Do you still keep him informed, Nadine?
Nadine:
No. Because I'm finished with treatment and I'm basically under the care of
the person who prescribes the herbs for me. And he works really closely with
a lot of people with cancer as well as the oncologist that I go to.
Dr. Harpham:
I'm curious why you wouldn't talk with him about what you're doing now.
Nadine:
I don't think that it's part of the plan, his plan. I think that he knows that
whatever I'm doing is not going to endanger my body. I think he trusts me that
whatever I'm on is only helping me and not hurting me. I just don't feel it's
necessary to discuss that with him.
Dr. Harpham:
On a slightly different topic--you were kind of a health person and you got
this diagnosis of lung cancer. How did other people react?
Nadine:
Shocked!
Dr. Harpham:
How did you deal with their reaction?
Nadine:
Well, at first it was hard for me to tell people, because it was so not something
that people would expect. I think that everybody that found out, either through
me or through the grapevine, were pretty shocked about it. They thought that
I would be the last person that would ever get lung cancer.
Dr. Harpham:
How did that affect how you did? Did that help you? Did that make it harder?
Nadine:
I think it made it harder, because I had somewhat of a feeling of, a little
bit like shame. Like what did I do wrong to get this? You know, and had to explain
to people why I got it.
Dr. Harpham:
Mm-hmm.
Nadine:
You know, I always had to feel like I had to give an explanation.
Dr. Harpham:
How do you deal with their reactions now, Nadine?
Nadine:
I think that I talk too much about it. [laughs] And I do. I still do a lot of
explaining. But people, I think they come to me for advice. Like a woman I work
with now found out that she has a recurrent breast cancer, and we talk about
it a lot and I try to give her information that helped me. And I think that
I feel good that I could be a resource, like a form of resource for her, and
just try to make her feel optimistic that it's not as bleak as maybe it was
years ago. That there's a lot more out there now, and I just feel more optimistic
and I try to convey that to her.
Dr. Harpham:
So, what you've learned you're sharing with other people?
Nadine:
Right. Exactly.
Dr. Harpham:
Mark, you too were a young person who had never smoked. So how did you feel
when you learned you had lung cancer?
Mark:
It set me back in my chair, I tell you! [laughs] I did not expect to hear that.
I was thinking it was pneumonia. That's what my doctor thought it was, too,
at first. But hearing lung cancer, it actually took my breath away from me for
a couple seconds.
Dr. Harpham:
How do you think the fact that you didn't smoke affected your reaction to the
diagnosis?
Mark:
I didn't expect it. I'm only 42 years old. I thought I'll just keep going forever,
working and doing what you do to support your family, and never in my wildest
dreams dreamt I could get lung cancer.
Dr. Harpham:
What about the reaction of your family and friends?
Mark:
Shock! Shock and disbelief. A lot of them, "Are you sure?" "You should go to
a different doctor." "Why don't you go to this cancer center over here, or go
down to Texas or New York or--" Nobody wanted to believe the doctors around
here.
Dr. Harpham:
So it was hard to believe it was true. Was there any sense of "This isn't fair,
I didn't smoke"?
Mark:
Oh, yeah.
Dr. Harpham:
Or did you have people saying, "Well, did you smoke?" That sort of thing?
Mark:
A lot of people saying, a lot of people thinking that.
Dr. Harpham:
Thinking that, or saying that?
Mark:
Thinking that. You must have smoked at one time. Or, it's all cigarettes.
Dr. Harpham:
How did that make you feel?
Mark:
I can't blame it on that. I don't know, I've worked with a lot of different
types of chemicals throughout my life, and then you start thinking about that,
you know. Was it this one time? Did I get exposed? A lot of different questions
go through your head.
Dr. Harpham:
So, like Nadine, you kind of wanted to know why it happened to you.
Mark:
Right.
Dr. Harpham:
And it's as if knowing why it happened would somehow make you feel better?
Mark:
Make it better, yeah. There are no answers out there.
Dr. Harpham:
You wanted answers.
Mark:
Yeah.
Dr. Harpham:
Do you feel any differently about it now?
Mark:
I've accepted it. Come to terms with it. I don't like it, but at the same time,
I thank God every day that I'm alive and I'm not bedridden and full of pain.
I can get around. I may get fatigued quite easily, and shortness of breath is
a big problem, but I'm just glad to be alive.
The Role of Media Deception and Addiction: Smokers Reaction
to Their Diagnosis
|
|
Dr. Harpham:
Well, you know, nonsmokers who develop lung cancer can say to themselves, "Gee,
I got unlucky, but it's not my fault. I mean, I didn't smoke." Smokers who develop
lung cancer are in a different position. Everyone knows that smoking causes
lung cancer.
Mark:
Right.
Dr. Harpham:
The Surgeon General's warning about lung cancer is printed on every box of cigarettes.
So after a cancer diagnosis, smokers face the issue that they or others blame
them for developing cancer.
Mark:
Right.
Dr. Harpham:
And I have to begin this topic with our celebrity guest, the Winston Man himself,
Mr. Alan Landers. Alan, not only did you smoke cigarettes, you spent your career
encouraging others to smoke. We're interested in how this affected your reaction
to the news that you had lung cancer?
Alan:
With
the lung cancer, how I feel about it is; I started smoking when I was 9 years
old, first of all. At that time there were no labels on cigarettes and when
I did the campaign for Winston, they knew. They've known since 1940 that it
gives you lung cancer. They've known since 1953 that it was the most addictive
drug in the world, and they never told me. I never would have done the campaign
if I would have known. And now, of course, I have a lot of guilt because of
all the people that have seen my ads and said, "Oh, yeah, I'd like to be like
him. Macho and all this stuff." How many people that died? That it's all preventable.
So these people are criminals. They are like marketers of death. And they don't
care about anything except money. And we have to get nicotine controlled by
the Food and Drug Administration so we can stop this carnage.
Dr. Harpham:
Well, this is kind of personal. I hope its okay I'm asking. How did you deal
with your feelings of guilt about causing your own disease?
Alan:
No, no, I don't agree with what you're saying, "causing". That's what tobacco
people--the tobacco lawyers say to you. This is the most addictive drug in the
world. That's the scientific research. There is nothing more addictive. It's
more addictive than cocaine, heroin or any drug that's out there. So once you
become addicted to the drug, it's almost impossible to quit. I smoked the night
before I was operated on for lung cancer. What person in their right mind would
do that? That's how addictive this is. So there's no choice involved after the
addiction. The thing is to seek help, line up the proper medical support, the
nicotine patch, the Zyban©, whatever, to help you to break the addiction. Most
people, it takes six to eight attempts before they're able to quit.
Dr. Harpham:
How did you quit?
Alan:
I quit because I can't breathe, number one. I was fighting for my life, to stay
alive. I have two lobes left. They took two out of my right lung, one out of
my left lung. I mean, I have nothing but great animosity and hostility for the
whole tobacco industry. They're criminals and they're spending nine billion
dollars a year right now getting the kids addicted. They say they don't target
the children, and all the evidence suggests that they target as young as 6-year-olds.
So, these are just terrible people. They're worse than the Nazis. They've killed
more people.
Dr. Harpham:
Since you started when you were so young and you were addicted to the cigarettes,
it was kind of like not your fault.
Alan:
Of course it was not my fault! There were no labels on the cigarettes. Everybody
was smoking.
Dr. Harpham:
That's right.
Alan:
Doctors advertised cigarettes as being healthy; the athletes, "I Love Lucy"--
Dr. Harpham:
Yeah.
Alan:
--every place you looked. The movies, all the stars were smoking. They knew
that they had a deadly product and they conspired to hold it from the public,
so how is that my fault?
Dr. Harpham:
Well--
Alan:
When I was a kid, I saw a can of Drano. It had a skull and crossbones on it.
I didn't drink that. If that was on a package of cigarettes, I never would have
smoked. And that's what should be on it, if not taken off the market, eventually.
Dr. Harpham:
And that's where we are today, trying to deal with lung cancer today. Jo Anne,
I know this guilt issue was a difficult issue for you. Can you tell us about
that?
Jo Anne:
I
found that it was very difficult. Everyone that found out that I had lung cancer,
the first thing [laughs] --I mean the FIRST thing they say to me was, "Did you
smoke?" And that was a very, very hurtful statement to me because I was not
proud of it now. I was never proud of it, but it was just exactly as Alan says,
it was an addiction.
Dr. Harpham:
How long had you smoked, Jo Anne?
Jo Anne:
I was about 13 years old when I had my first cigarette. I was introduced to
it, and [laughs] you know, and that was that. And I smoked through high school,
just like everybody else in the 50's and 60's. For me anyway, it was the "in"
thing to do. I mean, it's what you did. I agree so much with Alan here. If there's
one thing that I really think about is the youngsters; the school children.
It was like me. Yes, I know that when you have cancer; you get chemo, you get
sick, you throw up, but there's a lot more to it than just--it isn't just throwing
up. It's [laughing] REALLY throwing up. It's being REALLY sick. I don't think
the kids know this. I didn't, and I was an adult. And I think if the kids understood,
they might have that fear of how sick, of how you cannot control, sometimes,
your urinary tract. There's a lot of things when you're in chemo--
Dr. Harpham:
So not just giving the diagnosis?
Jo Anne:
No!
Dr. Harpham:
But really giving the ins and outs. Let's go back to the guilt issue, because
I think it's important.
Jo Anne:
Yes, it is.
Dr. Harpham:
And it's important for a lot of our listeners.
Jo Anne:
I still feel guilty sometimes, but--
Dr. Harpham:
Well, let's talk about when you were first diagnosed. How did guilt come into
it? What were you thinking or feeling?
Jo Anne:
I remember that day, and my husband and I got into our pickup, and I had cigarettes
in my purse. I put them in the litterbag and I never smoked another cigarette,
and I cried. I felt this is my fault. I am sick. My family is going to go through
this because of my addiction. I pretty much knew what was going to be going
on.
Dr. Harpham:
How did you deal with that guilt?
Jo Anne:
I prayed a lot. I mean, my faith became very strong. I asked for that to be
relieved of me. It's just something I really just lived with. [laughs] You know,
if I wasn't praying, I was saying, "Okay, I've got to get this out of my mind.
I've got to stop thinking this way."
Dr. Harpham:
Do you still feel the same amount of guilt now or has that changed?
Jo Anne:
Not the same amount now. But, I mean, in the beginning, and I still do have
people who will now say--I'm in remission for two years--they'll say, "Well,
did you smoke?" It's like saying, "Well gee, how much red meat did you eat?"
if you had a heart condition? It seemed like a pointless thing to say, and it
caused me pain.
Dr. Harpham:
What do you say? What do you say to them in response?
Jo Anne:
Yes, I smoked. And usually when you say, "Yes, I smoked," not much comes back
at you. I mean, I think people become aware that that was kind of an intrusive
question. I thought it was an intrusive question. It was very, very hard. It's
emotionally difficult to live with the guilt of knowing that you smoked, and
that all the time that you were smoking, you know that lung cancer can happen.
Dr. Harpham:
And on the other hand, you have gotten through this?
Jo Anne:
Oh. Well you have to. You have loved ones that care about you.
Dr. Harpham:
And that's an important part of this story.
Jo Anne:
Oh!
Dr. Harpham:
Because when you first found out and you felt guilty, you thought what you'd
be putting your family through?
Jo Anne:
Oh, yeah!
Dr. Harpham:
But now you are on the other side.
Jo Anne:
Yes. And I was fortunate to have a very supportive family. But the cancer patient
thinks differently than those that are surrounding them.
Dr. Harpham:
In what way?
Jo Anne:
Well, I just think that you feel guilty. You feel that you are not only guilty
that you smoked, you are causing pain and aggravation and financial problems
for the very people that you love. What are the people around you going to think
of you? It's just a really unpleasant place to be.
Dr. Harpham:
It's really hard. Now when--
Jo Anne:
Guilt is not good. But we have it.
Dr. Harpham:
Right. Well, I often talk about guilt is good when it helps you do the right
thing, helps you make a good move, and guilt is bad when it doesn't help you
in any way. It just makes life worse.
Jo Anne:
But it's time. I really believe, Doctor, it's time. I do believe we have to
allow ourselves that time and even though we have this guilt, we have to eventually
come to the point of where we care about ourselves, we really love ourselves.
Dr. Harpham:
And forgive yourself.
Jo Anne:
And forgive yourself! One of the health care professionals made a big point
of me smoking. And I was really very shocked by that, you know? But, I mean,
I knew what I had done and I felt real bad. I felt real bad what I was doing
to the people I loved. That's pretty much where I was at.
Dr. Harpham:
And one thought to keep in mind is though the smoking may or may not have been
related to the lung cancer, you didn't smoke so you could get lung cancer, and
you--
Jo Anne:
Absolutely not!
Dr. Harpham:
--you didn't smoke so that you could hurt anybody else.
Jo Anne:
Nobody does! We all make our choices, and when you're young, your choices may
not always be in line. But like Alan, nobody knew. From my age group, nobody
knew. And it doesn't make you feel better to make excuses for yourself, but
nobody knew.
A Caregiver's Perspective on Lung Cancer
|
|
Dr. Harpham:
Well, let's look at the side from the caregiver. Wendi, you're the caregiver
for a man who smoked and then developed lung cancer. Can you share with us what
your feelings were when you learned that he had a type of cancer that we know
can be caused by smoking cigarettes?
Wendi:
Well,
actually I was a smoker myself, too.
Dr. Harpham:
Okay.
Wendi:
He is still not convinced that it was all related to cigarette smoke. He was
a mechanic for 15 years and he was around a lot of diesel fuel and other types
of chemicals, too, so who's to say if it was one or the other. But, I do agree
with Alan a lot on the smoking. People aren't informed about it enough from
our age group. We didn't know that it was doing this type of thing to people,
and with trying to quit, yes, he blames himself. We both quit for quite a while,
and then he went back to it and so did I. And whereas, I quit a couple times,
and I'm still continuing to quit and have not smoked, he has gone back to it.
And I know it's just a matter of time before the cancer will come back anyway--the
bad cough's back and everything. I'm not saying being abstinent from it will
completely make it not reoccur, because I know that this cancer is very aggressive
and will more than likely reoccur, but you don't need to put fuel on the fire.
So, it's a high topic of a lot of our arguments.
Dr. Harpham:
What about the guilt component, Wendi?
Wendi:
Yes, he had that, and I understand, especially when he was given such a short
life span as the original diagnosis. That when he stopped smoking and he had
beat those odds and was doing really good; to go back, and he was guilty as
it was. But I don't understand, in my opinion, why he even went through all
the pain and misery of chemo and radiation, if he was going to go back to smoking.
It's just so difficult to understand after everything that's been happening
or happened.
Dr. Harpham:
And what about the issue about your two sons being exposed to the smoke?
Wendi:
They're not allowed; cigarettes aren't allowed when my kids are around, at all.
My boys are from a previous marriage. Their father smokes and still continues
to smoke. They don't even like the smell of it, especially because when we quit
smoking, they were in that atmosphere in a home that didn't have smoke in it
anymore. Whereas, they were raised and were constantly around it, they didn't
realize what it was like to be without it. And they got their sense of smell
back and everything and they like not having smoke around them. Now it really
bothers them to be around smoke. So no one is allowed to smoke around my kids.
Because, the fact that I didn't even know what cigarette smoking could do, now
that I've lived through it with someone that has first-hand. I've seen it; what
it can do to you and how it can destroy a person. I keep thinking, "Oh my God.
If my kids had gotten this, it would have been my fault." And that would have
been a major cause of guilt also.
Dr. Harpham:
Mm-hmm.
Wendi:
Thinking that you can give this to somebody else. It's one thing to do it to
yourself but it's something else to do it to someone you care about.
The 'Winston Man' Speaks Out
|
|
Dr. Harpham:
Well, if you'd like to join our discussion with questions or comments, please
email us right now using the comment box on the webcast page, or emailing us
at the ACS, American Cancer Society, CSN, Cancer Survivors Network. And that
email address is webcast@acscsn.org.
I will take as many questions as I can, and those we can't include will be answered
in writing by the Cancer Survivors Network staff.
One of our listeners emailed us that he is interested in what Alan thinks about
Phillip Morris still targeting young smokers.
Alan:
I'll
be happy to tell you what I think about Phillip Morris. Anything that comes
from the tobacco companies are lies. That's all you're ever going to hear is
lies and deceit. Right now, they have a campaign out on television where they
say they're your friends now. They're the good guys. That they're going to bring
you a Meal-on-Wheels. First they give you lung cancer and then they bring you
a hot meal. So, it's ludicrous! And then they're disaster relief? Come on, now.
They're the ones that have caused the disaster in the world with tobacco. It's
going to bankrupt our health system if it continues on. So I think anything
that the tobacco people tell you is lies! They lied when they said nicotine
wasn't addictive, when they said it didn't give you lung cancer. They have their
own PR firm that puts out an anti--well, it's just a terrible campaign that
they're doing. Now they're trying to come up with the safe cigarette. So they're
admitting now, that their cigarettes that are out aren't safe for the first
time. Don't believe anything you hear from them. If they're doing something,
it's probably for litigation purposes, where they're trying to affect the jury
pool so they won't get punched real heavy with punitive damages. So, they are
not nice people. They are criminals.
Dr. Harpham:
Well, I want to share one more question from one of our listeners. James emails
us that he feels guilty about not pushing harder to have his wife screened more
closely before her diagnosis of lung cancer. It turns out that a few years before
her lung cancer diagnosis, an x-ray showed a shadow of some kind. Her doctor
performed a bronchoscopy, which is a direct look at the inside of the lung airways
with a fiber optic scope. Well, nothing abnormal was found and no further follow-up
was done, apparently. So, in the summer of 2001, James' wife developed symptoms
including coughing up blood, but she didn't seek any medical attention. It was
only after she told her husband that she had these symptoms that she saw a physician.
At which time, her lung cancer had already spread to her brain and adrenal glands.
Well, James feels that because he didn't push harder for closer follow-up over
the years, after that x-ray with the little shadow, his wife was denied the
possibility of being a cancer survivor.
You know, it's very common to look back and ask, "Oh, what could I have done
differently? How could I have prevented this outcome?" And, as I mentioned a
few minutes earlier, guilt is useful when it helps you do the right thing. Like,
it's good if you feel guilty about smoking and this guilt helps you quit smoking
cigarettes, for instance. But feelings of guilt are really not good or useful
when they don't help you do anything and they just make life worse for you or
those around you. I think the facts about James' wife's condition may help him
let go of his feelings of guilt. It may help James, if he gets some facts. Like,
if he finds out that the lung cancer was not related in any way to the shadow
seen and evaluated years earlier. And also, if he reminds himself that it's
always easy to look back at a situation once you know what the problem and the
outcome are. Then, knowing the answer, you can say, "Well I should have done
this or that." It's not really fair when we do that to ourselves because things
are always clearer in hindsight. Grief is painful and hard under the best of
circumstances. And when grief is complicated by a sense that maybe more could
have been done, or feelings of guilt, it may be very helpful to talk to people
who can listen and understand and help you through the grief. And I'm thinking
here that James may benefit from talking with a grief support group or a counselor.
Grief support services are also available on the Internet.
Well, James, along with some of our other listeners who have emailed questions,
wants to know, "What's the best way to screen for lung cancer?" Some other people
emailed, "What's the best or latest treatment for lung cancer?" We talked in
the beginning that there are many ways for patients to become informed about
their options and to seek the best options in diagnosis, treatment and follow-up.
For many patients, gaining this information and discussing it with your physicians
allows you to work as partners with your health care team. And I think about
Nadine taking her alternative therapies. When you work as a partner with your
physician, you can maximize the chance that your physician knows everything
about you, has all the clues to the puzzle, and can guide you. So, it is a teamwork
thing. The obvious benefit is that you maximize your care and hopefully maximize
your outcome. But the other benefit is that you increase the chance of knowing
that you've made the right decision, and this can help everyone deal with the
challenges and the setbacks, or when, like in James' wife's case, when the cancer
does not respond to the best available treatment. I think that this open communication
and this teamwork and being knowledgeable makes it easier to deal with other
people's reactions and questions, too.
And that leads us to the next topic, which is dealing with others' reactions
to the diagnosis. Mr. Landers, Alan, how did other people respond to your diagnosis?
Were they supportive?
Alan:
Very
supportive. Everybody was very kind and loving and compassionate. My brothers,
they quit smoking, thank God, so they saved their lives by doing that. And I
have a great support system, and I was also fortunate enough, which I didn't
mention before, to become involved with ALCASE which is the Alliance for Lung
Cancer Advocacy, Support and Education. I traveled around the country doing
the cancer workshop; where I was blessed to get all the information from the
doctors and people in the field, and listen to other survivors express their
stories and deal with nutrition and everything else. So I was very lucky and
that's what I do now.
Dr. Harpham:
What were the things that other people did that helped you?
Alan:
What other people did that helped me?
Dr. Harpham:
Yeah, other people's either reactions, or what they did that helped you through.
Alan:
Well, they were just supportive in terms of "just do the best you can and stay
positive", and that's what I did. And like I was explaining to you with the
Cancer Workshop that was fantastic because that's a big support system. From
there I went and I started doing--I try to focus it into a positive thing. I
travel around the world doing anti-smoking presentations for the kids. So, the
guilt that I feel, I use that way in a positive way. I turn it more to anger
against the tobacco people, and try to save the kid's lives and get the kids
out there not to start smoking. Because once you start it's so highly addictive,
it's very difficult to break the addiction.
Dr. Harpham:
So, you want to make a difference?
Alan:
Of course!
Dr. Harpham:
And you are making a difference.
Alan:
Yeah, I want to contribute. I feel this is God's will. I'm here for a purpose.
It's two lung cancers later, with open-heart surgery and emphysema, so I'm using
this now as God's will. And the purpose is that; it's a miracle that I'm alive
and to make use of it. I spend all my time talking to various different groups.
I have a web site, www.Winstonman.com,
and I'm a Good Will Ambassador for the World Health Organization. I help get
regulations and laws changed. I think, just turn it to a positive thing where
you're contributing something back in terms of the guilt thing, and become an
anti-smoking advocate. Save lives!
Dr. Harpham:
And you're also a very visible example of the hope that even after recurrent
lung cancer you can survive.
Alan:
Yeah. I really feel that that's very positive for the other folks with--
Dr. Harpham:
Absolutely! And you mentioned ALCASE?
Alan:
Yeah. It's called ALCASE.
Dr. Harpham:
And I have their website, it's www.alcase.org
Alan:
Wonderful organization. Very helpful to answer questions and get support.
After Treatment: Fear and Finding Emotional Support
|
|
Dr. Harpham:
Now Mark. Can you tell us a little bit about other people's reactions? What
helped? What hurt?
Mark:
What helped was, in the beginning everybody's thoughts and prayers, and you
could see it in their faces how much they truly cared. But that was back in
February. And here we are close to Thanksgiving. I am getting fewer and fewer
visitors. People are, I don't know, it seems like they have lost interest in
it or something.
Dr. Harpham:
Well, you're done with treatment, right?
Mark:
Right.
Dr. Harpham:
So, might they think that because you're done with treatment you're fine? You're
back to normal? It's in the past?
Mark:
That's what they think! They can't figure out why I'm not back to work yet.
I tell them that I can't. Anything that I try to do, physical labor, I get extremely
fatigued and short of breath. "Well, you look good. Why aren't you working?"
Dr. Harpham:
This is a very common scenario. People think that the cancer experience ends
with the last treatment. In fact, I wrote a book called, "After Cancer: A Guide
to Your New Life", which is actually a bigger book than my book for dealing
with cancer, and the reason is, there are a lot of issues; medical, practical,
emotional, social, financial that arise after completion of treatment. And people
need to be educated about life after lung cancer. And the American Cancer Society's
Cancer Survivors Network offers one place to talk about and learn about life
after cancer. And, I also want to mention that ALCASE is in the CSN resource
area. And when people register, not only can they can put these sorts of resources
on [the CSN website] that will be helpful for others, but they can talk about
real issues, like the fact that people disappear after you complete treatment,
even though you still need their support.
Mark:
Right. It's needed even more now, I think, because there's still so many questions
in my mind. Is it going to come back today? How am I going to know when I'm
in a reoccurrence? Doctor's keeping a pretty good watch on me. CAT scans every
three months.
Dr. Harpham:
Mark, what do you wish your friends and family would do differently?
Mark:
Just stop in once in a while.
Dr. Harpham:
Mark, did you pursue a support group of any sort?
Mark:
Yes.
Dr. Harpham:
Tell us about that.
Mark:
I like the people in the support group, but I'm trying to find people more around
my age with my type of cancer, which I have yet to do. Most of the people in
our support group that my wife and I attend are, I'd say late 70's, early 70's,
late 60's maybe. They're all older, retired, and houses are all paid for. They
don't understand the problems I'm going through now with the finances and stuff.
Dr. Harpham:
Have you checked onto the Cancer Survivors Network support areas?
Mark:
Yeah.
Dr. Harpham:
And discussion areas?
Mark:
Yeah, I've been in there quite a bit, trying to find a tele-buddy and things
like that.
Dr. Harpham:
And I encourage you to continue doing that. And hopefully after this broadcast,
you'll make some connections.
Mark:
That'd be nice.
Dr. Harpham:
These issues after completion of treatment are very common, Mark. They are very
real. And they are very approachable. There are things you can learn and do
to adjust to life after cancer.
Mark:
I'm hopeful.
Dr. Harpham:
What about you, Jo Anne? Have you dealt with these sorts of issues with family
or friends after cancer?
Jo Anne:
Yes.
In fact, I was going to just jump in there for a moment, and I thought, "Well,
no. I'm sure that I'm going to learn something, too." Mark, I have had the exact
same type of response and I've been in remission two years now. And people do
tend, once you're out of treatment, to look at you as not being sick anymore.
Mark:
Right!
Jo Anne:
I still have my neuropathies. I still fatigue on some things, and I mean this
is two years later. I still have aches and pains in some of my joints, and it
makes me unable to do certain things. My hearing is not as it should be, but
I really know exactly what you're talking about. It's as if you have never been
sick.
Mark:
Right!
Jo Anne:
It's as if you're-- [laughs] it never happened!
Mark:
You're all well! You're cured!
Jo Anne:
You're
well, and get back to the order of life.
Mark:
They think you're cured.
Jo Anne:
You
know, that's right. That's very real. I've experienced it. I'm sure many have
because it is so real, and what I believe is that much of what each one of us
are experiencing; there are hundreds going through the same thing.
Mark:
Right.
Jo Anne:
I
really believe that.
Dr. Harpham:
And I really wish everyone listening would register to find each other to support
just what Mark and Jo Anne are talking about.
Jo Anne:
Yeah. I mean it's such a real thing. And I think what everybody is saying there
is such reality to it. Sometimes we don't have someone to say that to. You know,
like I said, two years. I mean some of the family look at me and say, "Well
yeah, but you know, you're two years out! Look at you. You're up!" But I also
have my other thoughts. You know, I still live with some fears.
Mark:
Right. I have a lot of fears.
Jo Anne:
Yes.
I do too. I have the same fears of each time I go and get my CAT scans and x-rays.
I mean there's a certain--[laughs], we all know there's a thing to that.
Mark:
Don't you hate that waiting for the results? That's the longest sixty days.
Jo Anne:
Oh!
Well, you know, it's a whole month of feeling horrible, isn't it?
Mark:
Yes. It's terrible.
Jo Anne:
I
mean, just before you go and get your x-rays, you're feeling depressed and upset.
Mark:
Right.
Jo Anne:
And
then you have them.
Mark:
You have to wait.
Jo Anne:
And
then you're waiting to go to the doctor.
Mark:
Right.
Jo Anne:
It's
the whole routine. And it's a difficult routine for anybody who has been through
this. And the truth of the matter is family and friends can really, I guess,
just support you to a certain point. Some of it, you have to just kind of--I
have found I cannot expect people to understand, who have not been through it.
Mark:
Right.
Jo Anne:
And
that's difficult, too. [laughs] You know.
Dr. Harpham:
But understanding that helps. Knowing that there is a certain divide, that there
are certain things that they may not be able to appreciate, but other people
who have been through cancer can help.
Alan:
This
is Alan. I was going to say, what I do from my experience, I just tell them
the truth. They'll say, "Hey Alan. You look terrific." And I say, "Yeah, thank
God," and everything. But meanwhile, I have shortness of breath.
Jo Anne:
Yes.
Alan:
I
have diminished breathing capacity. I get tired real easy. Even when I do the
speaking engagements, I tell them I can only do so much, and I just tell them
the truth about it. And then they understand.
Dr. Harpham:
So you're honest. You teach them, Alan.
Alan:
Yeah.
Dr. Harpham:
That's great!
Alan:
Yeah. And what you said is so true; by the way, about every time I go for a
CAT scan my stomach is in my mouth. And it's like a nightmare. But you learn
to live with that.
Jo Anne:
Yes.
Alan:
And
you thank God for every day, and it's just one day at a time is what I find
is the only way you can deal with this and stay positive. That's the most important
thing, because negativity serves absolutely no purpose at all. And instead of
being the victim, so to speak, you know, "They're not acting the way I want,"
try to walk a little bit. Walk a block if you can. Or walk five minutes, or
build up. Get a project for yourself that makes you feel like you've accomplished
something. And it's also going to accomplish something because it will make
you stronger. That's all you can do, is just the best you can.
Jo Anne:
That's
right.
Dr. Harpham:
And Wendi?
Wendi:
Yes?
Dr. Harpham:
As a support person, what do you think you learned about helping someone through
cancer?
Wendi:
Well,
I agree with everything everybody said. Especially, even though I haven't physically
gone through it myself. My boyfriend has not sought support groups, mainly because
he is in a young age group. Everybody that he was in radiation and chemo with
were in older age groups, so it's hard to relate to them. I've been really trying
to get him to get into something. And I thought, me getting involved with this,
would also be a little bit of a boost for him; to seek a little bit of help
from someone, for him to be able to talk to other than me, someone that's been
through it themselves. And like Jo Anne was saying, he's had a lot of damage
from radiation; the numbness, the aches, the pains. He's got a lot of nerve
damage. There is a lot of brain damage also from the radiation to the brain,
short-term memory. Not his personality or anything, but there's a lot of things
that are going to be with him for the rest of his life.
Dr. Harpham:
And how can you help him?
Wendi:
I'm just trying to get him to talk to people--to other people that have gone
through it. Things that I can't understand even though I've been with him, that
I haven't physically felt myself.
Mark:
I think I should talk to him.
Wendi:
I think you should.
The Financial Toll That Cancer Can Take
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Dr. Harpham:
Well, and again, I encourage everyone to register to the ACS CSN. Well, I got
an email from a Carrie who is wondering what she can do about her father, who
has lung cancer and he lost his job. So she sees him sitting at home, and she
is worried that he is slipping into a depression. Carrie is concerned about
the effect of not only her father's disease, but the effect of losing his job
on his condition. That reminds us all that cancer creates not only physical
and emotional challenges, but also financial challenges. Cancer treatment is
very expensive. And if you take time off from work or you lose your income,
this can be a serious problem. Something people often don't talk about are the
non-medical added expenses. Babysitters if you have children. Transportation
if you don't have a car. And yet, many people don't want to talk about the financial
stresses because they worry that it's not proper to care about money when you're
talking about someone's health.
Mark:
One of my biggest concerns is my finances.
Dr. Harpham:
Tell us about that, Mark.
Mark:
It's terrible. Okay, my wife is on long-term disability for chronic fatigue;
fibromyalgia. And two weeks ago we got a letter from that insurance company
saying, "This is it, you're terminated. No more payments." Now I am just starting
to get my Social Security Disability income. So that has caught us totally by
surprise with her losing her income. So now we're fighting her Social Security,
which has been in the deal for three years--
Dr. Harpham:
Have you gotten any help dealing with the financial issues?
Mark:
I haven't found help yet. Every place I go to, I tell them about my 401K, you
know, they want to know everything about you. I tell them about my 401K through
work, and, "Nope, nope, can't help you with that. You got to get rid of that."
And I say, "Well I can't get my 401K until I get terminated, which will be in
January because I'll be off work for a year." And then in January when I get
terminated, I go onto the COBRA health insurance, which goes up to $845 per
month. I cannot see how they expect people to pay that. That's a big concern
of mine.
Dr. Harpham:
So, who have you turned to for information and support about your financial
stresses?
Mark:
We've got an appointment with our minister. He's going to come talk to us and
see if we can get some help through the church, maybe. And we've been talking
to the American Cancer Society, our navigator, she's been really nice trying
to steer us on the right course, right directions. I'm just hoping that--I know
something's going to come through. Either I'm going to get my life insurance,
which I applied for already, or my wife's going to win her Social Security,
and her back pay's going to come. So I'm trying to be very optimistic about
it, but every day it's on my mind. I know it's not doing any good for me to
worry about that. I should be concentrating on staying in remission and worrying
about feeling good. But boy, them finances, they really do it to you.
Dr. Harpham:
And I so appreciate you sharing this because it's really important for people
to know that.
Mark:
It's a killer. I think it's the worst part of it. I went through the chemo and
the radiation. The money is the worst part of it. Because, like I said in my
introduction, or whatever, I was working two jobs and doing the right thing
and putting money away to retire, and BAM! The rug gets pulled out from under
you.
Dr. Harpham:
Wendi, how did the finances play into the survivorship picture? The money stresses?
Wendi:
Well,
we also went financially downhill at a quick rate. We owned the home we were
in. We lost that. He was on disability. Now he's on permanent disability, which,
when we first started going through this--once you financially get behind, it
keeps getting worse. It's like a domino effect. Once you're in the hole, you
got one foot in the hole and one foot deeper. It's hard to get out of it or
to catch up. Fortunately, the company that I work for has been very supportive
of me. I have been off a lot, taking him back and forth to the doctors, hospitals.
I finally got help through the Cancer Society on transportation, and I also
got help with the insurance. I also checked with Medi-Cal because they can sometimes
help with things that the insurance company won't pick up. Or there's other
programs out there through them, through the State also, that we got some help
for. And it's going day-to-day. Fortunately, we got permanent disability for
him, so that helped us. We are renting a house now, so we've got something at
least. Once you get behind, it's just slowly trying to pick yourself back up.
Dr. Harpham:
How did all of that financial stress affect you emotionally?
Wendi:
You're constantly worrying about it. You don't have money to go to the grocery
store, let alone getting prescriptions, which there is an abundance of. I mean,
there's prescriptions like on a daily basis.
Mark:
You guys got that pit in your stomach.
Wendi:
Pardon
me?
Mark:
You always got that pit in your stomach.
Wendi:
Yes.
And then the insurance company was giving you a hard time on filling medications,
especially because he's 39 years old. They were giving him antibiotics when
he gets sick that was for a 65-year-old patient, and they wouldn't okay it.
Just because it was, you know, the insurance company had way too much power!
[laughs]
Mark:
Oh yeah!
Wendi:
And
so you got to wait, when they need medication. Plus trying to come up with the
money for that first, which you have to have that first.
Dr. Harpham:
Well, I'll tell you. When you talk about these things publicly, you let people
who care, know that we need more advocacy. So, talking about it, not only in
terms of helping you through your individual crises and needs, hopefully will
make a difference for other people.
For those of you who have been listening to our conversation today on the American
Cancer Society's CareCast and those of you, who may have joined our live discussion
on surviving lung cancer, please feel free to join us by emailing your questions
or comments to the comment box on the webcast page, or emailing webcast@acscsn.org.
And I will take as many questions as I can. Those I can't include will be answered
in writing by the Cancer Survivors Network staff.
A common challenge for people dealing with cancer is mood swings, either related
to the emotional stress, or medication-related. Wide-ranging and powerful emotions
are normal and expected after a cancer diagnosis, during treatment, when setbacks
occur, and as we mentioned, after completion of treatment. Sadness, fear, anger,
frustration, confusion, disappointment and other unpleasant emotions occur,
as do happiness, gratitude, optimism, relief and other pleasant feelings.
Mr. Landers, can you talk to us about mood swings, in particular the mood of
you, as they relate to your caregivers?
Alan:
Well
at first, like I said, it was guilt. And then from guilt it turned to anger,
and I focused the anger against the tobacco people, not letting them beat me.
And to stay alive and to keep myself going through the pain and everything else,
and just realizing that the negativity is not going to help me no matter what.
Dr. Harpham:
Was there ever tension between your moods and those of your family and friends?
Alan:
Well, of course! Yeah! I would start screaming at my brother or my sister-in-law
or my girlfriend or whatever. Sure, I would yell. I was in pain. It's torture,
you know. So I would strike out, and then, of course, I would apologize afterwards,
and I'd say, "Look, it's just because I'm sick." And they realized that, and
it's just something you go through.
Dr. Harpham:
Nadine, what about mood swings for you?
Nadine:
I
think that the time I felt depressed was after everything was over. The surgery
was over and my parents, who were my main support group, left. They went back
home, which was on the east coast, and I was pretty much left just with my boyfriend,
who was busy with his own stuff. He was in school, and my friends, most of my
friends are on the east coast and I live on the west coast. So I was kind of--I
was pretty much alone, and I think that's when I started getting depressed.
And I just kind of worked my way through it. You know? I mean, I didn't even
know I was depressed.
Dr. Harpham:
Did you turn somewhere for support?
Nadine:
I went to, well, I was part of a lung support group. Then afterwards, I went
to an overall cancer support group because the lung support group, I felt the
people were a lot older than me. The group was getting smaller and smaller and
I was getting depressed.
Dr. Harpham:
And what about when you switched support groups?
Nadine:
When I went to the other support group, I felt they were a more upbeat group.
It wasn't always about topics that would upset me. I felt they were definitely
better for me. And it was also after my treatment, so I felt I was in a different
place and I could talk about it more.
Dr. Harpham:
And those are such important points. The idea that different support groups
work better for different people, and also that your needs will change as you
go through survivorship. So what helps you at one point may no longer help you,
and you may need to look elsewhere.
Nadine:
Right, right. And I felt that when I was going through treatment I didn't want
to be alone. I had so much anxiety that you couldn't leave me alone just to
be by myself. I always had to have somebody with me. And it was very strange,
because I'm a very independent person, but I couldn't even drive my car by myself.
Somebody would have to be in the car with me or my parents would leave the house
and they would call to make sure that I was okay in the house by myself. You
know, "We'll be back soon. Everything is okay." So I was in a completely different
space when I was going through my treatment.
Dr. Harpham:
Right.
Nadine:
And then afterwards, it took a long time. I mean the recuperation from the surgery
was a pretty long haul. It was like four months. But I felt better about myself
being alone. I felt more like I used to be. But it took a long time, and I just
took every day, every day at a time. Just one day. You know, that's all you
can do. You can't.
Dr. Harpham:
You can't rush things.
Nadine:
Right. You can't rush things, and even with treatment, you know, even though
sometimes the treatments are spread apart, three weeks between chemo treatments,
you just have to take one day at a time.
Planning for the End of Life Can Help
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Dr. Harpham:
Well, time is beginning to run short. I'd like to talk about two other quick
things before we close. You know, we like to focus on surviving, and until research
produces better treatments, the sad reality is that still today many people
die of lung cancer, and all of our guests have mentioned their fears and anxieties
about this. Some people deal with the possibility that the treatment won't work
by kind of preparing for the worst and then hoping for the best.
Alan, did you deal with the possibility that your treatments wouldn't work?
Alan:
I
thought I was going to die, and I was praying to God not to die, and that's
the way I stayed through the whole process, of just asking God for strength
and hang in there through everything.
Dr. Harpham:
Did you ever make any concrete plans for if the treatment didn't work and you
died?
Alan:
No. I made no plans at all. I just thought, "Oh, my God, I'm going to die, and
I don't want to die." And I'd pray to God to keep me alive, and thank God, he
did.
Dr. Harpham:
What about Mark or Nadine or Jo Anne or Wendi?
Mark:
This is Mark. I've gone as far as gone out to my cemetery and made an arrangement
for a service and got a crypt. We're making payments on it. I've got that stuff
lined up. I want to get all that taken care of before I do die, so that my wife
doesn't have to worry about it. I seem to find myself worrying more about my
wife and son, how they're going to do when I do go.
Dr. Harpham:
And do you talk to anyone about that Mark?
Mark:
Yeah, I'm talking to a counselor about that now.
Dr. Harpham:
And how is that helping you?
Mark:
She is saying that--I like talking to her because she helps me to deal with
these problems, and she says that I've always been that type of person all my
life; hard worker, paid my bills, worried about my family.
Dr. Harpham:
Responsible.
Mark:
Responsible. Exactly. Now I spend that time, more in caring more about myself.
I'm trying to do that, and slowly but surely I'm getting there.
Dr. Harpham:
And that's a real tension for people, because when you're a patient you have
more needs, and it's good to focus on yourself to a degree.
Mark:
Right.
Dr. Harpham:
And for many people, they are focusing more on themselves more than they ever
have in their entire life. But that's actually a good thing. The other thing
is, again, talking on the Cancer Survivors Network about these very difficult
issues like preparing for the possibility that you might not do well. It's been
my experience as a physician survivor that not only does that--people think
that if they plan for the end that that diminishes hope. And I've seen so many
people for whom, when they plan for the end, it actually frees them to have
hope, and many do well. Jo Anne? Wendi?
Wendi:
This
is Wendi. I want to bring up the point of hope. My boyfriend did go as far as,
his family helping him get a plot next to his parents. At the time we didn't
know his girls had moved, and he was--he has two daughters, grown daughters,
16 and 19--that he wasn't able to find. So this might have been a blessing in
disguise, because fortunately, we were able to locate his girls and he's had
a good relationship with them. And it's like, okay, maybe this happened for
a reason. We've found them and he's been in touch with them, and it's brought
the family closer together.
Dr. Harpham:
So, something good from something bad.
Wendi:
Yes, exactly. Something good did come out of it.
Guests Share Some Concluding Thoughts
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Dr. Harpham:
Well, I'd like each of our guests to just give one closing sentence, a thought
that they'd like to share. Alan?
Alan:
I
really, you know, I just thank God every day that I'm alive, and I'd like to
say "God bless all of you. Just fight the fight, do the best you can, and God
will take care of the rest."
Dr. Harpham:
Nadine?
Nadine:
I
would say that focus on the positive, what's out there in terms of treatments,
the newest latest treatments, and don't focus on the negatives. I didn't focus
on statistics and don't look at research that shows bad statistics, and just
look at the good stuff, and I think that helps. It helped me. It still does.
Dr. Harpham:
Wendi?
Wendi:
Don't
ever lose your sense of humor. Try to make a joke out of anything, [laughs]
and even when you can't find good in things, usually find someone to talk to.
Your website is a very good website that it helped me very much. And I'm honored
to be here today talking to you folks.
Dr. Harpham:
Mark?
Mark:
Well, the only thing I have to add to that would be to all the listeners and
people that are going to read this later. I never realized how much this beast
of disease affects everybody. It's not just myself; it affects my wife and my
son and my friends. And if people can just try to keep a positive attitude and
get more education, educate themselves about the disease, that helps.
Dr. Harpham:
Jo Anne?
Jo Anne:
I
have learned that no matter what changes have come over me physically, emotionally,
once again, to keep loving and caring about myself. It's just accepting me and
loving me, and also no matter what your faith is, hold on to it! And I really
appreciate being a part of this program today.
Dr. Harpham:
Well, I thank you all. This brings our first CareCast to a close. I want to
remind you that the recorded audio portion of this broadcast will be available
within a few hours on the Cancer Survivors Network website, www.acscsn.org
. In a few weeks the written transcript will be posted as part of our permanent
Talk Shows and Stories collection. Also, many of our guests are members of the
Cancer Survivors Network, and we will post their screen names along with this
broadcast. By clicking on their names, you can see their personal web pages
and send them a message. You, too, can post a web page, send and receive messages,
and participate in other on-line activities when you join the Cancer Survivors
Network through our free registration. Our special guest, Mr. Alan Landers,
can also be reached through his website, www.winstonman.com
, as well as through the Cancer Survivors Network. We have many active discussion
boards on the website, and we invite you to continue this discussion on lung
cancer, and connect with each other through the lung cancer discussion board
and chat room.
And again, let those without computers know that they can listen to our entire
show library, toll-free at 1-877-333-HOPE. Write it down. That's 1-877-333-HOPE
or 1-877-333-4673. I hope our discussion has helped to sort through some of
the issues that may be part of your life. A big thanks to our guests for their
willingness to share their thoughts, feelings, and a part of their lives with
us today. I also want to thank those of you who emailed your comments and questions
to us. I hope that some of their experiences will help you think about and talk
about your own concerns in healing ways. For the American Cancer Society's Cancer
Survivors Network, I'm Doctor Wendy Harpham, wishing each of you a great day,
today and every day.
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