Lung Cancer, Female, 55+, After Treatment and Beyond

Recorded July 3, 2003

Jo Anne username: jo anne Jo Anne's Web page	Reva	Ellie username: grant Ellie's Web page

Welcome and Participant Introductions

Karen Parles:
Hello and welcome to the American Cancer Society's Cancer Survivors Network. I'm Karen Parles, your host. Today I will be talking to three women survivors of lung cancer who are over the age of 55. As a lung cancer survivor myself, I am pleased to be your host for today's conversation as we talk about: facing the diagnosis of lung cancer, keeping faith in yourself during lung cancer treatment, keeping a journal on the experience of lung cancer, living with fears of recurrence, and educating others on risk factors for lung cancer.

Our first guest today is Jo Anne, a 60-year-old lung cancer survivor from Texas. Jo Anne is married and has four adult children. Welcome to the show, Jo Anne.

Jo Anne:
Well, thank you. This is my second time on the show, and I really enjoy them and find them very beneficial.

Karen Parles:
That's great! Now in 1999, you noticed your heart was skipping beats and you felt out of breath. A cardiologist ordered an X-ray as part of your evaluation and found a spot and some enlarged lymph nodes in your lung. A biopsy confirmed lung cancer. You were treated with chemotherapy for seven months, with five and a half weeks of radiation in the middle of that treatment. As a result of your treatments, you have experienced some long-term side effects, including loss of hearing, as well as numbness, tingling in your feet and hands. Jo Anne has also written a poem about her experience that has become 32 pages long! Thanks for joining us today, Jo Anne.

Jo Anne:
OK.

Karen Parles:
Also joining us today is Reva, a 67-year-old lung cancer survivor from New York City. Reva is married and has two adult children. Welcome, Reva.

Reva:
Thank you. Glad to be here--in more ways than one!

Karen Parles:
Yeah, right! [laughs] Exactly. Your lung cancer was first suspected in 2000 during a routine check-up. Knowing that you had smoked for many years, your doctor performed a CAT scan and found a spot on your lung. More tests and a biopsy confirmed that you had lung cancer. A few months later you had two operations a month apart. During the first operation, sections of your upper and lower left lobe were removed. The pathology report from this operation showed possible adenocarcinoma in the left lower lobe, so the lobe was removed. The surgery was successful, and two years later you are still cancer-free. You continue to see your doctor every three months and to have a CAT scan almost as frequently. Thank you for joining our group, Reva.

Reva:
Thank you for having me.

Karen Parles:
Our final guest is Ellie. Ellie is a 63-year-old lung cancer survivor from Indiana. She is married and has three adult children. Welcome to the program, Ellie.

Ellie:
Thank you for asking me.

Karen Parles:
You were diagnosed with lung cancer in 1993 when you were coughing blood and went to an emergency room.

Ellie:
Correct.

Karen Parles:
A bronchoscopy revealed lung cancer. Two weeks later your left lung was removed. You underwent both chemotherapy and radiation treatment. You now work for the American Cancer Society, advocating for lung cancer prevention. I was wondering, Ellie, whether you are an employee or you're a volunteer for this?

Ellie:
I'm a volunteer.

Karen Parles:
That's just great that you've been able to turn your experience and are able to help others through the American Cancer Society.

Ellie:
Yes, I have.

Karen Parles:
Thanks for joining us today, Ellie.

Ellie:
Thank you for asking me.

Building Your Support Network After Being Diagnosed with Lung Cancer

Karen Parles:
Jo Anne? I was wondering, what went through your mind when you first heard the words, "You have lung cancer"?

Jo Anne:
I was--well, it was like a cloud. There was a fear and yet there was a disbelief, literally. When he first told me that I had cancer, I couldn't believe it. It took me a long time to accept it, even though I was going through the treatment, to actually take a belief on it. To this day, I have no idea why that occurred [laughs], but it took a long time to believe that I had it. It seemed as though I would go for my treatments, and it was just a routine thing, and it was a very odd sense.

Karen Parles:
Right.

Jo Anne:
It was a total, probably--just a total disbelief.

Karen Parles:
Right.

Jo Anne:
And I just couldn't grab the concept of it. It was difficult. [laughs]

Karen Parles:
Right. And Reva, you stated you're not the type of person to stick your head in the sand.

Reva:
No.

Karen Parles:
What are some of the things you did to cope with your lung cancer diagnosis?

Reva:
Well, I am--unfortunately, I'm not computer literate, but my husband is.

Karen Parles:
Right.

Reva:
So as soon as we got the possibility that this was lung cancer, even before the biopsy was done, we started looking on the Web. I have a relative who is a radiologist. I brought him all my CAT scans. We discussed all the possibilities, and there was never a doubt in mind that, you know, this is what I had, and it was a question of how was I going to deal with it.

Karen Parles:
So you were very proactive about seeking out information and--

Reva:
Absolutely. Absolutely.

Karen Parles:
What are some of the resources that you turned to?

Reva:
Well, your Web site, for one.

Karen Parles:
OK. My Web site, just to let everyone know, is called Lung Cancer Online, and the URL is www.lungcanceronline.org. What it is is a directory, an annotated directory to resources on the Internet, arranged by subject. I assume then you found other resources through my Web site?

Reva:
Right. Right.

Karen Parles:
Right.

Reva:
We also--we were very fortunate. I have a cousin who is an attorney, and she does medical malpractice primarily. She had a nurse on staff in her office. Every visit that I went to, once the diagnosis was made, we had the nurse accompany us so that it wasn't just my hearing what the doctor said or my husband hearing what the doctor said. We had an impartial third party, with training, who could ask questions.

Karen Parles:
So, someone who could really advocate for you?

Reva:
Right, and it was very, very reassuring.

Karen Parles:
Lucky. That's a good thing to have. And actually the thing for people is to always have someone with them when they go to an appointment.

Reva:
Absolutely.

Karen Parles:
You know, because sometimes you're so overwhelmed at the diagnosis- -

Reva:
Yeah.

Karen Parles:
--that you don't hear everything that's said.

Reva:
Absolutely.

Karen Parles:
Ellie, how did you react to your diagnosis, and how did you tell your family and cope with it emotionally?

Ellie:
I told my family immediately. Coping with it was really--and I hate to say this--was not a problem. I've worked in the medical field for 40 years.

Karen Parles:
Ah-ha.

Ellie:
And unfortunately, as soon as I saw the X-rays, I knew what it was.

Karen Parles:
Right.

Ellie:
I was very lucky that I have a personal friend who is--was our pathologist at a hospital that I worked at, and he kind of just took me by the hand, and he said, "This is what we're going to do." And I just kind of said, "OK, you seem to know what you're doing." So that's the route I went.

Karen Parles:
So, it seemed to be helpful to then take action once you had your diagnosis, to take steps--

Ellie:
Oh, yeah! I wanted it taken care of yesterday. I didn't want to wait. [laughs]

Karen Parles:
Right! How important does everyone feel it is to find a good physician and to have confidence in your physician? Any insight on that?

Jo Anne:
I think it's an absolutely top-notch thing to do. My oncologist and the team of doctors, and that included cardiologist, lung specialist--and plus I was treated in a hospital that I am very familiar with and, I mean, oh, I felt I had a great team of doctors working for me and with me, you know.

Karen Parles:
So you really benefited from getting what they call multidisciplinary care--

Jo Anne:
Yeah.

Karen Parles:
--where you have different doctors--

Jo Anne:
Yes.

Karen Parles:
--with different specialties looking at your lung cancer.

Jo Anne:
Yes.

Karen Parles:
And I think that's a great thing.

Reva:
This is Reva, and my internist is the one who had suggested the CAT scan. Once the diagnosis came back, he sent me to a pulmonologist, and when the pathology report--when the biopsy was done, he referred me to the surgeon.

Karen Parles:
Right.

Reva:
And so, you know, that team was there in place, and since I absolutely adore my internist, I felt very comfortable with who he had recommended.

Karen Parles:
Right, and I think it's so important to have that good doctor- patient relationship when you're dealing with life and death issues, that you have confidence in your doctor. Nice to hear you had a good experience. I was wondering, Ellie, whether you turned to any other support resources, support groups, or whether you had any--whether you turned to your faith, or what you did to get yourself through?

Ellie:
Actually, I turned to my family.

Karen Parles:
You turned to your family?

Ellie:
I turned to my family. I had a niece who survived a very rare cancer, and I kind of gained strength from looking at her and seeing what she went through. Yeah. Church means a lot, and all my coworkers were very helpful. And if there was ever a question that I needed to ask about the type of cancer I had or where I could get information, I went, like I said, to my pathologist, who was a personal friend.

Karen Parles:
So you had a real network of support?

Ellie:
Correct.

Karen Parles:
Jo Anne, did you ever have a moment where you had a crisis of faith or doubt in either yourself or your doctors in battling your cancer?

Jo Anne:
Well, I was afraid of it. I really was. I knew, though, that I could not have a lot of negative things around me, because that just weakens you emotionally. As far as doubts, now my faith played a very, very major part, I feel, in my healing, and my family, although I found some of my greatest strength came from strangers that I met.

Karen Parles:
Right.

Jo Anne:
I did not go to a support group, but I used the American Cancer Survivors Network all the time. I was so grateful for my computer. We had got it just about two years before this happened, and it has been a lifesaver for me. I mean, just being able to communicate with other people and find out that they feel the same way that I do about so many things that--you know, you think you're alone, but you're not. And I think it just helps. It helps so much.

Karen Parles:
I think, you know, really, that people who can best understand what we're all going through is someone who has walked in our shoes, so- -

Jo Anne:
Absolutely.

Karen Parles:
Something like the Cancer Survivors Network really gives us an ability to connect with people that we don't have the opportunity to otherwise.

Jo Anne:
And they're dealing with their own issues, family.

Karen Parles:
Mm-hmm.

Jo Anne:
Dealing with their own fears and issues, and I know it's hard for them. I watched my four adult children, and I watched my husband, and oftentimes I would sit and I would think, I'm expecting something of them, and yet they're trying to work out their emotions and mine. [laughs]

Karen Parles:
Right.

Jo Anne:
It's very hard for them, I'm sure.

Karen Parles:
I actually wanted to ask all of you, having adult children, were there issues--were your children local? Did you have issues with keeping them informed on your disease or that they were worried, and they couldn't talk to your doctor, or they could talk to your doctor? What were some of the issues that you all faced in dealing with adult children?

Reva:
I have one daughter who lives fairly close by, but she's got three young kids. And then I have one who lives on the other coast and she has no kids, and between the two of them they were driving me crazy. [laughs] Because they wanted the surgery done yesterday, and they couldn't understand why it had to take so long. It was all of a month from the pathology report after the biopsy to the surgery for the first operation, and they thought it wasn't fast enough.

Karen Parles:
Right.

Reva:
And so that pressure, you know, I was putting on my doctor. We got to jump on this thing. Why are we waiting? It's small, and what are we going to wait for? You know, that kind of stuff.

Karen Parles:
Mm-hmm.

Reva:
But I think Jo Anne's point, that in many ways that the families had a harder time, I think, than I did.

JoAnne: Oh, yeah.

Reva:
Because it was me. You know, I was dealing with how I felt, but they were dealing with how I might be feeling.

Karen Parles:
Right. And what were the support services or avenues that your family members had, to deal with the stress that they were going through? Anything in particular?

Reva:
Friends. Friends.

Karen Parles:
Right.

Reva:
And I found people I had lost touch with, who came out of the woodwork when they heard about it. So there was a tremendous amount of support for me from friends, which was really very nice and helpful.

Writing and Other Therapeutic Avenues

Karen Parles:
Right. That's great. Jo Anne, I wanted to ask you, that many people, people who are diagnosed with lung cancer, that find writing about their experiences through diaries and poems very helpful. And I was wondering if you've done something similar, as we were talking about in the beginning with your poetry, and if you can explain to us how that's helped you?

Jo Anne:
Yes. What I have done over the past couple years, and I have not done it every day. I won't call it a daily journal, but I have filled many pages [laughs] with my feelings and with thoughts and things that I remembered. How it all came down and came together, and just--and I look back on it and there's a lot of--many types of feelings in that. I've also written some poems, and in doing that, that is very therapeutic for me. Just as I've learned how to quilt. That's therapeutic for me. So I have tried to keep track of my feelings, accept them, know myself and do things that are good for me.

Karen Parles:
Ellie or Reva? Have either of you found helpful things like writing or support groups that have helped you through things?

Ellie:
I've found really becoming involved--now, I know this sounds facetious, but with American Cancer Society, because not only do you meet other survivors of lung cancer, but you meet then survivors of the other types of cancer, and I think you just gain strength in talking to them as to how they've coped with it. And maybe they have a new mechanism that you can use.

Reva:
I think I got back involved in my life, and I am aware that I was operated on for lung cancer. I've gotten involved recently in a lung cancer support group. I was afraid to at the beginning. I was diagnosed with stage IA, and I was afraid to get involved with other lung cancer survivors, who might be stage III or stage IV, and lose them.

Karen Parles:
Right.

Reva:
And so I protected myself by not getting involved--as a coward's way out.

Karen Parles:
Well, I think it is difficult--it's very understandable. You want to keep your own mind focused on the positive, and then to be dealing with the other at the same time can be difficult. Well, how did you get to the point where you were ready to join a group, and then how did you find a group?

Reva:
Well, there's a wonderful young nurse practitioner in my surgeon's office, and she started putting a group together, and so I went to that. We meet once a month, and it's been very helpful. Not only the speakers that she has had, but also talking to--especially talking to the other survivors. And some of them are not stage I or stage II.

Karen Parles:
Mm-hmm.

Reva:
And of course, when they don't show up for a meeting, you wonder if they're still OK, but--

Karen Parles:
Yeah. I think some of the issue--it's difficult to find lung cancer support groups. There's many general cancer support groups--

Reva:
Right.

Karen Parles:
There's specific groups for the other cancers, but with the mortality rate in lung cancer and just the difficulty of people speaking up and stepping out. And what ALCASE--and ALCASE, as some of you might know, is the national lung cancer support organization--is they have kept a list of support groups across the country for lung cancer. So if you are looking for a group in your area and you can't find it, you can contact ALCASE either on their Web site at www.ALCASE.org, or--I do not have their phone number, but the phone number is on the Web site, and they have a list so that you can look for lung cancer groups that way.

Reva:
Right.

Karen Parles:
And I find that's helpful, but unfortunately there still aren't enough of them.

Reva:
The phone number for ALCASE is 800-298-2436.

Karen Parles:
Great. Thank you, Reva.

Reva:
And I found that they--my surgeon put me in touch with them, and I called and they had someone call me, which was absolutely wonderful to have that telephone contact with a survivor.

Karen Parles:
Is this through their buddy system?

Reva:
Yeah. Anita called.

Karen Parles:
Right. Oh, I see. OK.

Reva:
And that's how I got in, you know, to Anita and to everybody else. [laughs]

Karen Parles:
OK. Anita is a lung cancer advocate, and I think a lot of us called ALCASE when we were first diagnosed and were told about their buddy system, where they link you up with another survivor by telephone. Just to hear another voice of someone who is surviving with lung cancer was very helpful.

Lung Cancer's Stigma and the Lack of Public Support

Karen Parles:
I would like to discuss with all of us something that is particular to lung cancer, and that is that often people with lung cancer often blame themselves or feel guilt about having lung cancer. I'd like to get each of you to respond to how you feel about the fact that lung cancer is seen as a self-inflicted disease and that we do not get the benefit of public support and empathy and the funds that you need to make progress in treating a disease, and so if each of you could give me your views on that.

Reva:
Who wants to start? Well, I guess I will.

Karen Parles:
OK.

Reva:
The first question I asked when I got confirmation that that's what I had was, "Did I do this to myself?" And I was very fortunate; I had a surgeon who said, "No." You know, we had gone over my family background. There is a history of multiple kinds of cancers in my background, and he just made me feel that I got it. If I had gotten it on my big toe, it, you know--I wasn't responsible. Maybe I was, but I wasn't, and it made me accept--I stopped smoking instantly [laughs], but that was something else. I think having someone say to you, you know, whether you did or you didn't, that's not the issue.

Karen Parles:
Especially someone in the medical profession.

Reva:
Right. Right.

Karen Parles:
Jo Anne? How do you feel about the stigma associated with lung cancer?

Jo Anne:
Well, I was fortunate also to have one of the nurses assure me, because I also--in my family, my grandmother, my mother, my uncles, there's major cancer in my family.

Karen Parles:
Mm-hmm.

Jo Anne:
I was told that I'm just plain predisposed to it.

Reva:
Right.

Jo Anne:
And I believe that. It was still difficult for me [laughs], you know, for a while there, to think, gee, did I do this to myself? What I found more difficult was everybody who heard would say, "Did you smoke?"

Reva:
Mm-hmm.

Jo Anne:
And that kind of was, well, does that matter? I mean, if you have a heart condition, "Do you eat red meat?" You know?

Reva:
Right.

Jo Anne:
[laughs] I mean there's just so many--there's just, to me, no point. It's redundant. The thing to do is take care of what's going on. Yes, I did feel some guilt. It was made easier for me by medical individuals. I read, you know. I saw there were percentages of people who never did smoke and still had lung cancer, so I, you know, I was confused, but I probably still believe I had a little something to do with it. [laughs] Had I not smoked, it might not have. Had I--I mean, who can tell? Who knows? I mean, everything you eat is supposed to give us cancer.

Reva:
And it doesn't matter.

Jo Anne:
So, you just don't feel real comfortable knowing for sure one way or the other. I don't.

Karen Parles:
Ellie, do you have any thoughts you want to share?

Ellie:
No one ever just pointed a finger at me and said, "The reason you've got lung cancer is because you smoked."

Karen Parles:
Mm-hmm.

Ellie:
Which, you know, that's a whole other story, but like Jo Anne said, there was cancer in my family, so the doctors always said there's a chance that you would have gotten it anyhow. Not necessarily in your lung, but you would have gotten it anyhow. And so I can't say that anybody ever really made me feel guilty that I had gotten it from smoking, through my own cause probably. The one good thing that did come of it is that everyone in my immediate family--and there was a number of smokers--immediately put down their cigarettes, which to me was just fantastic.

Karen Parles:
It had a positive impact on others.

Ellie:
Definitely, it had a positive impact. And I don't feel really guilty that I have lung cancer. In fact, I'm hoping something good will come of it. I just wish that we had more survivors so we could have a more active group.

Karen Parles:
Right. I think what helped my understanding as a nonsmoker, the whole smoking issue, was to learn when I read about lung cancer that 90 percent of smokers start in their teenage years. You know, and teenagers do risky behaviors. They drink, they drive, they smoke. But then, because of the addictive--because, you know, nicotine is an addictive substance, people are unable to quit, and you have tobacco companies marketing products to children. So people are addicted to nicotine. And then the other thing, as you were saying before, is that if you have cancer in your family, only one out of 10 people who smoke gets lung cancer. So there's a whole confluence of factors, and as we were all just discussing here, when someone gets another disease that's either impacted by smoking or caused by something else, the first question is not, "Did you do this?" So I always try to discuss the issue. I think once you get lung cancer, I think whether you smoked or not, you're a patient. You deserve empathy. You deserve support, and I think that we should be willing to speak out on these issues, because as lung cancer survivors we deserve the same resources that any other cancer survivor group does.

Jo Anne:
I have a question that's--and I'm sure every one of us has asked and wondered. We do not see on TV, we don't see printed media. We just don't see it. I don't see people raising money and doing walks for lung cancer. [laughs] I don't see these things happening. It's like it's for everything except the lung cancer patients.

Reva:
Because we're being blamed for doing it to ourselves.

Ellie:
Right. This is Ellie, and I need to make a comment on that. I think the reason we don't see this--this is my own personal view--is because there's not that many lung cancer survivors. There's you and me and Reva and Jo Anne, and there really are not that many survivors. And the ones that are the well-known names of your actors, if you will read some of their obituaries--and I know this probably sounds really--but it's because they died of lung cancer, and so that's what they put down, but you don't find anybody that has big names that are survivors.

Karen Parles:
I agree.

Ellie:
And I think that's the reason why.

Karen Parles:
And it's difficult because the mortality rate, you know, there's not enough people who are surviving and well enough to stand up, and then some people feel guilt about their smoking and so they're reticent to speak out.

Ellie:
Yeah.

Karen Parles:
So I think as there's those of us who are surviving longer and doing well, and the more that we can say and I think put a face on lung cancer. Use our names. Say, "I have lung cancer." Even if you're not going to be an advocate or you don't want to get, you know--make this your life. I think the fact you just say, "I have lung cancer" helps to move things along instead of thinking of people with lung cancer as just this abstract, "Oh, they're smokers," which is so easy to say instead of thinking of them as your mother or your sister or your brother, you know, and as people. So I think the more we just can say, "I have lung cancer" to people, I think that is very helpful.

Jo Anne:
I was diagnosed at [stage] IIIB. I feel incredibly blessed, fortunate, any word you can tack on.

Karen Parles:
Absolutely. Advanced lung cancer and you're still here. It's fabulous.

Jo Anne:
To me--but I guess that's my point. What I'm trying to say is that maybe there could be more survivors--

Karen Parles:
Mm-hmm.

Jo Anne:
--if there was--I often wonder, is the research being done on lung cancer that is being done on all the other cancers? Where is the money going to? Is it the feeling that lung cancer is not worth all the research money? [laughs]

Karen Parles:
I think sometimes what happens is, right, there's the stigma affects it and the public support, and then also I think that a lot of the money would normally go into treatment they put into prevention and, you know, preventing and smoking cessation, which doesn't help those of us and the people who are going to get lung cancer. I mean, people are always going to get lung cancer. As a matter of fact, they do studies now showing pollution is increasing the amount of lung cancers. So I think that, yeah, we need to keep demanding more money for treatment for helping people who have the disease.

After Treatment: Facing Your Fears and Long-Term Side Effects

Karen Parles:
I was wondering, all of us have been through treatment and are surviving. Ellie, do you ever have any fear that your cancer will come back?

Ellie:
Oh, definitely. If I get some kind of a strange symptom, I just know in my heart that that's what it is. In fact, right now I'm battling some kind of a weird dizziness. So I'm going to be going to a neurologist. Obviously it's probably just a middle ear thing, but it keeps reoccurring. So, deep down you think, oh, this is not a normal thing. Has it come back somewhere else?

Karen Parles:
Jo Anne, do you have any fear of recurrence?

Jo Anne:
Oh, yes! [laughs] And I don't see how once you've had it and you understand and know and are versed on it, that you--well, the doctors say, "Anything unusual, call me." Yeah. I think that's a normal, very normal thing for people to feel. That it's going to come back. It may not come back for five years. It may not come back at all. But, yeah. There is the fear there, and I do have my tests every three months, you know, my CAT scans and I go all through that, and I feel fortunate that I'm here to go all through that. [laughs] So yeah, I think that's a real fear.

Karen Parles:
Reva, are you conscientious about your follow-up care?

Reva:
Oh, absolutely.

Karen Parles:
Because you want to be sure it's caught early if something recurs?

Reva:
Absolutely. I go for the CAT scans every four months. They want to stretch it, and the pulmonologist knows I'm neurotic, so we do it at four months. I am seen every three months by either the surgeon or the pulmonologist, and as Ellie said, any time anything unusual occurs, "It's back!" You know, in your head that's what you think.

Karen Parles:
Right. Now is there anything that you do to help you deal with the anxiety you have when you're having that bone ache or that headache? Anything that you do to cope? Do you call your doctor, or is there another thing you do?

Reva:
No, I don't. I say, "You're being silly. And if it goes away by tomorrow, then it's not." [laughs] And so far, that's the way it's been working, you know. When I do go to the doctor, of course I'll mention something. If anything comes up where it doesn't go away in 24 hours, I definitely will contact the doctor. But I don't rush to--I take a deep breath and try to count to 10--

Karen Parles:
Right.

Reva:
--and be rational.

Karen Parles:
Right. Jo Anne, are there things that you've adapted to [so] that when you're having pains that you don't immediately get anxious, or do you automatically call your doctor?

Jo Anne:
No, I don't automatically call my doctor, and I do have pains, and I often think that some of it is side effects--

Karen Parles:
Right.

Jo Anne:
--from chemo, from radiation. There are just a couple instances I have, from the radiation, I do have some very hard tissue, and that's been checked over and over again.

Karen Parles:
Does that affect your breathing or how--?

Jo Anne:
Yeah. It's in the breast area. It's to the right of the breast bone, and it's a mass, and it's a hard mass--but it's been checked over and over again. It's never been biopsied, but it's--

Karen Parles:
Mm-hmm.

Jo Anne:
--through all the CAT scans, it's been there for so long it just doesn't do anything and it does affect my breathing, yes. I have a very hard time breathing on some days. The humidity here in Houston is blah! [laughs] Pretty bad!

Karen Parles:
I'd be interested in hearing, you know, as we survive, that we are coping with these side effects from treatments and from our disease, what you all deal with on a daily basis.

Jo Anne:
Oh, the ringing in the ears! [laughs] The ringing in the ears, a lot of things that I have--I know that the neuropathies in my fingers and my feet are from the chemo.

Karen Parles:
OK.

Jo Anne:
I have this from the radiation. The breathing problems I'm told is from the radiation. I am achy, you know, my bones do ache. [laughs]

Karen Parles:
Yeah. Right.

Jo Anne:
And I'm told that to be also from the treatment, but I don't have, like, pains, you know, shooting pains or anything that run me to the doctor. And besides, I probably wouldn't know. You know, at 62 years old or 61 years old, you got pains anyway. [laughs]

Karen Parles:
[laughs] Right, right.

Jo Anne:
You know, and that's--how do you differentiate all that, you know? I mean, I couldn't run to my doctor every time I got stiff. [laughs]

Karen Parles:
Right.

Jo Anne:
No. I don't feel comfortable doing that.

Karen Parles:
But on a day-to-day basis you've been--

Jo Anne:
Coping with it?

Karen Parles:
Right. And Reva and Ellie, I was wondering, in side effects from your surgery, do you notice you have decreased breathing capacity or aches, pains, nerve damage?

Reva:
I've got aches and pains in my chest.

Karen Parles:
Do you have them all the time or certain times?

Reva:
Mostly, you know, at the incision.

Karen Parles:
Hmm.

Reva:
And that's not a major problem. I've been walking around the track the last couple of weeks, and I'm doing three miles in an hour.

Karen Parles:
Oh, good for you. That's great.

Reva:
I'm not out of breath, except when I walk up big hills.

Karen Parles:
Mm-hmm.

Reva:
I play tennis, doubles. I walked across Manhattan yesterday, from Seventh Avenue to York Avenue--

Karen Parles:
Great.

Reva:
--in that heat! Other than, you know, an odd twinge occasionally.

Karen Parles:
Mm-hmm.

Reva:
My biggest complaint, which sounds terribly vain, considering that I have lung cancer, is that since the surgery and since I stopped smoking I've put on 16 pounds, and I can't stand it.

Karen Parles:
Right.

Reva:
But, other than that I am just very, very lucky.

Karen Parles:
Well, I was wondering, Ellie or Jo Anne, did your doctors prepare you for any of these side effects that you might be experiencing, or is this just something that you report back to them, or were you prepared for some of the chemotherapy side effects?

Jo Anne:
I was not--my doctor didn't really prepare me for them. However, when I saw them, they said, "Well, yes. That's what this is. You'll see more of it. You'll continue to see more side effects." This sort of thing. The one medication that was in the chemo caused the ears.

Karen Parles:
Right.

Jo Anne:
You know, for me to lose my hearing there. And if it will make you feel better, dear, I gained some weight, too!

[laughter]

Providing Yourself TLC During Treatment

Jo Anne:
Well, you know, my thyroid went bananas also. So I'm also on thyroid medication. But that was very surprising to me--was that I gained. And another thing that was very surprising to me was just the other night my husband and I, we were watching a television program, and this individual mentioned about the swelling of the face.

Karen Parles:
Hmm.

Jo Anne:
And my husband said to me, "Well, you had that too." And I said, "I did?" And he said, "Yeah. You got a very swollen face." But as a woman, when I looked in the mirror, what I saw was a bald head.

Karen Parles:
Right.

Jo Anne:
Or scarf. I didn't see the face. So as a woman I wasn't looking at that.

Reva:
See, this is Reva. I didn't have any chemo or radiation. So it was strictly the surgical intervention. And what had happened was I had the first operation, where they took out sections of the upper and lower lobes, and there was a disagreement apparently as to what the lower lobe cancer was. The surgeon felt that by doing the wedge resection he had gotten everything out, and they then decided that when the pathology report came back that it was adenocarcinoma, and even though everything was clear, that that's not one you mess around with. So the pulmonologist said, "Wait and we'll watch it." And the surgeon said, "Let's go in and get it out." So I opted to go with the surgeon. So I had two operations in a month.

Karen Parles:
Well, it seems to have done the trick.

Reva:
It sure does!

[laughter]

Karen Parles:
I was wondering if Jo Anne and Ellie, who had chemotherapy, how you dealt with the issue? Did you both lose your hair, and what did you do to deal with that issue?

Ellie:
Well, this is Ellie, and no, I did not lose my hair. In fact, sometimes I felt guilty as I was sitting having my chemotherapy looking at all these other people. I had chemotherapy and radiation the same day for eight weeks straight.

Karen Parles:
With chemo and radiation, it occurred to me that you must have really been fatigued, because I know both of those have--

Ellie:
Oh, yeah, I was very fatigued, but that was just something that I thought went along with it. But after I got done with my chemotherapy and my radiation, I kept getting sicker and sicker, which to me did not make very much sense, and it got to the point where I could not get out of bed. I physically could not get out of bed. Unfortunately, after I got done with that, it really messed up my immune system, and I went into acute rheumatoid arthritis.

Reva:
Wow.

Karen Parles:
A reactive arthritis?

Ellie:
Well, that was a hereditary thing in my family, and they said that just the radiation and chemotherapy just totally screwed up my immune system, and so it kind of took precedence over my cancer because I absolutely refused to go into a wheelchair.

Karen Parles:
So you had a lot of complications then, in addition to the treatment, right?

Ellie:
Yeah, I did, and actually from February till August I probably spent four months off and on in the hospital just dealing with both of the situations--

Reva:
Wow!

Karen Parles:
So you've come a long way.

Ellie:
Yeah. But I did not lose my hair. And like I said, I felt very guilty about that, and I did not gain any weight. I just kind of stayed where I was.

Karen Parles:
Did your fatigue continue after your radiation, or--

Ellie:
I was determined to go back to work. I was just determined to go back to work. And I went back to work exactly nine weeks after my surgery. As a matter of fact, when most people would be going for their coffee break in the morning, I would go over, and I was still having radiation, and I would walk up the hill and have radiation for my coffee break. [laughs]

Karen Parles:
How did your coworkers deal with it? Were they supportive?

Ellie:
My coworkers were wonderful.

Karen Parles:
Your employer?

Ellie:
And they were wonderful. But, like I said, I worked in a hospital, and so that really helped. But no, they were very understanding.

Karen Parles:
Right.

Ellie:
If I needed to be off, "Take the day, Ellie, and just go." So, yeah. It was wonderful.

Karen Parles:
That's great. Now, Jo Anne, you did lose your hair from chemotherapy?

Jo Anne:
Yes.

Karen Parles:
And how did you cope with that?

Jo Anne:
What I did was I bought a lot of silly-looking little hats and scarves, and I used that. Yes, it was difficult. I didn't like it. I felt uncomfortable about it, but I also, at the same time, felt I had to not take it so hard. That's just why I went around buying all these cute little hats [laughs] and wore those. I mean, I would even get compliments. I would walk down the hospital, you know, and people would say, "Oh, I love your hat today." Or, "I remember you. You're the lady with all those neat hats." You know, and that's how I did it. That was my "up." That's how I kept up about it. I did not want my picture taken, though.

Reva:
Hmm.

Karen Parles:
I actually lost my hair myself during chemotherapy, and I remember I just kept telling myself, "This is temporary. This is temporary."

Jo Anne:
Yeah.

Karen Parles:
But I did get empathy for, you know, men who go bald, because I was freezing all the time.

Jo Anne:
[laughs]

Karen Parles:
I would be cold and putting hats on. I never quite realized how your hair keeps your head warm.

Jo Anne:
I did go through the wig bit, and I wore that about two weeks [laughs], because it is so hot in this area that I could not comfortably wear it. So I decided to go with some pretty silk scarves and these hats, you know, and that's what I did.

Karen Parles:
Well, whatever helps. And actually the American Cancer Society has a wonderful catalog; I think it's called the TLC Catalog. If you call them, that has all sorts of things. Head coverings and wigs and various things that are available that I found wonderful.

Jo Anne:
Yeah. And your hair does come back beautifully. It came back. Mine came back so curly!

Karen Parles:
Right, right.

Jo Anne:
I couldn't believe it. [laughs]

Karen Parles:
So did mine. It only lasted about a year. I thought I had this new hair, but after about a year--

Jo Anne:
[laughing] Right. I'm just as straight as can be now.

Karen Parles:
Straightened back, and nice and flat as always.

Jo Anne:
Yup. [laugh] It's straight.

Educating Others about the Risk Factors of Lung Cancer

Karen Parles:
Ellie, because of your experience, do you find that you monitor your family's health more closely and try to make them aware of the risk factors for lung cancer?

Ellie:
Oh, definitely. Definitely. But not just lung cancer. I think every kind of cancer.

Karen Parles:
General health.

Ellie:
General health. Because my husband, I noticed, had a sore on the side of his nose, and I kept asking him about that, and he kept telling me he scratched himself. Well, after six weeks I said, "This is not a normal thing." And so he went to a dermatologist, and he had basal cell carcinoma.

Karen Parles:
Wow.

Reva:
Hmm.

Ellie:
So, yeah. And I do I have my children, and none of them live here, around where I'm at.

Karen Parles:
So you think you've become more vigilant about--

Ellie:
Right, and also my grandchildren. It's like, I don't know if that's normal. Maybe you should have that checked because of the fact that there is cancer in my family from both sides.

Karen Parles:
Right. Reva, you also have grandchildren, and I'm wondering, what would you do if they decided to take up smoking and express that they think smoking is cool and decided to start smoking?

Reva:
Well-- [laughs]

Karen Parles:
Any idea what you might say to them?

Reva:
I would show them my scar.

Karen Parles:
Right. [laughs]

Reva:
And I would describe the pain. Interestingly, of the three, the youngest one, who was five, just about five when I had my surgery, she was the only one who really asked to see the scar--

Karen Parles:
Mm-hmm.

Reva:
--and, "Tell me what they did, Grandma." And so I drew a diagram for her of the lungs and showed her where the spot had been and what they did for the first operation and what they did for the second operation. The older one wasn't interested. I think she was frightened.

Karen Parles:
Mm-hmm.

Reva:
When I was first diagnosed--she and I have been exceedingly close-- and I could see she was pulling back, and I took her aside and I told her that she was to look at me, this was Grandma, and Grandma wasn't going anywhere because Grandma had too many things to do.

Karen Parles:
Right.

Reva:
And after that she was OK.

Karen Parles:
That's great.

Reva:
But the little one was fascinated. She kept asking to look at the scar.

Karen Parles:
They all react in different ways.

Reva:
I would kill them if they picked up a cigarette.

Jo Anne:
Yeah.

Ellie:
I have a question. Did everyone have just a portion of their lung removed, or did they have the whole lung removed?

Jo Anne:
I had no surgery.

Ellie:
You had no surgery?

Jo Anne:
It was strictly chemo, and I believe it was like you. I had my chemo and my radiation on the same day, and I had radiation twice a day for seven and a half weeks.

Ellie:
Uh-huh.

Jo Anne:
And I had the chemo for seven months. And I had no surgery of any kind.

Karen Parles:
This is Karen, and I actually had my whole lung removed.

Ellie:
OK, this is--

Karen Parles:
Reva, you had a few--

Reva:
I had the lower lobe removed. Left lower lobe.

Ellie:
OK, this is Ellie and I had the whole lung removed. They did not-- well, they kind of gave me an option, and so I just said, "You know, just take the whole lung." [laughs] "Just get it out."

Jo Anne:
Can I ask you a question? Do you have a problem with breathing? Breathless? Do you have breathlessness?

Ellie:
I'm kind of like Reva. The only time I have a problem is if I walk up a hill.

Jo Anne:
I see. OK. So other than that, it took over in place, took over for the other lung.

Ellie:
Right.

Jo Anne:
Great!

Ellie:
I mean I can walk for miles and miles but--

Jo Anne:
Wonderful!

Ellie:
--just let me walk up a hill, and I have to stop and catch my breath.

Karen Parles:
I wanted to ask Ellie, how do you use your role as an advocate to educate others about the risk factors of lung cancer?

Ellie:
Well, like I said, I'm very active in the American Cancer Society. I have got some other people that are working with me, and we're getting information out to the schools. In fact, this year we--this is the first time that--we have seven grade schools or middle schools here in our area, and all the information for the Great American Smoke-Out went to all of the schools. I pass out little things to my friends and people that I know, little stickers that you can put when you go to a restaurant that say, "I'd come here more often if you were smoke-free." I've worked with the Great American Smoke-Out. We've had one company who owns 22 restaurants in this area, in three states, and because of this, all of his restaurants have went totally smoke-free.

Karen Parles:
That's great, and I think also what's great with the American Smoke-Out--it's in November, and ALCASE--and it's getting various states across the country getting November declared as Lung Cancer Awareness Month.

Ellie:
Oh, that would be fantastic.

Karen Parles:
And the fact that it dovetails with the Great American Smoke-Out, is great. And ALCASE will, if anyone's interested in doing things, you know, at their local hospitals or getting literature out on lung cancer awareness or risk factors for lung cancer, you can call ALCASE and they will send you a free kit with brochures and pins and things to give out. What we did at our local hospital is we dovetailed with the Great American Smoke-Out day and had a booth right next to the American Cancer Society, and it worked out really well for really letting people know about the risk factors for lung cancer.

Ellie:
That sounds great.

Reva:
I would like to get back to Jo Anne's point about the fact that we don't have a lung cancer spokesperson, and suddenly--and I'm older than all of you and I remember Arthur Godfrey--

Karen Parles:
Oh, yes.

Jo Anne:
Oh, yeah.

Reva:
--who had his lung, one lung removed, and survived for years and was open about it. Why aren't people open about it now?

Karen Parles:
Well, you know, it's interesting. I talked to the people at ALCASE, and they have approached so many celebrities and celebrities' families, when someone has a sister or a relative, and they just, you know, at first sometimes the people say yes, but then they consult their agent and their agent says, "Oh, this is not a good thing for you to do." And then they decide not to speak out, which just really affects us. And I'm hoping that--Carol Burnett, you know, went on, I think it was with Barbara Walters.

Ellie:
Yes.

Karen Parles:
Her daughter was 38, died of lung cancer. And she really spoke out, so I'm hoping that maybe she'll step up for us.

Reva:
Yeah. She would be great for that.

Karen Parles:
Absolutely. I agree with that, and I think whatever--we can write people and just keep asking them, and if you can see them in person and ask them in person, to just say that we need a spokesperson. We really do. It makes a difference in all the diseases when there's a celebrity or a prominent person to stand up and represent us.

Reva:
But I think again, a lot of the celebrities don't talk about it because that's something you brought on yourself.

Ellie:
Right.

Karen Parles:
True.

Jo Anne:
I agree with you 100 percent.

Lung Cancer Happens to Families, Not Just to Individuals

Karen Parles:
I think this is something we all can work on in our families, and I just wanted to get back to talking about our families and what specific things family members did to help you deal with your lung cancer experience. Can anybody think of something specific with your husbands--

Jo Anne:
When I was diagnosed, my whole family met and they all took turns getting me back and forth to the doctors for the chemo treatments, for the radiation, because you are very--I was extremely ill from the chemo and extremely ill from the radiation, also. It was very aggressive chemo, and my daughter came in from Denver. My other daughter came over from England. My sister came in from California. My husband still had to make a paycheck and, you know, the people that he worked with were very, very good about his time off to get me here, to get me there. My family gave me a lot of support, but I also was quick to realize they were all dealing with this. This is why I mentioned that in the beginning. They were all dealing with their own issues with it.

Reva:
Right.

Jo Anne:
And I quickly saw that I was not going to get the emotional support I needed from all of them, because they were teary, they were upset and, you know, you can't give what you don't have.

Karen Parles:
Right. I do think that lung cancer happens to families, not just to individuals.

Jo Anne:
Oh, oh, oh. My goodness, yes.

Karen Parles:
The stress they have is often more than what we have, and it makes them--

Jo Anne:
I understand that in some cases, and it's not just lung cancer, in some cases marriages just don't make it through cancer in some cases.

Karen Parles:
Right.

Jo Anne:
Yeah, ouch, and these are the things that you think about and you say, "Hey, we've all got to kind of do this together." [laughs] And not step on too many toes.

Karen Parles:
Did any of you find or have any friends or family members that just seemed to disappear after your diagnosis, and if so, how did that make you feel?

Ellie:
This is Ellie, and I can't say that any of my friends disappeared or my family. I come from a very large family. None of my children were at home, and none of my brothers or sisters live in the same state that I do. If they couldn't be here physically, and one of them did physically, I had phone calls every night from one of them, and also my children, because none of my children lived in this state. But we had a wonderful support group of friends that we had met during the Gulf War, and every day there was one at my door. So, you know, friends, really, I can't say that we ever lost any friends with that. In fact, they were there pulling for me.

Karen Parles:
Great.

Jo Anne:
I experienced the same thing. My family were all there. They all came, they all left, they all called. You know, they all did their own thing, but I think what I was trying to say was that I became very aware that they were going through a certain amount of pain also.

Ellie:
Mm-hmm.

Karen Parles:
Right.

Jo Anne:
I understood that.

Karen Parles:
Did the support change compared to when you were first diagnosed and now that you're doing better in terms of how they reacted to you?

Jo Anne:
Well, I think they were all very supportive. I mean, they were all very supportive and always, you know, very up. Not at all negative. My husband had absolutely no doubt that I would go into remission. He said, "No. We aren't going to have this. You are going to get well, and that's all there is to it." And he didn't want me thinking about these things. [laughs] But you do.

Karen Parles:
But sometimes you needed to.

Jo Anne:
Oh, yes. So I mean, my family was supportive, but I was very aware that if they get out of sorts a little bit [laughs]--

Karen Parles:
Right.

Jo Anne:
--I understood that, because they were fighting the same stuff I was fighting, basically.

Karen Parles:
Of course. Right.

Jo Anne:
In a different way.

Karen Parles:
Reva, I was wondering how your husband reacted to your lung cancer?

Reva:
He was wonderful. He was wonderful in being supportive and helpful and caring and--but I think in some ways--and I think I tried to say that before--with the diagnosis, you're dealing with your cancer. They're dealing with your cancer.

Karen Parles:
Right.

Reva:
And there's a difference. When you've got an ache or a distraction, it's different than their observation of it. I did find that for a while I kind of got introspective, and one of my children commented that I was making this cancer the focus of my life, and I blew my stack!

Karen Parles:
Right.

Reva:
Five months after my surgery, I went to Italy and I walked through Italy. I mean, I was up in the lake district--how could she even think this, you know?

Jo Anne:
Oh! [laughs] This is Jo Anne, and you're right. You're absolutely right. I had the same thing said to me. [laughs]

Reva:
You focus on it, because you look at the kids and you think, am I going to be here next year?

Ellie:
And it's your life.

Reva:
Right. But I think they've gotten over that, and I have, too.

Ellie:
Yeah.

Karen Parles:
Well, I think we all need support--the patients and the family members. And it's interesting to think about what you can do for your family members in terms of what support resources are out there. You know, there's few support groups for us, and then thinking about it, there's less for them. Who is it who said that the family members really can support other family members?

Reva:
What we found is that in going to this group that the doctor's nurse practitioner has started.

Karen Parles:
Mm-hmm.

Reva:
We go as a couple. And that's helpful.

Karen Parles:
Right.

Reva:
Because there are other spouses or significant others there.

Karen Parles:
That's unusual. That's interesting.

Reva:
That he can relate to.

Karen Parles:
Mm-hmm. And they can share what they're going through, you know, between each other.

Reva:
Right.

Karen Parles:
Very nice. Did any of you use humor at all to bring comfort to yourself and your family? Any humorous anecdotes or things that got you through? Funny--?

Ellie:
Yes, we did. And my husband and I still laugh at this, because being on the chemotherapy and the radiation, my taste in food just totally went wild, and I wanted things that I've never eaten before. I don't eat sauerkraut, never loved sauerkraut, and to me, that's what I had to have every night for supper was sauerkraut.

Reva:
[laughs]

Ellie:
And to this day, we still laugh because he would come in, and he was very helpful and said, "I'm fixing supper. Would you like sauerkraut?"

[laughter]

Ellie:
So it just got to be kind of a standing joke, and to this day when we go out to eat and there's sauerkraut on the menu, and we're with somebody, he goes to me--and we just still laugh--and he says, "Do you want sauerkraut?" You know. So, yeah. You do.

Karen Parles:
I was going to say, I think we all develop what some people call "cancer humor" to get us through the rough spots.

Ellie:
Right.

Reva:
Mm-hmm.

Jo Anne:
That's right.

Karen Parles:
Well, I hope our discussion has helped all of you with some of the issues that may be part of your life. I want to thank our guests, Jo Anne, Reva and Ellie, for their willingness to share their stories, thoughts, feelings and a part of their lives with us today. I hope that some of their experiences will help you think about and talk about your own concerns in healing ways. I encourage you to listen to other discussions we have available on the Web site at www.cancer.org and on the phone by calling 1-877-333-HOPE. For the American Cancer Society's Cancer Survivors Network, I'm Karen Parles, wishing each of you a great day, today and every day.

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