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Talk Shows and Stories : Featured Talk Shows : Inflammatory Breast Cancer
Inflammatory Breast Cancer
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Becky
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Lynn
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Dr. Harpham:
Hello, and welcome to the American Cancer Society's Cancer Survivors
Network. I'm Dr. Wendy Harpham, your host. Today I'll be talking with
three women from across the country, all three are survivors of
inflammatory breast cancer, a very aggressive form of breast cancer, and
as a doctor of internal medicine, and also a ten-year lymphoma survivor
myself, I'm pleased to be your host for today's conversation. As we talk
about facing a poor prognosis; finding and nourishing hope when you have
inflammatory breast cancer; the difficulty in getting a correct diagnosis;
dealing with the need to act quickly after diagnosis; the need for more
education on this type of cancer; the importance of family communication
and support; staying positive but dealing with the reality of good days
and bad days. Before we open up the discussion, I'd like to briefly
introduce our guests.
 First, from Pennsylvania, I'd like to say hello to
Carolyn. Carolyn is 45 and a half (she likes to say it that way), married,
and the mother of two children, a boy and a girl. Carolyn is a 4-year
cancer survivor. When she was 41, she experienced swollen breasts, went to
the doctor, and was treated for an infection with an antibiotic. A week
later, after no change, she had a mammogram, and fluid was drawn from her
breasts. The radiologist sent her to an oncologist, then a surgeon, for
treatment. Her treatments included a mastectomy, chemotherapy, and a bone
marrow transplant, and she's now on tamoxifen. Hi, Carolyn, welcome to the
show.
Carolyn:
Hi. That sounded, um, scary!
Dr. Harpham:
And now you want to share how you got through it.
Carolyn:
Oh, absolutely.
Dr. Harpham:
Next I'd like to welcome Lynn, from Washington State. In 1999, at the age of
48, she was diagnosed with inflammatory breast cancer, after seeing four
doctors for breast complaints. Since her mammogram and sonogram were normal,
the doctor treated her for mastitis and dermatitis. Finally she insisted on
seeing a breast surgeon, who made the diagnosis at the first exam. She
underwent chemotherapy, then a modified radical mastectomy, more chemotherapy,
and radiation therapy. Lynn is married, with two grown children. Hi, Lynn,
welcome to the show.
Lynn:
Hi, I'm very glad to be here today. Thank you.
Dr. Harpham:
Becky joins us from California, is married, and the mother of three boys, ages 8, 10 and 12. Her diagnosis was also in 1999, and started with a rash on her breast, which was treated for a month with antibiotics. That was followed by ultrasound and a biopsy, which confirmed the inflammatory breast cancer. She was treated with chemotherapy, then a modified radical mastectomy, then more chemotherapy and then radiation therapy, and she's currently taking Tamoxifen. Hi, Becky. I'm glad you could join us today.
Becky:
Hi. Thanks for having me.
Dr. Harpham:
Now, all newly diagnosed cancer patients deal with the fact that they've just learned that they have a life-threatening disease. For many, this fear can be offset with the news that the cancer is very early, or the hope offered by a good prognosis. Let's talk about what it's like to be diagnosed with inflammatory breast cancer. How can you find and nourish hope when you have this particular type of cancer? Carolyn, what were you told about your prognosis? After you learned that you had inflammatory breast cancer?
Carolyn:
Well, I was told that the survival rate was not very good; however, the surgeon that I consulted with was very, very optimistic about the treatment, and felt that we had a shot, that there was no reason to totally give up hope. But, you know, he did tell me the reality, that this was not a good prognosis, and there was hope, but you know, these are the facts.
Dr. Harpham:
How exactly did he tell you that.
Carolyn:
(Sighing) Oh, boy. Okay. I think that he said something like, "currently 65% of the women don't make it past three or four years, but that means that 35% of the women do. And you know, if we get you right in and treat you aggressively, we feel that there's every reason to believe that you could be one of the 35%, and I don't want to see you lose hope, because when you lose hope, then you lose your life." He meant that I would have no quality of life had I lost hope.
Dr. Harpham:
You were very young, you were 41, you had two children at home. How did it feel to hear that you had a type of cancer associated with a poor prognosis?
Carolyn:
You know I had worked with the American Cancer Society for many years and had heard many people talk about this same thing, so when it happened to me, all I could think about was, "my babies, my babies, I can't leave my babies. I can't. I have to do everything in my power. I have to". You know, you feel like, there's no choice, you've got two little ones, you fight as hard as you can.
Dr. Harpham:
What do you wish he had said differently, if anything?
Carolyn:
I thought he handled it very well. This is one of the foremost breast cancer surgeons in the country, that I chose, and I thought he handled it very well. I know that other physicians, from stories I've heard, have not handled it that well. But he did, so I have no complaint.
Dr. Harpham:
And you say he did because it sounds like he focused on the fact that there are people who survive, there are people who do well and you can be one of those people.
Carolyn:
He was very clear that many people don't do well, but there is a percentage of people that do, and we're gonna focus on making me one of those people.
Dr. Harpham:
Do you remember how hopeful you felt?
Carolyn:
Well, for about the first week, not hopeful at all. I cried, I carried on about losing my babies, and stuff, and then, it was just like one morning I woke up and said, "Okay, I've grieved. And now I'm gonna fight." And from that time on, I was fairly, if not optimistic, sometimes just maybe matter of fact, but I wasn't hopeless. After that first week that I cried and grieved, and stormed, then I was either very matter of fact or at times, very optimistic.
Dr. Harpham:
That's very interesting, because hope is dynamic. It does shift over time, as you adjust, as you experience your survivorship. Lynn, once you received the correct diagnosis, what were you told about your prognosis?
Lynn:
We didn't really discuss the survival rate when I was diagnosed. In fact, all I could focus on at the time I received my diagnosis was, that "well at least I know what IS wrong," I'd been trying to find out for a couple of months, and there is treatment for it, so my whole, all my energy was just directed toward getting into treatment and taking care of it. And I didn't know for a little while that the prognosis was not very good.
Dr. Harpham:
How did you find out?
Lynn:
I started searching the Internet for more information, and in fact, I discovered you have to be very careful when you do that because there is some outdated information. The first facts that I pulled up about inflammatory breast cancer said that there was a 20% survival rate, and I was a little bit shocked and I kind of had a bad couple of days after that, until I talked to my doctor and found out in fact that the survival rate is more along the lines of 40% to 50%. And we did not really discuss those kind of statistics very much. I just had a real positive feeling about getting something done. I wanted them to do more and faster than they were already doing, and that's where my energies were focused.
Dr. Harpham:
So it's almost as if, because it took a while to get a diagnosis you felt optimistic and hopeful and empowered by having a diagnosis and knowing what the problem was so you could go forward?
Lynn:
Yes, I just wanted to get on with the treatment.
Dr. Harpham:
When did you discuss prognosis with your doctor?
Lynn:
I believe actually my husband called and talked to the doctor after I found the 20% information on the Internet, and we really didn't discuss statistics much after that either, because I was having a good response to treatment, and that's what we focused on.
Dr. Harpham:
Becky, what about you? Once you received your correct diagnosis, what were you told about your prognosis?
Becky:
My doctor told me there was about a 45% survival rate, and most had a recurrence within five years. So that means a little, I was afraid of things.
Dr. Harpham:
And then what did you do?
Becky:
I looked at my three boys, who were all under 13, and we told them up front what was going on, and they didn't want anything to happen to their mom, so they told, they actually told me that I had to fight this, so for them we have.
Dr. Harpham:
How hopeful did you feel?
Becky:
At first, not much. I did a lot of crying, my husband did some, and my boys did, and then we just figured we're gonna fight it and we're not gonna let the percentages and the statistics beat us down.
Dr. Harpham:
This is a question for all three of you. What were some of the difficulties in facing a type of cancer associated with a poor prognosis? Carolyn?
Carolyn:
Well, I have to tell you, first of all, it's hard because everybody around
you starts grieving already, you know? Like it's like they heard the first statistics and they are bemoaning it, and it's not that you want them not to be sad and stuff, but like okay, I'm not buried yet, folks! I had a man actually come up and say, "Let me shake your hand. I hear you have one foot in the grave."
Dr. Harpham:
Oh my gosh.
Carolyn:
I think it was a joke, but you know, it was poor taste.
Dr. Harpham:
So, how did everybody's grieving and almost sense of giving up, affect you?
Carolyn:
Well, it annoyed me, because I had agreed that it was okay for them to grieve, I was all right with that, but they had to understand that when we were all done grieving, we were gonna fight! So I was saying, well you know, it is bad and I was really sad too, and I still am, but I'm really gonna fight, and you know, there are people that survive.
Dr. Harpham:
So you had to educate them, kind of get them on your side?
Carolyn:
Yeah.
Lynn:
I would just like to add that oh, I lost my train of thought. It flashed back to chemo brain. (laughs)
Dr. Harpham:
It's dealing with having a bad prognosis, difficulties of dealing with a bad prognosis.
Lynn:
What I did was kind of examine my life, because I knew there was a possibility that I might actually die from this, and I, my kids are older, I had one in college and one in high school, when I was diagnosed and I kind of examined my life and I thought, "you know, I've really had a good life, and there is a lot that I can be thankful for, even if I can't continue, " but I was just not ready to give up yet, I wanted to see my kids out and as productive adults in our society so I just focused on getting better. I always felt I was going to get through this okay.
Dr. Harpham:
Did you experience any of the same interactions with other people as Carolyn?
Lynn:
They didn't actually say that they were grieving, but I could see sadness in people's faces. I would come to work as much as I could, even during treatment, and I realized I probably didn't look like the healthiest specimen in the world when I came in, and everybody was perfectly wonderful, but you could see that there was a lot of concern going on.
Dr. Harpham:
Did you see hopelessness, Lynn?
Lynn:
No. I never did see that. If it was there, I had a mindset that wasn't picking up on that.
Dr. Harpham:
Were there any techniques you used to help you stay so confident and focused?
Lynn:
No, it was just kind of my lifestyle that when you're met with a challenge like this that you meet it head on, and you do what you can, and there are some things you can't control and you have to accept that particular fact. So you do what you can, and accept what you can't change, and go on with your life the best that you can with the time that you have.
Carolyn:
I'd like to say something to that. I would have days like when they were doing something to me that was unpleasant, when my husband would give me the shots after chemo, they were very painful, and I had this little song that I would sing, when something was real unpleasant, to get me through it, and I think it probably drove the nurses and everybody crazy, but it worked for me, and it was, I was just over and over, saying, "I'm gonna live to see my kids grow up and you can't stop me!" And I would just sing it over and over until whatever was unpleasant was finished. And you know what? It really helped! We do what we have to do.
Dr. Harpham:
Becky, how about you? Did you deal with any difficulties because the prognosis was bad?
Becky:
Just in my kids and especially my youngest, who is 8. Cause he kept telling me when I went through the chemo treatments that I was gonna beat this and I was his Supermom, so I...
Dr. Harpham:
How did you feel when your son called you Supermom?
Becky:
I felt like I had to live up to it, for him. He was my one who was always worried and took care of me after chemo treatments, because I was very sick after them, he'd always come in ask me if I needed anything, and I knew I had to be there because I wanted to watch them grow up and get married and become men, because they all want to take care of me.
Dr. Harpham:
Becky, how about the reaction of the people around you to your prognosis?
Becky:
A lot of them were supportive. They wanted me to fight this, nobody talked about how aggressive this cancer could be. They just knew I could fight it, I guess it's my personality to fight things, and not let them get me down.
Dr. Harpham:
Do you think it helped not to address directly the fact that it had a poor prognosis?
Becky:
Yeah.
Dr. Harpham:
And what about your boys? Do you think they knew how serious the situation was?
Becky:
We told them everything up front, so they knew what the prognosis was, and the survival rate, and they just said that we could beat this, all of the family together.
Dr. Harpham:
Well, when most people think of breast cancer they think about a breast lump. Inflammatory breast cancer often presents without a lump, which was the situation with a number of you. The mammogram and the ultrasound can be normal, and the diagnosis is based on a biopsy, which is ordered by a physician who suspects cancer. All three of you were treated initially with antibiotics for a presumed infection. Let's talk about what it's like when there is difficulty getting a correct diagnosis. Lynn, can you share with us the experience of trying to get your diagnosis?
Lynn:
Yes, it's a little nerve-wracking to be treated over and over again for something that's not really wrong with you. And I will say that my primary care physician was pretty supportive when I finally insisted on seeing a breast care surgeon. And in fact, even as she prescribed antibiotics for the mastitis, she said, "you know, there's really no reason for you to have mastitis in this time of your life; it's very unusual that you would have it." The radiologist is the one who suggested that it might be mastitis, at first, the radiologist who did my mammogram.
Dr. Harpham:
Suggested it might be what?
Lynn:
Mastitis. So we went ahead with the treatment and I believe actually that was just sort of an elimination process, because if it was, the antibiotics would have worked. But I knew when I was referred to an OB -Gyn who thought I had some sort of dermatitis, I got really nervous, because I knew it wasn't dermatitis, went back and insisted on seeing the surgeon. Although I have since discovered since that that is real typical and many doctors just don't ever see inflammatory carcinoma of the breast, because it just isn't around that much.
Dr. Harpham:
What did you learn, looking back, about getting a diagnosis?
Lynn:
I've learned that you have to be aggressive about your own health and you have to know your own body, and when you know that something's wrong with it, you just have to push until you find out what the problem is.
Dr. Harpham:
Is there anything, looking back, you wish you'd done differently?
Lynn:
I wish I'd insisted sooner upon seeing a specialist in some sort of breast care.
Dr. Harpham:
Becky, what about you? Can you share with us the difficulties you had getting to your diagnosis?
Becky:
Well, they wanted to keep treatment as like I was allergic to something. They would not do an ultrasound until my husband got very upset and demanded they do one. And then when the ultrasound showed the tumor, it was, then we got a different doctor and a different surgeon and he was more aggressive, and did all the tests that he was supposed to do.
Dr. Harpham:
Same question, looking back. Is there anything you wish you had done differently?
Becky:
Probably insisted on a mammogram and ultrasound sooner than when I got one.
Dr. Harpham:
And what if they said, Oh, I don't think you need it?
Becky:
I would still have insisted. My husband can be very persuasive.
Dr. Harpham:
Carolyn, what about you? What did you learn from your experience about trying to get to the correct diagnosis?
Carolyn:
My problem was mostly with myself. I didn't get myself to the doctor soon enough, and I think there are a lot of women who are so focused, as I was, I was so focused on my family and what I was doing, it was summertime and we were busy and I knew that my breast was a little unusual, but I just kind of thought, oh, well, we'll see what happens. When I finally, actually, my husband said: You'd better call the doctor. When I called the doctor and she said, "come down today, right now", and then when I saw her she was pretty clear that we were gonna try antibiotics but this could be something more. So, in a little over a week on antibiotics, I was in for a mammogram, but I think that the message that I want to send to women is different, and it's that you take your own health very seriously. You don't notice something different and just blow it off, you know. So my experience was a little different, I had myself to blame. For you know, not acting quickly enough.
Dr. Harpham:
How did that make you feel about the diagnosis?
Carolyn:
Well, you know, inflammatory breast cancer is so aggressive that I wonder
if the three or four weeks that I delayed would have made a significant difference, and sometimes I beat myself up about that, but you know, what's done is done, and it is not unusual for people to be a little casual about something that doesn't seem quite right.
Dr. Harpham:
Especially when you're young and otherwise healthy. From your description it sounds like cancer was not really on the radar screen when you first noticed the changes yourself.
Carolyn:
No, and it's funny cause I should have known. I had heard of inflammatory breast cancer. Out of all of us, I was probably the only one who had been somewhat familiar with it. And even with that, when I noticed, you know, I really didn't think much of it.
Dr. Harpham:
Well, don't you think there's this idea that people can know about something but they just kind of don't think it applies to them? I mean, that intellectually you knew about this entity called inflammatory breast cancer, but you really didn't think Carolyn had to worry about that.
Carolyn:
No. And I didn't for one moment think that this problem I had was anything serious. And I think unfortunately we women tend to do that sometimes.
Dr. Harpham:
Do you think there's any way to change that?
Carolyn:
I think if people were more familiar with not just inflammatory breast cancer, but the many, many things that can be masked by mild symptoms, that are serious, and maybe we should all just routinely taking our health more seriously. There are many other things in life that are masked by somewhat mild early symptoms.
Dr. Harpham:
Or they first present, it's not that they're masked, they first present with mild symptoms.
Carolyn:
Exactly. Thank you, it was a better way to say it. And I think we all need to be just a little less casual maybe, about small changes in our body.
Dr. Harpham:
Then how do you keep from, you know, people don't want to be a hypochondriac, how do you find that balance?
Carolyn:
I don't know. You know, my thing is, if it's unusual if it it's unusual for more than a week, then maybe it's serious, and what can it hurt to check.
Lynn:
I'd like to add, too, if the symptom doesn't go away. That's a sign that you really need to pay attention to it, or if it worsens, and I really got on my soapbox for awhile after my diagnosis, every woman's group that I had any sort of contact with I said, look, these are the symptoms of inflammatory breast cancer, you can have a normal mammogram, you can have a normal sonogram, and you can have some sort of other diagnosis, but you need to know your own body, and if it's something that's not usual for you, and it keeps on, you need to push, so you have somebody look at it who knows what's going on with you.
Dr. Harpham:
What about you, Becky? How do you find balance?
Becky:
I just think more women should take their health more seriously. Anything that doesn't go away, they should have checked, because some of us women don't take it seriously. I didn't at first, till my husband insisted I go see the doctor.
Dr. Harpham:
Well, this idea of balance, obviously, is close to my heart, too. I was an internist, who tried to teach my patients how to find balance, and I'm a long-term cancer survivor who tries to find balance myself. And I think two key helpful things are, one, working as a team with your physician, so that you can go in and say, "is this something to worry about? Let's work together", having a plan. The other thing is recognizing that sometimes there'll be false alarms, and that's okay. If you go in and it turns out it's not a problem, that's okay. You know, you don't lose that much, whereas if you don't go in, you wait, and it's something that really needed early attention, you do pay a price.
Carolyn:
I'd like to expand on that one second, for those of us who have children, which I guess we all do, when it's your kids, and something doesn't seem quite right, don't you always call the pediatrician, and you may not go in, but you may say, "this is what's happening, is that normal? Should you see my child?" I mean, I don't know about the rest of you, but I'm must call the pediatrician a hundred times a year. So I think we need to apply that same rule to ourselves. You don't have to go in, but you can at least make that call and say, "I've noticed something, should we at least take a look at it." And we do that for our kids, we need to do that for ourselves.
Dr. Harpham:
You're absolutely right. And also, if we have a suspicion as a mom that there's something wrong, and we feel like we're blown off, we usually don't let go. So I think this idea of treating ourselves the way we treat our children is excellent.
Carolyn:
Thank you.
Lynn:
I think it's a good point too. And I think as moms we tend to put ourselves last. We take care of our kids, we take care of our husbands, we do all these things and we think we can just keep going, we have to keep going when we've got a cold, when we don't feel a hundred percent, so we're used to doing things when we're not feeling a hundred percent, so we think we can.
Dr. Harpham:
And I also want to emphasize the point you brought up about having a plan. I think two of you said, well, when it didn't get better in a week, we went ahead. And this idea of having a plan ahead of time I think takes away a lot of the anxiety and reassures you that you're doing the right thing, you're being appropriately aggressive.
Lynn:
Yeah. I agree.
Dr. Harpham:
Well, another common experience among cancer survivors is this push to learn about the cancer, learn about treatment options, to obtain second opinions, and to try to weigh your options so you can make wise decisions. Well, obviously, this takes a lot of time and energy, and patients diagnosed with inflammatory breast cancer, often feel an urgency to begin treatment, an urgency that's not shared by many other cancer patients, who are often told they have time before they need to begin treatment. Carolyn, how did that sense of urgency, a sense that you needed to begin treatment quickly, play into your survivorship?
Carolyn:
Well, I was very fortunate. I mean, at my mammogram they told me right now, pick up the phone and make an appointment with an oncologist of your choice, no, actually they made the appointment, they said, "who would you like to see" well, actually, it was a breast surgeon, I keep saying oncologist, "who is the breast surgeon that you would like to see?" and they made the appointment for me right there, and the physicians that I saw were all very good at moving me onto the next step very quickly. I was probably in chemo ten days after my diagnosis.
Dr. Harpham:
Now, did you get any second opinions in those ten days? How did you find out about your options and choose from among them?
Carolyn:
Well, again, I was in a little different situation. I was pretty familiar with what was available for inflammatory breast cancer, and I picked the breast surgeon of all breast surgeons in this area, he was famous, and when I went to see him, what he told me matched what I knew and made perfect sense, and he said, "feel free to get a second opinion, do it quickly", and I said, "you know what, no, I'm okay with this. I know this is right." Now I am not one to say don't get a second opinion. Don't misunderstand me, but I had some prior knowledge and I trusted this guy implicitly and what he said matched what I knew. My brother did go on the Internet and pulled me up a ton of information, which confirmed the treatment plan that I had agreed to.
Dr. Harpham:
So you had a jump start, you had people advocating for you, so even though there was urgency, it sounds like you felt confident that you had the information you needed to make a good decision.
Carolyn:
I did. And I know that many, many, many women do not have that information and they need to, either themselves, or have an advocate help them get more information or get a second opinion, but the urgency in this means that if you are going to do that, you need to do it immediately.
Dr. Harpham:
Lynn, tell us about your experience getting information, learning about inflammatory breast cancer, and making a treatment decision.
Lynn:
When I first saw the breast surgeon who did the biopsy, she made it clear by her actions that I needed to get into treatment right away, and she gave me the name of an oncologist and made the appointment. She said, "this is who I would send my family members to if they were in your situation." So right after the biopsy, before the diagnosis was even confirmed, they started doing the bone scan and all that, so that by five days later, I had my first chemo treatment. When I did see the oncologist, two days before I started chemo, he did share that he told me about the most effective treatment that they knew about and that's what we started with and went with. I just had immediate confidence in him, and went with what he suggested. I checked into a few things later on the Internet and I found the same things Carolyn did, what he suggested was pretty much the standard treatment for inflammatory breast cancer.
Carolyn:
If I may interrupt for just one second. There's not that many options with inflammatory breast cancer. It's like this way, or no way.
Dr. Harpham:
So it almost made it easier, that you didn't have this wide spectrum of choices.
Lynn:
The only choice that I was sort of given was that we could either do all of the chemotherapy first and then have surgery, or do the first chemotherapy and then the surgery and then the next chemo. And that really depended on how good the response was to the first four rounds of chemotherapy.
Dr. Harpham:
So how did you make that decision about the order of your treatment?
Lynn:
Well, we didn't actually decide at that point. I went through my first four rounds and we decided at that time I had had such a good response to the first four rounds that we went ahead and did surgery, and I had the rest of it afterwards.
Dr. Harpham:
So you actually were able to make one of your decisions after a few months.
Lynn:
Yes. Based on my response to the first portion of the treatment.
Dr. Harpham:
Ok. Becky, I'd like for you to share with us this urgency issue. How was it to obtain information, have to make decisions, begin treatment quickly.
Becky:
I got a lot of information over the Internet, me and my husband both checked it out and my oncologist and surgeon both requested my case since it was so rare at our hospital, they both requested it and wanted it. So we got pretty quick in getting the chemo started.
Dr. Harpham:
How did you feel about that? About starting something so drastic so quickly? Was that reassuring?
Becky:
Well, getting it started was a little bit reassuring but it was also a little bit scary for me because I'd seen friends and other people go through it.
Dr. Harpham:
Were you at all concerned about knowing all your choices? Did you feel like you had enough information?
Becky:
We had a lot, and then we also had a second opinion done and they said they would do the same thing that my doctors were doing now.
Dr. Harpham:
How did that affect how you felt going into treatment?
Becky:
After the second opinion and everybody that we talked to, because I knew a couple of people with this, and they said the same thing, it was a little bit more reassuring that they would do the same thing.
Dr. Harpham:
You mentioned your husband. How did he play into your getting the diagnosis and getting started on treatment?
Becky:
He was very aggressive for me to start a treatment early and get it done with and have the right kind. He did a lot of research over the Internet and he worked for the medical field so he did a lot of research through his hospital about it.
Dr. Harpham:
Was that a new thing for you, to kind of be researching something together, or did he just kind of jump in and take over?
Becky:
I think we both took over. In certain areas he took over and in other areas I did.
Dr. Harpham:
What about you, Carolyn? How did your husband play into this diagnosis and starting treatment?
Carolyn:
Well, my husband was the one who prompted me to go to the OB-Gyn initially when I was playing around, you know, he said, " you'd better go to the doctor", and he kind of pushed me towards that diagnosis. Once I was diagnosed and they kind of were rushing me, like Lynn said, you're doing bone scans, you're doing this and that, boom! You're in chemo. I think he felt very much like I did, very much like."this is an aggressive cancer, so let's get movin'", let's hurry up and start fighting it, because very day with a cancer this aggressive is a day lost. So, he was always very supportive. After my mastectomy, I don't know, two weeks after my mastectomy, I called my doctor and said, "Well, when do I get this bone marrow transplant." And she said, "You are the only patient I've ever had who called me and begged me for a bone marrow transplant." And I said, you know, my husband was very supportive. We just felt like we wanted to hurry up and do everything that needed to be done, because we knew how serious it was.
Dr. Harpham:
So you were just a team together gung ho.
Carolyn:
My husband is a quiet man, but he was incredibly supportive, felt as I did we were gonna hurry up and fight, fight, fight, and he held the fort, so that I never had to worry about anything, and yes, it was a very good...
Dr. Harpham:
Meaning he took care of the children, he took care of the home, while you were taking care of treatment.
Carolyn:
Yes, well, he and my mother and my brother, they were the big family affair, which I know we're gonna talk about because it's so important.
Dr. Harpham:
Lynn, what role did your husband play in dealing with the diagnosis and getting started on treatment?
Lynn:
He was also a huge support to me. He was my nursemaid much of the time. I know he had conversations with the oncologist that I probably don't even know about so he could keep himself well informed. But I also want to say that when I found out that they were going to do chemotherapy before doing surgery, I was appalled. I said, "You mean you're going to let this cancer hang around on my body? While you start with chemo, when you could have just cut if off", and of course they explained why they do it in that particular order, but we were both very interested in getting going with treatments to take care of the problem.
Dr. Harpham:
Well, we've talked about already cancer being a family crisis that affects the children. You mentioned that your mother helped out, and of course, the husband's involvement. Becky, what role did your family play in your survivorship?
Becky:
Well, it would be my husband's family. They helped out a lot. We all live next to each other, so they helped with watching the kids when I went to treatment. My husband was there, every time I had a treatment, every doctor's appointment, he's still there, every checkup I have, he's there. And my kids are very supportive and all my family is. They were there rootin' for me.
Dr. Harpham:
You were lucky to have that support, but even under the best of circumstances, we're talking about role changing, shifts in role, how was that for you?
Becky:
It was weird at first. My husband did a lot of this stuff, taking care of the house and getting the kids to school, and doing stuff that I usually did, while I was sick with chemo and it was a little bit strange at first. He learned to do a lot of things he'd never done before.
Dr. Harpham:
You used the word strange. How did it feel to see him doing things that you used to do?
Becky:
It was like I couldn't do anything any more. I felt helpless at some times that I couldn't get up and help the kids with their homework or take them to school, or just do things with them that their dad had to do now.
Dr. Harpham:
How did you deal with that feeling? Helplessness is not a pleasant feeling.
Becky:
My kids actually helped me. I think they noticed that Mom was feeling down and they would come in and lie on the bed and do their homework and ask me things and have me help them with their homework then.
Dr. Harpham:
So kind of regained some of your role as mom, as opposed to just full time patient. Lynn, what about you? What did your family play in your survivorship?
Lynn:
Well, my husband was the most prevalent part of that. Our family does not live anywhere near us. We're out here without any relatives, and I depended a lot on my coworkers and support from people at our church. This was very hard on my son, who was at college at the time, and he wasn't able to be around to see that we were actually doing okay with treatments, I was getting through it all right. My daughter was great about not treating me as an invalid, she pretty much treated me normally, except that I didn't have much energy to do anything with her. That was hard, because that was her senior year, and I wasn't able to be very involved with her social activities, things that are important to seniors in high school. But I really depended, my family became extended and my coworkers organized teams to make meals for us, etc. We found out my husband is a wonderful housekeeper, better than I am at it, and it was actually kind of fun.
Dr. Harpham:
And who does the housework today?
Lynn:
We share it now. We share a lot more than we did before. He does very very much more than he used to do. I think we've seen, we needed to take care of things together so we have more time to enjoy the other things.
Dr. Harpham:
So, a silver lining.
Lynn:
Yes. Yes.
Dr. Harpham:
Carolyn, what role did your family play?
Carolyn:
Well, my children were very, very young at the time, 2 and 4, so my husband, who is self employed, still had to go to work every day, so my mother, who is elderly, came down every morning before my husband went to work, and stayed the day. And my brothers, who are both quite older than me, would come every weekend to relieve my mother and play with the kids and help clean the house and I had two people who orchestrated the meal thing, one orchestrated like for a certain time period and then the other one took over, and they orchestrated daily meals, and two things, one thing that I found frustrating is my mother would hardly ever let me off the couch, and I felt I understood, but I felt a little resentful, this is my home, these are my children, I can get off the couch and, you know, make her a peanut butter sandwich, and my mother wouldn't let me.
Dr. Harpham:
What do you think was going on there?
Carolyn:
She just had this terrible need. It was all she could do, was take care of me, and she had this terrible need to do it. And I, I mean I understood, and I let her, but it was frustrating.
Dr. Harpham:
So how did you deal with it?
Carolyn:
Well, I'd argue for a while and then I'd give in gracefully. I'd argue, "Mom I can get up , I can do it. Mom, Mom..." and then I would just shut up and let her do it. When she would leave I would tell my husband, when she would leave and my husband would come home I would say, "Please let me go in the kitchen. My mother wouldn't let me."
Dr. Harpham:
So you kind of chose your battles.
Carolyn:
Yeah. And my kids were two and four so they, they understood I was sick, we told them about it as much as we thought they could understand, and they would come, sit on the couch, which I wasn't allowed to leave, and come sit and cuddle with me and show me their school papers and tell me stories about their day at preschool, and when I would get shots or things at home, they would hold my hand.
Dr. Harpham:
So you kept them involved with you.
Carolyn:
Yeah. I was very afraid that if they didn't see and understand what was going on that they would have terrors, so we told them as much as we thought they could understand, and we let them see me get shots ...
Dr. Harpham:
I think that's accepted as a very healthy and adaptive approach for helping your children, and helping you.
Carolyn:
And they felt they were helping. If they held my hand during a shot or a blood draw, it made them feel that they were helping.
Dr. Harpham:
And they were.
Carolyn:
Umhmm. They were.
Dr. Harpham:
Well, thank fully all three of you are in remission, doing well, your cancer treatment is in the past. Let's talk about if any of you are dealing with any persistent or new problems related to your cancer or treatment. Becky, how are you doing? Do you have any longer term issues, either medical, work-related, marital?
Becky:
Well I had to quit work because I developed lymphedema in the arm that I had the mastectomy side on, and my shoulder's a lot messed up, and I can't work any more, lifting heavy things, and I had another mass taken out, luckily it wasn't more cancer, it was just fatty tissue. I had another surgery on that side. So we're dealing with a lot of aches and pains in that shoulder and the joints from some of the chemo and dealing with lymphedema in my arm.
Dr. Harpham:
Now, who's taking care of these problems?
Becky:
My oncologist, my surgeon, my physical therapist.
Dr. Harpham:
And are you making progress?
Becky:
Yeah, my arm is actually not as swollen any more, after weeks of having it bandaged and exercises I do on it, just trying to find out when I can go back to work and how much I can use my arm.
Dr. Harpham:
What's it like to deal with long term problems that are due to lifesaving treatments?
Becky:
It's hard because I can't do as much with my kids and my family because I get tired easily still. I can't pick up my kids any more, or my nephews and nieces. So, it's hard when I can't do things that I used to be able to do with them.
Dr. Harpham:
How does it affect you emotionally?
Becky:
At first it was hard, but my youngest and now three of my kids seem to get me more involved in talking about what they've done today or what they're going to do, and I can go and watch them do things. As long as I'm sitting down, I'm pretty good.
Dr. Harpham:
Lynn, what about you? How are you doing after all these treatments?
Lynn:
I'm doing very well, actually. I do have lymphedema, as well, so I do a program of self-massage and exercise, and I'm usually able to keep it fairly under control. It's an irritation and it does take time to take care of it, but I feel like, I'm alive so I can face this. I really feel I can face about anything that comes along, at this point, after going through the cancer treatment. And I started having, referring to Becky's joint pain; I'm having a lot more joint pain lately. I haven't discussed that with my doctor yet. I'm going to see him in three months so I will discuss it with him the next time. But, small things like that are irritating and annoying, but it's all right.
Dr. Harpham:
Does it make you worry about cancer?
Lynn:
I try not to worry about cancer. I try to look at my aches and pains the same way I would if I hadn't had cancer, and to notice if they are unusual, do they persist, do I need to bring them up, and if I feel like they need to be brought up, I do discuss them right away with my doctor.
Dr. Harpham:
And we talked about balance before, finding that balance of reporting symptoms to your doctor, is not just because you're scared it might be cancer, but non-cancer problems deserve evaluation and treatment, too.
Lynn:
Right. And there are other effects from the chemotherapy, too. This particular therapy throws you right into menopause, has other effects on your body. So there are little things to deal with all the time. It's okay, it's just a lifestyle adjustment, and it's always going to be that way, so, you adjust to it.
Dr. Harpham:
How hopeful are you about things getting better?
Lynn:
As far as…
Dr. Harpham:
As far as the lymphedema, the joint complaints, the menopausal symptoms?
Lynn:
Well, the lymphodema will probably never go away. There just isn't any cure for it right now unless there's more research done. But it is manageable. The side effects from the menopause are a little harder to deal with, I'm a little frightened about estrogen supplements, for example, so we do the minimum that we can do and still take care of whatever problems that I have.
Dr. Harpham:
What about nonhealth issues? Lasting effects in your relationships, in your outlook, nonmedical issues?
Lynn:
I feel like if it hadn't, if I hadn't been through the treatment, my life is pretty much as it was before, except for those physical things, like lymphodema and the joint pain, etc. It's almost, I know it's not like anything the same, but it's almost like giving birth. I don't have huge memories of all that, I just feel like we've taken care of it, we've gotten through it, it was, the treatment was very difficult, at times, but it's over with for now.
Dr. Harpham:
So you just took up where you left off?
Lynn:
Yes. I pretty much feel that way. I do most of the things I did before. I used to row, though I haven't quite gotten up to the, I don't have the stamina to do that at this particular time, but there's hope that I will have. So I just do as much as I can and the things you can't do any more, you find other things to replace them.
Dr. Harpham:
Very good. Carolyn, how about you? The after-effects of your treatment?
Carolyn:
You know, Lynn and I have very similar experiences. I, number one, I also
have some lymphedema, as the other two do, but again, it's pretty manageable, I mean, like, actually today it's kind of swollen, so I'll have to go back on my exercises and massage stuff, and I also went into menopause, which is really annoying, but you know, like Lynn says, you adjust. It's a lifestyle adjustment you get used to doing what you have to do for the annoying menopause systems. I am pretty much doing everything that I used to do. I had some lung damage from the high-dose chemo, and I'm almost back to my old stamina and lung capacity. I had to build up to it, I'm swimming laps, I'm walking, trying to build my lung capacity back up, and I'm almost there. I'm pretty much doing everything that I used to do and life is pretty much back to normal. But I have one non-health thing that I find annoying. My life is good, I'm fine, I'm doing everything pretty much that I used to do, but I have this annoying habit of referring to it. "When I was sick, babababa" "When I was sick..." It's like, as much as I feel better and I feel like I'm past it, life is pretty much going on the same as it used to, I have this annoying habit of referring to it.
Dr. Harpham:
Any idea what that's about?
Carolyn:
You know, it's like I can't let myself forget it or something? I don't know what that is but sometimes I'm embarrassed by it. Like I'll be talking to someone and I'll refer to it and then I'll think, "Now why did I say that?" There was no necessity.
Lynn:
Can I add something to that? It's sort of like at the end of treatment, I don't know if you both felt this way, but after my last chemo I kind of felt like they cut the umbilical cord there I was, I didn't have to be there as much any more, and then after radiation, all of a sudden I was just on three month visits, and before, being at the doctor, keeping appointments, was so much a part of my life, it was real disorienting not to have to be doing that any more. And I think it's just such a huge part of your life for a concentrated period of time, it's hard to realize that we're past it and sort of out of that. It all of a sudden isn't the big important thing in our life any more.
Carolyn:
Yeah. I agree.
Dr. Harpham:
Well, I talk about this in my second book, "After Cancer: A Guide to Your New Life". During treatment, everyone is focused on the patient, and hopefully the family; it's a shared crisis. And then, after the last treatment, there's a tendency to feel like, it's over, but in fact, many issues and feelings and concerns first arise after completion of treatment. For instance, fear of recurrence. Very few patients in treatment fear that their cancer is gonna come back. But when you've finished your treatments, that's when cancer survivors have to deal with fear of recurrence, fear that the cancer comes back. My point being there's a lot of processing going on after completion of treatment.
Carolyn:
I agree completely. And I think you're right. I cried the day my chemo was over because I felt like there's nothing more I can do. I've done what I can, and now I don't know what's gonna happen...
Dr. Harpham:
Right. You're not taking action any more.
Carolyn:
You feel like all the aggressiveness and the fighting and all that, it's done now. And I was just, I had a hard time just laying back and seeing what happens.
Dr. Harpham:
What about dealing with uncertainty about the future?
Carolyn:
Yeah. I'm real optimistic, but when you get an ache or a pain, you think, "Oh-oh!"
Lynn:
The one who does that for me is my husband. Every time I hold a joint or something cause it might hurt a little bit or I get a little rash here or there, he's right on top of it, he's like, "What's wrong? What's wrong? Need to call the doctor?" And I'm thinking, "Give me a break, I'll know if it's serious enough to have to talk to our oncologist about it."
I think I really will use good judgment in bringing up issues that need to be brought up with the doctor. But he's real concerned because he's afraid it will come back. I am a little, I'm not afraid it will come back but I realize it may, and that's just a fact.
Dr. Harpham:
How do you deal with that uncertainty?
Lynn:
It doesn't really bother me. I feel like if it does come back, we'll just deal with it again, I'm not going to live my life being afraid that it's going to come back, I just have the knowledge that it's very common with this particular kind of cancer to recur.
Dr. Harpham:
Becky, how about you?
Becky:
I don't think about it that much. It's in the back of my mind, but I'd rather live my life now, not worry about having to go to treatments. My husband worries about it, but we try not to think about it that much.
Dr. Harpham:
So how do you think your husband deals with the uncertainty, Becky?
Becky:
He's another one if I get aches or pains, he's "shall we call the doctor" or..."do we have to" and I say, "Not right now, it's okay." He always wants me to call the doctor for a certain thing and he's very aggressive about that.
Lynn:
You know I just think, I'm fifty years old you know, I'm entitled to have a few aches and pains that I didn't have when I was younger, so it's okay!
Dr. Harpham:
Absolutely. Cancer survivors get normal aches and pains. That cancer did not make us immune to normal things that happen. And it's real important to keep that in mind. It was funny when Carolyn mentioned singing the song, "I'm gonna live I'm gonna live you can't stop me", I'll share with you that one of the ways that deal with the uncertainty about my cancer, is saying repeatedly, "I refuse to live my life afraid. I just refuse to live my life afraid."
Carolyn:
I agree. I agree with what Becky and Lynn said. It's in the back of your mind, but you know, your life is full, your life is going on, and it's a pleasant life, and to destroy it by constant worry and anxiety, I'm not willing to do that. I feel very optimistic and if something does happen, which I know it could, then I will deal with it, like Lynn said. But I can't live my life worrying about it. If I get an ache or pain, I'll think about it, like, Oh, what is that? And like Lynn said, you give it some time, see if it persists, and almost always it's a little ache or pain that went away.
Dr. Harpham:
We're actually tapping in to the last topic I was hoping to cover today, and this is a topic you can't avoid talking about when you're talking about survivorship, no matter what the age of the patient or the stage of the disease, and I'm referring to patient attitude. Lynn, let's start with you. What role did attitude play in dealing with inflammatory breast cancer?
Lynn:
I think that attitude is of ultimate importance. I just always felt like we were gonna do everything that we could and I honestly did not concentrate on the negative aspects of treatment, although sometimes it was really bad, I knew that it was gonna be better in a few days. When I was really sick from chemo, I knew that in a week or so, I'd be okay, enough to get up and around, and then I'd be okay enough to feel well enough to face the next round of chemo. It seems like that you get toward the end of your cycle and you're just feeling great, and it's time to go and have it done again, but you have that time when you're feeling better to look forward to. And honestly, a lot of the people I met during treatment, have a lot of the same attitude, and we tried to look at funny things that were happening to us...
Dr. Harpham:
Like what?
Lynn:
Well, you know, it's nice not to have to shave your legs. You know, just little things. Joke about the chemo brain, that you can't remember things. I actually thought it was just me and went to the doctor and she said, no, there's a name for it, called chemo-brain. And we still joke that now I finally have an excuse for not being able to remember things. We would joke about not having nose hair so that you can't tell your nose is running, it slips out before you expect it to, those kinds of things. You just have to keep light on as much as you can, and just focus on getting better. I did see a couple people who were so frightened that I feel like it interfered with their recovery. And I just never got into that, never focused on the possibility of what might happen that wasn't happening. For example, try to keep positive all around.
Dr. Harpham:
Were there any down sides? To trying to be positive when you're going through such grueling treatment and when the prognosis was not great?
Lynn:
If there were, I wasn't focused on them. I'm sure during that treatment time, there were times when I was down. There were times because I was just sick. You know, physically, when you're feeling horrible, you're bound to be not quite as positive for awhile. I had bronchitis during treatment one time, and compounded by the fact that you don't have enough white cells to stay healthy in the first place, it's really tough to get over illnesses like that. And those times are just rough. But then, when that's over, everything else seems so much better by comparison.
Dr. Harpham:
Almost a blessing that you had to go through it cause you really appreciate the good times.
Well, did you ever feel guilty about feeling down? If you wanted to have a positive attitude?
Lynn:
I never did feel guilty about that. I felt, I just always knew things would be better later and you just have to give it a little time.
Dr. Harpham:
Becky, what about you? What role did attitude play in your survivorship?
Becky:
I think attitude is very important. I always had a positive attitude for my kids and my family, and everybody else around me had a positive attitude that we would beat this.
Dr. Harpham:
Was that hard to maintain?
Becky:
Not really. I'm usually pretty upbeat. I have a positive attitude about almost everything. So it wasn't too hard to maintain it. There were some days that I got down and the kids helped me to stay up, so...
Dr. Harpham:
So the kids played a big role for you?
Becky:
Oh, yeah.
Dr. Harpham:
Carolyn, how about you?
Carolyn:
Same as Becky and Lynn. I had a positive attitude most of the time. I'm kind of a matter of fact person, like, well, you do what you have to do, and that's what I was doing. And there are days, like Lynn said, you know, you're not feeling good and sometimes if you wake up early in the morning and the house is real quiet, it's kind of hard. You start getting a little weepy. But I always felt like I was doing what I had to do and I had a positive attitude, and when people ask me now, "My gosh, how did you go through that?" and my mother will get real mad at me cause I'll say, "Oh, it wasn't that bad." And my mother will say, 'Yes it was! It was terrible! Why do you tell people that?" And I say, "Well, you know what, it is like having a baby. I guess it was terrible, but I'm past it and I got through it and I don't really remember all the bad parts.
Dr. Harpham:
And it was worth it.
Lynn:
If I could add one more thing, my one prayer when I was going through all this was that I would accept what was happening to me with grace, so that if someone else in my life were faced with something like this, they would see that you can face this sort of situation gracefully and that you can get through them and always have people around you that can, let people do things for you, it makes them feel good and it helps you as well.
Dr. Harpham:
And I think one of the dangers is the misconception that a positive attitude means being upbeat and optimistic a hundred percent of the time. A positive attitude is an attitude that helps you get through, and for most people that does include periods of being weepy or sad or feeling not so optimistic, but then you let it pass.
Carolyn:
Exactly. And I think you're so right. I think people have been told that you have to have a positive attitude, you have to have a positive attitude, so that if they have a bad day, they feel guilty. And that's just not realistic. Like you said, having a positive attitude just means that you can get through the bad times, cause you know it's gonna get better.
Dr. Harpham:
And the bad times are not because you're pessimistic, desperate or despairing. Bad times or bad thoughts, dreams, worries, are because you're human, or because you know there is uncertainty.
Lynn:
And sometimes you're just plain sick. And you feel so awful.
Becky:
Exactly. It's hard to feel real optimistic when you're really sick.
Dr. Harpham:
That is a very important point, and it was mentioned that at the low points of treatment, you know that you'll feel better in a couple of days so if you feel bad emotionally, or you don't feel good emotionally, you can also know that that is related to how you feel and that that will improve as you feel better.
Dr. Harpham:
Well, I hope our discussion has helped to sort through some of the issues that may be a part of your life. A big thanks to our guests, Becky, Carolyn and Lynn, for their willingness to share their thoughts and 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 website or by telephone. For the American Cancer Society's Cancer Survivors Network, I'm Dr. Wendy Harpham, wishing each of you a great day, today and every day.
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