Living With Metastatic Breast Cancer

Jamie DePolo: Hello, everyone. This is Jamie DePolo. I’m the senior editor at Breastcancer.org. Welcome to the Breastcancer.org podcast. Our guest today is Roz Kleban, who is a licensed clinical social worker, who is a clinical supervisor and program coordinator at the Breast Imaging Center at Memorial Sloan Kettering Center. Roz has worked at Memorial Sloan Kettering since 1989, and she works with patients being treated for all stages of breast cancer. And our focus today is going to be on metastatic disease and how Roz has written a very informative and insightful article called “Metastatic Is the New C Word” and sometimes how metastatic gets put in a closet and people don’t want to talk about it.

So welcome, Roz. It’s so delightful to have you here today. I feel that we’re very fortunate, and this is going to be a great podcast.

Roz Kleban: Well, I’m very pleased to have been invited, and this is an organization that has spent years doing only good things for patients.

Jamie DePolo: Oh, well, thank you. So now, let’s just go right into it. Breast cancer is talked about openly. We have pink ribbons, we have walks, we have all sorts of fundraising things, but in most cases we’re talking about early-stage disease. The whole idea of, “I’ve beaten breast cancer and now I’m getting on with my life.” And metastatic disease, you know, people who are living with cancer but are refusing to be beaten by it -- for them it’s a chronic condition. It still seems to me very much in the closet, and is that fear, or what’s going on there?

Roz Kleban: Well, for most of my career it has become apparent to me that, although when Betty Ford came out of the closet and Happy Rockefeller, they did a tremendous amount for breast cancer all around, and it became no longer something that people would fear and were frightened of. It’s a disease that they could beat, they could win, and 20, 25 years ago as I was doing it, I saw that very clearly there’s this population of people that was sort of hushed and never talked about, so you ask is that fear.

I would think that that’s fear, and certainly when it comes to raising money, what you want is to spread a rosy picture of, “Look what we can do and look at what we can achieve and conquer,” but by excluding this population you do a disservice to those people struggling with that illness, and you do a disservice to everybody. Having breast cancer is not a race and a picnic and a fun afternoon as it is unfortunately sometimes portrayed, but it is a whole continuum of what can happen to somebody. So yes, I certainly think its fear. It’s not working on the better side of breast cancer, it just however is real, and it’s only the humane, realistic thing to do is to acknowledge this population.

I think also if we bring this group into the public’s eye I think it will go a long way to reduce some of the fear, because women who are diagnosed with this feel that it’s an instant death sentence. You know, I see people being diagnosed and they’re wondering if they’ll make it to Christmas, will they see their daughter get married. The truth is that we have a lot of women and a lot of patients who are living a very long time with this illness because of the improvements in treatment, certainly for that HER2 population there has been an enormous step forward. One of the doctors here at Sloan called Herceptin a real game changer. So with knowledge comes power and people will understand that this is not a death sentence.

Jamie DePolo: Right, and metastatic is not the end of hope.

Roz Kleban: It is, right. I think that we look at hope only in one way. What is hope? Hope is the cure, hope is a long life, and like everything else the concept of hope is very complex. And there’s hope for all kinds of things, and perhaps we would all be better served by looking at things in the immediate time, now, as opposed to the future. So hope is to, I don’t know, finish a project, hope is to get the degree that you had always wanted, hope is to improve a relationship that was meaningful and dear to you. So there is -- hope, in all rounds of our life, hope can improve communication with friends and relatives. It’s not just one thing. I think if we got to know the metastatic population, their continued life is just the very picture of hope.

Jamie DePolo: Okay, and this population, I think you said this, is growing, because as treatments have gotten better, more and more women and men are living with metastatic disease, and it’s a chronic condition. It’s like diabetes, it’s like arthritis, it’s something that you have, but it’s being treated and you’re going to continue to be treated.

Roz Kleban: I think generally when our patients are newly diagnosed with stage IV disease, what the doctor often will say is, “At this time we can’t cure this, but we can treat it and we can turn it in to a chronic illness and you could go and live your life.” So that when people ask, “Who are the patients with metastatic disease?” Well, people in your class, the people behind you or in front of you in line at the supermarket. They’re at the PTA meeting, they’re on the tennis court, they’re in the theater, they’re living their lives. I think we have a tendency to not pay attention to this crowd, and therefore we have awful ideas and visions as to who they are. I mean, we can think about Lynn Redgrave, who had metastatic disease and did a one-woman show until the end of her life. She continued to live her life, as do most of the other patients.

Jamie DePolo: Sure, absolutely, and how do we work to get that message out there? I mean, I know you’re working very hard, but the rest of us, how do we do that? How do we get that message out there?

Roz Kleban: Well, truthfully, things have improved tremendously over the past 5 to 8 years, and the best evidence of that is this podcast that we’re doing. Ten years ago this would not have been done. Ten years ago every time there would be a conference, either a Komen conference, a Breastcancer.org conference, there would be no mention of metastatic disease, and now there always is a lecture for metastatic disease, break-out sessions. We just have to keep on pushing this, and during Breast Cancer Awareness Month, where there is an abundance of, “I beat it, I did it, I won,” there’s got to be equal push about who metastatic patients are, and it’s happening. I suppose we have to be patient but we have to keep pushing.

I don’t know how many people know that October 13 is Metastatic Breast Cancer Awareness Day, because there is this Metastatic Breast Cancer Network, an organization that lobbied Congress to actually have that put through. So the more publicity that we have, the more awareness that we have, look how much we’ve learned about breast cancer just because of the awareness. We have to do the same thing for metastatic people.

Along with the awareness, we have to have services. The tragedy is, there’s so much breast cancer, there are breast cancer support groups all over the place. We have to see to it that there are also support groups for women with advanced disease. Years ago I did a survey about how many of them there were in the entire country and it was very few, but I would certainly hope that there’s more now. In a place like New York City there’s still very few. So I have people who live in New York City not treated at Sloan coming to my metastatic groups because there are so few. So it’s awareness and it’s intervention and it’s services.

Jamie DePolo: Okay. That brings up an interesting point, too, because I know we have Discussion Boards on our site and some of the women there will say, if they’ve been diagnosed with metastatic disease, “Well, I went to a support group but it was for survivors or a lot of people with early-stage disease,” and they didn’t feel comfortable. And I wondered if you could talk a little bit about the needs of a woman with metastatic disease versus the needs of a woman with early-stage disease. I’m assuming those needs are different?

Roz Kleban: The needs are very different, and because I have such a large population here I have the ability to separate the two. I don’t think you service anybody by putting those two groups together because they have vastly different needs. The people with early stage, their life has really been shaken up, they sort of have been plucked out of their life, and are confronted with all kinds of issues: how to cope, how to view the future, but it’s time limited. They know for a fact that at such-and-such-a-date, all will end. They’ve finished chemo, they’ve finished surgery, they’ve finished radiation or some combination. Metastatic is different because, as you’ve already said, it’s a chronic disease. It therefore affects everything in your life and it will for many years and the good news is hopefully for many, many years.

So there are different needs, there are different goals, the coping is lifelong, the effect on relationships is lifelong -- on relationships, on the ability to have children for the young people -- on careers. So it is entirely different -- the two people, the two different stages can’t really help each other. So when I speak to people out of town I always caution them to find a group that’s dealing with the stage that they’re at, because that will be the most helpful.

Jamie DePolo: Okay, and that also brings up another good point. Do you have any recommendations for someone who’s been diagnosed with metastatic disease and maybe they feel a little bit isolated because their family and friends seem to be pulling back a little bit because perhaps they don’t understand it? As you said, maybe they’re scared, they don’t know that there’s a lot of hope surrounding that kind of diagnosis. What would you advise somebody? How would they kind of overcome that hesitation?

Roz Kleban: I think the best thing to do is just probably to find a community where you’ll be with other people who are struggling to cope with the same situation. What these groups do for members is to help each other cope. You know, “What I can’t figure out maybe my friend next door can help me, she’s already been there,” so I would suggest to seek out a group. When that is not possible, there is always the Metastatic Breast Cancer Network -- that is an online forum that has a chat boards, they have yearly conferences. In that way you will get to meet other people, and the discussion is, “How did you handle with your loved ones, with your relatives, and with your community?” I think once a patient gets confidence and can figure out what the meaning of this is, how it will affect her life, it will be easier to talk to friends and relatives, but you really can’t until you get your bearings, and you need to portray yourself and your needs to those around you. But I think it’s best if you can get the support of others in that situation. Young Survival Coalition does a monthly telephone group, because, you know, I’ve met women attending these conferences who live in small towns and have never met somebody else with the illness. So they really have to reach out to find these other sources.

Jamie DePolo: Okay, and I would put in a small plug, too, on the Breastcancer.org Discussion Boards. We have several forums that are for metastatic disease only, and I know that people have told us they find those very helpful because they can chat virtually with other women who have the same diagnosis, perhaps with even the same type of breast cancer, so that’s one other place that you can go.

Roz Kleban: You know, Jamie, I was going to ask that when I finished, what does Breastcancer.org have to offer, because I know that the organization has so much to offer. But thank you for saying that because we need as much as we possibly can, and I know that if Breastcancer.org is doing it, it’s being done responsibly.

Jamie DePolo: Oh, thank you. Yes, and we have had several good comments from the people on those boards, so I know that they are finding it helpful. And this is another thing that you mentioned earlier, too. When somebody who has metastatic disease, if you’re meeting new people, if you’re in the workplace, you know, for you it’s part of your life, it’s part of who you are. How do you recommend kind of broaching that subject as you become friends with new people? If perhaps it’s a new romantic interest? Are there ways to handle that?

Roz Kleban: Well, there’s no one way to handle it, everybody feels very differently about it. I think when it comes to employment, first of all there are laws against discriminating against a person because they have an illness or a disability. However that’s an awfully hard thing to prove so you ought to really understand your organization and see if it’s in your best interest that they know or not, but then it becomes a very personal experience.

I think that I’m always in favor of people being upfront and honest, because there’s a notion that that which we hide are things that we are ashamed of. That’s what we keep secrets about, and there’s certainly no shame in having an illness like that. Having said that, everybody needs to come to their own conclusion, and I think as people become more comfortable with being in this position, they find it easier to share with people in their outside world.

Keeping it a secret very often becomes onerous. You know, “How come he disappears for two hours on Thursday, and how is it that every other Wednesday you’re missing,” and losing hair and not losing hair. Keeping this quiet becomes very burdensome and onerous, but the bottom line is that men and women have to do whatever they’re most comfortable with.

Jamie DePolo: Okay. I’m also curious about your opinions about exercise or volunteering, patient retreats. Do you think those kinds of things are therapeutic for somebody with metastatic disease? And again, that’s kind of going back to the idea if somebody feels isolated or that they want to figure out a way to make a difference, because maybe they’ve been helped by somebody else in their life when they were struggling a bit. Do you recommend those kinds of things?

Roz Kleban: Well, you know, again, as I’m speaking to people it depends upon who you are and what is helpful. Certainly exercise is wonderful. I mean, I think they have all kinds of information that exercise for everybody is helpful, and I think for a person with an illness like this, exercise promotes the feeling of being well and strong and healthy, so that can only be good. As far the retreats go and all of those other modalities, it does promote something of a community which is only good, but you want to measure that with not living your life as THE cancer patient.

So exercise is good, and we have wonderful exercise classes here at Sloan. But a person could also go to a regular gym. You know, you are part of the normal population, but you have a diagnosis. So it’s just how it affects you. Do you want to make all of your vacations cancer retreats? Probably not. However, if in your community you have little opportunity to be with other people, then perhaps the retreat is the thing that would be most helpful. All in all, all of these things are good, but how much and how often you participate is very personal and it needs to be tailor-fit to your situation.

Jamie DePolo: Okay. I’m also curious, too. I know that there’s not really a specific age for metastatic diagnosis, because some young women are diagnosed with metastatic disease and that’s their first diagnosis. Some other older women may have a recurrence that’s metastatic. When you’re setting up your support groups, is there any value to grouping people by age or is there some other sort of common denominator that people find helpful and comforting and builds a sense of community faster or better?

Roz Kleban: Well, I do find in this situation, unlike the early-stage patients, in this situation I find age to be enormously important so that I have two groups of advanced-disease patients. One is the young people, and everybody asks me, “What’s the age range?” It’s such a hard thing to answer. You know, so what I’d like to say is 45 and under, but if I have a 50-year-old woman who has [three] children ages 6, 9, and 11, she’s more appropriate in the young people’s group than in the older people’s group. The issues are very different. When a 65-year-old is diagnosed with metastatic disease, she can continue whatever it is she’s doing. She has most likely already had her children. At about that age she probably already has grandchildren. Whether she’s working or not, she most likely has achieved much in her profession.

The young person, this gets them right at the time when they are doing more in their profession, when they’re looking to rise up and accomplish more. It gets them at the time when they’re just beginning to have a family or beginning to think about having a family. And if they actually do have a family then how does this fit in with raising children at ages 2, 3, 4, and 5, and how to include the children or not include the children? So major milestones of a person’s life are much more affected when it’s, in this case, a young person than an older person. So then I think it’s necessary to keep the two groups separate, because then you can deal with the pertinent issues for each group.

Jamie DePolo: Okay. That makes sense. I’m also curious, too. Many people with illnesses use sites such as Caringbridge, or blogs, or other websites to keep their friends and loved ones up to date. Do you think this works for people with metastatic disease because it seems it would just be ongoing and maybe that’s great, I don’t know? I’m honestly curious if people find that helpful.

Roz Kleban: Well, Caringbridge is a wonderful notion and idea, and I have seen it used very successfully for people who are really at the end stages of life. Yeah, hospitalized, or they’re on home hospice and things are changing, and the family should not be bombarded with 20, 30 phone calls a day and they can pass information off like that. However, for the average woman with metastatic disease, she has a life and what’s important in her life is whether or not she got the promotion or didn’t get the promotion. Is she able to take the time to go on that trip that she wants to go on? That’s the news that she should be spending time talking about.

I think what I would like for people with advanced disease is more time spending on life and living and less time spent on the nitty gritty of the illness. I think that’s one of the good things about the support groups. You spend an hour, hour and a half a week concentrating on this. You go to the doctor, you get your treatment, all the other times should be spent on how you define life, whether that’s going to the movies, playing bridge.

Jamie DePolo: That’s very good advice, and I know you touched on this before on looking for support groups and how to find them. If somebody, say, can’t find a support group, you know, we talked about the online things, but are there other suggestions that you would have for somebody to help find a community? Maybe they live in a very remote, isolated place. Are there other options besides online or is that...?

Roz Kleban: Well, I think the online option is fabulous. We didn’t have that just a few short years ago, although first it came online and then it took a while to get the idea of advanced disease to be a part of the online community. So we have that and we have telephones. I think if I was, and I suggested this, if you’re in a remote community and being treated, speak to the staff of your doctor’s office. I would think that you can’t be the only patient that this doctor has that has metastatic disease. And sort of urge the community, the healthcare community of wherever you are, to try and just to put some people together.

Jamie DePolo: Okay. That’s very good advice. Roz, thank you so much for joining us today. I know we could probably talk for another hour about metastatic disease, and I am hoping that you will come back and join us again because we’ve just sort of touched on the surface of some very broad topics. But we at Breastcancer.org do want to keep metastatic disease in the forefront, and talked about, and raise awareness, and hopefully help our members with metastatic disease cope a little bit better. So Roz Kleban, thank you so much for joining us today on the podcast. Is there anything…?

Roz Kleban: Oh, it was my pleasure, and to that end I would be happy to come back whenever there is time on Breastcancer.org.

Jamie DePolo: Oh, that’s great. Is there anything you’d like to close with? Any last bit of advice?

Roz Kleban: The way to combat the effects of cancer is to live large. That was a conclusion one of my groups came to, to just live large, and however you define that, that’s what you need to do.

Jamie DePolo: That’s perfect, Roz. Thank you so much.

Roz Kleban: It’s been my pleasure. Thank you.