Facing Death: Choosing Quality of Life Over Aggressive Treatment

MS. DIANE REHM

11:06:56
Thanks for joining us. I'm Diane Rehm. Many patients diagnosed with terminal cancer follow a familiar path of surgery, radiation, and chemotherapy. Others pursue alternative remedies outside mainstream medicine. Amy Berman chose neither. She opted for minimal treatment for her incurable cancer, and she looked to the growing field of palliative care to ensure her remaining time on earth would be the best possible. Amy Berman joins me in the studio to tell her story.

MS. DIANE REHM

11:07:36
Also here, Dr. Diane Meier of the Mt. Sinai School of Medicine. I hope you'll join us, 800-433-8850, send us your email to drshow@wamu.org, join us on Facebook or Twitter. Good morning to you.

MS. AMY BERMAN

11:07:59
Good morning.

DR. DIANE MEIER

11:08:00
Good morning.

REHM

11:08:00
So good have you both here. Amy, tell us how you are today.

BERMAN

11:08:08
Today I'm doing very well. You see me, I look the same...

REHM

11:08:12
You look well. You look quite well.

BERMAN

11:08:15
Well, as I say, I don't look any worse than I had before, but I'm feeling well, I'm doing well. I still work, play, enjoy my family. Everything is going very well.

REHM

11:08:25
I'm so glad.

BERMAN

11:08:26
Thank you.

REHM

11:08:27
Take us back to the day you got the call you dreaded. Give us a little of that background.

BERMAN

11:08:36
Well, I had found that I had inflammatory breast cancer, and we wanted to find out whether or not it had spread in my system.

REHM

11:08:46
What is the difference between inflammatory breast cancer and ordinary breast cancer?

BERMAN

11:08:54
Most breast cancers are a lump that gets found when people do a routine monthly check, and in my case, inflammatory breast cancer is kind of a free-floating kind of a cancer that is in the lymphatic system. And when it aggregates, when it builds up, it appears on the skin as a rough reddened patch. It almost looks like the skin of an orange peel, and that's actually the name of the cardinal sign, peau d'orange, orange peel, and it appeared on my breast and I thought that I knew what it was.

BERMAN

11:09:33
Sometimes people misdiagnose it as an infection, but it is a kind of a cancer that spreads very rapidly in the body to other areas, and that's the problem. Most breast cancers, about 87 percent live to five years, people who have breast cancer. But with mine, it's only 40 percent. It's a very aggressive cancer.

REHM

11:09:58
So after you had that diagnosis, what you needed to find out was whether it had spread?

BERMAN

11:10:10
Yes. So I had a scan done, and there was a hot spot on my lower spine. That meant that there was some activity going on in my lower spine, and we had to find out whether it was something really minor and nothing and not related to cancer, or whether it was, in fact, the cancer having moved to a far spot in my body, my lower spine. So they had to remove a piece of bone from the spine and biopsy it. Doing that, I had in the meantime made an appointment with one of these experts outside of my area to see whether or not there were new treatments beyond what currently was in the literature.

BERMAN

11:10:54
You know, there might be other activities going on, and maybe there was something that I should be looking at, because for everything that I could see and read, there were no answers for this particular cancer. My mom and I went together to go visit this specialist, and the night before we were walking in the rain and I got a phone call from my oncologist in New York, and she said, it's Stage IV, it was in my lower spine, and my mother and I just dropped our umbrellas in the rain and started hugging and crying.

REHM

11:11:30
Amy Berman, she's senior program officer with the John A. Hartford Foundation. She was diagnosed with incurable cancer in November 2010. Also here in the studio, Dr. Diane Meier. She's director of the Center to Advance Palliative Care at the Mt. Sinai School of Medicine in New York City. And I gather that in the upcoming issue of the Journal of Health Affairs, you've written really an extraordinary first-person piece about your experience because you then went to a specialist who gave you all kinds of advice.

BERMAN

11:12:27
Yes. Diane, the specialist told me, I want you to do very aggressive chemotherapy, as much as your body can handle, that's what he was going to throw at it. Then mastectomy, followed by radiation, followed by more very aggressive chemotherapy, and I asked him, you know, if the cancer has spread from my breast down to my lower spine, why do you want to remove the breast? It's already spread in my body. His response was, you don't want to look at the cancer, do you? It's a shocking thing to hear.

BERMAN

11:13:04
My mother and I, she was with me at the appointment, and we both looked at each other because he had no regard for what I was trying to do. And I had spoken to the oncologist back in New York. I wanted to do everything possible to maintain the quality of my life, to maintain my function, to feel good for as long as possible. Since there was not going to be a cure, maybe one day there will be, but since there wasn't a cure available, I wanted to fight for feeling well, being able to work and enjoy life like I am now, and not to immediately go to these very difficult treatments that have a lot of side effects that would potentially make it so I couldn't work or enjoy my life and still end up with no cure at the end of the day.

REHM

11:13:57
And of course, there are people listening to the program who might say, well, but with all of these treatments, perhaps you could have extended your life beyond the recognized 18 months even though they said it was not curable. In other words, take the chance for more life rather than live what you have with a more comfortable life.

BERMAN

11:14:36
I think for the people who aren't well informed and, you know, most people who are diagnosed are not going to know this, but in fact, if you attend to pain and function, and if you attend to palliative care, whether you're going through aggressive treatment, or whether you're not going through aggressive treatment, you actually can live longer, and there was a good piece in the New England Journal of Medicine about that. I think Diane Meier might say more about that.

REHM

11:15:04
And Dr. Meier, that's why I'd like to turn to you to get you define for us the difference between palliative care and what some might regard as hospice care.

MEIER

11:15:21
Well, it's an important question, and one that there is a great deal of confusion about, because hospice is a form of palliative care, but it is limited to care of the dying, to people who are predictably dying, and the radio audience can't see Amy, but you and I can, and this woman is far from dying.

REHM

11:15:40
Exactly.

MEIER

11:15:40
She is gorgeous, she's healthy...

REHM

11:15:41
She looks fabulous.

MEIER

11:15:42
...hale, working full time. You would never know she was sick if she didn't tell us, so she's obviously not appropriate for hospice because she's very far from dying. Yet, she's quite appropriate for palliative care because her goals are to maintain and maximize her quality of life, live as long as she can as well as she can. So Amy exemplifies a sort of new generation of cancer patients that are doing both. That is, Amy is pursing both treatment for her cancer, not very toxic treatment, but treatment nonetheless, at the same time as she is receiving palliative care focused specifically on making sure she feels well, that any symptoms she might have are well controlled, that there are no issues with depression or anxiety, that she can live fully in the time that she has remaining, and modern cancer centers are now integrating palliative care and delivering it at the very same time as cancer treatment.

REHM

11:16:43
You used the word toxic. Isn't most cancer treatment toxic?

MEIER

11:16:55
Many cancer treatments are toxic, although I will say that oncologists have gained a great deal of skill in managing side effects and toxicities, at least for some cancers and with some treatments, and the treatments that Amy is current receiving are very well tolerated, and they are effective at controlling the cancer and delaying its spread.

REHM

11:17:17
As opposed to mastectomy and radiation and chemotherapy, which you chose not to undergo.

BERMAN

11:17:29
Right. I did choose not to undergo them. If I had done that, the side effects would be so difficult to deal with, that I felt like I would not have as much time with my family. I wouldn't be able to enjoy the time that I had as much, and it wouldn't give me any different benefit. I'm actually getting a great benefit out of the version of treatment that I'm on. So far everything is going very, very well, and I feel good, and I'm able to do all the things that I want to do. So for me, it's been a good choice.

REHM

11:18:01
But here we are in April of 2012. You were given this diagnosis in what month of 2010?

BERMAN

11:18:14
Right. November 2010, 18 months ago.

REHM

11:18:17
Eighteen months ago, and here you are, Amy. I'm so glad. We're going to take a short break here and when we come back, we'll talk about the kind of therapy Amy is undergoing, and answer your questions. Stay with us.

REHM

11:20:04
And for those of you who just joined us, we're talking in this hour about palliative care, a new and developing field that offers those who have been diagnosed with incurable ailments help which does not involve life threatening treatments because that old saying, Dr. Meier, if the cancer treatment doesn't kill you it will cure you. But there's as much likelihood that it will kill you. I shouldn't overstate that because an awful lot of people do undergo radiation, chemotherapy and are, for the most part, cured.

REHM

11:21:04
One of the people here in the studio, Amy Berman, was diagnosed 18 months ago with stage IV inflammatory breast cancer which had moved to her spine. She chose not to follow a specialist's recommendation of mastectomy, radiation, chemotherapy, but instead turned to palliative therapy. I do want to give you a very important website. It's one that patients can use to learn the palliative care physicians, resources in their own areas of the country. It's simply getpalliativecare, all one word, dot org. I'll give that to you again at the end of the program, getpalliativecare.org. Tell me, Amy, your treatment regimen.

BERMAN

11:22:19
So I take a little yellow pill every night before I go to bed. It's called Famara and that pill gets rid of the hormone production in my body, estrogen and progesterone -- the estrogen production because it's those hormones that actually make my cancer grow. There are different kinds of cancers, but mine is a hormone-sensitive kind of a cancer.

BERMAN

11:22:45
Also, because I have the metastasis to the bone, it's spread to the bone, I take an infusion once a month called Zometa, which is a medication that helps strengthen the bones, you know, helps prevent them from fracturing, because that's one of the things that happens when you have bone cancer. The bone essentially gets eaten away and can very easily break.

REHM

11:23:12
Are you in any pain?

BERMAN

11:23:15
I get sore in my lower back where the bone cancer is, but I usually can avoid getting sore if I try not to carry heavy things, try not to stand up for too long in one place. I also occasionally get twinges of pain in my right breast, but again, these are minor. I also occasionally get a feeling like a needle is being put into the front of my scalp. And, you know, these are side effects from the medication. I consider these to be signs that things are working as opposed to signs of the disease progressing.

REHM

11:23:54
And, Dr. Meier, considering the fact that Amy has undergone this palliative therapy, is there a possibility that she could extensively outlive the prediction of normal, if one can call it that, stage IV cancer?

MEIER

11:24:20
There's certainly a possibility. Every patient is different and there's enormous variation in how cancers behave. So while someone with the same diagnosis might not have lasted the 18 months that Amy already has, she's clearly doing so well that it wouldn't surprise me in the slightest if she outlives all the predictions. One of the problems is that we actually don't have much data on what happens to people like Amy who don't do business as usual, don't accept very toxic and aggressive treatments because almost all patients do because that's what's recommended to them.

MEIER

11:25:00
Amy is exceptional in that, first of all, she's a health professional so she was able to review the literature and make some decisions for herself. And...

REHM

11:25:08
Based on knowledge.

MEIER

11:25:10
...based on data, based on evidence that I think allowed her to make a rational decision instead of a fear-based decision, which is often what drives decision making when people receive a diagnosis of cancer. It's terrifying and that sometimes gets in the way of being able to balance the evidence and make a scientific decision for yourself.

REHM

11:25:34
Amy, were you terrified?

BERMAN

11:25:39
I was. I was very, very unsettled by this whole thing. I cried. My mother and I cried. But, you know, at the end of the day, I accepted it pretty quickly. I mean, it was clear. I could see the cancer and I'm very well supported by my friends, by my family, by my work. These are blessings and all of these things, including having a wonderful health care team, helped me, I think, get on with my life and living it. And, you know, if you have limited time left, in my eyes, you have to make the most of it. I didn't want to waste it going through mourning.

REHM

11:26:23
And by wasting it, what you mean is that you felt you would be debilitated by the treatment, the extreme treatment, the radiation, the chemotherapy, the mastectomy, whereas this palliative care treatment is designed to keep you strong.

BERMAN

11:26:50
It is and I've been doing very well on it. As a matter of fact, I should also say that my oncologist tests tumor markers. If these tumor markers appear, that means that the cancer is spreading more rapidly. And the tumor markers are still within normal limits so that's a very good sign. In other words, I'm getting the kind of response in my body on a cellular level that I would really want to be getting.

REHM

11:27:22
And of course, here we can turn to the question of the relationship between the mind and the body and what it is that works within our hearts and souls that may in fact help our bodies.

MEIER

11:27:42
Actually, there's a great deal of evidence, Diane, you're absolutely right, of people who are depressed, who are debilitated, who are physically miserable and can't get out of bed 'cause they feel so awful, actually die sooner. And that probably is some sort of immunal modulation that occurs between depression, other sorts of distress and your physical wellbeing. We know, in every study that's looked at it, for example, that if you are depressed compared to a person with the same disease who is not depressed, the depressed person will die much sooner than the non-depressed person.

REHM

11:28:25
But, Amy, can you honestly say that at least initially you weren't depressed?

BERMAN

11:28:35
I don't know whether I would call it depressed. I was grieving. I just didn't know how long I would be around. I didn't know whether I should make plans. So I think, in the beginning, I was just grieving, but there was a certain point and it was pretty soon, maybe a couple of days or weeks into it that I just decided, you know what? I have to make the most of whatever time I have left and that's what I'm doing.

REHM

11:29:06
And what other professionals did you talk to before making the decision to move toward palliative care as opposed to what had been recommended to you?

BERMAN

11:29:24
Just as a clarification, my oncologist in New York had recommended that if I was stage IV that she would've done a similar course as the specialist out of state had recommended. But if it were stage IV, she said, you may want to consider holding onto your quality of life. So before we even knew whether it had spread, she prepared me for having that conversation whether or not -- you know, what were the goals of care? And a lot of people don't talk about what the person's goals are in all of this. And my goal really has always been to maintain the quality of my life.

REHM

11:30:10
And surely, Dr. Meier, if someone were to come to you, that would be the bottom line issue, what is the quality of life you would like to have.

MEIER

11:30:26
And even in addition to the quality of life, what are your goals? So I do have patients who say to me, I am willing to go through anything. I don't care how much suffering it is. If it will prolong my life by a week or a month or two months I want that. I would say that's a minority of patients who say that. But nonetheless, if that is their goal then that is what we will do. It's about finding out who is this person in front of you? What kind of person are they? What matters to them? What do they value? And what are they hoping that we can accomplish -- we, the health care system, can accomplish to help them achieve that goal?

MEIER

11:31:04
We start and end with the patient as a person and then try to work with them to achieve what matters to them. And it's different from patient to patient and Amy is obviously an exceptional patient in her clarity, in her ability to understand what the science shows and in her very consistent decision to have the best possible quality of life for as long as she can.

REHM

11:31:30
Do you see a greater number of people moving toward palliative care?

MEIER

11:31:37
I do because there's been an increasing amount of media coverage, just like what you're doing here, that informs the public that people who get palliative care actually live longer than people who don't get palliative care. No surprise if your quality of life is good and you actually have a reason to live and a desire to continue living 'cause you feel well. It shouldn't surprise us that people live longer, but there's an increasing body of evidence that says people who get both disease treatment plus palliative care actually live longer than people who only get the disease treatment.

REHM

11:32:11
But if the disease treatment is that extensive type of treatment, would the same hold true?

MEIER

11:32:22
The randomized control trials, that is the really rigorous science that's looked at this, has found that people who get palliative care while receiving aggressive extensive treatment do much better. That is, they tolerate the treatment better, they are less depressed, their families feel more in control, they have fewer symptoms and they just are able to avoid hospitals and emergency rooms.

REHM

11:32:45
But can you differentiate the Amys of the world who've chosen not to have any aggressive treatment, but instead to have palliative care?

MEIER

11:32:59
You know, we don't have studies that actually do head-to-head comparisons of people like Amy who get palliative care plus moderate disease, modifying treatment, versus people who get palliative care plus very aggressive treatment.

REHM

11:33:13
I hope you will have that before long.

MEIER

11:33:16
Yeah.

REHM

11:33:17
That's an important study.

MEIER

11:33:18
It is an important study and would really help the rest of us.

REHM

11:33:23
And you're listening to "The Diane Rehm Show." Let's open the phones now, 800-433-8850. First to Orlando, Fla. Good morning, Mark, you're on the air.

MARK

11:33:40
Hi, Diane. I just wanted to call and say thank you, Amy, for bringing this up. My mother died of cancer a little over ten years ago...

REHM

11:33:48
Oh, I'm sorry.

MARK

11:33:49
...and it's an all too familiar problem, it seems, for a lot of people. But by the time she was diagnosed, it had progressed very badly and we sort of did the normal routine, the chemotherapy and the radiation. And after a little over a year, it had almost killed her. There was actually an incident she had to be taken to an ER after one of her treatments and they decided to stop.

MARK

11:34:15
And that's when our doctor told us about palliative care for the first time. And at that point, she died several months later and she was bedridden. She was in a coma briefly because of the treatment and it was very difficult watching that. And I wish more people knew about it. I just wanted to say thank you for making this a topic of discussion so people can hopefully get better care in the future.

REHM

11:34:42
Thanks for calling, Mark. Why is this coming to the fore now, Dr. Meier, in your view?

MEIER

11:34:51
I think it's coming to the fore now, the issue of palliative care, because medicine has become increasingly sub-specialized. And patients bounce around from specialist to specialist sort of like a pinball in a pinball machine. And those specialists are doing what they were trained to do, which is focusing on the specific disease that they're expert in

MEIER

11:35:11
But what's got lost is somebody who takes care of the whole patient and really tries to find out who is this person, what matters to them. What are the things that they're hoping for? What are the things they're afraid of? And how can we mobilize the resources of the health care system to achieve their goals as opposed to our goals? And I think people are recognizing that they need that added layer of support that palliative care provides.

REHM

11:35:36
To St. Louis, Mo. Good morning, Nick.

NICK

11:35:41
Good morning. How you doing, ma'am?

REHM

11:35:42
Fine, thank you.

NICK

11:35:44
Yeah, great show. My mom, she's survived two bouts of breast cancer and, you know, the physician who treated her treated her from a holistic approach, which is kind of rare given where she lives. You know, my father, unfortunately, never made it, but I ended up in drug development on an accident. And I'm curious, what role does regulatory agencies have in the USFDA in strict clinical trial processes? And then often it's left up to large registration trials where physicians are willing to look at other ways to treat patients. You know, it's a long way from the bench to the physician's office.

NICK

11:36:21
I'm curious what role physicians are playing in interacting with the regulatory agencies to say, you know what? Let's put a component in this clinical trial that allows us to gage the effective supportive care.

REHM

11:36:33
Indeed, Dr. Meier.

MEIER

11:36:34
I couldn't agree more with the caller that it really ought to be a standard of care in clinical trials that there all patients should receive palliative care at the same time, regardless of what arm of the trial they're in because we have enough data to show that they will do better if they get that in addition to everything else. And that is not currently the case. And I think both the NIH and other research funding agencies, as well as FDA, really ought to demand standard of care as a component of all of these trials.

REHM

11:37:10
But, you know, the word rationing is thrown around so much that you might get this reaction of, oh well, there they go again taking away my options. We'll talk further about that when we come back, take your calls. Stay with us.

REHM

11:40:02
Welcome back, one issue we've been talking about during the break is what you just said, Amy, what you don't know, you don't know. And if, in the course of becoming a patient, you turn to your doctor and the doctor lays out all these options of chemotherapy, mastectomy, if you don't know about something like that palliative care and your doctor doesn't tell you, you're up a creek. So you did your own research, you did your own self examination of your soul, what you wanted and you said, this is what I want. How many patients are likely to ask for that?

MEIER

11:41:02
Well, increasing numbers, I must say, because there's been so much more press coverage of palliative care as an added layer of support. Not you're a consolation prize, not what you get when there's nothing more that we can do. But what you get at the same time as appropriate disease modifying treatment. And as patients and families, as the public increasingly demands this added layer of support from their doctors, from their cancer centers, from their heart failure programs and from hospitals, health care professionals will respond.

REHM

11:41:35
But suppose a doctor says, well, you can always choose palliative care. Is the patient immediately going to think he's rationing me, I'm not going to get the care I need. They're trying to take my life in place of money?

MEIER

11:41:59
Well, I think that's an understandable fear. But I think the whole point that I'm trying to make here is that it's not either/or, it's both/and, that patients should demand palliative care as the floor, the minimum that everyone should have and then, whatever appropriate that is likely to be effective treatment for their disease that the doctor offers them.

REHM

11:42:22
Amy, here's a question for you from Pamela in Syracuse, N.Y. She's wondering "In what other ways you've modified your life style? Do you eat differently? Do you spend more time on hobbies or with loved ones? Is there an exercise regime and how do you define your best quality of life?"

BERMAN

11:42:54
Pamela, thank you for that question. The one thing, I guess, the most important thing that I've done differently since the diagnosis is to make sure to get enough rest. Getting enough sleep at night, resting if I feel tired during the course of the day, those are things that are very important and those are also things that are likely to make a difference in terms of my longevity. There's a lot of research to show that getting enough sleep and enough rest is actually very helpful to living a longer, better life with cancer.

REHM

11:43:25
Of course, yes. And even without cancer.

BERMAN

11:43:29
Even without cancer. I love taking long walks, I love swimming and biking and I'm doing the same things that I did before. I still, you know, enjoy my fruits and vegetables, the same as I did before. But I think, you know, tuning into your body and being responsive and resting and taking care of yourself and doing things that you do enjoy, I think those are things that make for a good quality of life any day of the week. And how do I define quality of life? I define it as being able to do the things that I enjoy doing and being with the people that I love.

REHM

11:44:04
And have you had any pushback from any members of your family, from doctors, from anyone who feels you're absolutely throwing your life away?

BERMAN

11:44:23
I haven't given up. I'm doing the complete opposite. I'm doing things that I think are going to support the longest and best life possible for me. And so far, it's actually bearing out to be the right choice.

REHM

11:44:35
All right. To Suffolk County, N.Y. Good morning, Mike, you're on the air. Mike, are you there?

MIKE

11:44:44
Yes, I am. Good morning, thanks for taking my call.

REHM

11:44:47
Surely.

MIKE

11:44:48
I just wanted to say, my heart goes out to your guest. I too have cancer and I was diagnosed five years ago with small cell superior vena cava syndrome, stage three lung cancer. I was only given three weeks. And my doctors at Stony Brook Hospital said to me, "we're going to try to give you the hardest care that we can possibly do and see if you respond. And they did. Now, I've had a choice five times in five years to say no, I don't want any more chemo. I don't want to get beat up anymore. But I'm still here. But I know it's going to come to a point where I'm going to say, I just can't do it anymore because the side effects have taken its toll on me in many, many ways.

MIKE

11:45:48
So what I do is, I believe that I will not die a little bit each day, so I will continue with my life. It may be a little bit slower. I may have to eliminate some things. But I'm continuing to fight and I think the most important thing that a cancer patient or cancer family should be informed, look for as much information as possible. There are support groups out there that will give you that care, will tell you what they're going through. Even through these support groups, you may hear of a procedure that some doctor is trying and I've made myself available for quite a few little tests and some have worked and some have not worked.

REHM

11:46:40
Mike, I appreciate your call so much. And thank you for sharing your story with us. I hope that your health continues to strengthen and improve as you give yourself to this kind of medical research. He really is feeling the effects and that can't be easy. And I really hope that all goes well. A number of people have called and asked whether insurance companies are likely to cover palliative care. Dr. Meier.

MEIER

11:47:29
Yeah, the answer to that question is, yes, insurance companies do pay for palliative care just as if you went to see your doctor for high blood pressure, insurance companies would pay your doctor for managing your high blood pressure. They will pay your palliative care doctor or nurse practitioner for providing palliative care to you. It's the same as any other kind of medical service.

REHM

11:47:50
I'm glad to hear that. I'm sure a great many of our listeners would've been wondering about that. Let's go to Naples, Fla. Good morning, Peima (sp?) , you're on the air.

PEIMA

11:48:05
Good morning, it's so good to speak with you all. My story is that I was diagnosed with incurable recurrent cancer and assigned hospice. And I chose not to go to hospice and instead flew to Tibet, Nepal to partake in an ancient regimen of herbs, something well outside of the prowess of the medical community here in the states. It is non-evasive and very spiritual and sort of embracing it all. And after a year, I feel so much better. And the mass is so much smaller, it's a dramatic return to health.

PEIMA

11:48:55
The doctors I've come back to see here are baffled by this and they do not really want to participate in this. I'm finding that they cannot depart from their classical training. And I don't know if it's a legality that prevents them from studying me or a physiology. And I'm wondering if doctors' philosophies are changing to include not just a classic palliative care, but these other types of cures that are not addressed in the states.

REHM

11:49:37
I certainly hope so. Dr. Meier.

MEIER

11:49:39
Yes, it's a wonderful experience you've told us about. And I really appreciate it. But I do want to say that palliative care absolutely embraces a whole range of what our labeled alternative or complimentary therapy.

REHM

11:49:54
Such as?

MEIER

11:49:55
So, for example, our palliative care team has licensed massage therapists. Our palliative care team has yoga therapists. Our palliative care team does guided visualization and meditation and breathing techniques. And we also have our own Chaplin who works with patients and families on issues of meaning and generatively and legacy. And, frankly, I think those members of the team are as important if not more important than the doctors, nurses and social workers.

REHM

11:50:29
Interesting. Amy, are you a person of religious faith?

BERMAN

11:50:35
I am.

REHM

11:50:37
And does that faith strengthen you?

BERMAN

11:50:40
It does. And even more than that, I think it's also the connection to family and friends. Normally, I don't think people have as much advanced notice about what's going on with them. And I can honestly say that through this process, the thoughts and wishes of the people around me has been just enormously helpful and supportive and really gives me a lot of wind in my wings.

REHM

11:51:09
That's marvelous. And to St. Louis, Mo. Good morning, Pat.

PAT

11:51:16
Good morning, Diane Rehm. I love you, I love your show.

REHM

11:51:19
Thank you.

PAT

11:51:21
I was really apprehensive about listening today though because I too was diagnosed with inflammatory breast cancer in March of 2010. I have gone through all the treatment. I just want to tell your guest that I love you. I am your sister, though you may never meet me. And I want to encourage you to keep the fight because that's what we all do. We just fight from day to day.

PAT

11:51:44
And you think about, you know, when I was going through -- I just thought about, you know, what's today going to bring? But today, now that I look back over those two years, I just take one day at a time. And the faith is strong. And I'm coming -- It was a CD, as a matter of fact. It's called "Starting From Scratch, A Poet's Journey." It's talking about encouraging people and making people aware of what inflammatory breast cancer is.

REHM

11:52:07
I'm glad you called, Pat. Have you met other individuals like yourself who've been diagnosed with terminal cancer and given a certain amount of time to live, but have chosen, as you have, palliative care?

BERMAN

11:52:30
I have met a number of other people who have inflammatory breast cancer. And for anybody who's experiencing cancer, I feel that we're all kindred spirits. So to the previous caller, I just want to send my love to her. Yes, I have met other people who are choosing this kind of course. I typically meet people who are choosing the course that was suggested by that out of state specialist.

BERMAN

11:52:57
But I think, increasingly people are being more fully informed or are asking deeper questions and are really being able to be a bit more clear about what it is that they want to get out of treatment. And remember, if there's no cure, the question is, for me, you know, do I want to lose quality of life now and pretty much end up at the same place or to hold onto quality of life now and to end up in that same place?

REHM

11:53:25
And you're listening to "The Diane Rehm Show." To Cincinnati, Ohio. Good morning, Val.

VAL

11:53:34
Good morning. I am a survivor. I had a bad breast cancer at age 32. I had no chemo or radiation. I did have a mastectomy. I am now 69. I guess they didn't know a lot about the kind of cancer, as much at the time. It seems that they weren't doing all the tests here. And I did ask to be staged before they did the mastectomy.

VAL

11:54:07
And that was, I guess, I was one of the first in town to get that because I said I had great breasts and if I was going to die anyway, if it was all over my body, then I'd keep them. But and I did have a double procedure, the first person in the hospital to have a biopsy one day and wait to have the mastectomy. And I had a modified radical which was very rare. My surgeon happened to do that instead of the old Halsted radical.

REHM

11:54:44
Well, Val, what I can say is congratulations to you. I'm absolutely thrilled that here you are, 69 years old, sounding vital, sounding very strong. Congratulations to you. Amy, as you think about the future, how do you define your goals now as opposed to how you defined them in 2010?

BERMAN

11:55:18
My goals are really the same, Diane. I just want to be here and be able to live as full a life for as long as possible. I also want to make sure that my team is very aware as things progress over the course of illness about what my choices will be. I want to make sure that they're supporting me the way that I want to be supported. So it's an ongoing conversation. And I should say, you know, you can change your mind at anytime. You can always rethink the decisions that you make. I have felt, over the course of 18 months, one way and that these are the decisions that I'm making. But as far as I'm concerned, I'm supportive of everybody making their own decision. There are no wrong decisions. There are only informed decisions.

REHM

11:56:04
Do you feel different today physically from the way you felt when you first got the diagnosis?

BERMAN

11:56:17
I can get a little bit more tired at times. My back can get a little bit more sore at times. So things have changed a little bit. But in general, I have great quality of life. I live my life everyday without really thinking about what it is that I’m experiencing because I have that much quality of life. I really enjoy.

REHM

11:56:42
And as someone has written to us, "Life is terminal. None of us gets out of here alive. We're on a continuum. In the past we had a deep understanding of this but then absolute faith in the miracles of modern medicine falsely allowed us to forget these basic truths. There is a time to die. How we choose to die is our choice." Amy Berman, she's with the John A Hartford Foundation and her article appears in the Health Affairs Journal which we have linked to our own website. Also, getpalliativecare.org. Thank you both so much...

BERMAN

11:57:41
Thank you very much.

REHM

11:57:41
...for being here.

MEIER

11:57:42
Thank you.

REHM

11:57:43
Thanks for listening, I'm Diane Rehm.
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