Events

COMPREHENSIVE CANCER CARE 2001: INTEGRATING COMPLEMENTARY & ALTERNATIVE THERAPIES

PLENARY PANEL DISCUSSION - WHAT CANCER PATIENTS WANT AND NEED

The following are excerpts from a transcript that is available here © 2001 Comprehensive Cancer Care Conference.

Want to access audio files of this event? Click here .

SPEAKERS: D.G. Wilson Davis; William Fair, M.D.; Helen Moss, D.G.; Bill Manahan, M.D.

MODERATOR: Penny George, Psy.D., L.P.

Arlington, Virginia
Saturday, October 20, 2001

P R O C E E D I N G S

DR. GEORGE: Welcome to this panel on What Cancer Patients Want And Need. If you have come to this rather than staying home or doing something else, perhaps, like me, it's because you are aware that this about healing, and that we need that now more than ever. And this panel is perhaps the heart and soul of this conference and the place where all of what we've been discussing comes together.

My name is Penny George, and I am president of the George Family Foundation in Minneapolis. Our primary passion is furthering integrative medicine, and we are doing this in two ways. One of them is to take the role of convener, both in terms of bringing together integrative medicine leaders and philanthropists who fund in this area, and also bringing the philanthropists themselves together so that we can better collaborate and find synergies in the work that we do together.

The second way we're trying to do that, to further integrative medicine, is by funding paradigm-shifting programs that we find that have the potential to change the consciousness of medicine around the country. We are very committed to the work of the Center for Mind-Body Medicine. And in particular, we've supported the curriculum development for the cancer guides program that was offered for the first time this year in July in Aspen and received extremely high marks. And I would encourage you, if you can, to go to the meeting on cancer guides so that you can find out more about it. And I implore you to make sure that everyone that you have contact with, that is exposed to working with cancer patients, to come to that cancer conference. It is just a phenomenal training program.

There was a time in my life when I wouldn't have imagined that I'd be attending a cancer conference, let along being involved in philanthropy, and that was before my own diagnosis with breast cancer 5-1/2 years ago. It was putting together my own healing program, which included conventional medicine, but really wasn't as focused on that as it was on all the other dimensions of my healing, that allowed me to move from a place of fear and devastation at the time of diagnosis, to a place where, more days than not, I have more joy and more freedom than I had before.

And it's for that reason that I think that this should be an opportunity that all cancer patients have, to receive the gift of the potential of transformation that's embedded in serious illness. But it doesn't happen just through conventional medicine as it stands now.

One of the surprises for me was the importance -- and I see this now in looking back -- of telling my own story. And interestingly, I never had the chance to tell it to any of the medical people who were involved in my care. But I'm on the board of a hospital in Minneapolis, and so I spoke to the board about my healing journey, and I also spoke to a task force at the University of Minnesota Medical School that was considering whether the Medical School ought to be teaching their students about complementary and alternative medicine. That's, in fact, where I met Bill Manahan, who was on that panel. But the process of reflecting on what I had been through allowed me to make meaning out if it.

And, interestingly, as I told the story three or four times, every time the story was different, until, at the end, it was clear to me that I could say that I really felt healed and that I had moved on.

And that's why, if integrative medicine does take seriously that the relationship with caregivers -- not necessarily just the physician, but with caregivers is a central part of the healing process, we simply have to make time to allow the patient story to be heard. I really don't believe that you can help someone deeply heal if you can't find time to listen to them.

I want to express my personal appreciation for the panelists who are here today offering their stories. To me, they're everyday heroes. They're the people who are living lives of meaning and purpose, while facing the challenges that cancer represents. Each of the panelists has been asked to speak for 7 to 10 minutes, and they'll speak one after another. And then there will be time for questions after that, questions and audience responses.

I'm going to introduce the panelists now.

[other panelists introduced]

And our cleanup batter at the end is Helen Moss. A pioneer and change agent for most of her life, Helen first raised four children on her own. Then she went to break the glass ceiling by becoming first a financial advisor and then a vice president at Merrill Lynch, her employer of 26 years. She founded the Helen Moss Breast Cancer Research Center, whose mission is to educate mainstream physicians about CAM. In fact, she's brought, I think, four physicians from Cleveland with her to this conference. Helen has been a champion of women's rights and a civic leader in Ohio -- is on the Ohio Arts Council. She is here with husband and her mother to share with us her story. Helen was diagnosed in July of 2000 with metastatic breast cancer and has had a whole new world open to her that she was totally unaware of before.

So I invite you to welcome our panelists and thank you for being with us. (Applause)

[other panelists speak]

MS. MOSS: I'm Helen Moss, and I do want to thank Dr. Gordon for having me. And I also want to thank my husband, Richard Fleischman (phonetic), and my mother, Frances Smith, for accompanying me to hear my speech. The head of Case Western Reserve Medical School also wished me well and said, Helen, I know you'll do well. I'm a little bit nervous, since I lost my glasses here.

The topic is "What Cancer Patients Want and Need." I think I'm going to talk about what I wanted and what I didn't get, and I think you have to fill in what I needed and what I should have gotten. So you can kind of work with me on this talk.

To give you a history of myself, I am a fortunate woman. I mean, God gave me a brain and drive and wonderful parents, and I raised children alone. I did so much with my life. And about a year ago last June --

(Tape interruption)

MS. MOSS: I had financial security. I had jobs. I had friends. And I can tell you what else I was so proud of: That I had tremendous health and that I had two grandmothers and two grandfathers who died in their nineties who had smallpox, diphtheria. I had four aunts and a mother who were between the ages of 80 and 90 in perfect health and no cancer. And I never read a thing about any kind of cancer, because I was busy doing other things, and I was immune to this.

So that when I went in to have my mammogram and they said, you've got a problem, we find two lumps here, I thought, no, you know, 85 percent of this at this stage is benign. Well, this is the one good thing that happened. The Cleveland Clinic did have a breast cancer center where you do your mammogram, you do your -- oh, and they can tell if a tumor is liquid or solid. And also if you need it, the biopsy within 3 hours. Within 3 hours. They didn't tell me I had cancer, but they said, well, your chances -- I said, "What are my chances now that you've done this?"

He said, "Well, at this point, 40 percent benign."

Well, I knew. I was shocked. I almost wrecked my car going to work. I tried to call everybody. And by the following Tuesday, I had the bad news that I had breast cancer, and I was going to meet with a doctor. I was so deflated. I mean, here I am looking the same, but inside, I melted. I was nothing. I had no strength. And I mean, I just saw death.

And my family came around me, I will say this. Three of my four children who live nearby came. Their husbands and wives, my husband, my mother. And they sat down with me, and they said, "Here's what we're going to do."

Now, this is not what the medical profession did. This is what they did. My son immediately bought a book called "Susan Love's Breast Book," which I used as my encyclopedia. And there are lot of male doctors who don't like that, because she doesn't believe in Premarin. Well, forget about that; it's a great book. They said, "We will be with you at all times. We will be a part of the decisionmaking." You see how I'm doing everything all right? And of course, if I do everything all right in my life, things turn out, right? Nothing bad happens.

So we made our first trip to the doctor's office, and I walked in. Now, I had -- even though I was nothing inside -- I was, you know, mush -- I put on my uniform, which is a starched linen suit and a hat to match and my professional face and my husband. I put my jewelry on, which was all supposed to keep me together.

And the doctor immediately said, "Oh, I can just tell that you're just one of those kind I like to deal with. You know, you're rational. You're not emotional. And you're doing so well." And he said, "I can tell by looking at you that you have a 95 percent of survival. And this isn't -- you know, I don't want you to worry at all. By the way, I'm going to recommend a mastectomy." Well, I don't know if you know about the Cleveland Clinic. They were the founders of the ones that did lumpectomies.

Well, I knew darn right, I didn't have a 95 percent chance or survival with that kind of thing. A tear rolled down my face, my perfectly groomed self. A tear came down. And I thought, "This doctor is patronizing me and he's not telling me the truth." And he was not telling me the truth.

My husband leaves and says, "Oh, isn't this great."

The doctor did say one thing before we left. He said, "By the way, this is a very serious disease, and I want you to take it seriously." So there was my first disconnect in the medical profession.

Well, let's talk about the surgery, all right? I was in the room, waiting to be operated on. Now, I will tell you how I felt, this logical person that's always put together: I felt as if I was going to lose part of my body and it was going to hacked off. Now, I am not attached to my breast. I have no sexual identity with my breast. But it is a part of me, and it betrayed me. And around my bed were all my family, and they were crying, and I loved it. I mean, that made me feel so good that somebody loved me.

But I was waiting -- before I cracked up and crashed, before this surgery, I was waiting for the Ativan or something like that to calm you down before they bring you into the operating room. So every surgery I've ever had, and I've had lots of little surgeries, they always give you this tranquilizer that's supposedly so good before surgery. So I was starting to think about this. And I felt, I mean, I hate to say this, but I felt as if I was going to butchered. I mean, this awful image came to me that I was going to -- out to be butchered, but I was waiting for the Ativan so I would get rid of this image.

So they wheeled me out into the hallway, and I said, "Well, where's my relaxant? Where's this thing to help me face this as I go into this surgery?"

"Oh, we're sorry. We're using a different kind of anesthesia, and we won't give you any kind of a relaxant." And outside that operating room, I sobbed. And two other women were sobbing too. Three women were waiting outside that operating room, waiting to have their breasts cuts off, thinking they may die. And they didn't think that it was very important to relieve that psychological fear or pain or lessen it at that point. And when I got in there, I said, "Just knock me out."

All right, that was a disconnect again, because they didn't understand. And I don't care how strong you are, you're not very strong at that time. And I just love this doctor that spoke earlier, because he really was right on.

Okay, I had my surgery, and I was very calm after the surgery. Now, the next step is waiting for the lymph node situation, because that's really what you want to know. Well, 3 days go by and I never saw my surgeon. Instead, he sent a little guy in in an Armani suit. His little assistant must have been about 30 years old, and he was so impressed with being a doctor. Now, I'm going to tell you it was very offensive to me, because remember what this previous speaker stated, that you want your doctor to be concerned? And the Armani suit represented to me that he was more concerned with his appearance with the nurses and everybody else, and he was so impressed with himself being a doctor, that I didn't matter. And every day, he'd come in and say, "Well, how are you today?"

I said, "Well, where's my surgeon?"

"Oh, well, you know, Dr. So and So has been practicing many, many, many years, and he just thinks that this is not a serious surgery, and therefore, he doesn't see his patients anymore." That's another disconnect, all right?

So I called my daughter-in-law, who's an attorney, on the third day. They wanted me to stay. (Laughter) Well, I mean, I wasn't going to sue them, but I was afraid that the fourth day, I wanted to know what my test results were, and I needed somebody very strong with me. And she's very much like me, and my son is a lucky man. So she came in. She has a law practice; she canceled her appointments. She came in at 7 a.m. At 8 a.m., the Armani doctor came in. And I said, "All right, we want to know what the test results are. Do you have them back?"

"No, we don't have them all back."

"Well, you don't?"

He says, "No, I want you to make an appointment 3 days hence to go see the doctor, because we don't like to give the test results unless we have them all back."

I said, "Well, do you have the lymph node back?"

"Yes."

"What is it?"

He said, "15 out of 16 positive." My blood pressure -- they've taken my blood pressure, and the nurse's aid screamed because, oh my God, the blood pressure machine is broken, it's 200. My blood pressure shot up. And my daughter-in-law immediately went out, demanded that the surgeon come in, the oncologist come in, and pull the team together.

The oncologist came in, and I was pretty upset. And she said, "I don't understand why you're upset."

The surgeon came in and he said, "Yes, when I saw those reports this morning, I said wow." You know, he did not come in. So there was another disconnect. Remember, I said that I was to be worked as a team. And I also wanted to know everything the doctors knew at the time the doctors knew it. And that was another rule broken. And this is at a first-class hospital.

Well, that's when I founded the foundation. And I said, no other woman has to go through this. I thought of women who were older. I thought of women who were alone. I thought of women who had young children. And I was lucky. I considered myself a lucky woman. And it's that point, I said, if I can just help one other woman. I mean, I didn't know how much, because I was -- you know, I was pretty upset.

All right, the chemo. So we got three opinions, three or four opinions, I don't know how many. My husband immediately got a hold of Larry Norton at Sloan Kettering, and of course, the doctor, my surgeon, said, "What do you want to get a hold of him for? He has a big ego, and as far as I'm concerned, all chemo is alike. Maybe you better not get too many opinions." I got one opinion that said all you need is tamoxifen. Another one said, oh, you do this.

And then I came to -- at that point, you know, I'd do anything. I mean, you will do anything. If they tell you to put your head in Lake Erie for 10 minutes, you would've done it.

So the oncologist that I went to said that there was a study out there that you could do high-dose chemo, four doses of it, and then bone marrow transplant. And that she said with ordinary treatment, with a regular protocol, it's a 50/50 chance, but the earlier studies -- now, this is a mistake, and I really think an awful lot of this doctor -- this doctor is in love with chemo. Chemo, chemo, chemo, who is a true believer of chemo, and obviously, the more chemo, the better. And as you well know, that's very controversial.

She said the early studies show 85 percent chance of survival. Well, of course. But you know, that was flawed. And so I made my decision to go with that protocol with flawed information.

And this is where -- I'll tell you why you're all here. There would be no need for CAM, no need for alternative and comprehensive, if chemo worked, if there wasn't the toxicity of chemo and the horrible side effects and the people who die of chemo. Now, maybe it's come a long way, but it hasn't come very far. (Applause)

All right, I went into this thinking -- and she said, "Oh, you're going to do just fine. I mean, some people don't do well, but oh, I can tell by looking at you that you're going to do just fine, because you have this great attitude and you're not depressed," and all that kind of thing.

Well, I woke up a couple weeks later. In the middle of the night, I pounded on my husband. I could not talk. My mouth had swollen up. The tongue had filled my mouth. I had thrush and I didn't know it, and I was in agonizing pain, and I felt like an animal. I couldn't even talk, because chemo is very degrading.

Now, I heard a talk yesterday that talked about, cancer can make you a better person. Well, first of all, facing death absolutely can change your life. But pain does not make you a better person. If it was pain, why would you be here? You're to lessen pain and suffering.

So I had the thrush. Then all of a sudden, one of my teeth went bad. And I had to have a tooth pulled. Then another tooth went bad and I had to have that pulled. Then all of a sudden, I had horrible bone pain in the middle of the night and I thought I was having a heart attack, and I was rushed to the hospital. It happened three times during treatment. I had mouth sores and mucositis, where from my mouth all the way down to every part of my GI tract was affected. I had emergency gall bladder surgery; my gall bladder went bad. But I will you, they did give me Ativan before I had the surgery. (Laughter)

I had cancer coaches, but not from the medical profession. My community -- I don't know, I didn't think I had any friends. I'm very controversial and very outspoken, and you don't always make a lot of friends doing that. However, I read every card three times. I must have gotten 200 or 300 cards. And I believed every words of those cards. They sustained me. They were like food. Flowers came to the house. And those flowers, I looked at them and I smelled them and I loved them till the moment they died. They sustained me. They gave me strength. People called my husband. I mean, I cannot tell you what got me through this that I did not go into a depression. I think I was so busy being sick that I didn't go into a depression. Cancer coaches. I had people who worked with me.

Now, I'll tell you what I did. I could not wear a wig. I put a wig one day and I felt like I was ashamed and I was hiding something, and this wasn't my fault. I thought I had done everything right in life. So I got rid of the wig. I put a hat on. And I would go into work, because I loved my -- I mean, I didn't work very hard. I mean, believe me, I was too sick. But I would go into the office, and I shared my illness with all the people in that office, and they thanked me for sharing my illness. And they came up and they gave me sympathy and patted me on the back and told me I was brave. My friends, the same way; my husband would let them know how I was doing. And the community came together.

So I'm saying, instead of -- you professionals there, encourage people to share. By sharing, there is not risk. You know, we saw so much evil September 11. There is wonderful good out there. So always remember that that balances that out.

My cancer coaches, they told me what to do through radiation. It did not come through the medical profession. They're very busy, very, very busy doctors, very good doctors. Radiation doctors know a lot about radiation, and yes, they know a lot about other -- as I was going through this, I said, "Isn't there something you can do? What about vitamins and minerals, what to eat?"

Well, I couldn't eat anyway, but I will tell you what happened, and this something that you all should take heart, let your patients know when something is going wrong.

After my second chemo treatment, just before my third one, my doctor went out of town. Another doctor took over and said, "I want you to have a CAT scan." I was too sick to ask why because I thought they would tell me. Three days later, they threw me in the third chemo. The chemo is 25 percent more adriamycin than a standard dosage and 100 percent more cytotoxin given simultaneously.

After the third one, my whole body collapsed. What happened is, I got a phone call from the bone marrow transplant people that said, "We can't do the bone marrow transplant because you have liver failure." And I had -- the enzymes in my liver were sky high. So a disconnect. I would not have gone into the third chemo treatment.

I was then hospitalized. I lost 25 pounds in 2 weeks, and I was very close to death because of the chemo. And because a doctor maybe, maybe thought that the study that I was on was more important than the patient. You doctors must take your patients off of a study if things are going bad. Do not err on the side of staying with the study. (Applause)

Well, after it was all over and my immune system was shot and I was a mess, I said, "What can you do for me, because if I do not increase my immune system, this cancer will grab me. And I have to become well and I have to stay well."

They said, "We're sorry. We're not trained in that. The body will just heal itself." That's a crock. That is not true. I had been doing a lot of reading, and I found an alternative medicine doctor in my community who had been practicing alternative medicine for 25 years. I went to him, and I will tell you that his -- you see how healthy I look and my energy level and everything? It is because of that.

Now, I have told -- through my connections, I have talked to the head of the medical school. And it's not money. My foundation raised about $60,000. We could probably raise more. But it wasn't money; it was my experience and my influence to try to convince the Northeast Ohio -- which is a cancer center -- to take a look at other alternatives and absolutely train their doctors in this type of medicine. And that's what I've done.

And I am going to read to you the last paragraph of a paper. And if you're interested in some of the things I have to say, I made copies of it. My husband has it somewhere in the room.

"The Battle. Since the first diagnosis, I have been through a prolonged battle. Just as the discovery of penicillin let to its replacement of arsenic as a cure for syphilis" -- remember the movie "Out of Africa"? Karen Blixen's disease was syphilis, and she took arsenic, and we all thought, "Oh, wasn't that horrible". Another discovery must be made for the treatment of cancer. But until a cure is found, we must find ways of lessening the suffering of current cancer treatments and returning cancer patients to health as quickly as possible."

And with that, I thank you. (Applause)

[further discussion/questions]