Hello, my name is Kevin and I'm a non-Hodgkin's lymphoma survivor. I'd like to take a moment and introduce survivors that will be participating in our discussion titled "Getting Informed."

Our host is Andrew Schorr, a medical broadcaster from Seattle. Andrew was diagnosed two and a half years ago with chronic lymphocytic leukemia. He so far has not had to have treatment. Mary Jane from Indiana was diagnosed with throat cancer and is a social worker for oncology patients. Seth lives in Maryland, and he was diagnosed with testicular cancer and is a strong believer in gathering information. Bob lives in Mississippi and was diagnosed with a tumor on his hip. Bob has an interesting experience regarding second opinions. Lolita is from Nebraska, and she was diagnosed very recently with stomach cancer and is seeking more information. You'll be listening to very honest and personal discussions by each these survivors as they went about obtaining information and second opinions on their diagnosis. You will hear how being informed impacted their treatment decisions, their recovery and helped to comfort them on this journey. In particular, listen to how Lolita is helped by the experience of the other survivors.

This discussion is unique in that it represents the views and opinions ofreal people living with cancer. This discussion does not necessarily represent expert opinion, nor the opinions of the American Cancer Society. The information represents what has worked and not worked for others dealing with cancer. As people deal with their cancer in many unique ways, it is up to the listener to determine what is appropriate and relevant for them. We hope the information is helpful and we welcome your feedback.

Mary Jane, Indiana

ANDREW:
Let's talk with Mary Jane from Indiana. You were diagnosed with throat cancer in 1980. You had a procedure that enables you to use a voice prosthesis. You now are a social worker for oncology patients. I guess my first question to you is why is it so important for a newly diagnosed patient to get accurate information quickly?

MARY JANE:
Many times we do not understand the medical terminology that has been initially used in giving us a diagnosis or a plan for treatment. And I think to cope with cancer, to make knowledgeable judgments on treatment, we need to get as much factual information that we understand as quickly as possible, in order to move forward with treatment.

ANDREW:
How does one go about it?

MARY JANE:
I tell the patients that I work with every day that they are consumers; that they have a right to ask questions of the physicians that they are seeing, and to demand answers. I experienced a very negative response from the surgeon when I was making decisions, when I asked for additional information and was told I was already too anxious, that he didn't want to make me any more anxious by giving me more information.

My feeling is that it's the unknown that makes us anxious. Therefore, we need to expect information. So I not only asked the surgeon, I contacted the American Cancer Society. I used any resource I could to get specific information related not only to my diagnosis, but to the surgery that I was told I needed to have.

ANDREW:
How does one sort out what is really stuff they can count on, and what maybe is~Eyou know, may be noise and not necessarily helpful.

MARY JANE:
Certainly in anything I read, I only relied on information that cited a medical source, and not just a patient opinion.

ANDREW:
How do you get not just accurate information, but how do you sort through the information?

MARY JANE:
I think you'd have to sort it through in terms of your own diagnosis and also your own lifestyles, to see what is going to match up in meeting your needs as far as treatment.

ANDREW:
So for instance a question of a certain treatment that might sort of lay them out for many months or weeks, versus something that might be just as good or might be quite good, and yet afford a sense of normalcy in their life.

MARY JANE:
That's right.

ANDREW:
Mary Jane, are there specific medical sources that you like to suggest to your clients or that were helpful to you, that you could count on?

MARY JANE:
I would say the National Cancer Institute, the American Cancer Society, the Leukemia Society of America. Again, information that comes from a solid source. On the Internet there is information coming from major cancer centers that are moving forward with some newer treatments. They are all good sources of information.

ANDREW:
Okay! Those are good ideas, and any suggestions related to insurance?

MARY JANE:
I think the first word related to that is "persistence" because unfortunately in this day of managed care, it may take more than one phone call and talking to more than one person, but again being persistent enough to get the answers you need.

Mary Jane, Indiana

ANDREW:
You're a trained social worker and you talk about these sorts of issues with people every day; But how did it work out for you in coping with your own diagnosis back in 1980, as far as using information as power?

MARY JANE:
I felt very frustrated, initially. As I gained more information and better understood what my options were, again I felt more in control of this situation. And less isolated.

ANDREW:
And so getting information is both treatment, treatment options or insurance, legislation, those issues we discussed. But it's also that information that there are other people living with this disease, or living who have been treated for this disease. And that rather than thinking sometimes that a newly-diagnosed situation, a diagnosis of cancer, is a death sentence, or your future is immediately clouded, some clarity can come out of it.

MARY JANE:
Absolutely!

ANDREW:
Mary Jane, Thanks. Stay with us.

Seth, Maryland

ANDREW:
I want to go to Seth in Baltimore. Seth? Are you with us there?

SETH:
Yeah, here I am.

ANDREW:
Okay, good. Thank you very much. Well, let's just hear a little bit about your experience.

SETH:
I felt a lump on one of my testicles, and it didn't hurt or anything so I didn't do anything for awhile. But after a month or so I did go to the doctor to find out about it, and he felt me there and I said, "Is that normal?" And he said, "Well, no it's not. I was in a urologist's office later that afternoon; I had an ultrasound at the hospital the same day. And that was a Tuesday and I had to have an operation to remove the cancerous testicle on the Friday. So it went very fast.

ANDREW:
How do you get information when things are moving so fast?

SETH:
I had to move very fast on that, as well. And as you can imagine, the news that I had to have a testicle removed was cataclysmic and horribly upsetting. I was able to get a second opinion from another urologist, and just within that three day period I was lucky to be able to land an appointment like the next day or something. So I really dug in fast. Made a lot of calls. And by the time Friday came along I was able to be some what reconciled to believing that this operation to remove the testicle was the thing that was the right and proper thing to do.

ANDREW:
If someone listening to us is told that they need surgery very quickly, is there ever a case for somebody to say, "Well, doc, instead of it being Friday, I wonder if it could be Monday because I just have some questions I want to get answered."

SETH:
Of course every kind of cancer is different, entirely, and I really don't know enough to know that. I don't know whether Monday would have made a difference. It was clear that there was an urgency about it, because apparently testicular cancer is fast-spreading. There was another operation later, a lymph node operation, that didn't have that kind of rush to it.

ANDREW:
The point is, though, when you were being wheeled to the operating room, you felt at peace, at least, that you had verified that what was happening to you, the surgical treatment, was what made sense.

SETH:
I absolutely did. I had gathered enough information that I knew this part of the treatment was a no-brainer; that it had to be done.

Seth, Maryland

ANDREW:
Seth, what about books as a source of information?

SETH:
There was one that I found extremely helpful called Diagnosis: Cancer. Your Guide Through the First Few Months. And the author is Wendy Schlessel Harpham.

For me going through testicular cancer, a book called Man to Man: Surviving Prostate Cancer by Michael Korda was very helpful because the operations involved in the two diseases affect the same anatomy, you know, the male reproductive equipment.

SETH:
Books are great for the more general stuff, and for sort of another side to it. But for the nuts and bolts of "what kind of chemo am I supposed to have?" "What operation should I have?" That, you'd better get something more up to date than a book.

ANDREW:
Right, because fortunately for us with cancer, these treatments are being advanced every day. And so it's almost yesterday's news is not that useful, you need to understand what is the latest thinking.

SETH:
Right, and my doctors needed to understand what was the latest thinking, and not in every case was that true. There was more than one situation where there was something better available than had filtered through to my most local doctors.

ANDREW:
But as Mary Jane just said, you're the consumer.

SETH:
Oh, absolutely!, By the time I went in for some of these operations or these treatments or whatever, I actually had begun to feel the way you feel when you're getting your car repaired. That you're the customer and you're going to them because you want to get the radiator replaced or whatever it is, but you're the one in charge, absolutely. I was so clear that I was the one making the decision, not being told what to do.

ANDREW:
Seth, We're going to continue with you shortly. I want to talk to Bob who is another cancer survivor. So stay with us, okay?

SETH:
Okay, sure.

Bob, Mississipi

ANDREW:
Bob, you're down in Mississippi. I understand that you had a cancerous tumor on your hip. Take us from that point, if you will.

BOB:
The first prognosis was that I was going to have to be amputated from the waist down. And going back to what Seth said, you don't accept the first prognosis, ever. You get a second opinion for sure.

ANDREW:
And that resulted in a whole different treatment for you.

BOB:
Absolutely!

ANDREW:
And you did not have something amputated.

BOB:
I have no amputation.

ANDREW:
And you're doing okay.

BOB:
I have had some tumor excised and de-bulked, but I have had no removal of leg or arm.

ANDREW:
So with this diagnosis, did you sort of get angry and then go get information to really put it all in perspective for you to make the right decisions?

BOB:
When I first found that I had the problem, I went directly to a friend of mine who worked at the hospital in the library. And I had her go through all the medical books and all the Internet information she could get her hands on and everything else and make me copies of it.

ANDREW:
How did people respond - the doctors - when you had all this knowledge?

BOB:
My family physician was pleased.

ANDREW:
Now, moving forward a bit in your story, you eventually went to New Orleans for treatment. Did you find the oncologists were receptive to talking with you about what your best treatment was?

BOB:
Absolutely! They told me my only option was to be amputated from the waist down.

ANDREW:
That was the option they told you. But that is not what happened, so how did that dialogue happen?

BOB:
Well, I told them that I was not going to take that as the answer, the solution to the problem. That I was going for a second opinion.

ANDREW:
And in New Orleans, were those oncologists receptive to you going over to Texas?

BOB:
Oh, absolutely! They said, "We might see five of your type tumors in a year's time. The first day I was in Houston they saw 30-something. The first day! So there's your comparison.

ANDREW:
And if you hadn't done that you would have been missing part of your body right now.

BOB:
That's a true story!

ANDREW:
If you had had that major surgery, you would have been basically sitting at home, probably.

BOB:
I play golf; marshal at the local golf course in my spare time when I want to, and do anything I want to!

ANDREW:
Alright, thank you. It's very helpful for all of us, so stay with us here and let's get Lolita on, here.

ALL

ANDREW:
Lolita, you've been listening to all this.

LOLITA:
Yes, I have.

ANDREW:
And Lolita, just to review, you are in fact someone newly diagnosed with stomach cancer, right? In the last couple of months.

LOLITA:
Yes.

ANDREW:
Well, first of all, Lolita, has what you've been hearing been helpful so far?

LOLITA:
It's kind of blown me away! ~EI just kind of followed my doctors along; wherever they said to go, I go. I was diagnosed with cancer the latter part of July. I had my stomach removed on the 20th of August. I've been doing real well, but now they want me to take chemo and radiation, which they're going to set me up for next Wednesday. I have not done anything on my own, but I don't know! I may have to yet!

ANDREW:
What I'm going to do is push some buttons here, Lolita, and we're going to get Bob and Seth and Mary Jane. We're going to form a little committee here and we're going to help you, okay?

ANDREW:
Let's start with the social worker. Mary Jane, any questions that you might want to ask Lolita and then some things you might want to suggest?

MARY JANE:
I wondered, Lolita, if you have talked to anybody else who has had stomach cancer?

LOLITA:
No, because they tell me this is very, very rare in the United States. It's only common in Japan. And when I have asked about it they say, "Well, there isn't much on this because this is such a rare thing."

MARY JANE:
And you have made no attempt through any Internet search or anything.

LOLITA:
Very little. My son is on the Internet, I am not. But I know that before the day is over he will be on the Internet on that.

MARY JANE:
Yeah, because I'm the kind of person who has difficult in accepting just what one person tells me, even if it's a very competent physician, and I want to know what other people have to say on similar matters.

LOLITA:
I'm kind of hamstrung because I have HMO and [laughing] they've been pretty good about it, but when it comes to going out further, they don't want to do that.

ANDREW:
Well, you know, many of us face that, too. But that does not necessarily mean poor quality care or the wrong care, and I think that's where you have to go to bat for yourself, but you can't do that unless you have the information. Seth, how about you? What would you say for Lolita...

SETH:
I know from my own experience, if nothing else, after all the physical stuff and the treatments there's an emotional side to losing a part of your body, and I hope that you have good support and love around you that you can~Eand if you find you need it, that you can have someone to talk to about that side of it.

LOLITA:
Thank you, and I do have my church. Prayers have been said for me and it has been super. It has been phenomenal.

ANDREW:
You know, Lolita, we've mentioned some organizations that are out there that can help you, you know, beyond let's say friends and family, let's say, helping you seek a second opinion at another major medical center. Questions like that. Or searching on the Internet. Or even at the medical school; for instance if somebody went over to Omaha for you, for instance, there would be a health sciences library, the very thing that the medical students look at, and as Bob said, there are libraries whose job it is to help get information.

ANDREW:
I mean, you're a taxpayer in Nebraska, and so part of the job is also to help you. And so there are reference librarians who can help.

ALL

ANDREW:
But I did want to say one other thing, too. It's tough, you know, when you're been newly diagnosed and the weight of the world is on your shoulders and you don't know what the future is. So, you know, maybe each of you have some suggestions, Mary Jane, maybe Bob have suggestions, too, of how a friend or a family can help do this job for you. Mary Jane?

MARY JANE:
Yeah, I think that many times family is probably as concerned as you are, and sometimes is able to talk with someone else that's not in the family. That's why I asked if you'd been able to talk with anyone else with a similar kind of cancer. Because I think just knowing that there are people out there who have had a similar experience, who have made their way through it and are doing okay is one of the most hopeful things that you can experience.

ANDREW:
Right. And Bob, was there someone in your family that helped you, too?

BOB:
My wife and children have been excellent. Cancer support groups have been a big factor in my life.

ANDREW:
Now, let me mention one obvious source the American Cancer Society does have a 24-hour number where there are cancer information specialists who know what's out there as far as pamphlets, books, papers, etc., And they're happy to send them to you for free. And that number to call, by the way, is 800-ACS-2345, or 800-227-2345. And also there's a local American Cancer Society unit in just about every locality.

MARY JANE:
Some of those local chapters also have groups for cancer patients that don't necessarily relate to one kind of cancer but to a total cancer experience.

BOB:
That's what mine is.

MARY JANE:
And I think that kind of thing could be very helpful to Lolita.

ANDREW:
So Lolita, it sounds like for you now, as you face this challenge, as any newly diagnosed patient does, you can turn to friends and family. You mentioned people in your church are praying for you. There may be somebody there who is really good at ferreting out information. There may be someone else who has connections at the university or the medical school, who has had experience there and can refer you to people who are experts in the treatment that you need, and also help you find out where in the country or the world there are treatments for this rare form of stomach cancer that you have, and can help bring that information.

As I think Seth said what he would do, is come in with a handful of information to his doctors and say, "What about this?" And "What about that?" Because you're the one, with your friends and family, who can be the advocate for your specific care.

LOLITA:
Well, I think I'll get busy today!

ANDREW:
And I know it's so hard when you're saying, "Oh, my God, what's happened to me?" And you're angry about it, and you're fearful about it, and you don't know what's in the future. But it's been said - it's a trite phrase, almost, but it's so true - information is power. And as Mary Jane said, that's what puts you in control of what otherwise is a very frightening condition, but also as Bob and Seth have shown, and Mary Jane and myself, too, there's life after this diagnosis, and it can be a verygood life.

SETH:
One thing I'd like to say, too, is that if Lolita does get into this Internet thing and find something, that may very well confirm for her that her doctors have had her on just the right path.

MARY JANE:
And that just validates it and makes her feel more positive about what they've recommended.

ANDREW:
Right. There's a peace that comes with knowing that you got the right team, the right medical team.

So first, to have the medical team who will answer your questions and you can feel sure are sort of on your side and are really looking out for you. And then you play your role, as all of us have said, in bringing up questions with them. You know, making sure that every step of the way, everybody is in agreement. And then there's a whole peace that comes with that.

BOB:
What I've found, if you're not being aggressive you're probably being regressive.

LOLITA:
I probably am!

ANDREW:
But you don't have to do it alone, Lolita, and that is, those church members or family members, you know, ask for help.

MARY JANE:
Because many times people want to help and don't know what to do! So if you can give them a specific task, they're going to feel better about what they can do for you.

BOB:
That's very true.

ALL

ANDREW:
Well, Lolita, is there anything that we can do to help you get on this road?

LOLITA:
I think you've done a lot. I've been taking notes, and like I say, my son is in Lincoln and he will be on the Internet as soon as I get a hold of him, and I'm going to get on this road. I am going to find some stuff out.

ANDREW:
So let me see if we've got some follow-up points. Mary Jane, if you were going to say something to cut through the clouds of fear that surround a newly diagnosed patient and their family, with this diagnosis?

MARY JANE:
I think I would repeat what I said earlier, to take control of their treatment themselves. To get involved and regain some of the control that the diagnosis has taken away from them.

ANDREW:
Seth, how about you?

SETH:
Well, with testicular cancer it's maybe a different situation than other cancers, because the prognosis is so good. There really is a cure that works in the high 90 percent of the time. So one urologist that I saw said something that was very helpful to me. He said, "Look, you're going to get through this and you're going to have a normal life." And that stayed with me through the thing.

Guys who get this need to know that they will, and that they will still be able to have a normal sexuality and that their survival outlook is very high.

ANDREW:
But that knowledge and confidence came from you seeking out all that information. And Bob, how about you?

BOB:
I think you put it pretty well awhile ago when you said, knowledge is power. If you know what you're faced with and you know what your options are, then you've got a road to pursue it on.

ANDREW:
Very good points. Just one thing I want to just take a couple more minutes just to delve into, because we talked a lot about factual information. But what also happens with someone who is newly diagnosed is, there's an emotional burden, as I mentioned.

MARY JANE:
I think if anyone does some networking in their own community, they will find a counselor, a social worker, a psychologist who has had either some personal experience with cancer or have worked with other oncology patients who can be extremely helpful with dealing with some of the emotional turmoil that goes with some of the things we've been discussing.

ANDREW:
Seth or Bob, did you have experience, or your family members, with doing anything like that?

SETH:
I did go and see a counselor, and I talked to the priest at the church, and two close friends, and all of that was very helpful and necessary. Because the emotional side of the loss of the testicle was really a more difficult thing in the whole process than the actual surgeries and lymph node and chemotherapy choices and so-on.

ANDREW:
And Bob, how about you?

BOB:
Well, the church community was a tremendous help as far as our attitude and everything was concerned, because you know, if you're alright with the Man Upstairs, whatever you do you're going to be alright.

The other thing is, I found that the local cancer support groups, and they're all over the place, are really a source of help. Because if you get in there with those people, they have experience with the disease. They've been through the same thing you're probably going through. And they can speak from experience more so than opinion.

ANDREW:
Just like we're doing today!

BOB:
Exactly.

ANDREW:
And what about for family members? I mean, certainly we have our own fears and our own emotional trauma, but there are counselors and even support groups for families that are available too, right Mary Jane?

MARY JANE:
Absolutely! And cancer affects the whole family, and I think a family needs as much help as a patient, and too many times we forget that, we get so concerned about the patient, that we need to reach out to the family as well, to provide some of that support.

BOB:
Mary Jane, let me say this to you. I have two friends who have had the same thing that you have had, and they are doing just as well, apparently, as you are. Congratulations!

MARY JANE:
Well, thank you very much. That means a lot to hear you say that.

SETH:
We're a group of fighters here!

ANDREW:
That's true.

MARY JANE:
Absolutely.

ANDREW:
Mary Jane, thank you for your time.

MARY JANE:
It has been my pleasure.

ANDREW:
Yes, and good luck with your relationships with patients that you help right there in Indianapolis.

And Seth, good luck to you in Baltimore.

SETH:
Thank you.

ANDREW:
Lolita, we're praying for you and we know things will work out well, especially if you get the information and make sure that you have knowledgeable doctors who are helping you.

LOLITA:
I will. Thank you very much.

ANDREW:
And Bob? Boy, we learned a lot of lessons from you! So if I get to Mississippi, you and I are going to play golf, okay?

BOB:
Please do!