ANDREW:
Hello, and welcome to the American Cancer Society's Cancer Survivors' Network, the service created by and for cancer survivors. In Seattle, I'm your discussion leader, Andrew Schorr. Our topic: women over 65 with colon cancer and recurrence. On the phone with us are two women who have been treated for colon cancer, and a surgeon, who founded the Stop Colorectal Cancer Foundation. Over the next few minutes, we'll discuss issues such as: finding colon cancer support for older women; the importance of relating openly and comfortably with your surgeon; insisting on a thorough diagnosis when you know something is wrong; prevention and detection of early colon cancer by talking to your family; healing through doing for others; the many ways to be an activist in bringing colon cancer issues to the public; and raising individual awareness and action.

First let me introduce Alice of Yarmouth, Massachusetts. Alice, I know you're 71 and you're a nurse. For years you've been a great volunteer of the American Cancer Society. Thank you for that. And then, just two years ago, I understand you had your own fight with cancer, including colon cancer and also two episodes of skin cancer. When you got the initial colon cancer diagnosis, did you know pretty much what you were facing because of your health care background?

ALICE:
Well, it came as a surprise to me because I had had an episode of bleeding, but I never associated this with cancer. So that came as kind of a shock to me. I was very fortunate in having a great surgeon who was very kind and compassionate and the like. Here again, fortunately, it was a case where I did not require anything more than just the surgery and the colon resection. I didn't have to have any radiation therapy or chemotherapy.

ANDREW:
I see. And tell me, Alice, you had surgery. How much of your colon or intestine was removed, and how has that affected you?

ALICE:
Well, actually, I've been fine. Maybe a foot or two of intestine was removed. However, it was right at the junction of the large and small intestine, so there was an area from each that was removed, and also lymph nodes were biopsied and the like, and everything came out all right.

ANDREW:
And you've been doing well since the recovery from the surgery?

ALICE:
Yes, I have, except for a hernia. That is probably due to previous surgeries that I had had.

ANDREW:
How did the diagnosis occur?

ALICE:
I had a colonoscopy, and that's when they discovered that there was a tumor.

ANDREW:
Was there a history of colon cancer in your family?

ALICE:
No. No, my sister died of breast cancer. It started in the breast and had metastasized to the liver, and that was about 30 years ago.

ANDREW:
And since the time of your diagnosis, have you been saying anything to friends or family members as far as getting checked for colon cancer?

ALICE:
Oh, yes, and I've mentioned how important it is to have this done, and expressed how I felt about it and how fortunate I was that it had not gone further.

ANDREW:
What would you say to other older women who find in their late 60s, early 70s, that they have this colon cancer diagnosis?

ALICE:
Well, I think for one thing, anything comes as a shock and a surprise. But then it's a question of trying to analyze the whole situation, having faith in your doctor, having faith in coworkers and so on. And you should share, don't hide it, share your problems with others. Not to overdo it, of course, but to let people realize that you're in good hands and there is cooperation with others.

ANDREW:
Alice, the whole idea of colon cancer deals with bodily functions that people don't normally talk about publicly. Were you up front about it as you were going through this, both with family members and friends?

ALICE:
Oh, yes. Yes, I was. I told them right from the beginning what it was and what would need to be done. I was up front with everything.

ANDREW:
Good for you.

ANDREW:
Well, let's bring in a third member of our discussion, who's certainly lived through these experiences. Lucy joins us from Central Falls, Rhode Island. Lucy, you're 69, right?

LUCY:
Yes, I am.

ANDREW:
And I understand your family's had more than its share of cancer, unfortunately. I think you're one of six children, four of whom have had colon cancer. Is that right?

LUCY:
Yes. I have a brother that died of colon cancer.

ANDREW:
So, when we talk about prevention, when you think about your grandchildren and others in your family, with such an extensive family history, I imagine you must be very outspoken about screening for this.

LUCY:
Yes I have. I had no problem getting my children to go for their colonoscopy. They start with a sigmoidoscopy and then it's usually a colonoscopy. I had my surgery 12 years ago, and it started with polyps. I did not have any bleeding, I had no symptoms except a change in my bowel habits. I had lots of gas and a loose bowel movement. And of course, I went to a gastroenterologist, and I did not even have a rectal examination. He did a sonogram and said I had a spastic colon, and suggested that I use Metamucil to tighten my bowel movement. And that seemed to work. About a year after I was visiting him, I finally had a colonoscopy, and that's when they saw three polyps, and one was cancerous. So I have had a permanent colostomy. This month it will be twelve years. When you have a problem, and you go to the doctor and it's not being resolved, then go to another doctor.

DR. HAMBRICK:
This is Dr. Hambrick and that is very excellent advice. I would second that most heartily. If you go to a doctor with symptoms, and you're concerned about what's going on, and that doctor does not examine you and give you some answer to your satisfaction, then by all means, go to someone else.

ANDREW:
Yes, I was just going to ask you that. I think the patient, the person concerned, really should feel like they're in the driver's seat, shouldn't they? And yet maybe for our audience today, someone who's older, who grew up maybe thinking that the doctor knew it all, it's difficult sometimes to question a doctor. Maybe someone you've had a long relationship with.

LUCY:
It's so much easier to believe the doctor, when he says, "Oh, no, it's okay. It's just a spastic colon."

ANDREW:
And you want to believe it's okay.

LUCY:
That's right, you want to.

ANDREW:
So Dr. Hambrick, that assertiveness though, could make the difference between life and death, couldn't it?

DR. HAMBRICK:
Absolutely. There's no question about that. The delay of a year obviously did not add to the impact of the outcome here, but it could have. And I think that the atmosphere in which medicine occurs now is different than it was 20 years ago, in that doctors are very accustomed to patients asking questions, and wanting to be more involved in the process of their health care. And I would definitely encourage people to do that.

ANDREW:
When you originally had these problems, did you discuss with your doctor the family history, the extensive family history of colon cancer?

LUCY:
There was none. My brother and I were both operated on five days apart. It's practically unheard of. My mother had had polyps, but I never knew that polyps became cancerous. So I never had anything done about that. But as soon as I knew what my situation was, I talked to my sisters, my brothers, and of course all it took was one brother to go. My sisters were afraid to go, and of course they will admit now that it was the biggest mistake they ever made, as far as their own health was concerned.

ANDREW:
What was finally discovered, in all those cases? Would you say it was a mistake, did they later find out that they had a problem?

LUCY:
That they had colon cancer! I have two sisters who've had colon cancer the last two years, so they have had a lot of time to go, because I've been talking about this since I had mine 12 years ago, pushing everybody, especially in the family. I've had a couple of cousins that died of colon cancer.

ANDREW:
So there were nine years for your sisters, nine more years of potentially this cancer advancing in their bodies, or developing. Dr. Hambrick, typically, this is not a fast-growing cancer, is that correct?

DR. HAMBRICK:
No, it is very slow-growing and it's estimated that it takes about ten years for a polyp-of say about three times a pinhead-size polyp-to become a cancer. So that gives you a window of opportunity to find the polyp and take it out and prevent the cancer. And that's why the screening tests work.

There's something else that Lucy has said that I think we should probably comment about, and that was she said her sisters, first of all, were afraid to go. It may also be that they didn't believe that this was a disease that happened to women regularly, even though Lucy had had it. There is a myth out there that colorectal cancer is a disease of men, and that is not true. It affects men and women almost equally, and there's a huge education process that needs to be done. Lucy knew her mother had polyps, but no one had told her that polyps can become cancer. Because her mother had had polyps, she should have been in a surveillance program, getting examined regularly with a colonoscope. And it was available twelve years ago. She should have been colonoscoped regularly, as should all her brothers and sisters, because her mother had had polyps. So there's a lot of education that's necessary.

ANDREW:
So communication among the family, and action taken upon it, is certainly important. I know from my discussions with people on the Cancer Survivors' Network, I've heard a number of cases where it has saved a life. So I know it can make a difference.

ANDREW:
You know, I have this image with our listeners and Lucy and Alice with us today, that we have the opportunity of marshalling, if you will, activism to have this preventable disease, colon and colorectal cancer, really be stopped. As you say, Dr. Hambrick, much like early detection and screening in breast cancer has become so popular in recent years with women being outspoken about that. Do you think that that is a model that can help here? Following the breast cancer movement and having colorectal cancer be really top of mind for people as they grow older, or where there's a family history?

DR. HAMBRICK:
Absolutely. And 75 percent of the people who end up with colon cancer have no family history. So we also have to get the word to everyone, that there are things you can do that will decrease by at least 90 percent the probability of your ever having colon cancer. Those things are: be examined regularly by screening tests; have a good diet; be reasonably active; perhaps also take Vitamin E and a little aspirin; and drink lots of water. Those are the kinds of things that we know decrease the incidence of polyps and colon cancer. And in one study, if you did those things and removed all the polyps, it decreased the rate by 90 percent.

Of all of the major cancer killers, colorectal cancer is the second most common cancer killer of men and women. And of all the major cancer killers, colorectal cancer is the only one that we know something we can specifically intervene with, and that it will prevent the cancer. And I am ignoring lung cancer, because if people would stop smoking, that would handle that, but stopping smoking seems to be a very difficult societal issue that we are not going to solve in the next few years. I do believe we can eradicate colorectal cancer in the next few years. I really, honestly believe that, by doing the kinds of things we've been talking about. And both Alice and Lucy have done exactly what they needed to do, they have gotten out there and they have talked about it. And that's what needs to happen.

ANDREW:
That can certainly save lives.

DR. HAMBRICK:
A very helpful development in this regard is that the United States Senate has designated March of 2000 as the first annual colorectal cancer awareness month. This will be a very, very helpful and useful thing in continuing to get the word out, continuing to educate people, to present the conversation in our society. That's what needs to happen. We need to start talking about this.

ANDREW:
Right, and Dr. Hambrick, as we heard, it's not just among those of us who are not in the health care profession. It's also fostering those discussions between patients and doctors.

DR. HAMBRICK:
That is very true. One of the aspects of what the Stop Colorectal Cancer Foundation is doing is developing interactive education programs for physicians, because very often the doctor does not discuss with the patient the need for screening.

ANDREW:
I have a question that Lucy must have wondered about. Lucy, twelve years ago you had the diagnosis of colon cancer and subsequently, years later, you found yourself with breast cancer. Did you wonder about whether there was a connection?

LUCY:
Yes, I spoke to the doctor about that, and he said that there's been quite a bit of studying done on it, and they are speaking of some connection there.

ANDREW:
Dr. Hambrick, do you have any comment on that?

DR. HAMBRICK:
Yes, there's a clear increase in incidence of colorectal cancer in women who have had breast cancer, and vice versa, so there is some sort of connection. We have not begun to understand what it is, but it's very real. And so, a woman who has had breast cancer is at increased risk for colon cancer and, as her regular testing, she should undergo colonoscopy.

ANDREW:
And then, the reverse as far as breast cancer screening and mammograms?

DR. HAMBRICK:
There's no question that a woman who's had colon cancer should continue with her annual regular mammograms. Definitely.

ANDREW:
Now, let's talk about the emotional side of this for a little bit. Alice, when you got this diagnosis of colon cancer, I think you said you were shocked.

ALICE:
I was surprised.

ANDREW:
But was there an embarrassment at all? Or anything like that that you think maybe women might have a hard time with? Any feelings that you would share with other women who are listening? Lucy, anything on your part?

LUCY:
What I would be embarrassed about was my thought of going back to work with a permanent colostomy, thinking that I might have an accident. I wasn't embarrassed as much as I was afraid of having an accident. And then I found the people that I work with saying, "Listen, we love you. We don't worry about you having an accident, we're just so happy that you're here." So, as far as embarrassment, no. I mean, just that little bit of fear. But I find that having a permanent colostomy doesn't stop me. I go to the pool in the morning, and I'm very, very active. You live with a permanent colostomy. You do realize you have it, that's not anything you can forget. You take a little bit of extra care when you apply it, make sure that you're not going to have an accident later on. No, I'm not embarrassed or afraid of it anymore, but I was at the beginning.

ANDREW:
And you said your friends, family and coworkers were aware...You were open about having had some changes in your plumbing, if you will.

LUCY:
Yes.

ANDREW:
And Alice, what about you, was it difficult for you emotionally to get past this?

ALICE:
No, not really. As I said, it came as quite a surprise. I immediately had the surgery. It was a very short time after the diagnosis when I had the surgery, and I wanted it done as soon as possible. I was a little leery before, you know, wondering what would be done, whether it would result in chemotherapy or radiation, or would it be a colostomy, so I felt vaguely relieved that everything came out so nicely.

ANDREW:
Dr. Hambrick, I shared earlier that your brother had died of colorectal cancer. So, as a family member where this has intervened in your family's life and life of a loved one and taken them, how did you and your family deal with that when that happened so personally to you?

DR. HAMBRICK:
It was an extremely frustrating thing for me, because I had been discussing with my brother for years his need to go and get examined. And he would not do that. Just like Lucy's sisters wouldn't go and get checked out. So it was extremely frustrating for me, and I also could look down the road and know what he would have to face. And it was very sad, because I knew that it did not have to happen. It could have been so easily prevented, because the polyp that caused his cancer was low on the left side of his colon, in what's called the sigmoid, and that would have been seen with the flexible sigmoidoscope had he gone for appropriate testing.

ANDREW:
There's a real message here.

DR. HAMBRICK:
I'd like to make one other comment, too. Lucy has obviously adapted wonderfully to her colostomy and that's just the way her life is now, and it saved her life. There is another myth out there about colon cancer, and it's that if you have colon cancer, you're going to end up with a colostomy. These days in particular, it is less and less a circumstance where you do have to have a colostomy. There are some newer techniques and newer surgical procedures. And even 25 years ago, the vast majority of people with colon cancer never had a colostomy. The fear of having a colostomy is something that I have heard patients say over the years kept them from coming earlier to have symptoms evaluated. So I would just like to stress that a very, very small percentage of people who have colorectal cancer, even low rectal cancers, these days, will ever end up with a permanent colostomy. And if you have one, you do what Lucy and Barbara Barrie have done and you get on with your life.

LUCY:
Both my sisters have had colon cancer and neither one of them has a colostomy. And they're doing beautifully.

ANDREW:
As we draw to a close now, I'm going to give you a chance to give your underlying advice, your perspective, for older women who have had this diagnosis of colon cancer. What would you like to tell them, having experienced this and having had unfortunately so much experience of this in your family? What would you like them to think about that may give them hope and inspiration?

LUCY:
There are great support groups out there, wonderful support groups. When I had my operation, there was a visitor that came to the hospital, that came to the house. And if people have colostomies, and you see how active they are...they will tell you their experiences, so that's a great help. It doesn't necessarily have to change your life. It doesn't. You just have to learn to live with it, and it isn't that difficult. I mean, I was 58 when I had mine, and life goes on. It's your attitude. You have to have a good attitude.

ANDREW:
And get those regular checkups.

LUCY:
I go every year for a colonoscopy because my doctor says I grow polyps like leaves. So I go every year. And this past year was the first year that I didn't have any. So that's great.

ANDREW:
Good, but even so you'll be back next year to be checked again.

LUCY:
Oh, yes.

ANDREW:
Alice in South Yarmouth, Massachusetts, how about you? What would you say to women getting on in years who have dealt with this diagnosis and treatment of colon cancer? What would you say to inspire them, to help them along as they go on with their lives?

ALICE:
Well, I would certainly stress the importance of having regular checkups. First the stool checkup and then, if there's any blood or whatnot, to make sure that they see a doctor and have another colonoscopy. You have to face each day as it comes along, and try to look at the brighter side of things, and look for help with your different groups. I think the American Cancer Society is one of the finest. It has one of the finest programs and its local groups are just marvelous.

ANDREW:
And you found being a volunteer has been very fulfilling for you?

ALICE:
Oh, yes, absolutely. For instance, it's daffodil time coming up in March, and it's the flower of spring and of life. I've been helping with the daffodils now for 14 years. It's so wonderful to be able to offer this brightness to people, and the importance of fundraising and research and all, I think, is just great.

ANDREW:
Dr. Hambrick, you've launched this effort and now are devoting your life to stopping this disease. What words would you like to leave with the community of people who've already been touched by it, and what difference can they make now?

DR. HAMBRICK:
They can do exactly what both Lucy and Alice have done. They can make sure that they talk to their families, that their families understand, that if they will get tested regularly, they will not get the cancer. They can also be active in their communities, because each of us has a unique circle of influence. You can talk with the folks in your church groups and your civic groups and your business where you work, so that the subject becomes talked about. By talking about it and getting people to understand about it-that it is preventable, that they can do something to prevent it-this will go a long ways to eradicating the disease.

ANDREW:
Well, certainly we know that nobody who's been given this diagnosis of colorectal cancer would choose it. But certainly this is a cancer that now, using it as a platform to speak to others, you can really make a tremendous difference. Well, with that comment, we will have to end this very rewarding discussion. Thanks to each of you who has shared your personal experiences and insights to benefit others, either as a patient, or Dr. Hambrick, you as family member and as a surgeon, dealing with this disease with so many people over the years. For the American Cancer Society's Cancer Survivors' Network, and from our HealthTalk Interactive Studio in Seattle, I'm Andrew Schorr.