Discussion Introduction: Turning adversity into a major

victory: Andrew Schorr, Robert, Tony, Don

SCHORR: Hello, and welcome to the American Cancer Society’s Cancer Survivors Network, the service created by and for cancer survivors. I’m your discussion leader, Andrew Schorr, in Seattle. Today’s topic, “Living with Prostate Cancer for Men 65 and Older.” On the phone with us are three prostate cancer survivors from across the country who have been diagnosed just in the past couple of years or are in treatment or have recently completed it. Over the next few minutes, we’ll discuss such issues as minimizing the physical and emotional side effects of cancer treatment, getting the best possible treatment, getting the issue of prostate cancer into the open with friends, family and the public, continuing to find information and support that you deserve.

Let’s begin. Robert Alexander joins us from Newville, Pennsylvania. Robert, you were diagnosed with prostate cancer three years ago and I understand that you are now getting hormonal therapy and that you are married. I think you told us that you’ve tackled the question of getting past anger about prostate cancer. How did you do that? How did you get past being angry that this happened to you?

ROBERT: I think I went right through about four or five of these aspects of I guess It’s anger, or it’s denial, you know, you deny that maybe the lab made an error and got the names mixed up and some guys pretend that cancer doesn’t exist in them. Some react with despair. I think I had a little bit of that . Procrastination - didn’t quite make it, didn’t have much of a chance to say I’ll wait awhile and see what happens, and there are very little in the way of alternatives. That sort of came later. But I think the anger part of it may have passed rather quickly and probably it was a good thing that it did. I went to a fiftieth high school reunion at the time and I overheard a couple of classmates talking about cancer and saying it was the best thing that ever happened to them, and that almost knocked me over.

SCHORR: You’d already been diagnosed at that time? …read the rest of this entry»

Knowing about new treatment options

NEAL:
Hello, and welcome to the American Cancer Society’s Cancer Survivors Network, a service created by and for cancer survivors. I’m your discussion leader, Neal Sofian. On the phone, we have three prostate cancer survivors from across the country. Today’s topics concern men ages 50 through 65 who are newly diagnosed or in treatment. Before we get to our guests, I’d like to introduce Michael Samuelson. Michael is the chairman of the National Consumer Advisory Council of Cancerfacts.com, and he’s a breast cancer survivor. As a survivor, he brings a particularly unique perspective to the conversation. Welcome, Michael.

MICHAEL:
Hi, Neal, and thank you. We have an excellent show today. We’ve got guys across the country who have different perspectives on the same issue, and that issue is prostate cancer. The first person we’re going to talk to is Dave Bowers from Tampa, Florida. David’s done a lot of work in the whole area of education and helping other prostate cancer patients make the correct informed decisions. Dave, first of all, I want to welcome you to the show.

DAVE:
Thank you very much.

MICHAEL:
I’d like to know how you arrived at your decision with regard to treatment. And tell me about the work you’re doing with men in treatment because, as we all know, men are very reluctant to go and seek help. Increasingly they’ll go after it by themselves, and we want to know where they can go.

DAVE:
Okay. In my case, I was diagnosed with prostate cancer when I was 46. I’m 53 now. Things have progressed dramatically in the last seven years. There wasn’t a lot of support, to the extent there is today, when I was first diagnosed.

At the young age of 46, everything that I read, everyone I talked to, the recommendation was to have the radical prostatectomy. At the time they thought it was within the prostate. I was living in New Jersey at the time, and ironically, in this situation, I had a female urologist. She was trained at the University of Pennsylvania. So I had a second opinion, and he pretty much confirmed what the local urologist had indicated to me: that the cancer was localized, and that the best course of action was surgery. But seven years ago there were a lot of things not known at the time that are now known. For example, there was no mention of getting hormone therapy prior to the surgery. Nor was there a recommendation for hormone therapy post-surgery. So in my case, working with somewhat old information at that time, I ended up having the surgery with no hormone therapy. I also had the nerve-sparing surgical technique. Some people jokingly call it the “cancer-sparing” technique. …read the rest of this entry»

Treating the shock of diagnosis with practical steps

NEAL:
Hello, and welcome to the American Cancer Society’s Cancer Survivors Network, a service created by and for cancer survivors. I’m your discussion leader, Neal Sofian. Our guests today are men diagnosed with prostate cancer, who are under the age of 50 and who are still in treatment.

Before we get to our phone guests today, I’d like to introduce my cohost, Michael Samuelson. Michael is the chairman of the National Consumer Advisory Council of cancerfacts.com. Michael’s also a breast cancer survivor, and I’m very glad he’s here with us today. Michael, hello, and welcome.

MICHAEL:
Hi, Neal, thank you. Neal, as you said, today’s focus is on prostate cancer, and we’ll be talking to two gentlemen, both in treatment. First, I’d like to welcome Fred, from Olympia, Washington. Hi, Fred.

FRED:
Hi, how are you, Michael?

MICHAEL:
Fine, thank you. Fred, prostate cancer is one of those diseases that people often think of in terms of old men, if you will. Not somebody who is 50 or less than that. Fred, can you tell us a bit about your story.

FRED:
Sure, I’d be happy to. I was diagnosed at age 50, in 1991, and it was detected through a flight physical examination. I was a pilot, and he noticed an irregularity in the prostate size. That led me to go to a local urologist and we discovered that I did, indeed, have prostate cancer. It was quite traumatic.

MICHAEL:
Oh, absolutely. Fred, what stage were you when you were diagnosed?

FRED:
Well, when I was diagnosed, the cancer problem hadn’t spread. Nonetheless, the Gleason score, which is taken from the pathology report, indicated that it was a rather aggressive form of cancer. …read the rest of this entry»

Welcome and Participant Introductions

Wendy Harpham:
Hi! Welcome to the American Cancer Society’s Cancer Survivors Network. I’m Dr. Wendy Harpham, your host. Today I will be talking with three women in their late 30s and early 40s, all of whom have been treated for lymphoma or leukemia. As a long-term survivor of non-Hodgkin’s lymphoma myself, I’m pleased to be your host for today’s conversation as we talk about ways to stay healthy emotionally and spiritually during treatment and recovery, understanding what it means to have a normal life after cancer, finding support groups for young survivors, concerns regarding the long-term and late effects of cancer treatments, and dealing in healthy ways with the possibility of recurrence.

Our first guest is Lisa, a 40-year-old cancer survivor from Texas. Lisa is a single mom with two children, a boy six and a half, and a girl four and a half. Welcome to the program, Lisa.

Lisa:
Thank you, Wendy. It’s very good to be here.

Wendy Harpham:
What are your children’s names?

Lisa:
Mitchell and Emily.

Wendy Harpham:
Great. Now, I understand that in the spring of 2000 you found out about your cancer after having an elective surgery. Apparently your incision didn’t heal well and then you developed pneumonia in both lungs.

Lisa:
That’s correct.

Wendy Harpham:
And testing revealed that you had AML, acute myelogenous leukemia. So you were started on chemotherapy immediately, and your leukemia went into remission right away. …read the rest of this entry»

Turning a personal battle into a blessing

NEAL:
Hello, and welcome to the American Cancer Society’s Cancer Survivors Network, a service created by and for cancer survivors. I’m your discussion leader, Neal Sofian. On the phone with us are three cancer survivors from across the country who are newly diagnosed or are in treatment of colon cancer.

First, I’d like to introduce our guest host, Michael Samuelson. Michael is the Chairman of the National Consumer Advisory Council of Cancer Facts.com. Michael is also a breast cancer survivor.

MICHAEL:
Well, thanks, Neal. Let’s go ahead and get started. First of all, I’d like to bring into our discussion Richard Farrell, from Amsterdam, New York. Richard, you’re now 66 years old and have battled cancer with ongoing surgeries and chemotherapy. You’re also the founder and board member of the Colon Cancer Alliance. Richard, at what point did your personal battle turn into energy and activism, and helping others to battle cancer?

RICHARD:
Well, that’s a good question, and I have to go back to the beginning when I was first diagnosed with cancer. I was frightened and upset and concerned, just like every other cancer victim, or cancer patient. I don’t like the word victim. And I have been very active on the Internet, so I quickly went to my computer and began to look up all the information I could find. I quickly found a group sponsored by ACOR, The Association of Cancer Online Resources, and they directed me to the colon cancer list where I found several hundred other colon cancer patients and caregivers and family members who were being extremely supportive in the emotional sense, and also in education and experience and medications and procedures.

And so, talking to my oncologist and to my surgeon, and also to all the people on the list, I began to learn a great deal about colon cancer. This just began to foster a desire in me to learn more about it and to take charge of my own treatment rather than just leave it in the hands of the doctors. And over a period of time, we on that colon cancer list found that there was not any national colon cancer organization designed to support and advocate for colon cancer patients, caregivers, and family members. So we resolved to start our own organization and we did just that. And I guess my epiphany, as you might call it, started when I heard that there wasn’t any colon cancer group, and the enthusiasm began to build to start our own organization. I realized there was an opportunity for me to take part in the building of an organization that certainly would add tremendously to the life and value of colon cancer patients.

MICHAEL:
Richard, why do you think there wasn’t a colon cancer organization? It seems there are so many others. …read the rest of this entry»

Bringing colon cancer out of the closet

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: colon cancer in men between the age of 50 and 65. On the phone with us are two colon cancer survivors from across the country, men who are between 50 and 65 and are currently in treatment. Over the next few minutes, we’ll discuss issues such as: developing and maintaining a positive attitude; breaking barriers to screening and early diagnosis; being your own advocate by gaining knowledge and also by using the Internet; dealing with changing insurance policy rules, and treatment decisions based on money; and building support through new organizations like the Colon Cancer Alliance. Well, let’s begin. Joining us today is Richard from Amsterdam, New York. Richard, I know you’re 65, you’re married, and have four grown children. I think you were first treated for colon cancer back in 1997. Is that right?

RICHARD:
That’s correct, Andrew.

ANDREW:
Since then, you’ve had surgery, chemo, two more surgeries for metastases, followed by more chemo. I know you’re currently receiving treatments as part of a Memorial Sloan Kettering study. Is there more surgery scheduled for next month?

RICHARD:
Yes, there is, Andrew. I have been undergoing treatment as part of a study at Memorial Sloan Kettering under the supervision of Dr. Nancy Kemmeny. It seems that the combination of exoloplaten, which is a relatively new chemo being used in the United States, and CTT-11 has been rather effective. I had a CAT scan just recently and it seems that the tumors might be dead. That is the hope that the doctors have, and the hope that I certainly have.

ANDREW:
Well, as my dad would say, “From your lips to God’s ear.” You know I hope that that is true. I know that you are a founder and board member of something called the “Colon Cancer Alliance.” What is so vital about people seeking support? What gap does this fill for colon cancer survivors who seek out organizations such as yours? …read the rest of this entry»

Fighting aggressively

ANDREW:
Hello, and welcome to the American Cancer Society’s Cancer Survivors’ Network, a service created by and for cancer survivors. In Seattle, I’m your discussion leader, Andrew Schorr. Our topic, men in their early 50s or younger who are newly diagnosed or in treatment for colon cancer. On the phone with us are three cancer survivors from across the country, each dealing with colon cancer.

Over the next few minutes we’ll discuss issues such as: looking at yourself as an individual and not a statistic; making work schedule and income adjustments during treatment; making chemotherapy and treatment decisions when the choices are not cut and dried; ways to deal with the fatigue and side effects of chemotherapy. First, I’d like you to meet Ken. You’re in Arroyo Grande, California.

KEN:
It’s great to be here, Andrew.

ANDREW:
Thank you Ken. I know you’re just 39, pretty young when you think about cancer in general and certainly colon cancer. I know you’re married, so you have kids right?

KEN:
I have a daughter who’s 17 and a son who’s 14.

ANDREW:
Two children. And that certainly something we’ll want to talk about, how a diagnosis like this affects a family. Let’s get right into that, actually, as we learn about your condition. I understand it was just six months ago that you discovered you had colon cancer and not that it was just in the colon but had spread to the liver. How did you and your wife handle that diagnosis and maybe the kids as well? Emotionally. How did everybody deal with it? And then tell us a little bit about your treatment. …read the rest of this entry»

Saving lives in your own family

GINA:
Hello, and welcome to the American Cancer Society’s Cancer Survivors’ Network, a service created by and for cancer survivors. In Seattle, I’m your discussion leader, Gina Tuttle. Our topic, colon cancer for women under 50. On the phone with us are three colon cancer survivors from across the country, women who are all under 50 and who recently completed their treatment.

Over the next few minutes, we’ll discuss such issues as: family history as an indicator for insisting on a thorough examination; ways to deal with treatment fatigue, and making daily life normal; using the Internet for information on effective treatments; adjusting to the changes in body functions; feelings surrounding being misdiagnosed until cancer reaches a more advanced stage; and how to effectively talk to your children about your cancer experience. Let’s begin. Joining us today is Jeanne from Bellevue, Washington. Jeanne’s 46, and she had colorectal cancer in 1998. Jeanne, you had surgery?

JEANNE:
Yes, I did. However, I first had treatment where I had five weeks of chemotherapy, 24 hours a day. I carried around a fanny pack, it was called 5FU, along with five days a week of radiation.

GINA:
Before they even did the surgery?

JEANNE:
Yes, my tumor was seven centimeters, and only an inch into the rectum. So in order to try to preserve my rectum, they needed to try to shrink the tumor, which was very successful. One thing I want to remind people, if they have radiation, it does continue working four to six weeks after treatment. I was living proof of that. Two and a half weeks after my treatment ended, my tumor was still five to six millimeters. Two-and-a-half weeks after that, or five weeks after ending treatment at surgery, it had almost disappeared.

GINA:
That’s good news.

JEANNE:
Excellent news.

GINA:
You also had a resection then, using the stapling method?

JEANNE:
Correct. My tumor, like I said, was very low in the rectum. Had they not been able to use the stapling method, I would have had a permanent colostomy. But upon doing my surgery, and a quick freeze in surgery, they found that the tissue they had, while not having the full two centimeter margin that they like, was clean. So they were able to use the stapling method to put me back together.

GINA:
You are just sounding so positive about it. You’re talking about how well this all worked, but at the time, it must have been a lot to go through.

JEANNE:
It was. It was very frightening. I have lost both of my parents to cancer, although not colon cancer. My mother to ovarian, my father to lung. So, it was pretty frightening at the time it was being diagnosed. And then going through all the treatments and surgery, and to have eight of ten lymph nodes involved, and to go on to have more treatment. But I successfully completed it, and am doing very well at this time. …read the rest of this entry»

Friends help me ask for the help I need

ANDREW:
Hello, and welcome to the American Cancer Society’s Cancer Survivors’ Network, a service created by and for cancer survivors. In Seattle, I’m your discussion leader, Andrew Schorr. Our topic, women in their 50s, newly diagnosed with colon cancer. On the phone with us are three colon cancer survivors from across the country, women who are all in their 50s and who have been recently diagnosed or are currently in treatment for colon or rectal cancer.

Over the next few minutes, we’ll discuss issues such as different ways to deal with fatigue when you’re going through treatment; learning how to adjust your diet; the need to develop more colon cancer-specific support groups to give you help; ways to deal with the day-to-day uncertainty when you’ve been diagnosed with a serious condition such as colon or rectal cancer; the hassles from health insurance companies; and feeling blessed and fortunate, even while you’re facing cancer. Joining us today, first, is Jacy from Littleton, Colorado. Jacy I know you’re 53, married, and I believe you have two children and five grandchildren.

JACY:
That’s correct.

ANDREW:
And you were diagnosed with colon cancer just earlier this year, and you had surgery. Are you still going through chemotherapy?

JACY:
I just finished my last round of chemo on December 3.

ANDREW:
So, that was quite recent. But, of course, going through the chemo has caused you some extreme fatigue. And, there are a lot of things, I’m sure, that you’d like to accomplish that you find you have to stop or take breaks and can’t plow through it like you used to. How do you deal with the fatigue?

JACY:
The fatigue has been probably the worst for me. I have to stop what I’m doing and rest, and that bothers me. I’ve always been very active, very healthy. And just vacuuming one room, I have to stop, sit down, rest. I’ve had to take two, one or two naps each day, just to get through the day, and then sleep at night. It’s much more than I normally would sleep. So, that’s really been the hardest part for me, other than some of the other side effects from the chemo. …read the rest of this entry»

Gaining perspective in a general cancer support group

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, breast cancer for women over 55. On the phone with us are four breast cancer survivors from across the country, women who are all over 55 and are either currently in treatment or have recently completed it. Over the next few minutes we’ll discuss issues such as dealing with the impact of treatments on your daily life, how having support helps you tolerate the treatments better, making treatment choices, reconstruction as part of treatment, and the importance of getting out and not sitting at home. Let’s begin. Joining us today is Pam from Lansdale, Pennsylvania. Pam, I know you’re 62. You’re a widow with three kids who are grown up and out of the house, and I know one of those children is dealing with breast cancer herself. Is that right?

PAM:
Yes, that’s right.

ANDREW:
She’s in California. You’re in Pennsylvania. I understand that, initially, you were diagnosed with breast cancer in 1996, had a mastectomy, and chemo.

PAM:
Right.

ANDREW:
And then, six weeks ago, three years after the initial diagnosis of breast cancer, you found out that in the scar tissue there’s malignancy, and you have cancer again. How are you doing?

PAM:
A little better than a couple of weeks ago, because, Andrew, they’ve decided that this is just a local recurrence and not a whole new invasion, and that some radiation ought to be quite effective in clearing this up. And this also makes me feel better, because while there are side effects to radiation, my normal daily routine will not be interrupted. I can still go back to California to help my daughter out when she has reconstruction. So, I’m feeling much more positive now. …read the rest of this entry»