My name is Edward, my nickname is Eddie and that’s how you’ll hear me being referred to on the rest of this tape. I’m forty-two years old, I live in Cleveland, Ohio, and as a bit of personal information, I’m married and we have three kids, three dogs, and children we’re working on that for the future. Because of my experience with cancer, I actually had to take time off from thinking about having children, because they said during treatment, during chemotherapy, I was told it would be best to you know, wait until I’m done with my treatment.
My story actually begins in 1997. I started having I guess the word would be diffuse abdominal problems. I had mild abdominal pain, irregular bowel movements, and I knew something wasn’t quite right. At first I thought maybe it was working too hard, I had some abdominal things going on because I’m just so busy and running around. I’m in the speaking business and I have to travel a great deal to do my programs, and I thought that was it. So I decided to see my doctor, and he told me I had irritable bowel syndrome. And basically did nothing more. And I thought, well, that’s probably it, from all the busyness I’m always involved with, even though I always took care of myself well, ate well, exercised, got enough rest, managed my stress pretty well. Then the abdominal problems got worse and worse, and I went back to my doctor and he told me I probably have problems dealing with stress, even thought I’m in a field where I teach stress management. I thought that was a bit odd, but he didn’t pursue it any more. …read the rest of this entry»

Hi. My name is Donna. I’m 46 years old and I’m married, with a daughter. I live in Central New York. September 21, 1992, my daughter was diagnosed with Stage IV rhabdomyosarcoma, which is a soft tissue tumor which normally affects children under the age of 3, and she was five years old at the time. She was given a very grave prognosis and we were told she most likely would not see her tenth birthday. She was immediately started on high dose chemotherapy to shrink her tumor, which had already metastasized to her lungs. She was very, very sick but she was a very brave girl. We continued with the chemo until the original tumor, which was on her pubic bone, shrank enough for her to have surgery, which ended up being about five months into her therapy. Quite honestly, I thought my world was crumbled, but that sure wasn’t going to last long. I had to help my baby, and I had to fight. And that’s exactly what we did. There’s nothing worse than watching your child suffer, and know there really is so little you can do, except to pray and keep her comfortable, and very obviously, rely on your doctors. And I have to say that the cancer center that we went to were unbelievable. They were absolutely so wonderful. …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»

Participant introductions

My name is Dennis and I am a six-year cancer survivor. During the next few minutes you will hear segments from six cancer survivors in reference to: what they didn’t tell you about treatment.

Wendy, diagnosed at age 35, is an eight-year survivor of lymphoma. She is a doctor and was never told that chemo caused major sleep problems and short-term memory loss. Wendy has written several books on how to cope with cancer. Elizabeth, a seven year survivor of breast cancer, diagnosed at age 57, was never told your immune system is challenged from chemo, and essentially you don’t have one. Dick, age 59, is a 23-year survivor of colon cancer with a recent recurrence. He is in broadcasting and communications and is co-moderator for this program. Dick will discuss emotional impacts of the diagnosis of cancer, something he was not told about. Nancy, age 55, a healthcare professional diagnosed June of 1998, suggests you gather all the information you can. Because of this, Nancy decided against radiation therapy as part of her treatment for breast cancer. Michelle, 32 years old, a four-year survivor of a very aggressive form of leukemia, was never told that the impact of chemo on her body would ruin her chances to become a mother. Andrew is a two-year survivor of CLL, which is leukemia. He is in broadcasting and is the moderator for this program, and has not had any kind of treatment. Andrew is gathering all the facts he can on CLL, so if he has to start treatment, he will be well informed and make the best possible decision he can.

The information given is intended as an educational tool only to acquaint the listener with different views on how to cope with cancer. It is unique due to the fact that it is from cancer survivors who have “been there and back.” It is not the opinion of the American Cancer Society. Accordingly, the information should not be substituted for the advice and treatment of a physician or other appropriate healthcare professional. Because your health is ultimately your responsibility, the participants hope the information given will enable you to fully participate in any decisions regarding your particular cancer. …read the rest of this entry»

Glenda Durham:
Hello and welcome to the American Cancer Society’s Cancer Survivors Network. I’m Glenda Durham, your host. Today I will be talking to three women who were caring for their babies and dealing with cancer at the same time. As a cancer survivor myself, I am pleased to be your host for today’s conversation as we talk about: asking for help without guilt or shame; dealing with the emotional side of not being able to care for your baby; keeping a positive attitude for yourself and your family; taking care of the needs of your children when you are sick; finding support networks to help you and your family; dealing with the fear of not being around to see your children grow up; talking about your cancer and educating others about it. Our first guest today is Angie. She is a 35-year-old cancer survivor from Wisconsin. Angie is married and has two children, a girl age nine and a boy age six. Welcome to the program, Angie.

Angie:
Thank you very much.

Glenda Durham:
In 1992, two weeks before the birth of your son, you were working in a doctor’s office and you mentioned that you had a lump in one breast.

Angie:
Yes.

Glenda Durham:
A nurse friend thought it was probably just a clogged duct.

Angie:
Yeah. That’s kind of what she thought. [laughs]

Glenda Durham:
Well, you know–

Angie:
The doctor was busy that day, so she told me not to bother him.

Glenda Durham:
Oh! Don’t bother him. It’s only a clogged duct.

Angie:
Yeah.

Glenda Durham:
OK. And when your son was born, he had problems nursing on that side.

Angie:
Yeah he did, and again I thought it was the clogged duct.

Glenda Durham:
Right. But then he wouldn’t nurse there at all. …read the rest of this entry»

Paul Berry:

Hello everyone, and welcome to the Hilton Washington and Towers on National Cancer Survivor Day 2002. I’m Paul Berry, your host. As the opening event for a two-day Survivorship Conference, this evening’s Town Hall Meeting, entitled “Resilience Across the Lifespan,” will start an important dialog, we think, about what we can do better to promote optimal health for cancer survivors. This evening’s Town Hall Meeting is co-sponsored by the American Cancer Society, the National Cancer Institute and the National Coalition of Cancer Survivorship, and is being broadcast live on the Internet through the American Cancer Society’s Cancer Survivors Network. This broadcast is being recorded and will be posted on the ACS Web site tomorrow. This broadcast will become a permanent part of the Cancer Survivors Network, which houses the Internet’s largest library of recorded discussions and personal stories of survivors and caregivers. And we all know how important it is when we hear other stories that give us a boost and help us out. So you will be able to go to that network from time to time at your leisure, and I promise you, you will be inspired.

Our Town Hall Meeting this evening is divided now into two parts. In the first hour we have three distinguished speakers from our sponsoring organizations. These organizations are dedicated to enhancing the length and quality of life for the estimated nine million cancer survivors in the United States alone. We will hear how they are working to advance the science, public policy, services and understanding of cancer survivorship issues. And of course, we will take your questions both here in Washington and around the world. If you have them, by all means, don’t hesitate to let us know what’s on your mind.

In our second hour I’ll host a discussion with four special guests, all survivors and caregivers. Our topic is resilience, and we’ll take your questions and comments. And as a caregiver myself, I am very pleased and honored to be your host, and hope that the discussions will inspire you both personally and professionally.

Now, to our speakers. I will introduce our speakers one at a time and they will then give their comments, and then you will have a chance to ask questions if you so desire, and then we will move to the next.

Dr. Julia Rowland has been Director of the National Cancer Institute’s Office of Cancer Survivorship (OCS) since 1999. Before that she was Director of the Psycho-Oncology Program at the Lombardi Cancer Center at Georgetown University. She trained and worked for 13 years in Psycho-Oncology at Memorial Sloan-Kettering Cancer Center in New York City. While there, she helped to develop, and was the first Director of their Post- Treatment Resource Program, an innovative center designed to provide a full range of nonmedical services to patients and their families after treatment. Dr. Rowland’s research has focused on both pediatric and adult cancer survivors, and she has published extensively on women’s reactions to breast cancer, as well as the role of coping, social support and developmental stages in a patient’s adaptation to cancer. Dr. Rowland is active in championing both public awareness of and research addressing cancer survivorship issues. Please give a big round of applause for Dr. Julia Rowland. …read the rest of this entry»

Glenda Durham:
Hello, and welcome to the American Cancer Society’s Cancer Survivors Network. I’m Glenda Durham, your host. Today I will be talking to three women and discussing their perspectives on reconstructive breast surgery. As a breast cancer survivor myself, I am pleased to be your host for today’s conversation as we talk about: being your own advocate through your diagnosis and treatment; dealing with the physical and emotional effects of mastectomy; making choices about whether to have reconstructive surgery; getting the information you need to make informed choices about breast reconstruction; and the importance of support groups for both breast cancer and reconstructive surgery.

Our first guest is Elaine, a cancer survivor from New Hampshire. Elaine is 36, married, and has three children. Thank you for joining us today, Elaine.

Elaine:
Hi, and thank you for having me.

Glenda Durham:
In 2000, you noticed a lump in your breast.

Elaine:
Yeah.

Glenda Durham:
Your doctor was not responsive to your concerns and suggested that the nodes were related to a case of bronchitis?

Elaine:
Correct. Yes. I detected the lump, and when I called the office they said to put a heating pad on it and that they thought the swelling and the lump and the nodes were extended due to the bronchitis, but it never went away. Three weeks went by, and then I just kept pursuing it more and more until I actually got somewhere.

Glenda Durham:
So you insisted on being seen?

Elaine:
Correct. Yes.

Glenda Durham:
The doctor confirmed the presence of a lump.

Elaine:
Right.

Glenda Durham:
You insisted on an immediate referral to another doctor who gave you an ultrasound and mammogram the next day. This confirmed that you had breast cancer.

Elaine:
Yeah, what had happened–my original doctor, even though with the lump, when I had gone to see him finally at the office the second time, when I called and insisted to see somebody else–he did say, “Yes, you have a lump.” And then he wanted me to see a specialist, but wait another thirty days, and it was around Christmas at the time, I said, “No.” You know, I think deep down I really knew what it was. …read the rest of this entry»

Symptom and Description Nausea (feeling queasy or sick to your stomach) and/or vomiting (throwing up) may happen from your radiation therapy. It is most likely if you get radiation to your chest, stomach, abdomen, or spine. Nausea and vomiting are rare when other parts of your body are treated. Nausea and vomiting may start within 1 to 2 hours after your radiation treatment and may last for several hours.

Learning Needs Nausea and vomiting are very unpleasant. Either or both may be barely noticeable or may be severe and cause you to be unable to do things that are important to you. In addition, if you vomit a lot you can get dehydrated and have other problems from losing body salts.

You should call your doctor or nurse if:

• You have nausea that lasts for more than a few days, or if nausea keeps you from doing things that are important to you.
• You vomit more than once or twice a day for 2 days.
• You cannot keep any liquids (such as water, juices, soda) or food down. …read the rest of this entry»
  

Michael Samuelson:
Hello and welcome to the American Cancer Society’s Cancer Survivors Network. I’m Michael Samuelson, your host. Today I will be talking to three survivors of cancer with terminal diagnoses. As a breast cancer survivor myself, I am pleased and I am honored to be your host for today’s conversation as we talk about: working with your doctors to stay on top of the disease, coping with multiple types of cancer, raising teens while living with cancer, maintaining relationships with partners and children while living with terminal cancer, making the decision to stop treatment, and giving importance to the end of your life.

Our first guest is Ric, a 57-year-old survivor of thyroid cancer from New Hampshire. Ric is married and does not have any children. Welcome to the show, Ric.

Ric:
Thank you, Michael.

Michael Samuelson:
Now, Ric, according to my notes, you were diagnosed with thyroid cancer in 1995 after a routine physical where you showed a doctor a lump in your throat. Tests and surgery confirmed that you had poorly differentiated follicular carcinoma with Hurthle cell variant–a relatively serious type of thyroid cancer. Your tumor, which was eight by ten centimeters in size, had grown into your jugular vein. So the doctors resected the vein during a long, complicated operation that left you with bilateral vocal cord paralysis. Shortly after, you had an emergency tracheotomy in the spot where your thyroid had been resected. You lived with a breathing tube in your neck for three or four months, during which time your pharyngeal nerves healed. The tube was removed and you regained your ability to speak. You also underwent radio iodine therapy, a particularly difficult treatment. And again, thanks for joining us today, Ric.

Ric:
You’re welcome.

Michael Samuelson:
Also joining us is Catherine, a 52-year-old cancer survivor from Ohio. Catherine is married and has two children at home, a son who is 17 years old and a daughter, 16. Welcome, Catherine. …read the rest of this entry»

Dick Foley:
Hello and welcome to the American Cancer Society’s Cancer Survivors Network. I’m Dick Foley, your host, and today I’ll be talking with three cancer survivors, who all became divorced following their bouts with cancer. As a cancer survivor myself, I’m pleased to be your host for today’s conversation as we talk about these issues related to divorce and cancer. First, finding support and care as a cancer survivor when those close to you don’t, or for some reason can’t provide it; the effects of having cancer on your relationship with your spouse, and for that matter, other members of your family; dealing with the combined emotional effects of divorce and other losses in your life and being a cancer survivor; dealing with the fears of cancer returning, and that includes the hypersensitivity to any physical symptom or ailment, thinking it might be a recurrence; learning to slow down and let other people help you while you’re in treatment; and finally, using counseling to help you get through the difficult times.

Our first guest today is Pat, who is a cancer survivor from Missouri. In April of 1991 Pat began to experience hoarseness in her throat. This lasted for about three weeks. She then saw her doctor, who first gave her antibiotics. When her condition remained unchanged, he sent her to the Ellis Fischel Cancer Center in Columbia, Missouri, and Pat, am I saying that right?

Pat:
Yes, you are.

Dick Foley:
All right, and they performed a biopsy. The results showed that Pat had throat cancer, a malignant tumor on her vocal cord. Pat then had 32 radiation treatments over a seven-week period and is now cancer-free. Pat was also a caretaker for her father, who died of throat cancer when he was 51. Pat is now 57 years old and was divorced in 1993. She has three adult children and is retired. Pat, thanks very much for joining us today and sharing your story. …read the rest of this entry»