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Breast Cancer Survivor Roundtable

Many people know that one in every eight American women will develop breast cancer over her lifetime.


Young African-Americans are at an increased risk. In the year 2000 alone, more than 180,000 women will be diagnosed with the disease. But the good news is that if the cancer is localized, as many as 97% will survive. That's up from 72% 60 years ago.


There are two million breast cancer survivors in the US today. Three of them--Jennifer Johnson of Olathe, Kansas; Ivis Febus-Sampayo of Brewster, New York, and Peg Gray of Pittsfield, Maine--visited The Early Show to talk about their experiences.


Every breast cancer survivor has a story to tell about her disease and each story is like a fingerprint--as unique as the woman telling it. The elements are similar: fear, support, courage, caring, determination, strength, resolve, grief and recovery but the circumstances vary.


Different People, Different Stories



The Early Show's breast cancer survivor roundtable is made up of a young woman in her 20s who was diagnosed when she was pregnant with her first child, a woman in her 30s whose months of complaining about breast pain was dismissed as post-nursing tenderness by her doctor, and another woman in her early 50s whose breast cancer gained her the gift of a deepened intimacy with her husband, but lost her a best friend.


Each of the panelists experienced a defining moment--an emotional turning point--that transformed her from victim to fighter. Each understood early in her therapy the need to take control of the treatment, to become an active partner of the cancer team.


Jennifer W. Johnson, 28, is the mother of a 9-month-old son, Parker, and a manager with a telecommunications company. "November 22, 1999--just three days before Thanksgiving--is a day I will never forget," she says. "I was 27, 22 weeks pregnant with my first child, and diagnosed with breast cancer."




Jennifer's Turning Point



Her defining moment finally came when Parker was born--five weeks early--the day after her last chemotherapy treatment. "Through the entire treatment process, I had asked God for a sign that our son was unaffected. When Parker was born, I was completely bald from the chemotherapy, and he had a full head of hair. This was the sign that I had been waiting for."


In August of 1999, Jennifer had passed out roses to breast cancer survivors who ran in the Komen Kansas City Race for the Cure. She had no idea that just three months later, she too would be a survivor. "The Susan G. Komen Foundation was my sorority's philanthropy, so I have been involved with breast cancer awareness campaigns since 1992," she says. "Because of this awareness, I have always checked my breasts and, i early November, I found a lump in my left breast that didn't go away. When I showed my obstetrician, she ordered a sonogram and mammograms on both breasts and what they saw was very suspicious, so I was quickly referred to a surgeon who performed a biopsy."


In December 1999, Jennifer had a modified radical mastectomy and lymph node dissection. "When the surgeon called to tell me that there was no cancer in the 19 lymph nodes he removed, we were relieved, as this is typically the first place that breast cancer will spread," she says. "I also had to undergo three months of chemotherapy since the tumor was aggressive."


Her biggest concern through all of this was for her unborn child. "I had prided myself in my pregnancy for doing everything I possibly could to make sure the baby was healthy," Jennifer says. She said a national registry only had 40 cases on file of women who had undergone chemotherapy for breast cancer while pregnant, but all of the babies had been born healthy.

"All children are miracles, but we truly feel that he is a special gift from God," Jennifer says. "I would not have been able to survive this ordeal without my faith and the support of my husband, parents, family, friends, co-workers and medical team. My husband, Matt, never batted an eye after they removed the bandages from my mastectomy. He still makes me feel like the most beautiful woman in the world and supports whatever decision I make about reconstruction."


Jennifer has some advice for people newly diagnosed with breast cancer. "Take an active role in the decisions about your treatment," she says. "You need confidence in your doctors, and should certainly consider second or third opinions before proceeding with any treatment or surgery. Be informed, but once you have gathered all of the information you need, let it go."


Other survivors can also be a big help, she says. "So many women have been down this road before you and there are 2 million survivors. Attend support groups if this will help you."


Also, don't be afraid to ask for help from loved ones, Jennifer says. "With the support of these people, it is bearable. Let friends and family lessen the burden with meals and anything else you need. It helps them to help you. If your treatment includes chemotherapy, just view the hair loss as the medicine working. It will grow back! While I would not choose to go through this again, I now appreciate each day with my family even more."


Jennifer's story highlights how breast cancer can affect even young women. "I am actively campaigning to everyone I know, but especially those under 40, to check their breasts monthly. Monthly self-exams can mean the difference between life and death," she says, as they did in her case. "I included shower cards in my Christmas letters last year and completed my first Race for the Cure as a survivor in August 2000. It is too soon to tell if my battle with breast cancer is over, but I know that my actions have given me th best chance to live to know my grandchildren."




Ivis' Story: Helping Others



Ivis Febus-Sampayo, 45, is the director of SHARE, an English/Spanish group for breast and ovarian cancer survivors.


Her turning point also involved her son. "One day my eldest, Christopher, who was only ten at the time saw me going into the bathroom. I was trying to put on makeup to hide some of the effects of my treatment. When I came out, my little boy held me in his arms and said, 'You look beautiful with or without hair.' That moment changed my life forever. I realized that as frightened and as devastated that I might be feeling, my child must have been feeling the same or worse."


Ivis found his outlook enlightening. "He had no idea what was going to happen to his mother and yet he found the inner strength to support and give hope! I decided right then and there that I would not only survive, but that I some how must help other women that would be diagnosed with this illness."


"I was diagnosed 7 years ago--October '93. I was 38 years old and had just weaned my youngest son. Actually, I was misdiagnosed by my ob/gyn doctor and although I complained for 18 months and gave him all the 'red flags' of information, he still did not listen and assumed that due to my age there could not be the slightest change that I had breast cancer," Ivis says.


"He was wrong," she says. "Due to amount of time that had passed, I was diagnosed with stage IIa breast cancer and had a lumpectomy and very rigorous treatment of chemotherapy, radiation and tamoxifen. I was devastated, but kept thinking and still do, that I must survive for my family."


Ivis was very ill throughout her treatment. "I worked at not looking so ill in order to be there for my boys, who obviously were afraid for their mother. I felt as if I lost a good nine months of my normal life with my oys. I could not do everything I normally did, and sometimes I could not do anything at all."


Losing her hair was also difficult, but her husband helped her cope. "He said, 'Ivis, it's the disease you have to fight, not losing your hair.' So he took me into the kitchen and he cut off the rest of my hair. We both cried but it was such an intimate, caring moment."


Within a month, she started to coordinate a breast health workshop in her area with a local breast cancer organization. "I spoke out publicly about breast cancer at the workshop and connected there with other survivors including one of Christopher's teachers. We started helping other neighbors with this disease, and when I finished my treatment, I started working with one of the organizations I had volunteered with. I had volunteered on my good days with the American Cancer Society and New York Race for the Cure."


After one year of working with the New York Race for the Cure, Ivis started with SHARE's Latina program. "Hre I had been able to help women, many who have no resources to help themselves. Within the four years I have worked at SHARE, self-help for women with breast and ovarian cancer, the Latina program has grown enormously and has reached out to other cities, states, and even other countries. We have recruited more volunteers and have gotten involved in all aspects of breast cancer issues. I have gone to the White House to speak with vice-president Al Gore and his wife Tipper Gore, received various awards and participated in various media and outreach events," Ivis says.




Peg's Story: 'Look Forward to Life'



Peg Gray, 52, was a decorative painter and woodworker at time of diagnosis, and is now a community moderator at IVillage.com.


Peg had a struggle before reaching her turning point. "Some of the worst emotional turmoil I experienced was trying to understand why my best friend couldn't be there for me when I needed her most. I had some gloomy, sad days for a while. Until I finally realized it was her problem, not mine. I needed to let it go and get on with living. Once I was able to do that, I found an inner peace which is difficult to describe."


Peg was diagnosed in June 1998 at age 50, following a routine annual mammogram. "I had not found a lump, so was incredibly surprised when I was told there was a spot that was 'a probable cancer' on my films. My surgery consisted of a lumpectomy rather than a mastectomy because of the small size--eight millimeters--of my tumor and axillary lymph node removal. I followed the surgery with a total of 6 months of chemotherapy and seven and a half weeks of radiation treatment."


Peg's family has been a big help, she says. "I have been married to the most wonderful man for 30 years. We have two grown children--a daughter, 27 and a son, 24--and an adorable grandson who is four. Our son was still out of state at college when I was diagnosed, and our daughter was living locally, but not with us. We live in a small town in central Maine where we have been most of our married life. My family has been tremendously supportive."


"This past two years could have been unbearable without their love and support," Peg continues. "I am forever grateful for them. My husband and I became very, very close. He gave me a pin for Christmas the year I was going through treatment. It's a little piece of costume jewelry of a little kid from the back--she's walking away. When you turn it over on the inside it says: "Don't look back." It meant forget the past, forget the diagnosis, forget the treatment, Let's just look forward to life. That little pin meant more to me than I can express."


On the other hand, her best friend was not able to deal with her cancer at all. "She lives about two hours from me, we talked on the phone at least once a week and saw each other every three months. hfelt sorry that it happened. But I needed to talk about it, to discuss treatment options. Any time I brought up that kind of thing she clammed up, or had to leave."


Eventually she slipped out of Peg's life. "I really needed her. It bothers me to think that the one time I needed her most, she wasn't there. Sometimes you discuss with your friends that you don't want to trouble your family with. I might have said to her, 'Oh, God, I don't want to die,' but there was no way I was going to say it to my husband. She and I had known each other for 17 years. It was like she died. That's the worst thing that happened to me."


Peg says she hopes her friend has support if she experiences something similar. "Some of the worst emotional turmoil I experienced was trying to understand why she couldn't be there for me when I needed her most. I think she was afraid. We both knew women who had died. There was a fear inside of her of losing me to a terrible death."


Peg now worries about her daughter's future. "I feel terribly guilty at times about increasing her risk for breast cancer by virtue of my own diagnosis. She had undergone breast augmentation surgery just two months prior to my diagnosis. I continue to agonize over whether or not she would have gone through with that procedure if we had known about me," Peg says.


Peg's new life on the Web has brought her new hope. "My cyber-friends on the message board have been the most incredible 'life-savers.' Each and every one of them knows the devastation of hearing a doctor say 'You have breast cancer.' That single commonality has bonded us forever. They are the best!"



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