A funny thing happened on the way to my mammogram

All Photos by Chris Jensen

Editor’s note

In our feature this week, some of the women whose experiences were included in the article were not photographed due to scheduling conflicts. Conversely, some of the women who were photographed agreed spontaneously to do the shoot. I encourage our readers and breast cancer survivors to share their story online under our comment section for the feature. For the women who participated in the shoot and/or shared their stories, thank you.

Four women in Ventura County, chosen at random, who have had or currently are in treatment for breast cancer have a lot to say about coping. Their stories are as different as their individual battles with the big “C” but they all learned some universal truths. Wisdom earned the hard way, through personal experience. Here are their stories, generously provided with candor, humor, courage and an absolute refusal to view themselves as victims.

All of the women were diagnosed with cancer at a very young age, mid-thirties to very early forties, and they all have faced multiple episodes of cancer or the spread of it to other areas. Even in the only case where the first diagnosis was given at the earliest sign of cancer, stage one, there was recurrence. Multiple surgeries and complications were also part of each woman’s journey. Each woman has coped with surgery, radiation and/or chemotherapy. For some, the diagnosis came out of the blue. Others knew something was very wrong. Not one of these women initially learned of the lump in her breast through a mammogram. Physical examination and physical appearance were the very first signs of a problem.

Anne’s story: Being bald was liberating

Anne (not her real name due to employment considerations) of Ventura said that when she was 35, cancer was certainly not on her mind. Quite the opposite. “My husband and I were feeling really good, so we decided we’re going to get into shape,” Anne said. “I made an appointment with a doctor to have a physical. You see the nurse practitioner, which was fine with me.”

“I asked her when I needed to get my baseline mammogram done and told her there was no history of cancer in my family,” Anne said. “So she said, OK, not until you are 40.”

During the routine breast exam, Anne said the nurse felt a lump that Anne had disregarded for a while. Anne did get a mammogram, and there was a spot. The lump was confirmed in an ultrasound. Anne said she still was not alarmed because the doctors said they did not know what it was. After a lumpectomy was performed, Anne was told the mass was malignant.

“I went back to surgery a while later, and they removed the lymph nodes,” Anne said. “The tumor was stage one, and none of my lymph nodes were affected.” Radiation therapy was scheduled. That is when things became more difficult.”

Having met her primary care doctor in person accidentally during hospital rounds after her second surgery, Anne said she was not impressed with him. “He spent, like, a total of five minutes with me,” Anne said. Up unti l then, Anne had only seen the nurse practiti oner, even after the cancer diagnosis. Anne said her doctor fai led the next test of bedside manner when a complicati on arose.

“I then developed lymph edema,” Anne said. “The lymph nodes get blocked [during radiati on] and the fluid bui lds up. My whole arm and hand were swelling. It felt like it was going to explode because it was so tight.”

Anne went to see her doctor, and his reacti on left her dumbfounded. “His response to the swelling in my arm was, ‘It’s a little inconvenient, but you can live with it.’ ”

Anne reported this episode at her next support meeting and was deluged with other referrals. She then received physical therapy and exercises that alleviated the problem. “I didn’t have to live with it,” Anne said.

Anne believed that her breast cancer was merely an episode in her life that was completely in her past. For four years, all of her exams and mammograms were clear. Then, four and a half years after her treatment, her mammogram revealed a spot in the same locati on as her pri or lumpectomy.

Now with a new physician, Anne said she was referred to a different surgeon, a female. “I’m thinking, she is going to be more diplomatic, a lot more sensitive,” Anne said. “She was horrible. She had been telling me all along she thought it was scar tissue, don’t worry about it.”

But Anne was worried and went for a needle bi opsy. The surgeon was not diplomatic. “She said, ‘Well, it’s cancer. It’s back. We were wrong about the scar tissue. It’s cancer.’ I didn’t hear anything after that.”

Anne fled the office and proceeded to have a complete meltdown. After finally pulling herself together, Anne returned to the surgeon’s office with her husband at her side. “She told me I had to have a mastectomy, there are no opti ons.”

Anne said she was told to schedule the surgery right then and there. But Anne wanted a second opini on.

A consultati on with an experienced surgeon at UCLA Medical Center was set up, although Anne’s insurance company refused to pay for it. Anne said they finally caved two days before the appointment. A radical mastectomy followed by chemotherapy was recommended, with reconstructi on at the same time. So Anne said that was what she did to save her life.

With a heavy dose of chemo delivered every three weeks, Anne continued to work full time. “Then my hair started falling out, but I was fine with that,” Anne said. “So I went to Supercuts and told them to shave my head. It was a way of taking control. I loved being bald, it was liberating.”

Today, Anne has been cancer-free for nine years. She st i ll considers her advocate husband, who ran interference numerous times with the insurance company and doctors, to be her hero.

Donna Iverson: My breasts are not what make me beautiful

Donna Iverson is a single mother of three; the oldest is now 12 years old. Donna knows what it feels like to lose her mother at a very young age. “I have had mammograms since I was 30 years old because my mother was diagnosed with cancer at age 42,” Donna said. “I was first diagnosed at age 42.”

Despite being di ligent about getting annual mammograms, Donna said she felt a lump and spotted the seri ousness of the problem herself. “My lump was large and it was growing,” Donna said. “I felt a burning pressure in my breast. It was so large and so hard, and it was growing so quickly that I went in a little bit early for my yearly mammogram. I was getting a little freaked out.”

Donna said her doctor did not feel the same urgency. “I was told it was probably nothing, just a little calcificati on. I said I do have a fami ly history. My mother was very young when she was diagnosed; she didn’t survive.”

When Donna finally got the diagnosis, even she was startled. “I had cancer in my left breast. I had stage 3, and it was invasive, as well as duct carcinoma in situ. I had two types of cancer, and it was growing towards the lymph nodes.”

Donna said her doctor recommended a mastectomy but that was not good enough, she told her physician. “I think you need to take them both,” Donna said. “I thought if it’s spreading, I’m nervous. My mother had one breast removed and then a year later she had to have the other breast removed. I would just feel better if they were both removed.”

So that is what the surgeon did even though the other breast had no sign of cancer. “The pathology report came back,” Donna said, “and there was, in fact, cancer in the other breast that had not been detected. A really good move on my part.”

Donna said she had intended to have the surgery, do the chemo, do the radiati - on, and then have reconstructive surgery. However, whi le she was going through her chemotherapy, Donna developed an endocrine disorder that took three years to properly diagnose.

Reconstructive surgery had to be put on hold. “By the time I got well, my husband and I got a divorce,” Donna said, “and I had three little kids to raise on my own with no support from him.” So Donna has sti ll not had the time or money to do such extensive surgery with such a long recovery peri od.

Donna is phi losophical about the situati- on. “I’ve had to become happy with my flat self,” Donna said. “I realized that my breasts are not what make me beautiful. I just compensate by wearing a lot of black. I look good in black.”

Donna teaches water aerobics at the YMCA in Ventura and briefly taught a class just for breast cancer patients. But there were too few students. “I do think people may have been hesitant to get into a bathing suit,” Donna said. “That’s part of the reason why it was so important to do it.” Donna said she may give the class another try in the future.

Donna liked her surgeon so much that she is now working for him. And Donna is cancer free.

Kate Carstensen: An upbeat downwinder

Kate Carstensen recently moved to Simi Valley from upstate New York. She received her cancer care in New York and tells of her first breast cancer diagnosis at age 41. “I had noticed a lump in my left breast, and it was growing rapidly,”

Kate said. “My physician examined it and said, ‘I don’t think it is anything but we’ll watch it.’ It didn’t show up on a mammogram. Three months later, we did a sonogram. There it was.” It had reached stage 3.

That was not Kate’s initial encounter with cancer. She first had another type of cancer diagnosed in 1976 at age 34, and yet another kind in 1977. Kate had grown up in Salt Lake City and moved to Richfield in southern Utah in 1961. At that time, the temperature of the Cold War was rapidly rising, and the atomic arms race was going full ti lt. Above-ground nuclear testing was finally banned in 1963, and until then had been saturating unknowing residents who were downwind of the fallout each time a bomb was tested. Kate said she does not think her own cancers were caused by the radiati on but does believe the cancers suffered by both of her daughters were the result of being “downwinders.” Her daughters are also now cancer survivors.

In 2001, a few months after getting married to the man of her dreams, Kate said she was diagnosed with breast cancer again. “I really didn’t know if I had the fight left in me for that fourth time,” Kate said. “My doctor said I might want to think about it, but I said, ‘No, let’s just put on our big-boy boots and get it done.’ ”

Kate said she had lost her hair three times before, and the last time she had chemo, only about half of it grew back. “I did not want to lose another hair, so I just did the radiation. For my radiation, I just knew it was my way out, and without it, there was no way out.”

Kate and her husband are presently looking for a boat slip somewhere nearby on the coast so they can retire. She is currently cancer-free.

Kristen Perry: My dead animal theory and the mental game

Kristen Perry grew up in Ventura and returned there after her college years. At 47, Kristen sounds like a teenager, her voice bubbling with enthusiasm and wisdom beyond her years. She wants to tell her story to anyone who will listen and never tires of helping others who are facing their first diagnosis.

Kristen’s young niece actually was the first to notice her cancer. Having no children, Kristen said she is very close to all of her nieces and nephews. On a family vacation in 2005, Kristen had volunteered to get her 3-year-old niece ready for dinner. They jumped into the tub together, and her niece pointed out something on her chest. It was a small indentation.

“Nothing alarming, and I had never noticed it,” Kristen said. “It was very strange, and she saw it right away.”

After an immediate biopsy by her doctor, Kristen learned it was cancer. “When I went to my scans, it had already metastasized,” Kristen said. It was stage four. “I have cancer of the bone and cancer of the ovaries.”

Then, cracking wise on a very difficult subject, Kristen rises above the discomfort. “I did have my ovaries removed.” Kristen said, “I’ve got a few more body parts I can do without, but then when it gets to my heart, I’ll say, ‘Oh, I’m in trouble.’ ”

“I was 43, and I’ve had mammograms every year,” Kristen said, “but I have very dense breasts, and sometimes that gets in the way of detection. I did my first round of chemotherapy in 2005. When I’m off chemo, I don’t do so well; it had started to spread a bit more. So I’ve been on another round for a year and a half.”

Kristen turned to the power of knowledge as her strongest weapon against cancer. “I did my homework,” Kristen said. “I tell people it’s a horrible, horrible illness. There is nothing good about it, not one thing. But the choice that I get is to choose how to deal with it. And I choose to be proactive, take care of my health.”

Determined to learn where the very best care was available, Kristen visited Sloan-Kettering in New York and the City of Hope in Pasadena. “I am at the City of Hope because I think anybody with metastatic disease should go to a top facility, one that is recognized by the National Cancer Institute.”

When her doctors gave Kristen pamphlets and papers about other patients, she refused to read them. “I was inundated with all kinds of literature,” Kristen said. “It may sound rude, but I didn’t want to read about anybody else’s story, I just wanted to know what works.”

Kristen said she knows herself well enough to act in her own best interests. “Knowledge to me is power and comfort because then I know I can do something,” Kristen said. “The deal is, if you choose to do nothing and be very passive, then you don’t get the right to complain.”

Even her doctor understands Kristen’s need to be completely informed. “My oncologist and I have a joke about me when he knows I have researched everything and I have already made up my mind,” Kristen said. “I tell him that I am an oncologist; all I need him for is his medical license.”

Kristen has not stopped at traditional medicine and goes to an herbalist in Santa Barbara. “It’s my ‘dead animal’ theory,” Kristen said. “I’d wear a dead animal around my neck if I thought it would help. The funny thing about my herbalist, both of his parents are retired oncologists.”

Kristen said she has a deep need to help other cancer patients so she has two projects brewing. On the back burner is writing a pamphlet. “I really want it to be the Cliff Notes to cancer,” Kristen said. “Because when someone is diagnosed, they are overwhelmed.”

But the big project that is currently taking up nearly every minute of Kristen’s life is the benefit concert, Rock the Cure, which she is underwriting herself. It will be held this weekend, on Saturday, Oct. 4, 2008, at the Ventura Theater.

“My husband was in a band that was fairly popular years ago,” Kristen said. “It was funny, because when I even spoke about a reunion it was like asking Paul McCartney to ask The Beatles to get back together. No way.”

However, a fundraiser for cancer received a very different and immediate response from all seven bandmates. The group is called Lion I’s. Kristen said she wanted complete control of the money to guarantee that it goes where she wants to direct the funds. “I want to do some children’s work; I want to give some to the [Susan G.] Komen fund,” said Kristen, “and I want to keep some money local for those who cannot afford treatment because cancer is very expensive.” By the way, Kristen is a financial planner.

It is not unexpected that Kristen would want to reach out to other patients. “Cancer patients are some of the most amazingly resilient people that I know because we get up every day, and we look in the mirror, and we have to keep going,” Kristen said. “If we have a good day a month, or if we have 100 bad, we still have to keep going.”

As for her future, Kristen is philosophical. “Cancer, will it shorten my life? Probably,” Kristen said. “Will it be the thing that gets me? Probably, unless I get hit by a bus, but it is manageable and it’s OK. I’m living an amazing life with this illness. It is such a mental game.”

Lessons learned by one and all

Each of these women has come to the same conclusion about her journey through the medical and emotional maze of cancer, and it’s treatment. Anyon e who faces a diagnosis of cancer must have an advocate at his or her side as often as possible.

Donna said she was lucky to have her sister-in-law, a nurse, accompanying her to the doctor visits. “For most of us, we enter into this sort of surreal state,” Donna said. “There’s all this information, and you can’t process it.”

Anne agreed. “You have to take control of your own destiny and treatment,” Anne said. “You have to educate yourself or have somebody there with you on your side who is willing to educate themselves to help you, to become your advocate.”

“Individuals need to be their own advocate,” Kristen said. “If they are not, they should designate someone to do it.”

Another aspect which each woman touched upon was the appropriate role for her doctor. Kristen said she is lucky to have so much support from her family. “If I look to my doctors for encouragement or sympathy, I’m going to the wrong place,” Kristen said. “I look to my family, my friends, my husband, my support system. I look at my doctors for my treatment, my medication.”

Anne came to the same conclusion. “I had some wonderful doctors, but they don’t have the time to be only my advocate,” Anne said. “You have to have another person to help you.”

Donna repeated a saying that another patient had passed on to her: “Let your cancer be your event, and not your doctor’s.”

Finally, everyone spoke of the absolute necessity of maintaining a sense of humor as an essential tool to get through the darkest hours.

Anne said the people at her office were fantastic, but her boss was afraid of saying the wrong thing. “So I broke the ice by making cancer jokes,” Anne said. “Like, ‘You’re not going to make me do that because I have cancer, right?’ At first, he turned white. He didn’t know how to deal with it.”

Kate wryly recounted the methods used by the radiation doctors. “They tattoo you so they can get the machine in exactly the same place every time,” Kate said. “I swear they use railroad spikes instead of needles. Now I have these little black marks, no choice of colors.”

Donna uses her sense of humor with a support group. “We meet once a month for breakfast at a ‘breast-fest.’ Very little of the conversation is about health or lack of health,” Donna said. Plus, the only photo of Donna currently on the Web is one of her wearing a red clown nose.

Kristen said she knows she should not go the support group route. “I don’t belong to any support groups because I would get kicked out,” Kristen said. “I keep cancer from defining me by putting people at ease with it, telling a joke about it. I tell people, when I’m on my morphine drip, ‘You’d better be bringing me a very expensive gift.’” And, adding a bit of gallows humor, Kristen said, “I do not look good in yellow, so I am not ready to go.”    

A thousand fibers connect us

Breast cancer photo quilt tells stories through pictures

The Ribbons of Life PHOTO QUILT project is built from the heart of Ventura County’s Ribbons of Life Breast Cancer Foundation. Behind each smiley patch is a life story holding the power of possibility. From Ventura to Santa Paula, from Oxnard to Camarillo, in cancer walks, classrooms and special events, this quilt is used to educate the general public by providing a human dimension and voice behind the face of each person touched by breast cancer.

It is a “living” quilt with those who continue on with their lives and others who will not be forgotten, while conveying a “we’re all in this together” message. Melville of “Moby Dick” fame writes, “We cannot live only for ourselves. A thousand fibers connect us.”

This visual and textural sharing is personally and socially healing to our community and serves as an ice-breaker, causing those who spot each colorful square to openly converse about the subject of breast cancer, ask questions, learn and exchange inspirational stories, and projecting light on what is sometimes considered a dark subject.

Debbie Zahner, aka “The Quilt Lady,” chaired this project. Sewing the quilt together reminded her she was not alone. She passed away Tuesday, Sept. 23. Zahner’s quilt legacy has been left for those within the Ribbons of Life Breast Cancer Foundation to continue to add photos of those with breast cancer living in Ventura County.

(For more information, see www.ribbonsventura.org, click “Quilt Project”.)
— Taken from Web site, www.ribbonsventura.org

Stages of breast cancer and survivor rates

Stage 0 breast cancer: Breast cancer may st i ll be precancerous, but it still needs treatment; 100 percent.

Stage 1 breast cancer: The cancer hasn’t spread beyond the breast; 100 percent.

Stage 2 breast cancer: The cancer is in the breast and may also be in nearby lymph nodes; 2A 92 percent, 2B 81 percent.

Stage 3 breast cancer: Cancer hasn’t spread far beyond the breast and nearby lymph nodes; 3A 67 percent, 3B 54 percent.

Stage 4 breast cancer: Breast cancer has spread beyond the breast and nearby lymph nodes to other parts of the body; 20 percent.

— Informati on courtesy of webmd.com; based on five year relative survival rate