2012 | Brainerd Dispatch
hair Today, gone Tomorrow
breast cancer
awareness
real women reveal the ups, downs and in-betweens of hair loss and regrowth
rally the
Troops
Breast cancer patients are logging onto the Internet to seek comfort and guidance from those that already have fought the good fight
plUS:
Chemo Cravings To Reconstruct or Not to Reconstruct Inside Triple Negative
2
B r e a s t C a n C e r awa r e n e s s 2 0 1 2
on a scale from 0 to 4
a number is applied to each diagnosis, but what does it mean? here, a simple guide to understanding the stages of breast cancer, what they mean and the types of treatments to expect By linDsey romain CTW FeaTures
a breast cancer diagnosis is overwhelming enough on its own. But throw in the new terminology family and patients must comprehend to process and understand the disease, and that overwhelming factor is ramped up tenfold. one of the hardest to grasp concepts can be the “stages” of breast cancer. Doctors use stages to classify the progress of the cancer, as well as the origins and prognosis. From zero to four, each stage can be broken down into even more categories and types, depending on factors like size, the involvement of lymph nodes and whether or not the cancer has spread. here, Dr. Lise alschuler, a naturopathic physician, author of “Five to thrive: Your Cutting-edge Cancer Prevention Plan” (active Interest Media, Inc. 2011) and breast cancer survivor herself, walks us through each stage.
3
B r e a s t Ca n c e r 2 0 1 2 Stage Zero Many people are unaware of the very first stage of breast cancer, stage zero. Considered a pre-cancerous condition, “not all of it goes on to become cancer,” Alschuler says. While patients may still be offered treatment such as radiation or a lumpectomy, Alschuler calls this more of a “wait and watch” period, before an official diagnosis can be confirmed. Stage One “The main difference between stage zero and stage one is that [the cancer] is now invasive,” Alschuler says. A stage one diagnosis means that a group of cells have been mutated enough that they are able to grow into a tumor. Stage one tumors are considered fairly small – less than two centimeters in the greatest diameter. At this point, they have not spread to the lymph nodes, or if they have, there are only microscopic cells that have moved. Stage Two There are two types of stage two breast cancer: type A and type B. In type A, the tumor is larger than type B, but there are no cancer cells in the nodes, or cells are in the nodes but on the same side as the tumor and in small numbers. In type B, the tumor is between two to five centimeters, but there is more lymph node involvement. There is also a rare type of B with a large tumor but no node involvement. Stage two is still considered early stage breast cancer, according to Alschuler, meaning it’s a potentially curable disease. But it does still involve aggressive treatment, she says. When a sample is taken through a biopsy, the pathologist will give a grade to the tumor. “The higher the grade, the more aggressive,” Alschuler says. Not everyone with the same stage is treated the same. At stage two, the treatments differ; a patient may undergo chemotherapy, or a mastectomy, or maybe just radiation. “The intent of the treatment in these stages is to cure because it hasn’t spread yet,” Alschuler says. Stage Three A stage three diagnosis indicates a five-centimeter or larger tumor. The tumor is on the same side as the lymph nodes where it has spread, usually in the armpit area. There are more nodes involved, typically more than three, usually four to nine. Sometimes in stage three, the tumor has grown deeper into the chest wall or up into the skin, affecting different types of tissue. At this stage, a different type of breast cancer may be on display: inflammatory. “Inflammatory breast cancer is a different type of cancer cell,” Alschuler says. “It tends to be more aggressive, and more resistant to treatment. There are not as many effective treatments available for this type.” The cancer is still treatable at stage three, but it generally has a greater degree of risk for reoccurrence. It’s more aggressive than the other stages, with systemic treatment. Alschuler says it’s very rare that doctors wouldn’t recommend chemo at this point. Stage Four Stage four, the final stage of diagnosis, is the most serious and the most progressed. Any size of tumor or lymph node involvement can appear at this stage, but the main indicator of stage four is that the cancer has spread, typically to the bone or liver. Alschuler says to expect very aggressive treatment at this point. “The treatment is typically sequential at this stage,” she explains. “You’ll go through an initial round of treatment, get a break, then go back into it. It’s about managing the growth so people can live with the disease as long as possible.” While this may be the final stage of diagnosis, Alschuler points out that, rare as it may be, a full recovery is still possible.
4
© CTW Features
B r e a s t C a n C e r awa r e n e s s 2 0 1 2
hair ToDay, gone TomorroW
here’s how real women have dealt with the temporary loss of their locks 5
B r e a s t Ca n c e r 2 0 1 2
By Dawn Klingensmith CTW FEATURES
E
ven when cancer patients expect it will happen, hair loss during chemotherapy can be devastating because every look in the mirror and every stranger’s reaction reminds them of their illness. Hair loss occurs because chemotherapy drugs target rapidly growing cells. Hair follicle cells, like cancer cells, multiply quickly. Hair loss is usually temporary, with regrowth starting three to 10 months after chemotherapy ends, though the new growth may be a different shade or texture. Here, cancer patients and survivors talk about losing their locks and holding onto their dignity and sense of humor.
Whenever I’d see my reflection in the mirror or a window, or even walking down the street I’d see my reflection in a car, it’s a constant reminder that you have cancer. For a while I had a henna tattoo on my head. I also had a hat party — all the guests had to come in a wig or a hat or I got to shave their head. I shaved two (men’s) heads that night. When my hair came in, I felt like a baby chick. I had really fine, fuzzy hair for a long time. I just let it grow and grow and grow. Now it’s longer than it’s ever been.”
Julie Grimm (pictured, above) 50, Golden, Colo., founder, Ready for Recovery, www.breastcancerplanner.com “When chemo started my hair was still about shoulder-length; I’d only cut it a little bit. My hair was fine for about 14 days, so I thought I wasn’t going to lose it. And then all of a sudden it started coming out in clumps. It was one of the hardest parts, being bald, because it symbolizes cancer.
6
Chris Casey (pictured above) 36, Orland Park, Ill. “The first thing I said when I found out I had a tumor was, ‘I can’t have a
b r e a s t c a n c e r awa r e n e s s 2 0 1 2
tumor; I have babies.’ I was 31 with 6-month-old twins. Now that I look back, I think it was actually better because they don’t remember Mommy being sick or losing her hair. I had really long, thick hair to the middle of my back and never thought I would cut it. When I found out about the cancer, I joked that it was God’s way of telling me it was time for a new haircut. My doctor recommended I cut it off before it falls out. Cancer takes so much out of your control. This was one way to still be in charge. After chemo, when I could finally color my hair, I felt more like me again. When I could pull it back again, it was even better. It’s a feeling of accomplishment, like cancer can define the moment but not define me.”
Heather Thomas (pictured top left) 41, Columbia, Mo. “I had to explain to my daughter, an 8 year old, that Mommy would lose all her hair. I was reading something about how to prepare to tell your kids, and it said you lose your eyebrows and eyelashes, and that hit me harder than losing the hair on my head. I had also heard if you walk outside on a windy day, clumps of hair could blow
out. I wasn’t going to allow that to happen so I scheduled a head-shaving party. With the stubble my head was like Velcro. I had to sleep in a hat because my hair stuck to the pillowcase. I don’t know how men with military cuts can stand it. I had a wig, and it was nice to be able to fall back on that — no one looks at you with sad eyes. But it gave me a headache so I didn’t wear it to work except for one time when I couldn’t find a scarf to match my outfit. My hair is coming in all gray, which is an absolute shock. I was shopping and a lady asked,‘Is that chemo hair?’ It’s kind of this bond.
Tonya Wootton (pictured bottom right) 32, Syracuse, Utah “I had a hair-cutting party. We all shaved our heads bald including my mom and nieces. I had hair down to the middle of my back and donated it to Locks of Love. The hair thing didn’t seem to bother me. I know it really upsets some people, but with me it was no big deal. My sister is a hairdresser and shaved us all, and she had a harder time with it
than I did. When you’re strung out on chemo you don’t need your hair in your face anyway, and it’s kind of nice after a mastectomy not having to wash your hair because you can’t lift your arms. My hair came back darker than it was, and really curly. Right now, it’s about an inch and a half long. I can’t do much with it. My fiancé says I look like a chia pet. But after you haven’t had hair for so long, you’re just excited to have hair, no matter how it comes back.”
Rita Lusen (pictured top right) 50, Philadelphia, vice president, www.breastcancer.org “I’d had four lumpectomies and then a mastectomy so my main concern was being here for my children; I really wasn’t concerned about my hair or the impact of chemotherapy. At the time I had long flowing red hair. It was something I always got compliments on. Even through the surgeries, I could mask that I had breast cancer, but when you lose it, it’s like a badge. With each trip to the grocery store, I had to determine how strong I was that day. Could I just put on a baseball cap and deal with people touching me and asking me questions? On a really daring day, I’d wear a baseball cap that said ‘No Hair Day.’ My hair is back to normal now. It’s the same texture and color as before I got sick. © CTW Features
7
B r e a s t C a n C e r awa r e n e s s 2 0 1 2
healing Through FooD
Why healthy eating is important for breast cancer survival 8
By Bev BenneTT CTW FeaTures
B
eing a health nut is a lifestyle people will want to embrace – literally. If you’re recovering from breast cancer and getting your appetite back, you may wonder what you should be eating now. Perhaps you’re experiencing fatigue; you’d like a diet that gives you some energy. If your taste buds were affected during treatment, you’d like to once again eat foods that taste good. Most of all, you’d like a diet plan that reduces your risk of a cancer recurrence. Your food choices can help you improve your health and stamina, as well as your mealtime enjoyment. however, don’t search for “magic bullet” foods such as broccoli or a super-berry. Instead, look at your entire dietary pattern. Design it so you’re emphasizing plant foods, including produce, whole grains and beans, while limiting meat, says alice Bender, registered dietitian. at the same time, control your caloric intake. If you’re overweight or obese, getting to a normal weight is important once you’re finished with treatment. “Being overweight can put women at risk for a recurrence,” says Bender, nutrition communications manager, american Institute for Cancer research, Washington, D.C. gain weight after recovery and you could increase your risk by as much as 50 percent, depending on how much you gain, according to data from breast cancer survivors within the nurses’ health Study (an ongoing study of women’s health, with more than 200,000 nurse participants). the same foods – produce, whole grains and lean protein – that benefit your health can help you lose weight without feeling
B r e a s t Ca n c e r 2 0 1 2
deprived, says Cheryl Rock, Ph.D., registered dietitian, professor, University of California, San Diego School of Medicine. Maybe you’ll still crave the occasional piece of chocolate, but if you “fill up on vegetables before you reach for chocolate, you’ll eat a smaller portion,” Rock says. Salsa and chips are such a decadent treat you might not consider the zesty duo in your post-treatment diet. But this tasty version is chockfull of nutritious vegetables and low in fat. The chips are baked, not fried. The recipe is from “The Back in the Swing Cookbook” by Barbara C. Unell and Judith Fertig (Andrews McMeel Publishing, 2012). Black Bean, Tomato and Corn Salsa with Baked Tortilla Chips 2 (15-ounce) cans black beans, rinsed and drained 1 (15-ounce) can corn, rinsed and drained 1 cup canned tomatoes, drained and chopped 1 cup finely chopped red onion ½ cup finely chopped green bell pepper ¼ cup chopped cilantro 2 garlic cloves, minced ½ teaspoon ground cumin ½ teaspoon sea salt
2 teaspoons olive oil, grapeseed oil or canola oil 1 small jalapeno chile, seeded and finely diced Juice of 1 lime Baked tortilla chips: 12 (6-inch) corn tortillas 1 tablespoon grapeseed oil or canola oil 1 teaspoon kosher or sea salt 1. For the salsa combine the black beans, corn, tomatoes, onion, bell pepper, cilantro, garlic, cumin, salt, oil, chile and lime juice in a large bowl. Toss to blend. Cover and refrigerate several hours to let the flavors blend. 2. For the chips, preheat the oven to 350 degrees F. With a sharp knife or pizza wheel, cut each tortilla into 8 wedges. Arrange the wedges on 2 large baking sheets. Brush the tops with oil and sprinkle with salt. 3. Bake for 6 to 7 minutes, then rotate the trays in the oven. Continue baking for 6 to 7 minutes longer, until the chips are lightly browned. Serve right away or let cool, then store in an airtight container. Makes 12 servings. Each serving has: 207 calories; 3.5 grams total fat; 38 grams carbohydrates; 8.5 grams protein; 400 milligrams sodium and 10 grams dietary fiber. © CTW Features
9
B r e a s t C a n C e r awa r e n e s s 2 0 1 2
Build your own Breast Cancer army
support from friends, family and community are an integral tool in the fight against breast cancer. many are taking their illness to the internet, creating online support groups on Facebook, Twitter, blogs and forums
10
By renee lee CTW FeaTures
l
aura! Jane! Laura! this went on for a few minutes because Laura forgot to ask Jane what room she was in on the sixth floor. the two went on screaming until they found each other in the hall. then, it was like something out of a movie, Laura says. the two hugged, and cried and laughed at the same time. they reached over and touched the tufts of hair on each other’s otherwise bald heads. Just as everything else they’d shared as “breast cancer sisters” during the past 11 months, at that moment both women similar amounts of re-grown tufts of hair on their heads. Breast cancer survivor and lawyerturned-rock-musician, Laura roppe, turned to an online forum the day she got diagnosed with triple-negative breast cancer. the next day, as if a private prayer had been answered, Jane Barker from Sheffield, u.K., wrote that she had been diagnosed with exactly the same type of breast cancer on the same day. the two also went on to start their chemotherapy treatments on the same day. While roppe also had what she called “flesh and blood” friends and family that supported her, she found one of her biggest sources of support online. roppe, of San Diego, is just one of many people now turning online to social media sites like as Facebook, twitter to seek support when a diagnosis of breast cancer is found. Many women are starting online groups to unite all of their friends and family, which makes sharing information easy, fast and effective. It also makes connecting with strangers going through the same thing easier, something that can be a source of both strength and information for women that often feel alone and isolated. “Just being diagnosed the same day as someone doesn’t ensure a lifelong bond,” roppe says of Barker. “We were meant to be sisters, though. We bonded over our love for
aDverTorial
Surviving the Journey F
or some women, it all begins with a lump. “I felt a lump, so I went in, and before I left the doctor’s office that day, everything [mammogram, tests] was scheduled for the next day,” said Betty osmonson, 78, of Staples, who was diagnosed with breast cancer in January, 2011. “everyone at Lakewood takes you seriously; they don’t mess around!” For so many others, the beginning of their journey through breast cancer isn’t quite as clear.“I never felt a lump, and even after a mammogram, I still needed an MrI and ultrasound to find it for sure,” said Liz Lindgren, 77, of Staples who was diagnosed in June, 2010. “I was the same way,” said Debbie Kern, 52, of Verndale who was diagnosed last april.“I couldn’t feel anything and even when they showed me on the mammogram, I said, ‘are you sure?! that just looks like a shadow.’” Whether it begins with a lump or a test, the diagnosis and subsequent treatments are different for every woman, and test the physical, mental and emotional strength of even the strongest-willed women.“I was
diagnosed in February, 2011 on my son’s sixteenth birthday. I’ll never forget that day,” said Lorree Shereck, 45, of Motley.“a few weeks into my chemo and radiation therapies, I started losing my hair. at the time, you think it’s the worst thing that could happen, but looking back you realize how unimportant hair really is.” “I got very sick with my chemo treatments, and lost my hair after two weeks,” said Jeanne riley, 63, of Brainerd who was diagnosed in July, 2011.“I became severely depressed and anxious before starting my radiation treatments and it took me about five weeks to get to the point of actually wanting to get out of bed. I’m grateful everyday for my sisters, and the people at Lakewood for helping me get to that point.” “they [Lakewood health System] came up with my diagnosis very quickly, so I didn’t have to sit and wait, and worry,” said Jenny Kiehlbauch, 36, of Brainerd who was diagnosed in november, 2011. “I really appreciated that Kris [Posner, Breast health navigator at Lakewood health System] was right there after they told me my diagno-
sis, and I saw the surgeon and the oncologist right away.” “I hate to say it was a great experience, given the situation, but it was,” said Kern.“they [Lakewood] helped make the best out of a bad situation. I was never really scared because I went in with a positive attitude and said, ‘Well, let’s just get this over with.’ It was like I’d never even had cancer.” “I was scared, and even a little angry.” said Shereck.“I have two kids and a husband. I never thought it would be me. I cried myself to sleep during one of my treatments, and the nurses in chemo cried with me.” after the diagnosis and treatments are done, many women find it difficult to return to the life they knew.“after all those months of treatment and trying to get back to ‘you’, you realize how behind you are,” said Shereck.“It’s like everybody moves on without you and you’re like ‘why am I left out’? I’m back now, but it took a long time.” “even after you’re done with everything, Kris still checks in with you,” said riley.“She understands that you’re not done yet, and you need to know that someone still
cares.” even though it would be easy to only remember the worst from their experiences, there were some positive aspects.“During your whole time at Lakewood, you have the same outstanding people around you, giving you a boost,” said osmonson.“anywhere else, you’d be seeing different people every day.” “everyone kept telling me to go somewhere else, somewhere bigger, but I knew Lakewood was the place for me because I knew I wouldn’t be treated like a number. they saw me as a person,” said Lindgren. “Kris and everyone here [at Lakewood] make you feel like someone cares,” said riley. through it all, these women never lose sight of the significance their journey could mean to others going through a similar situation. “It’s going to get better,” said Kiehlbauch.“It’s awful right now, but it does get better.” “You shouldn’t be fearful,” said Lindgren.“If you go in with a positive attitude, the whole experience is easier.” according to the american Cancer Society, more than 1 million u.S. women have breast cancer and don’t know it.“So many women don’t understand the importance of mammograms and yearly check-ups,” said Posner.“Women shouldn’t ignore lumps and other symptoms; they should be asking questions, and not keeping their suspicions to themselves.” “Definitely go for your yearly mammogram!” said Kern.“I was going to skip a year, and catch up later, but I’m grateful I didn’t!” For many women, the journey through breast cancer never truly comes to an end. Yearly mammograms, tests and the color pink are constant reminders of something that has been a huge part of their life.“I think you get to a point,” said Shereck,“where you have to say, ‘My cancer does not define me.’” Provided by Lakewood Health System
11
b r e a s t c a n c e r awa r e n e s s 2 0 1 2 the BBC version of ‘Pride and Prejudice’ and I called her ‘My dearest Jane.’” Roppe chronicled the emails she and Jane sent back and forth in her book “Rocking the Pink: Finding Myself on the Other Side of Cancer” (Seal Press, 2012.) Marci A. Schmitt, from Chandler, Ind., turned online to find information and support and wrote “March Forth” (Outskirts Press, 2011) as a way to provide support for others battling breast cancer. Schmitt was diagnosed in January 2009. Her mother had passed away from breast cancer in 2004, and she went on to lose her father-in-law and brother to cancer in the years surrounding her own battle. After talking to another survivor who went on to give talks around the country Schmitt hung up the phone with one goal in mind: Write a book and provide support for others in her shoes. She wrote and wrote until she couldn’t think of anything else to write, Schmitt says, and it was a full year until she told anyone she’d written the book, not even Steve, her husband of nearly 20 years. A ‘Real Sisterhood’ Schmitt acknowledges two websites in the front of her book: breastcancer.org and breastcancer.about. com. She got information on what would be happening to her body, asked questions and received answers full of support and love. On the other side of that however, some people expressed their negativity through the forums Schmitt read. She certainly wasn’t about that. “Something I kept telling myself, was even though I didn’t want to go through all of this there were so many others struggling and many worse off than me,” Schmitt says. “I learned from my mom not to have a pity party. I chose to not let cancer run my life.” Schmitt has a blog for her book, 4MarchForth.com, and created a
12
“It’s a real sisterhood. You know you’re not alone, and when you’re talking to people who have been there you’re free to be honest and you can share things you can’t share with others.” — Laura Roppe, survivor
Facebook page for it. She’s hoping to move to the point where she can share a weekly tidbit with others to foster a community of support. Both Schmitt and Roppe are huge proponents of support groups, whether they be online or in person. “It’s a real sisterhood,” Roppe says. “You know you’re not alone, and when you’re talking to people who have been there you’re free to be honest and you can share things you can’t share with others.” Roppe is currently still part of a Facebook group with 150 women who share the common thread of all having had triple-negative breast cancer. The Best Support Sometimes, friends just need to let you know they’re available, Roppe says. People would drop by, bring a magazine, drop off some chicken noodle soup or send an email to check up, she says. Having people treat her “like a normal person” was very important. She recalls a moment when a friend asked if she had seen the previous night’s “American Idol.” When it’s
not all about cancer and mortality, you can begin to feel human again, Roppe says. During her journey through cancer, Schmitt says she and her husband learned to accept help from other people. About three times a week, whether it was a friend or family member, someone would bring over meals for the family, which includes sons Corey, 16, and Clay, 13, and a step-daughter Lindsay, 29. Schmitt’s biggest pieces of advice for friends and family members who aren’t sure how to act in front of a cancer-stricken loved one? Don’t come with pity in your eyes, Schmitt says. And don’t talk about other people you’ve known who have died. That’s the last thing anyone with cancer wants to hear, she says. Roppe recalled the very worst days when she was in the thick of chemotherapy and love from her kids carried her through. “I would feel little tiny lips kissing my bald head,” Roppe says of her daughters Sophie and Chloe, who were in third and first grade at the time of her treatment. “Then they’d
squish into bed with me and I could feel their warmth.” On the Other Side of Cancer After it was all said and done, Schmitt had two mastectomies and has now been cancer-free for three years. She’s going on quarterly visits and has been scanning clear, and is taking things one day at a time. Roppe currently has no evidence of disease, and it’s been that way for the past three years. Just weeks before the diagnosis Roppe signed a record deal with a London-based record level, achieving a long-time dream of hers. The diagnosis left Roppe with what she calls in her book, a “victory” in the sense that she quit her law job and dedicated herself full-time to music. “I followed my heart, my voice,” Roppe says. “Don’t wait until you get cancer until you do what you really want to do.” The question everyone has after reading her book, Roppe says, is “What about Jane? How is Jane?” Barker, forever Roppe’s breast cancer sister, also is in recovery and is doing great, Roppe says. © CTW Features
B r e a s t Ca n c e r 2 0 1 2
From the Mouths of Survivors Meet Tara Mullen Tara Mullen, 38, of Pleasantville, N.Y., is a married mom of two daughters, ages 8 and 5. She was diagnosed at age 35 for “ductal carcinoma in situ” after her doctors found a cyst in her breast. Ductal carcinoma in situ (DCIS) is a noninvasive breast cancer with abnormal cells contained in the milk ducts. “In situ” means “in place” because the cells have not left the milk ducts to invade nearby breast tissue. “Due to my family history of breast cancer, they were keeping an eye on it and I was getting an ultrasound every six months,” she says. A few months later, the fluid-filled cyst turned into a solid mass. “I didn’t hear anything after the doctor told me that I had breast cancer,” Mullen says. The doctors performed a lumpectomy and a few months later, more cysts were found. “They weren’t in the lymph nodes, thankfully, but I opted for a double mastectomy in May 2012,” she says. Mullen went through radiation treatment and a chemotherapy shot in her stomach every three months. “I never had a choice to stop going and never had time to really think about it,” Mullen says. “I broke down at the end of radiation when it all hit me at once and my radiation oncologist said, ‘I was waiting for that.’” “I worked in the oncology department, so when I heard the news my first thought was, ‘What stage is it? Did it metastasize?’” she says. “I thought about my kids, they were small and I didn’t’ know whether it had spread or not. And all of the surgery was a pain in the ass.” Mullen says she couldn’t care less that she lost her breasts. “I just wanted them off me,” she says. “I didn’t want to have to worry about it anymore. You can get them reconstructed. There are more important things than breasts. What I hated was the fact that I couldn’t care for myself and all of a sudden I was shut down completely with drains in me.” Mullen needs more reconstructive surgery but she says her health is good.
Meet Meridith Stevens Meridith Stevens was diagnosed with inflammatory invasive ductal carcinoma on Oct. 26, 2011. It had spread to some of her lymph nodes. “I followed through on a suspicious lump in my left breast and then other topical changes that were apparent,” she says. “I don’t remember exactly when it was, but I think my suspicions started in early August. I had felt a hard lump in my breast, perhaps an inch away from my nipple. I noticed it by chance, either adjusting a bra or showering. Prior, I had not been good about self-examinations because I had cystic breasts and I blew off self-examining because I figured I’d always be feeling lumpiness, so I might as well leave it up to the experts to determine the differences.” This time, it was different though. “It was more solid than I had ever felt. I was in complete disbelief because, for goodness sake, I had just had a clear mammogram in April there was no way the lump could be anything serious.” As time went on, the lump got harder and bigger and began to swell, and Stevens’ nipple began to discolor and invert. The skin over the lump and neighboring area started turning red and swelling, too. She was treated with two rounds of chemotherapy and a mastectomy and then radiation. “Next July, I will have the right breast removed and the first of my reconstruction surgery for both breasts,” she says. “Physically, besides having a higher blood-pressure than at the start, residual fatigue from chemo treatments, and having to lose weight and get in condition, I’m otherwise healthy.” –Lisa Iannucci © CTW Features
13
b r e a s t c a n c e r awa r e n e s s 2 0 1 2
Constant & Unhealthy
Chemo Cravings
Radiation and chemotherapy cause many nausea and headaches, and can make eating nearly unbearable. Navigating food choices isn’t easy, especially when healthy foods are the path to healing and chips are the only thing that sound good – what’s a woman to do?
14
b r e a s t c a n c e r awa r e n e s s 2 0 1 2
By bev Bennett CTW FEATURES
A
s a health professional, Patricia D’Imperio urges her patients to make the most nutritious food choices. The chiropractic neurologist is a nutrition role model, who searches out wholesome food for her family. Then, there’s Doritos. When D’Imperio has to have them, she’s unstoppable. “I’m a craver of salt,” says the owner of Healthy Living, Bayville, N.Y.“It’s not one; I’ll consume an entire bag and have to get it out of my system. I can’t stop even though I know better,” she says. D’Imperio, who finished her treatments for breast cancer, is struggling with an occasional craving for a salty snack as she tries to eat the best diet possible to stay cancer free. She’s not alone. “Some days I’m good, some days I’m not so good,” says Cynthia Newsome, who is finished with radiation treatments for breast cancer. The Dairy Queen strawberry shake beckoned and Newsome responded. “It was good,” says Newsome, weekend anchor, NBC Action News in Kansas City, Mo. You may have an itch for a particular ingredient, like D’Imperio and salt, which hits every two months or so. Perhaps you associate a certain food with a positive experience you want to recall. Whatever the reason, if you learn to manage your food urges you can splurge without the guilt, while developing more healthful habits. While you’re educating yourself you’ll also look for ways to let your loved ones know how you’d like to be supported. Getting into a breast cancer recovery nutrition program can help. Find a registered dietitian who will show you what you can eat. If you need to lose weight to reduce your risk of a breast cancer recurrence (or your risk of other diseases), you don’t want a diet that feels
like punishment. Emphasize enjoyable options, not what you should forego, says Cheryl Rock, Ph.D., registered dietitian, professor, University of California, San Diego, School of Medicine. You may find you have “a lot of choices that are equally pleasurable,” Rock says. She is studying the effects of weight loss and increased exercise on quality of life and on co-existing medical conditions in overweight breast cancer survivors.The women she counsels are helped to change their behavior. “We don’t hand out a list of foods you shouldn’t eat, but [advice on] how to fill the plate. It’s not a punishment,” Rock says. For example, she suggests switching from regular bacon to savory, fullflavored Canadian bacon. Pizza? “You can have it. It’s a wonderful vehicle for having vegetables in your diet,” Rock says. Her tip is to trade pepperoni for sun-dried tomatoes as a pizza topping.
The health expert also teaches portion control as a way to enjoy favorite high-calorie foods. In Newsome’s situation, a small shake was satisfying.“I would have gotten a large in times past,” she says. When you’re more aware of nutrition, you can stop beating yourself up over the candy bar you couldn’t resist. However, it’s easy to understand those feelings of guilt. “Your trust in your body is gone,” says Barbara C. Unell, founder of Back in the Swing USA, Overland Park, Kan. You think “If I have that extra cookie it will put me over the edge,” says Unell, whose non-profit organization promotes joyful and healthy living for breast cancer survivors. Again, educating yourself about wholesome eating will help. But, even though you may feel in control with the occasional tortilla chips or milk shake, your loved ones may not understand. When her 9-year old daughter sees her reaching for the Doritos,“her eyes will get really wide and she says,‘MOM,’ ” D’Imperio says. “My husband and daughter say,
‘Mom’s on the Doritos again.’ I explain that this is one little thing I do once in a while,” she says. How do you tell your friends and loved ones you appreciate their concern but don’t need policing? You can provide the answer.You can tell others how you want to be supported, according to Unell. How you phrase the question makes a difference. “Don’t say to the family ‘I want to eat better, help me.’They’ll nag you with everything you eat,” Rock says. Instead, suggest something specific: Let’s go to the farmers market and pick up some salad ingredients for dinner. Let friends know how to help you. Newsome says she is “looking for information more than people motivating me.” The Kansas City television anchor says,“I like to read things that say here’s what to do; here’s what to try.” For instance, having someone tell her about a good-tasting sugar-free ice cream would please Newsome. © CTW Features
15
B r e a s t Ca n c e r 2 0 1 2
Back in the Swing of Living B
arbara C. Unell finished her radiation treatments for breast cancer in 1998 and assumed she’d be given help on getting back in the swing, as she called it. She was looking for follow-up care for side effects and guidance for rebuilding her health. When it wasn’t offered her frustration led her to form Back in the Swing USA (www.backintheswing.org). “The Back in the Swing mission is to educate and empower healthcare professionals to provide care for the [post breast cancer] consumer,” Unell says. The organization also helps women develop a personal survivorship care plan. New is “The Back in the Swing Cookbook” (Andrews McMeel, 2012) by Unell and Judith Fertig. The book features nutritious recipes, luscious indulgences such as celebration chocolate cake and anecdotes and health tips to get readers back to their full lives.
The EmotionaL Weight of Food
When Patricia D’Imperio was undergoing treatment she had chemotherapy on Fridays.“By Sunday at home I would be horribly sick on my living room couch when my daughter would come home with a small bag of Doritos she got with my husband.” D’Imperio’s family, knowing she could stomach almost nothing, thought the snack would be a special treat. Doritos were one of the few things that went down easily, according to the chiropractor. “I cherished every last crumb.” Maybe it wasn’t the best snack; still isn’t as far as nutritionists are concerned. But for D’Imperio,“there’s comfort in certain foods. It takes us to a place where we are OK,” she says.
16
b r e a s t c a n c e r awa r e n e s s 2 0 1 2
7
Confronting Fears About Reconstruction To reconstruct or not to reconstruct – it’s one of the toughest questions a woman faces following a mastectomy. Here’s the information needed to make an informed decision 17
b r e a s t c a n c e r awa r e n e s s 2 0 1 2
By Jeff Schnaufer CTW FEATURES
A
t the age of 44, Michele Rakoff discovered she had breast cancer. She recalls being “not well informed” by her surgeon about her options for breast reconstruction. “I was rushed into making a quick decision and was not given the opportunity or the suggestion to have a second opinion,” Rakoff recalls. “Within four days of my diagnosis, I had a simple mastectomy with no reconstruction.” After the surgery, Rakoff began investigating the possibility of having reconstruction, educating herself. She decided to have breast reconstruction six months later. That was in 1988. Today, Rakoff serves as executive director with the Breast Cancer Care and Research Fund in Los Angeles, Calif., developing a mentoring program for newly diagnosed patients so they can speak with trained, educated survivor mentors. “It has been 24 years and as the result of my experience, I always remind women that a diagnosis of breast cancer is not an emergency,” Rakoff says. “They have time to get a second opinion, do research and speak with well-educated advocates who can share their own experiences.” Reconstruction is one of the toughest decisions a woman faces following a mastectomy. According to a Colombia University study, fewer than one in four women with invasive cancer opt for the immediate reconstruction of their breast. More than one in three with early stage cancer got the procedure. The biggest predictor of whether or not a woman got reconstruction was insurance coverage. Ultimately, it’s a personal decision. But many fears can get in the way of making the best choice. We asked a few experts to weigh in on the validity of these fears.
18
Fear #1: I have to decide right away because reconstruction can only be done immediately following the mastectomy. “Incorrect,” says Dr. Christy Russell, a spokesperson for the American Cancer Society and associate professor of medicine at the University of Southern California. “They can always have a delayed reconstruction.” “One can do a delayed recon-
“I was rushed into making a quick decision and was not given the opportunity or the suggestion to have a second opinion.” — Michele Rakoff, director Breast Cancer Care & Research Fund, Los Angeles
B r e a s t C a n c e r awa r e n e s s 2 0 1 2
struction. But if one can get it together and really make a decision up front, there’s some economies of scale, so to speak,” says Dr. John Link, author of “The Breast Cancer Survival Manual, 5th Edition” (August, 2012, Holt Paperbacks), director and founder of Breastlink Medical Group, a comprehensive breast cancer treatment group in Orange, Calif. There are a variety of types of reconstruction, he says. One is a silicone implant. The second type is where fat and skin are brought in from somewhere else to create the new breast. The third option is a hybrid of both. “When the breast implant is put in after the mastectomy, it eliminates an added surgery,” Link says. “In our practice, 90 percent of women have immediate reconstruction. Those women who deny it are more likely to do it because of age or underlying health issues like pacemakers, severe obesity, diabetes or heart failure.”
Fear #2: If I have to have radiation or chemotherapy, I can’t have reconstruction until it is over.
“Each person receives different treatment and depending upon that treatment, a decision should be made with discussions between the woman and her health care team,” Rakoff says. “Women should be informed that radiation does have an effect upon the skin and can limit the reconstructive choices.”
Fear #3: It is too dangerous to have reconstruction when you have an aggressive form of cancer. “No,” Russell says. “Even if women are dying of breast cancer, they deserve to have any type of body they want. You just have to make sure a patient is healthy enough to go through the surgery.”
Fear #4: If I don’t have
reconstruction, I’ll never feel like a ‘woman’ again. “There are many women of all ages who have chosen not to have reconstruction and are beautiful, sexy women,” Rakoff says. “I know several who were diagnosed in their 20’s, married after breast cancer and had children. They and their partners feel they are lovely, wonderful “women”.
Fear #5: Reconstruction is a vanity decision – I should just be grateful my cancer is gone.
“Absolutely not,” Russell says. “This is all about doing everything you can to try to even out the chest wall, not only for physical appearance but to even out the weight on the chest and stop back problems.” Following a mastectomy, Russell says women with large breasts “get very unbalanced. They start leaning in one direction.” “The whole process of being treated for breast cancer is difficult enough,” Link says. “There’s no reason a woman shouldn’t try to feel good about herself at the end. There should be no guilt about trying to become as whole as possible.”
Fear #6: If my cancer comes back, it will be easier to detect if I don’t have reconstruction.
“Absolutely incorrect,” Russell says. “Women who get a recurrence on the skin, it looks like a mosquito bite in the skin. It’s very, very easy to detect.” “Local recurrences occur less than 10 percent of the time,” Link says. “When they reoccur, they are almost always on the surface.”
Fear #7: My partner won’t be as attracted to me if I don’t have reconstruction. “I have a lot of patients who
have not had reconstruction and they are still functioning normally sexually,” Russell says. “Many of them said the fact that they developed a life threatening illness changed the relationship both emotionally and sexually. It was a wake up call to the marriage. My advice is to know how you use your body sexually before you go into these surgeries” At the same time, Russell points out that the breast is a sexual organ. A mastectomy will deaden
sexual stimulation in the skin over the removed breast. And getting a new “breast” from reconstructive surgery will not improve sexual stimulation, either. “There is always an adjustment period after breast surgery and discussions can help,” Rakoff says. “Many couples find it helpful to get professional counseling. Your partner should love you for who you are.”
© CTW Features
19
Advertorial
Cuyuna Riverwood Breast Health Alliance: Hospitals form a partnership of care
T
here’s a unique approach to providing the best breast health services in North Central Minnesota. It’s the Cuyuna Riverwood Breast Health Alliance (BHA). Located at both Riverwood Healthcare Center in Aitkin, and Cuyuna Regional Medical Center in Crosby, BHA aligns the talents, resources and energies of two great medical communities, and 20 North Central Minnesota towns in a region-wide effort to enhance breast health services, promote breast cancer awareness, and treat and support breast cancer patients. BHA’s high-tech equipment combined with their highly compassionate medical team creates a positive, affirming environment where the
20
patient can focus on herself. Digital mammography and stereotactic imaging equipment is used to enhance early detection and accuracy. A Breast Health Care Coordinator — a registered nurse at Cuyuna Regional Medical Center in Crosby and Riverwood Healthcare Center in Aitkin — guides breast cancer patients through the treatment process. BHA has established strategic partnerships with national and regional leaders in oncology research and treatment. They have partnered with the world-renowned Virginia Piper Cancer Institute, a leader in breast cancer research and treatment. They also partner with Regional Diagnostic Radiology and Minnesota Oncology to bring vital
The Cuyuna Riverwood Breast Health Alliance team includes (from left) Dr. Shawn Roberts, General Surgery, FACS; Amy Renner, RN, OCN, Breast Health Care Coordinator; Dr. Tim LeMieur, General Surgery, FACS; Melinda Jackson, Breast Imaging Manager; Erin Kennedy, RN, Breast Health Care Coordinator; Dr. Ronald Halvorson, Oncology; and Cindy Sherman, RT, Mammography Coordinator. services to the region. By working together, the alliance conserves resources, brings the latest in technologies to North Central Minnesota, and most importantly, provides breast cancer patients the
best treatment and support right here in their community. At home.
Provided by Cuyuna Riverwood Breast Health Alliance
b r e a s t c a n c e r awa r e n e s s 2 0 1 2
Negative, Negative, Negative One of the most invasive forms, triple-negative breast cancer is difficult to treat and accounts for 10 to 20 percent of all breast cancers. Today, however, it doesn’t have to be a death sentence. Here’s what you need to know
21
B r e a s t Ca n c e r 2 0 1 2 By Anna Sachse CTW FEATURES
F
rom a scientific standpoint, triplenegative breast cancers (usually invasive ductal carcinomas) are those whose cells lack estrogen and progesterone receptors, and do not have an excess of the HER2 protein on their surfaces. Because the growth of the cancer isn’t supported by these hormones or too many HER2 receptors, it doesn’t respond to common hormonal therapy (such as tamoxifen) or therapies that target HER2 receptors, such as Herceptin. Anyone can get triple-negative breast cancer, but it is more likely to occur in premenopausal women, says Patricia Prijatel, author of “Surviving Triple Negative Breast Cancer” (Oxford University Press, 2012) and founder of the Positives About Negative blog (HormoneNegative.BlogSpot.com). In addition, although African-American women are less likely to get breast cancer than Caucasian women, if they do get it, they are more likely to get triplenegative. While this group of cancers is not hereditary, Prijatel notes that it does have a strong association with the BRCA genetic mutation, which is hereditary.“The correlation works one way, but not necessarily the other,” she adds.“Women with the genetic mutation who get breast cancer are most likely to have triple-negative breast cancer than other forms, but women with triple-negative breast cancer do not necessarily have the mutation.” Other studies have found that women with triple-negative were younger at the onset of menstruation, on average had more children (at least three) than non-triple-negative women, they were less likely to breastfeed for more than four months, and they were more likely to not breastfeed at all if they had at least three children, Prijatel says.Another risk factor she finds intriguing is related to metabolic syndrome – a combination of risk factors such as high blood glucose, high blood pressure and abdominal obesity, plus problems like low “good” cholesterol, high “bad” cholesterol and high triglyc-
22
erides.“Women diagnosed with triplenegative breast cancer are much more likely to have metabolic syndrome than those with other forms of breast cancer,” Prijatel says.“Some research suggests that insulin resistance might be associated with triple-negative breast cancer.” Although triple-negative isn’t a good candidate for hormonal therapy, it can be treated with surgery, radiation therapy and chemotherapy.“In fact, some research has shown that chemotherapy is more effective for triple-negative than for hormone-positive,” Prijatel says. Knowing that triple-negative breast cancer is a family of diseases, the goal going forward is to understand the genetic makeup of the individual tumors that respond to treatment.“So, a treatment may only work on 5 percent of triple-negative tumors, but if we can identify the 5 percent, then we are making good progress,” Jones says. “Also, now that from a genetic point of view these cancers are no longer black boxes, we can also learn from other tumor types. (Our) study, for example, suggests that a drug used for malignant melanoma might be useful in a small subset of the triple-negative cancers. Of course, this would have to be rigorously tested, but it’s an excellent lead already.” If you have a strong family history and the BRCA mutation, you have several options.The most extreme is a mastectomy and salpingo-oophorectomy to remove ovaries and fallopian tubes. Less extreme and more in our control are exercise and diet modifications that can help reduce the risk of all forms of breast cancer and a batch of other illnesses, including cardiovascular disease and diabetes. “In general, this means at least five servings daily of fruits and vegetables, with an emphasis on cruciferous veggies such as broccoli, kale and cauliflower; complex carbohydrates, such as whole grains, seeds and nuts; and little or no trans or saturated fats,” Prijatel says.“I would save alcohol for special occasions only – and keep it to one drink at those times.” © CTW Features
aDverTorial
Patti joins breast cancer research
W
hen Patti Field learned she had breast cancer, she didn’t hesitate. She saw a surgeon two days after her diagnosis and had surgery the next week. a month later, Patti didn’t hesitate when she was asked to participate in a research study on chemotherapy. “I was all for it,” she recalls.“It’s research and it could help someone. You know, it may help my grandkids or my great-grandkids.” Patti, 63, had come to rely on the physicians and staff at the Cancer Center at essentia health-St. Joseph’s Medical Center in Brainerd. So when her oncologist, Dr. John harris, said she could be part of a national research study, she was eager to learn more. “I wanted to help somebody else,” says the Pequot Lakes resident.“I was more concerned for someone else who was finding out that they have breast cancer. I didn’t think
about myself.” Barb Morris, an oncology clinical research nurse, explained the study is testing the effectiveness of adding a drug to the standard chemotherapy regime for the type of invasive breast cancer that Patti faced. “Barb answered every question I had,” Patti says.“You know those drugs – they have those long names that you can’t pronounce and have like 14 letters in each word. Barb took the time to explain how each drug works and what it is doing. Same with Dr. harris. the whole team was that way.” In august of 2011, Patti joined a growing number of women in the national study and a growing number of patients in the Brainerd Lakes area participating in cancer research through the essentia health Cancer Center. as a Community Clinical oncology Program of the national Cancer Institute, the center and the essentia Institute of rural health
can enroll patients in hundreds of studies on cutting-edge therapies and treatments. the chemotherapy clinical trial randomly divides women into two groups. one group receives the drug, called trastuzumab, and the other group receives just standard therapy. Patti did not receive the drug but underwent all the tests and exams to gather data. her health will also be monitored for 10 years as part of the study. after surgery, chemotherapy and radiation, Patti learned last august that she was cancer-free. She reflected on when she got the first call that told her that she had Stage IIIC breast cancer. “I babbled a bit when they called me,” Patti remembers.“then I said ‘oK, Patti, are you gonna be a boohoo or a fighter?’ there really was no choice for me. I was going to be a fighter. I just knew that I would be positive and I would be fine.”
her positive attitude carries over to her participation in the clinical trial. “they’ve done so much research on cancer and that’s how we’ve come so far,’’ Patti says.“I know we’ll find a cure for it. Some day I think there will be shot to prevent cancer that you’ll get when you’re a baby, just like they did with polio.” Learn more to find out more about cancer clinical trials, call the Cancer Center at essentia health-St. Joseph’s Medical Center at 218.828.7408. to see clinical trials for other conditions and diseases available through the essentia Institute of rural health, go to essentiaInstitute. org.
Provided by Essentia Health
23