THE
OF
POWER
PINK 2016 EDITION OCTOBER 14
SURVIVOR STORIES
....................... REBECCA CARLTON
KELLY BLAYLOCK Entering into her third fight with breast cancer, Kelly Blaylock is a survivor, crediting her positive outlook and her support system of church, family, and friends with the ease and grace with which she has dealt with the situation.
Rebecca Carlton didn’t find a lump or have any other concerning signs that led her to make an appointment for her yearly exam with her doctor last year. It was a conversation with a friend, who was discussing her own breast cancer, that prompted the visit.
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VICKI CARMICHAEL
GINA ROBINSON Gina Robinson, a 59-yearold New Albany resident, is a two-time survivor of breast cancer. Twice a week, Robinson and her BBFs go rowing up the Ohio River.
Vicki Carmichael called her long, blonde hair her “signature hallmark.” It’s how people recognized the 56-year-old Clark County Circuit Court judge from Jeffersonville. Before she started chemotherapy for stage 2 breast cancer earlier this year, Carmichael donated her hair to Locks of Love.
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BEKKI JO SCHNEIDER When Bekki Jo Schneider’s cancer returned in 2015, the part owner and operator of the Derby Dinner Playhouse did what she always does — she came up with a plan.
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ALSO INSIDE... • Understanding breast cancer at a molecular level.............................. PAGE
5
• Causes and risk factors..................................... PAGE
6
• Spouses’ stories.................................................. PAGE
9
• Pat Harrison Center..........................................PAGE
10
• Mary Kost - Cancer activist.............................PAGE
14
• What can fossils teach us about cancer...................................................... PAGE
18
THE POWER OF PINK GALA
This year’s 2016 Power of Pink Gala will be held on Oct. 21, 2016 at Kye’s in Jeffersonville. The theme will be the Roaring ’20s.
2 | FRIDAY, OCTOBER 14, 2016 | POWER OF PINK
News and Tribune highlights breast cancer awareness SUSAN DUNCAN News and Tribune editor
W
hen you mention the color of October, some people think of the transformation of green leaves into rich autumnal hues. But others have only one color in mind: pink. Pink is the color of breast cancer awareness, the focus of educational and fundraising efforts each October. Our Power of Pink section is inclusive of those efforts, as we highlight the experiences of five women, all diagnosed with breast cancer. Each found a way to cope in her own way, and all are an inspiration. These women aren’t just breast cancer survivors — they’re thrivers... • Bekki Jo Schneider: “I think having life plans — that are flexible — but life plans, give you that guideline to fall on when the bad things happen.” • Rebecca Carlton: “And there was a lot that was unknown, but at least I knew about it. I’m a Christian and I have a very strong faith, and it was just kind of like ‘if this is going to be my struggle, then I need to honor God in my struggle.’”
• Vicki Carmichael: “As a professional, educated woman you think OK, you’re going to go in and you’re going to tell the doctor what to do. But you go in and you get that diagnosis and you go, ‘OK what’s next? You tell me, because I don’t know what to do.’” • Kelly Blaylock: “My doctor said one day you will walk in here and have a bad PET scan. I would have to go back to a chemo infusion instead of the pill. But I’m not believing in that. That’s not my story.” • Gina Robinson: “I wasn’t sure I wanted to be in a support group, but it’s not like that. We cry together. We laugh together. We have a good time together. That’s where I feel like I got my strength was being around others who have been through it.” These “pink pages” also include an update on the Pat Harrison Resource Center — a godsend borne from a desire on the part of the center’s namesake to better help women take on the health challenge. We’ve also talked with a nurse navigator, who helps connect breast cancer survivors with the resources they need, and a certified mastectomy fitter, whose role is crucial to emotional well-being.
We’ve made much progress when it comes to early detection — key to successful outcomes — and in understanding treatment is threepronged: mind, body and spirit. Critical to the healing process, breast cancer survivors tell us, is the support they receive from family and friends. Essential, too, is caregiver support. Husbands, oftentimes primary caregivers, benefit from letting loose of the traditional “tough-guy persona” to accept support for themselves. A couple of husbands, Geoff Wohl and Doug Drake, shared their stories with us. Also profiled in this section is Mary Kost, who has volunteered with the American Cancer Society for nearly 20 years ago. The New Albany woman works tirelessly, lobbying lawmakers for funding, including for trials, and on bills related to access to care for cancer patients. Later this month, on Friday, Oct. 21, the News and Tribune will host its annual Power of Pink Breast Cancer Awareness Gala at Kye’s in Jeffersonville. In the three years we’ve been doing our gala, we have donated more than $77,000 to cancer research and education. The first two years, proceeds went to the American Cancer Society. Last year, the first of a three-year fundraising commitment to the Pat Harrison Resource Center, we raised $38,000. At the gala you can expect plenty of delicious food and libations, one-of-a-kind items on the auction block, inspirational stories and lots of laughter — after all, we’ll be celebrating life! Come join us! Susan Duncan is editor of the News and Tribune. Reach her at susan.duncan@ newsandtribune.com and 812-206-2130.
POWER OF PINK INDEX SURVIVOR STORIES • Kelly Blaylock.................Page 3 • Rebecca Carlton...............Page 4 • Vicki Carmichael.............Page 12 • Gina Robinson ................Page 19 • Bekki Jo Schneider............Page 20
BREAST CANCER AWARENESS • Understanding breast cancer at a molecular level...................................Page 5 • Causes and risk factors.....Page 6 • Spouses’ stories................Page 9 • Pat Harrison Center..........Page 10 • Mary Kost - Cancer activist..............................Page 14 • What can fossils teach us about cancer.....................Page 18
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Can’t stop moving Her diagnosis was followed by surgery to remove the lump and some lymph nodes, followed by chemotherapy and radiation treatment. “I did extremely well,” she said. “Never got sick, never missed a day of work.” “I did lose my hair, but I never focused on praying about that,” she said. “My faith was on not getting sick and not missing work. I didn’t feel like I BY JENNA ESAREY had that one in me.” For the News and Tribune The treatment was a success and “to celebrate my one year ntering into her third fight anniversary, my husband and I with breast cancer, Kel- ran in the Rugged Maniac (5K ly Blaylock is a survivor, Obstacle Race and Mud Run) crediting her positive in Paoli, which was awesome,” outlook and her support system she said. of church, family, and friends But then, “I noticed a spot with the ease and grace with over the holidays of 2014 and which she has dealt with the sit- got with my doctors.” In Februuation. ary 2015 she was told she had Blaylock was 36 in 2013 breast cancer again. when she was diagnosed with This time it was inflammatoinvasive ductal ry breast cancer, a breast cancer, the rare and highly agmost common kind. gressive form only “I just went in for seen in 1-5 percent my yearly exam,” of breast cancer pashe said. “I probtients. ably would have She returned to found it myself Floyd Memorial had I done my own Hospital, where she monthly exam like was treated the first we’re supposed to. time, but was reYou could clearly ferred to The James feel it. Thankfully Graham Brown I’m faithful with Cancer Center in my yearly.” Louisville. From Upon hearing there, her oncolothe diagnosis Blaygist recommended lock said she and — Kelly Blaylock her for a clinical triher husband, Daal in Nashville, TN. vid, were in a state “They didn’t know of shock. “We how to treat it,” she couldn’t go home that night,” said. she said. “Our boys were there Placed on a combination of and we didn’t know how to go chemotherapy and immunotherhome.” apy in March 2015, Blaylock They wandered around some traveled to Nashville for treatstores, killing time in a daze be- ment every week through July fore heading home to Jonathan, of this year, even after having then 15, and Malachi, then 8, a left mastectomy in October around 9:30. She told Jonathan, 2015. now 18, a few days later. “He That treatment stopped upon took it really well,” she said. the discovery of stage four met“He knew God had it. I didn’t astatic (advanced) breast cancer have an assumption of how he in lymph nodes all along her would react. I’m proud of him.” chest from left to right. “It is
Blaylock won’t allow cancer to slow her down
E
“
“If I wasn’t planted in the church I’m in today, I’m pretty sure I wouldn’t be here.”
Kelly Blaylock and her husband David Blaylock said they were in a state of “shock” when they learned Kelly had breast cancer. After a variety of treatments her cancer is now under control for the foreseeable future. | STAFF PHOTO BY JOSH HICKS
not curable,” she said. “But it’s controllable. We’re rooting for a miracle.” She and her family are faithful members of Church on the Rock in New Albany. “If I wasn’t planted in the church I’m in today, I’m pretty sure I wouldn’t be here,” she said. “I’ve seen people in our church with stage four cancer cured. It’s made it easier for me.” In late August she had radiation treatment and as of Sept. 21 is on nine chemo pills a day on a schedule of two weeks on, one week off. She will see her oncologist every five to six weeks and have a PET scan every three months. “My doctor said one day you will walk in here and have a bad PET scan,” she said. “I would have to go back to a chemo infusion instead of the pill. But I’m not believing in that. That’s not my story.” The cancer is confined to lymph nodes across her chest, both surface and deep tissue. “I’m thankful it’s not roaming
around in there,” she said. “It’s not attacking an organ or anything.” Blaylock doesn’t believe her illness has been too hard on her boys. “They haven’t seen me sick,” she said. “Even after the second diagnosis I kept thinking, ‘they have the wrong person.’ I never felt sick.” Any angst they might have felt over their mom’s health may have been eased by her ability to maintain normal mom duties such as transporting them to football and wrestling practices as well as band rehearsals and performances. Blaylock also has been able to continue her volunteer activities at church and at the Juvenile Detention Center in Jeffersonville. She even completed a two-year Bible College at her church, graduating in May 2015. She wasn’t able to escape one side effect of the first two cancer treatments, though — the loss of her hair. “The hair was the worst part,” said Blaylock, who likely won’t lose
her hair with the current treatment. “This time it may get thinner. I’m thankful they said I wouldn’t lose my eyelashes, too.” Concerned about her attractiveness to her husband, Blaylock struggled with her decision to forego reconstructive surgery after her mastectomy. Since her cancer was on the surface of her skin, the mastectomy surgery was extensive and required skin grafts from her back. Reconstruction would have required even more. “That was a hard decision,” she said. “You want to look like a woman for your husband. You want to be attractive, so that was extremely hard. I’m definitely blessed with the man God appointed me to marry.” For the foreseeable future Blaylock’s cancer is under control. “I don’t like the word remission,” she said. “That sounds like you’re in the belief that it will be back someday. That’s not how I believe. I’m believing for a miracle.”
4 | FRIDAY, OCTOBER 14, 2016 | POWER OF PINK
Every journey is unique
Knowledge empowering for cancer survivor
DIAGNOSIS
BY APRILE RICKERT
aprile.rickert@newsandtribune.com
R
ebecca Carlton didn’t find a lump or have any other concerning signs that led her to make an appointment for her yearly exam with her doctor last year. It was a conversation with a friend, who was discussing her own breast cancer, that prompted the visit. Although it was unexpected, the then-48-year-old senior lecturer in communications at Indiana University Southeast wasn’t shocked when she got a diagnosis for breast cancer. When she left the appointment, after physicians had performed not only a mammogram but an ultrasound, she was fairly certain of the news she would receive. “I basically went into strength mode,” she said. “‘Let’s fight this. Let’s do it.’” Carlton’s results revealed a 1.8 cm lump. After a biopsy, she was diagnosed with stage 1 breast cancer with no lymph node involvement. She said she is incredibly grateful that she had the conversation with her friend that prompted the early discovery. “I felt really blessed,” she said. “I felt really fortunate that I had had that conversation and I really felt grateful that we were doing this now. “And there was a lot that was unknown, but at least I knew about it. I’m a Christian and I have a very strong faith, and it was just kind of like ‘if this is going to be my struggle, then I need to honor God in my struggle.’”
There are three things that fuel most breast cancers — estrogen, progesterone and a protein called Human Epidermal Growth Factor Receptor 2 (HER2). Carlton’s was fueled by androgen, and is considered “triple-negative” because it does not line up with the other three causes. She underwent surgery to remove the lump in the fall, but because she is considered young for breast cancer, and because of the type of cancer it was, she went through chemotherapy and then radiation last fall and into the winter But that’s not the end of the story. Carlton said the side-effects of the treatment — facing her fear of needles and coping with the inevitable hair loss were big parts of her recovery that she had to deal with and overcome. “For me, those were really bigger things for me to conquer than the breast cancer,” she said. “I knew after surgery, the breast cancer was going to be gone. They were going to remove my cancer and it was going to be gone.” As her way of coping with what she was going through, Carlton armed herself with as much knowledge as possible about what she was experiencing. “I did a lot of research because information makes me feel empowered,” she said.
REFLECTION OF SELF One of the things she learned was that around 14 days after the first chemotherapy treatment, most patients begin to experience hair loss. She prepared for this. Before the diagnosis, she had been growing out her hair to donate it. Before she lost it, she cut her hair short and saved it. She found a man in Minneapolis at Jon Richards Salon who could work the hair back into new growth after her treatments were over. “Having that to look forward to was very empowering to me
Rebecca Carlton, a enior lecturer in communications at Indiana University Southeast, speaks to her class. Carlton’s mother and grandmother were both diagnosed with breast cancer in their 60’s. | STAFF PHOTO BY JOSH HICKS
and got me through difficult times,” she said. “It was about feeling like myself. It was about feeling normal.” Before she had enough hair regrowth to be able to get the extensions, she worked with other salons to have her wig adhered to her head, and wore it 24/7. Although this is not possible for everyone, because chemotherapy tends to make patients’ skin very sensitive, Carlton’s unique situation helped restore her sense of normalcy as quickly as possible. “If you think of being reminded of your health situation in every single reflective surface, it can be very overwhelming,” she said. “A picture frame. A microwave. Somebody’s glasses. Your mobile phone. A computer screen.” She said it’s very important for all women experiencing breast cancer to take that path the way that makes sense for them. “Go through your journey
the way you need to go through it,” she said. “Some people feel very comfortable wearing wigs, some people feel comfortable wearing turbans, some people feel comfortable [without covering their heads]. But I wanted to feel and look like me as much as possible.”
FAMILY HISTORY Carlton’s mother and grandmother both had breast cancer, and so she had it as a possibility in the back of her mind. But they were diagnosed in their late 60s. “I just didn’t expect it at 48,” she said. She said that having gone through this with her mother several years before, as well as friends, helped her be prepared. “We were uncertain but I think we felt fairly prepared for the battle,” she said. “I don’t want to make it sound like it was an easy ride, but my faith is very strong.” She said support from her husband, Dwight Mielke, and sons
Dylan, 19, and Devin, 15, as well as friends she’d experienced this with contributed greatly to her well-being over the past year. She also found solace in a closed Facebook group for people with her type of cancer. A year later, and Carlton is considered free and clear of the cancer, or NED — No Evidence of Disease. She’s still in that Facebook group, but instead of being the one asking questions, she can offer some answers to people who may feel scared and hopes she can share what she’s learned with others. “I believe in the idea of a self-fulfilling prophecy, where if I perceive myself as being as normal as possible, it’s going to help me be as normal as possible,” she said. “I tried to keep that frame of mind so that I could live as close to a typical life as I was living. I’ve learned that I’m stronger than I thought I was. And I’ve learned that knowledge to me is empowering.”
POWER OF PINK | FRIDAY, OCTOBER 14, 2016 | 5
A deeper layer of comprehension How understanding breast cancer at a molecular level is changing our thinking BY HAROON HUSSAIN
PhD Student, Brunel University London
The evolution of past and modern therapies in breast cancer has been an inspiring illustration of the progress that has been made towards cancer cures. Breast cancer makes up a quarter of new cases worldwide and is the most common cancer in women. While the number of people with breast cancer has been increasing fewer people are dying from the disease, potentially because of better screening and diagnosis at an early and more curable stage. Thanks to better treatments, more people are also surviving five years after diagnosis, but this wouldn’t be possible with the strides that have been made in understanding breast cancer at a molecular level. Breast cancer was long considered as a tumour with an underlying relationship with oestrogen. Instead, driven by a greater understanding of the molecular basis of breast cancers, we now see a more complex picture. We now know breast cancer to be an umbrella of different diseases – as many as ten different types – with a number of subtypes. And although a number of factors can contribute towards developing breast cancer, there is no single agent or cause. A closer look at cancer detection, molecular biology and progression is telling us more about the underlying factors in breast cancer development and spread.
NO ONE CAUSE OF BREAST CANCER Despite the uncertainties of what exactly causes breast cancer, there is abundant evidence for hormonal and reproductive factors. A number of environmental factors may also lead to mutations in DNA, such as exposure to radiations, chemicals and alcohol. However not all of the mutations are environmentally induced – some occur spontaneously. Other factors that increase risk of developing breast cancers are
age, gender, family history and certain medical conditions. A wide range of genes and proteins may contribute towards the development of breast cancer or fail to prevent it; these can be either involved in regulating the cell cycle, promoting the growth of tumour cells (known as oncogenes) or suppressing tumour cell growth (known as tumour suppress genes). There are also genes that are involved in promoting cell death along with genes involved in DNA repair. For example, inherited breast cancers can involve mutations in BRCA1 and BRCA2, genes that are crucial in DNA repair. Mutations in these genes result in incorrect repair of DNA damage which in consequence increases risk of further mutations occurring that may then lead to cancer. Genetic tests are now available to test for such genes, which are known to increase the risk of developing breast cancer by 40-90%.
FOUR SUBTYPES Gene expression is the process in which genetic instructions are used to make gene products, mainly proteins that function as enzymes, hormones and receptors. Gene expression profiling is a technique that allows scientists to determine the expression levels of hundreds or thousands of genes within a cell. Breast cancer cells have receptors that other hormones or proteins can attach to and stimulate the cancer to grow. These receptors include the hormones oestrogen and progesterone, and human epidermal growth factor 2 (HER2), a protein. The expression of breast cancer receptors has led to the molecular classification of breast cancer into four distinct subtypes: basal type or triple negative breast cancers (TNBC), HER2 positive breast cancers, Luminal A and Luminal B breast cancers – each with a different combination of positive/ negative receptor interactions. A Luminal B type cancer will be positive and/or negative for oestrogen receptors and positive for HER2, for example, while triple negative breast cancers are those that do not have receptors
A closer look at molecular biology and progression is telling us more about the underlying factors in breast cancer development and spread. | PHOTO FROM SHUTTERSTOCK
for either HER2 or for the hormones oestrogen and progesterone, and affects about a fifth of women with breast cancer. Establishing the presence of these receptors can allow clinicians to make more accurate prognosis and work out which treatments will be more effective for particular patients. For example, 20-30% of breast cancers are known to be HER2 positive, which indicates a poorer prognosis with a reduced overall survival rate. Some breast cancers are more common in particular populations, for example the occurrence of triple negative breast cancers is thought to be three times higher in women of African descent and usually more aggressive than in European women, there is still some debate over wheather this is due to lifestyle (enviromental) factors or biological reasons.
TARGETED THERAPIES Targeted therapies tend to target a specific protein or receptor found in tumour cells making the treatment selective and more effective. So while HER2 positive breast cancers have a poorer prognosis, treatment has im-
proved through targeted therapies such as Herceptin, which fights against cancer cells by suppressing the function of HER2 to prevent tumour growth. Unlike chemotherapy and radiotherapy, which affects both normal and cancerous cells, using targeted therapy reduces overall side effects. But it isn’t perfect – some patients still don’t respond to targeted therapy and there can be resistance to the drug in some cases. New technology such as proton beam therapy may provide a more targeted form of radiotherapy.
THE GENE TRAIL In addition to BRCA1 and BRCA2, a number of genes – though rarer – that increase the risk of breast cancer when faulty have been identified. These include the ATM gene – which helps repair damaged DNA, the CDH1 gene – which makes a protein that helps cells join together to form tissue, and the CHEK2 gene – which helps create instructions for a protein that stops tumour growth. A paper in Nature Genetics recently identified a new breast cancer gene called RECQL, mutations in which are associated
with breast cancer. There may yet be more. Around 5-10% of all breast cancer cases are hereditary, and while diagnostic or genetic tests are available for some genes, there are yet to be any for some of the others already identified. Although molecular subtyping of breast cancer has been proven to be useful with more patient-specific treatments, the techniques used to classify breast cancers into these subtypes can vary from place to place. Triple negative breast cancers may be the most reliably classified and identified, whereas other subtypes may have some variance. Changes in receptor status, for example, can also occur throughout the progression of the disease and in some cases equivocal results – which is seen in some HER2 testing – can make it uncertain what subtype the patient belongs to and what treatment they should have, or what the results might be. Understanding breast cancer at a molecular level opens up the way for better treatments, but we’re also discovering just how complex these cancers are. In the long run, the more detailed knowledge we have the better.
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6 | FRIDAY, OCTOBER 14, 2016 | POWER OF PINK
Mystery of breast cancer BY RICHARD G. ‘BUGS’ STEVENS Professor, School of Medicine, University of Connecticut
For most of the common cancers, a major cause has been identified: smoking causes 90% of lung cancer worldwide, hepatitis viruses cause most liver cancer, H pylori bacteria causes stomach cancer, Human papillomavirus causes almost all cases of cervical cancer, colon cancer is largely explained by physical activity, diet and family history. But for breast cancer, there is no smoking gun. It is almost unique among the common cancers of the world in that there is not a known major cause; there is no consensus among experts that proof of a major cause has been identified. Yet, breast cancer is the most common form of cancer in women worldwide. The risk is not equally distributed around the globe, though. Women in North America and Northern Europe have long had five times the risk of women in Africa and Asia, though recently risk has been increasing fast in Africa and Asia for unknown reasons.
IS DIET TO BLAME? Up until about 20 years ago, we thought it was all about diet. As people abandon their local food sources and begin to eat highly processed foods with lots of fats, the hypothesis went, breast cancer was thought to be more likely to develop. This hypothesis was logical because when researchers analyzed countries’ per capita fat consumption and breast cancer mortality rates, they found a strong correlation. In addition, rats fed a high-fat diet are more prone to breast tumors. By studying Japanese migrants to California, researchers found that the first generation had low
risk like their parents in Japan, but then by the second and third generation, risk was as high as white American women. So, the genetics of race did not account for the stark differences in the breast cancer risk between Asia and America. This was also consistent with the idea that the change in food from the lean Asian diet to the high-fat American diet causes cancer. So it all made sense. Until it didn’t. Diet studies find that fat is not the answer Starting in the mid1980s, large, well-done prospective studies of diet and breast cancer began to be reported, and they were uniformly negative. Fat in the diet of adult women had no impact on breast cancer risk at all. This was very surprising – and very disappointing. The evidence for other aspects of diet, like fruits and vegetables, has been mixed, though alcohol consumption does increase risk modestly. It is also clear that heavier women are at higher risk after menopause which might implicate the total amount of calories consumed if not the composition of the diet. There is a chance that early life dietary fat exposure, even in utero, may be important, but it’s difficult to study in humans, so we don’t know much about how it might relate to breast cancer risk later in life. If diet is not the major cause of breast cancer, then what else about modernization might be the culprit?
TWO KINDS OF RISK FACTORS The factors shown to affect a woman’s risk for developing breast cancer fall into two categories. First, those that cannot be easily modified: age at menarche, age at birth of first child, family history, genes
like BRCA1. And second, those that are modifiable: exercise, body weight, alcohol intake, night-work jobs. The role of environmental pollution is controversial and also difficult to study. The concern about chemicals, particularly endocrine disruptors, started after the realization that such chemicals could affect cancer risk in rodent models. But in human studies the evidence is mixed. Because child bearing at a young age and breast feeding reduce risk, the incidence throughout Africa, where birth rates tend to be higher, and where women start their families at younger ages, has been lower. Death rates, however, from breast cancer in sub-Saharan Africa are now almost as high as in the developed world despite the incidence still being much lower. This is because in Africa, women are diagnosed at a later stage of disease and also because there are far fewer treatment options. The question is whether the known risk factors differ enough between the high-risk modern societies and the low-risk developing societies to account for the large differences in risk. The answer: probably not. Experts think that less than half the high risk in America is explained by the known risk factors, and that these factors explain very little of the difference in risk with Asia. A related question is whether the high risk in America and Northern Europe is due to a combination of many known exposures, each of which affects risk a little bit, or mostly due to a major cause that has so far eluded detection. And maybe some of the known risk factors have a common cause which we don’t yet understand.
We believe in the Power of Pink.
Like countless others, we at Kightlinger & Gray have been personally impacted by breast cancer within our families and our workplace. We are proud to be a part of ongoing campaigns to raise awareness here in Southern Indiana and we applaud the American Cancer Society’s national efforts to push for research, treatment and survivor support.
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8 | FRIDAY, OCTOBER 14, 2016 | POWER OF PINK
Growing Awareness to Save Lives In the battle against breast cancer, early detection is a woman’s most powerful weapon. In fact, according to the National Cancer Institute, when breast cancer is detected in an early, localized stage, the five-year survival rate is 98 percent. That’s why it is so important for all women to make breast health awareness a regular part of their healthcare routine.
A mammogram can detect breast cancer
immediately. Women of all ages should
in its earliest, most treatable stages,
speak to their doctor about his or her
and many major health organizations
personalized recommendations for
recommend annual mammogram
breast cancer screening.
screenings for women beginning at age 40. Experts also recommend clinical breast exams and breast self-exams to check for breast abnormalities on a regular basis. Any woman noticing unusual changes in her breasts should
As we recognize Breast Cancer Awareness Month, we remember the women who have lost their lives to the disease, and we voice our support for those in the fight of their lives.
contact her healthcare provider
Join the Power of Pink on Facebook to show your support for Breast Cancer Awareness. facebook.com/powerofpink.southernindiana #POP2016
These local sponsors join the News and Tribune in raising awareness of the importance of early detection in the fight against breast cancer and the importance of continued support for breast cancer research.
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POWER OF PINK | FRIDAY, OCTOBER 14, 2016 | 9
Meeting of the men
Men’s support group helps spouses of breast cancer patients
BY JEROD CLAPP
jerod.clapp@newsandtribune.com
S
OUTHERN INDIANA — After going in for a regularly scheduled mammogram, Geoff Wohl said his wife, Cindy, got the phone call no one wants. She didn’t feel a lump before going in or any pain, but the cancer was there. The months ahead would involve a lumpectomy, bouts of chemotherapy and radiation treatments. They would face some of the hardest times they’d ever seen together, but the support groups were out there if she needed one. But what about Geoff? He happened upon a group — Together for Breast Cancer Survival — a men’s caregiver support group that met at Gilda’s Club in Louisville. He’d be caring for Cindy in ways he never had to and for some of what was ahead, he didn’t know what to expect. He said he was also skeptical of attending a support group. “I was older than some of the folks,” Wohl said. “My initial thought was this was going to be a pity party, or someone who was going to try to fix me and my emotional state. But it’s really not that at all. I think a lot of people are apprehensive when they join a group like this that [the members] want to land on them and fix their problem. Really, you just come on in, sit down, tell us who you are and what you’re going through.” That was in 2010 when he first signed up. Cindy is on the mend and he continues to attend meetings to help other men lost in the confusion of what was to come, how to care for spouses in treatment, and even live with the possibility of death. But he said the group is a fantastic resource, and one that’s accessible for all types of men. He
Doug Drake started Breast Cancer Survival after his wife was diagnosed with breat cancer in 1999. | STAFF PHOTO BY TYLER STEWART
said rather than focusing on the negative, it’s more like a conversation with the guys.
SHARED EXPERIENCES Together for Breast Cancer Survival got its start in New Albany, and continues to meet at the Cancer Center of Southern Indiana every month. Doug Drake, the CEO of Personal Counseling Services in Clarksville, started the group after his wife, Janet, was diagnosed with breast cancer on Feb. 1, 1999. Drake said Janet started attending support groups with other women fighting breast cancer and told him to go to one with her. He said he fought his hesitation, went to one meeting and kept going after that, but was pushed by other members to start a support group for spouses. “There was such a need, but men, in general, we think we’re supposed to be the strong ones,” Drake said. “We’re not supposed to show that emotion because we
have to uphold the wife, the significant other, and we’ll be OK. But the reality is we generally aren’t gregarious like women and talk about our emotions and they do such good job with that.” He said he wanted to give men an outlet for all the situations they found themselves in, figure out ways to deal with some of side-effects of treatments and how to console one another. But he said sometimes, the conversation centers on how to take care of one’s self. “We’re so dedicated to make sure our loved one has everything they need,” Drake said. “I’m good at preaching it, but I’m not good at doing it. But I’ve learned over the years that it’s really good to help them understand that if you’re ill or you run yourself into the ground, you can’t take care of someone else.” Each group has had a few men at a time, he said. But since December 2001, they’ve helped about 150 men. A wide range of members
who’ve experienced breast cancer through their wives attend the group, whether they’re in New Albany of Louisville. Drake said they’ve all got something different to contribute, but more often than not, their information is something that another man is looking for. Wohl said some of the men have lost the women they loved, but they continue to come to the group to help other men. Some of them have gone on to new marriages and it’s good to see a range of experiences from the group. “There’s some wisdom in the room, there are guys who have some experience,” Wohl said. “Some of them don’t have their wives anymore, things didn’t go so well. But they feel like they have something that helps them hold on and how to deal with it.”
SAVING LIVES But Drake said the group has done more than just give advice. He said a couple of men started attending and weren’t sure about
the group. Later, they told him Together for Breast Cancer Survival saved their lives. “Up until now, I’ve had four different men tell me that if they didn’t have the group, they would have committed suicide, and they had a plan. Of course, they didn’t tell me until after the fact, but I would have told them to get help [if I’d known sooner].” He said the men in the group are there for each other beyond the walls of the rooms where they meet. He said sometimes that means getting dinner together or showing up when a loved one dies. Drake said no matter where they get the fellowship they need, men who are helping their significant others through breast cancer should find some way to talk, even if it’s just asking questions. “I think that’s part of the group, it goes beyond sitting in a room for the group,” Drake said. “Any man can call me at any time and I know if they do, it’s not for the fun of it.”
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Welcoming vision
BY JENNA ESAREY
For the News and Tribune
A
n historic, but run-down, two-story home that served as little more than an eyesore for years has been transformed into a bright, welcoming haven for cancer patients and their caregivers. The Norton Cancer Institute Pat Harrison Resource Center, in partnership with Clark Memorial Hospital, sits at 1206 Spring St. just across the street from Clark Memorial, offering a range of services including massage, music therapy, a resource library, and a full-time nurse navigator. The center was made possible largely through the efforts of breast cancer survivor Pat Harrison, southern Indiana real estate agent and philanthropist. Harrison’s personal commitment ran to around $300,000, just under half the facility’s total cost. “After my cancer treatment in 2013, I came over to look at a prosthesis and bras,” at the hospital’s resource center on its campus, she said. “The building just wasn’t what I expected. It just wasn’t a happy place. It looked like a dug out basement. They did a lot of different things in that building. It was like a menagerie.” When she got to the room with the bras, “it looked like the storage of a shoe store,” she said. “As we went back to the office we passed a mannequin with a bra on and a teal feather boa. I thought what if I was 30 years old, 24 years old, a young person with a husband and children? To see what I saw would be devastating. To go through chemo and radiation and see what I saw would be devastating.” Upon inquiring, Harrison
Harrison’s vision becomes full-service cancer resource center
learned that the resource center had an extremely small budget. “That was the best they could do,” she said. “I just went wild. I called people I knew who had money and could help. I said ‘we need to make it charming and ladylike.’” After discussing the situation with friends, she realized she needed more than just a nicer building. “I knew we were going to have to have nurses and staff to run this thing,” she said. She partnered with Norton Cancer Center and the facility’s fourth cancer resource center, their first in Indiana, was born. The Pat Harrison Resource Center opened to the public in March. “Not to take anything away from Louisville, but probably the nicest thing is that it’s on this side of the river,” Harrison said. “A lot of people feel like going to Louisville is a real chore.”
A WELCOMING PLACE The more than 100-year-old stately brick house was restored to maintain its character and the feel of a home, rather than a clinical setting. Sunny, light-filled rooms with high ceilings house a massage therapy room, living room with lending library, wig room, meeting space, offices, and a prosthetic fitting room. Photographic prints of natural areas around southern Indiana by local artist Donald Vish adorn the walls, bringing the outdoors in. A newly completed Meditation Garden brings guests to the outdoors where they can commune with nature, rest, and rejuvenate. “Now it is one gorgeous facility,” Harrison said. “It’s not just for breast cancer, it’s open to any cancer patient. If you don’t need a bra, you don’t need a wig — there’s massages. Sometimes you just need a friend.” The center’s services are free to any cancer patient regardless of where they are receiving treatment, along with their primary caregiver. And the building and garden are open to anyone at all. “It’s more like a house than a clinic,” said Abby Parrish, certified mastectomy fitter and of-
CELEBRATING STRENGTH. FIGHTING FOR TOMORROW.
www.ius.edu
The Norton Cancer Institute Pat Harrison Resource Center opened in a more than 100-year-old stately brick house at at 1206 Spring St. | SUBMITTED PHOTOS
fice coordinator for the center. “I think people feel more relaxed. It feels like home.” The living room is comfortably furnished with a sofa and chairs, coffee table and a built-in bookcase loaded with reading and resource material. The wig room brims with wigs, scarves and hats, all available at no charge. Two solariums and a conference room round out the first floor spaces. Upstairs, guests will find a massage therapy room, prosthetic fitting room, and offices. The Patient Navigator Program provides support and education for patients with any type of cancer and can assist with education, communication, coping, and connecting patients with appropriate healthcare and community resources. Massage, reiki, and music therapists rotate through during the week. Yoga and meditation are offered regularly as well. Art therapy is in the works, along with a number of classes and seminars. A smoking cessation series of classes starts Nov. 2 and a makeup workshop titled “Look Good Feel Better” will be
The site houses a coference rooma, massage therapy room, prosthetic fitting room, and offices.
held Nov. 7. Support groups are being formed. “That’s something that is really needed,” said Debbie Pirtle, the center’s nurse navigator.
“It’s been wonderful since we opened,” said Parrish. “But there are still a lot of people who don’t know we’re here. We need to get the word out.”
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Early stage breast cancer: How to know whether to forgo chemo BY VALERIE MALYVANH JANSEN, CLINICAL INSTRUCTOR, INGRID MAYER, ASSOCIATE PROFESSOR OF MEDICINE Vanderbilt University
There has been substantial publicity about the MINDACT trial, which could lead to changes in breast cancer treatment. The study’s results suggest that women with a certain genetic profile would have a good chance of survival and cure regardless of chemotherapy. While the results are encouraging, breast cancer treatment decisions are complex, and this study does not necessarily provide a clear yes or no answer about the need for chemotherapy. As oncologists, we see this latest scientific development as yet another powerful tool in assessing a patient’s risk of developing cancer recurrence. However, the study results cannot be used as a sole tool to help guide treatment decision making. It does not tell you that if a patient has a genetic profile associated with high risk of recurrence, taking chemotherapy would change that risk. In essence, this trial is one more tool to inform patients and physicians about a tumor’s biologic behavior (more or less aggressive, more or less chance of development of a cancer recurrence). But the take-home message is that these results still do not help physicians and patients decide if chemotherapy can be skipped or not.
A TREATMENT MAINSTAY For years, surgery was usually the first step to remove a breast cancer tumor from the body. Both surgery and radiation (needed in certain cases) are helpful in promoting “local control” of the breast cancer. Treatments such as chemotherapy and/or hormone-blocker pills are considered as additional or adjuvant treatments, to help “sterilize” the rest of the body (“systemic control”) from potential microscopic cancer cells that can break off from the original tumor in the breast, and ultimately may be responsible for the so-called distant recurrence of the breast cancer. The decision of whether a breast cancer patient will receive chemotherapy and/or hormone-blockers is based on ma-
Breast cancer is the second leading cause of cancer-related deaths in American women. | PHOTO FROM SHUTTERSTOCK
ny factors, including tumor size, grade, lymph node status, and presence or absence of hormone receptors or HER2 receptors. In years past, chemotherapy was given to most women. It often brings unpleasant side effects, including nausea, hair loss and fatigue. Some of the toxic drugs used in chemotherapy can sometimes cause health issues years down the road, such as thinking or memory problems called chemo brain. In addition, chemotherapy requires a great deal of time. It is also expensive, often costing tens of thousands of dollars, US. The decision of whether to have chemotherapy or not is, thus, a very important choice for hundreds of thousands of women receiving treatment for breast cancer. It is understandable that many women prefer not to have chemotherapy. The good news is that many women with early stage disease are now potentially cured, sometimes without chemotherapy given after surgery.
BETTER UNDERSTANDING OF A COMPLEX DISEASE Breast cancer is the most common cancer diagnosis and the second leading cause of cancer-related deaths in American women. Only lung cancer kills more women. Not all breast cancers are alike. In fact, we are finding that many are much more aggressive than others. Many respond well to new therapies. In a new era of personalized medicine, we, as oncologists who specialize in breast cancer, have much more information than ever to guide us in helping our patients. Research has found that more than 75 percent cases of breast cancer express what we call hormone-receptors, which are proteins in the cancer cell that are “fed” by the hormone estrogen. This “fuel”, in turn, causes the cells to grow and divide. These cancers are called estrogen-receptor positive, or ER+. Treatment
of early stage ER+ breast cancer consists of surgery, sometimes radiation, and hormone-blocker (endocrine) therapy with or without chemotherapy. After a woman’s tumor is examined in a biopsy, some of the recently developed profiling tools can be used to help assess risk of recurrence and death in a more precise way. First, there is Adjuvant! Online. This software provides an estimation of chemotherapy effectiveness when added to endocrine therapy, based on clinical-pathologic features, or what we see in a patient upon exam, or what we learn through laboratory tests. Second, there is Oncotype DX, a 21-gene test, that actually has the ability to predict chemotherapy benefit and the likelihood of distant breast cancer recurrence, or metastasis. More recently, a third tool called MammaPrint was developed. This 70-gene signature examines 70 genes involved in breast cancer growth and surviv-
al, and was the one tested in the MINDACT trial. Unlike Oncotype DX, it only provides risk assessment (low risk or high risk) for distant recurrence, or metastasis, but it does not predict chemotherapy benefit. The purpose of the MINDACT (Microarray in Node-Negative and 1 to 3 Positive Lymph Node Disease May Avoid Chemotherapy) trial, an international, prospective, randomized phase 3 study, was to determine the clinical utility of the addition of the 70-gene signature (MammaPrint) to standard criteria in selecting patients for chemotherapy. The analysis focused on patients with discordant risk results. These included those with cancers that showed high clinical risk but low genomic risk. High clinical risk would include a woman who had a larger tumor size and more lymph node involvement. Low genomic risk refers to those cancers lacking the genes that signify aggressive growth. SEE CHEMO, PAGE 22
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Living cancer-free
BY ELIZABETH DEPOMPEI
elizabeth.depompei@newsandtribune.com
J
EFFERSONVILLE — Vicki Carmichael called her long, blonde hair her “signature hallmark.” It’s how people recognized the 56-year-old Clark County Circuit Court judge from Jeffersonville. Before she started chemotherapy for stage 2 breast cancer earlier this year, Carmichael’s sister suggested she go ahead and get her hair cut. Instead of letting 10 inches of her hallmark hair fall to the salon floor, Carmichael donated it to Locks of Love. The hairstylist, Crystal Eldridge, told Carmichael to come back once her hair started falling out and she’d take care of it. The chemo made Carmichael so sick she had to be hospitalized. That’s when the inevitable happened. “I noticed my hair was falling out and I was like, ‘Oh, this is really happening. This is gonna happen,’ “ Carmichael remembered. “And so when I got out of the hospital my sister took me back to Crystal and Crystal shaved my head.” When she got home that day, Carmichael’s daughter, Cleneth Lumenario, said her mom’s shaved head looked all right. Carmichael told her daughter she could wear wigs or scarves and that yes, it would be all right. And then her husband, Lonnie Cooper, had his say. “... Lonnie walks in and he’s bald. And I looked over and I said, ‘You’re bald!’ and he goes, ‘You are too!’ “ Carmichael said, laughing between exclamations. “And so we took a pic-
Clark County judge became her own advocate
ture and we sent it to everybody and everybody laughed. They thought that was just great.” Carmichael leaned on those moments as she navigated the same illness that took her grandmother decades ago. Her sister was diagnosed with breast cancer four years ago and is now cancer-free. Her mother had a preventative double mastectomy. Carmichael, herself, has had six lumpectomies to remove non-cancerous tumors. Breast cancer wasn’t a new reality for Carmichael, but that didn’t mean she had all the answers. It was a 3D mammogram at Floyd Memorial Hospital in February that revealed what would later be diagnosed as breast cancer. A doctor told Carmichael she needed to be checked out by a surgeon, and what the surgeon said made Carmichael realize something was different this time. This would not be another benign tumor. Her tumor was spiculated. “I said, ‘What does that mean?’ and she said, ‘Well, it means it has like little fingers coming out of it,’ “ Carmichael recalled. “And I said, ‘That’s not good.’” She had stage 2 breast cancer, and it had already spread to her lymph nodes. Carmichael started chemotherapy shortly afterward, but it would be the only round of chemo she did. The treatment caused infections, low blood counts and other health issues. Carmichael said it was the scariest time since her diagnosis, with visitors having to wear masks and gloves just to see her.
TAKING CHARGE A turning point for her was when a friend, a judge in Indianapolis, recommended “Dr. Susan Love’s Breast Book.” Carmichael said she got the book on a Thursday and finished it that Saturday, filling it with notes. She went to her doctor that Monday and said “I got a book.” She told the doctor what she learned SEE CARMICHAEL, PAGE 17
Vicki Carmichael began chemotherapy for stage 2 breast cancer earlier this year. | STAFF PHOTO BY JOSH HICKS
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A friend in the fight BY APRILE RICKERT
aprile.rickert@newsandtribune.com
S
OUTHERN INDIANA — Mary Kost became a volunteer with the American Cancer Society nearly 20 years ago, after losing her motherin-law to a very rare form of cancer. The support she found there felt like a family, and she found it easy to get involved. Now, the New Albany woman also plays an important role in the organization’s advocacy arm — the Cancer Advocacy Network — where she lobbies state and federal representatives for cancer research funding and to make decisions that are in the best interest of all cancer patients, survivors and their caregivers. “Once I saw the impact it had, I realized I needed to do both,” she said, of working with both sides of the organization. “I needed to work with the ACS but also work to get those laws in place and that federal and state funding.” As an example of the work she does, Kost recently visited Washington, D.C., to speak to members of Congress about a couple of bills that are on the table — one deals with a Medicare loophole that charges patients if they have a colorectal screening and a polyp is found and removed. If the screening is clear, there is no charge. If the polyp is
found and removed, they face co-pays of up to several hundred dollars. “So what is happening, some of our senior citizens, they’re afraid they’re not going to be able to pay that, so they’re putting off having that [screening] done,” she said. “And then years down the road, what could have been prevented for a few hundred dollars can now turn into full-blown cancer that can cost upwards of $300,000 to 400,000 to treat.” She also spoke to legislators about the Quality of Life Bill, HR3119 in the House and S2748 in the Senate, which deals with palliative care for patients with cancer or other serious illnesses like heart disease. Curative care means procedures or treatments such as chemotherapy or radiation. Treating the side effects that may come as a result — pain, nausea, loss of appetite — falls under palliative care and is a relatively new concept in medicine. “What we want this bill to do is to train those doctors that we currently have about these types of care [and] make sure our new doctors and nurses are coming out of school with that same training,” she said. “And then we need to train the public, to make sure they know to ask for that. You can’t ask for something if you don’t know about it.”
CLINICAL TRIALS Another resource that patients may be underutilizing is clinical trials, Kost said. “Right now, only about 5 percent of the people who are eligible for the clinical trials are participating in them,” she said. “And one of the big reasons they’re not is people don’t know they exist or it’s very difficult for the doctors to find out what
Cancer advocate works to affect legislation for patients and survivors
Mary Kost. | STAFF PHOTO BY JOSH HICKS
clinical trials are available.” These numbers could go up if more people accessed a simple website, hosted by the National Cancer Institute, designed to put patients, their caretakers and physicians in touch with relevant and nearby trials. It can be found at www.cancer.gov/about-cancer/treatment/clinical-trials/ search. “You can go in and type in the type of cancer you have, add your zip code and your age,” she said. “And with just those three little tidbits of information, they can show you what clinical trials are available in an area close to you. “That is great because it allows the patient and their caregiver to participate a little more in their own care and be more proactive about it.” The trials can benefit both the patient and the cancer research. Kost said her mother-in-law par-
ticipated in a trial that was not successful for her particular situation, but physicians were able to learn from it and apply what they learned to other types of similar cancer. “And people are surviving it,” she said. “That’s the beautiful thing about this. What we learn in the trial about breast cancer might also help another kind of cancer, and vice-versa.”
GETTING EDUCATED, HELPING OUT Kost said that for patients or caregivers with questions, they can visit www.cancer.org or call the toll-free number 1-800227-2345 at any hour or day and speak to a real person, not a recording. “They’re manned by trained professionals to talk to that cancer survivor or that caregiver and help them find a support group in their area, or a hospital that is
performing a certain kind of surgery or does a certain kind of radiation,” she said, as an example. She said people wanting to volunteer can contact the ACS this way, too. For her, the choice to help out was simple. “It’s just the right thing to do,” she said. “It’s a way I can give back.” Kost said there are different ways to contribute, and she encourages those thinking about volunteering to just participate on the level with which they’re comfortable. But the most important part, Kost said, is for everyone to just keep raising awareness. “if nothing else, just simply remind those people you love to get those mammograms and do that monthly self-breast exam” she said. “That’s pretty easy to do — to remind your sisters, your mom or the lady you work with.”
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They’ve got your back
BY ELIZABETH BEILMAN
elizabeth.beilman@newsandtribune.com
J
EFFERSONVILLE — When someone is diagnosed with cancer, everything beneath them falls away. The women at the Pat Harrison Cancer Resource Center are there to catch them. “We all have various responses to the word ‘cancer,’” Debbie Pirtle, nurse navigator, said. “It can throw the strongest and most educated person right into a serious bout of anxiety. And it’s an anxiety-provoking event, so we’re hopefully there to help them understand and help them stay calm.” From the time of a breast cancer diagnosis to the months after surgery, Pirtle walks cancer patients through the journey hand in hand. She’s talking to patients about their diagnosis more in depth, ready with brochures to take home. She’s reminding patients of their upcoming appointments, checking in with them before surgeries. What are a patient’s insurance options? How does a patient care for their incision? Where can a patient find a wig or a breast prosthetic? Pirtle has the answers — and they’re free of charge. “It sounds so funny when I originally heard the term ‘nurse navigator’ because it sounds like we’re going to go sailing,” she said. “ ... But it really is appropriate because you can guide people and get them to services they need. You might not be the
one providing that service, but odds are I can find you the person that can help you and can tell you what you qualify for.” Some patients only need some guidance, while others rely on it heavily. “So many of our patients need somebody that can make sure that they don’t fall through the cracks,” Pirtle said. Nurse navigators also help patients who already feel overwhelmed understand the complex healthcare systems. “You walk into these great big hospitals and ... they don’t know who to contact to get what they need for services,” she said. Next to Pirtle’s side is Abby Parrish, a certified mastectomy fitter whose role is crucial in the emotional healing process. Parrish will measure and fit patients for breast forms, or prosthetics, that fit into special brassieres and camisoles. “It’s very important to become a woman again — to feel like a woman again,” she said, echoing her patients’ wishes. Breast cancer isn’t like most cancers. When a patient has breast cancer, you can see it. “I think it matters more now what a woman looks like because a woman can play a big important role outside the home,” Parrish said. “And if they don’t look good, if they don’t feel right, it doesn’t make them whole.” Many younger patients are opting for reconstructive surgery. But Parrish said prosthetics are a better option for some, especially elderly patients. “I enjoy when the women put the breast form on and they say, ‘I can go out now and not have anybody look at me. I can go to church. I can go to the grocery store. I can go out in public and not be self-conscious,’” she said. Many are wary or nervous when they come for their first fitting. But when they look at themselves in the mirror, the transformation is evident on their faces,
Nurse navigator, mastectomy fitter help cancer patients through journey
As a nurse navigator, Debbie Pirtle walks cancer patients through their journey. On of her main duties is answering questions pertaing to insurance, appointments and where patients can find a wig or a breast prosthetic. | PHOTOS BY JOSH HICKS
Parrish said. “Life doesn’t end,” she said of post-breast surgery realities. “It shouldn’t have to. You want it to be like it was before.” Both Pirtle and Parrish are excited their services are now offered at the Pat Harrison center, which is on Spring Street right across from Clark Memorial Hospital. The comprehensive resource center is the first of its kind in Southern Indiana. “We haven’t had the opportunity to help folks access some of these free services that just by good fortune Norton [Healthcare] has been able to provide along with Pat Harrison,” Pirtle said. Parrish is the only certified mastectomy fitter in all of Southern Indiana, and there are only two other places in Louisville which offer that service. “It’s so important,” she said.
Abby Parrish is a certified mastectomy fitter. Her role is often crusial in the emotional healing process for patients.
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POWER OF PINK THE RISK FACTORS FOR BREAST CANCER
CARMICHAEL: Former public defender was elected judge in 2007 CONTINUED FROM PAGE 12
about an “oncotype test,” a test that rates a person’s chance of recurrence and the person’s need for chemotherapy. After some convincing, the doctor agreed to the test. Carmichael’s results showed that a second round of chemotherapy wouldn’t be necessary. “As a professional, educated woman you think OK, you’re going to go in and you’re going to tell the doctor what to do,” Carmichael said. “But you go in and you get that diagnosis and you go, ‘OK what’s next? You tell me, because I don’t know what to do.’” Carmichael said Dr. Love’s book empowered her to take control of her treatment. She became her own advocate. More chemo, another lumpectomy, “breast conserving” surgery — they all were options. But Carmichael opted for a double mastectomy. She had already mentally prepared herself for the surgery and had talked to her husband about it. She would also go through 29 treatments of radiation, Monday through Friday for about six weeks. The risk of recurrence, she said, wasn’t worth a less invasive route. It all took its toll, but Carmichael’s support system — in-
cluding her preacher, family, friends and coworkers — helped her through those months. My mom and my sister and my husband and my daughter and my best friends all went with me to all of my appointments, and they were like ‘Oh, it’s the Carmichael entourage,’” she said. “I couldn’t have gotten through it without family and friends.” She said the Circuit Court No. 4 clerks were an “immense support,” collecting cards throughout the week and delivering them to Carmichael every few days. Colleagues filled in for her when she couldn’t take the bench, though she pushed to get back to work as soon as she could. Between chemo and radiation, Carmichael even found some normalcy, which in her case meant flying off to London and Paris for 10 days. Travel is a passion of hers and she has no plans to slow down her globetrotting. Her career ambitions haven’t slowed, either. Carmichael still remembers her seventh-grade field trip to former Jeffersonville City Court Judge Buzz Jacobs’ courtroom. She witnessed two attorneys and a judge working together to find a solution for one person. Something about the notion of helping others get
on the right track appealed to her and Carmichael declared her love for law then and there. “I got home that day and I told my parents, ‘I want to do that,’” Carmichael said. She would go on to get her law degree from the University of Louisville, clerk for the Kentucky Supreme Court, preside over Jeff city court and eventually become chief public defender for Clark County. In 2007, she was elected judge in Clark County and now presides over Circuit Court No. 4. Earlier this year, she applied for an open spot on the Indiana Supreme Court and became one of 15 finalists. She wasn’t chosen for the state’s high court, but her eye is still on the prize. “Still a goal,” she said. Carmichael is now cancer-free and healthy. She said she encourages women to be diligent about their health, and to be their own advocates in the doctor’s office, like she was. They could also learn a thing or two from her about optimism. “I’ve always had a positive outlook. I think that we’re all here for different reasons,” she said. “Part of that is I don’t worry about what’s going to happen, because that doesn’t get me anywhere. And so I take things one day at a time.”
Cancer is a formidable foe. Among women, no cancer poses a greater threat than breast cancer, which the World Health Organization reports is the most often diagnosed cancer both in the developed and developing worlds. Gaining a greater understanding of breast cancer may not prevent the onset of this disease that kills hundreds of thousands of women each year, but it might increase the chances of early detection, which can greatly improve women’s chances of survival. The following are the established risk factors for breast cancer. · Gender: Being female is the single biggest risk factor for developing breast cancer. Men can get breast cancer, but the risk for men is substantially smaller than it is for women. According to Breastcancer.org, roughly 190,000 women are diagnosed with invasive breast cancer each year in the United States alone. · Age: The American Cancer Society notes that about two out of every three invasive breast cancers are found in women ages 55 and older, whereas just one out of every eight invasive breast cancers are found in women younger than 45. The WHO notes that instances of breast cancer are growing in developing countries, citing longer life expectancies as one of the primary reasons for that increase. · Family history: According to the WHO, a family history of breast cancer increases a woman’s risk factor by two or three. Women who have had one first-degree female relative, which includes sisters, mothers and daughters, diagnosed with breast cancer are at double the risk for breast cancer than women without such family histories. The risk of developing breast cancer is five times greater for women who have two first-degree relatives who have been diagnosed with breast cancer. · Menstrual history: Women who began menstruating younger than age 12 have a higher risk of developing breast cancer later in life than women who began menstruating after their twelfth birthdays. The earlier a woman’s breasts form, the sooner they are ready to interact with hormones and chemicals in products that are hormone disruptors. Longer interaction with hormones and hormone disruptors increases a woman’s risk for breast cancer. · Lifestyle choices: A 2005 comparative risk assessment of nine behaviors and environmental factors published in the U.K. medical journal The Lancet found that 21 percent of all breast cancer deaths across the globe are attributable to alcohol consumption, overweight and obesity and physical inactivity. Women can do nothing to control breast cancer risk factors like gender, age and family history, but making the right lifestyle choices, including limiting alcohol consumption, maintaining a healthy weight and living an active lifestyle, can reduce the likelihood that they will develop breast cancer. — Metro Creative Connections
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What can a 1.7-million-year-old fossil teach us about cancer? In late July, an international team of researchers announced that they had identified evidence of cancer in the fossilized remains of a biological relative of human beings who lived about 1.7 million years ago. It is rare to find fossils from the hominid family tree. Finding one with such well-preserved evidence of a tumor is rarer still. It seems that cancer has been with us for quite some time, and this finding highlights one of the most fascinating questions about it: why cancer exists in the first place. Cancer is a deadly disease and would have been particularly lethal before the recent development of effective treatments. So why didn’t it – or our susceptibility to it – die out long ago? To put the question somewhat differently, why should organisms, including human beings, carry within our DNA the instruments of our own destruction – tumor suppressor genes and oncogenes just waiting for environmental insults before they kill their carriers? Shouldn’t organisms with such genes be selected against in the evolutionary competition to survive and reproduce?
cancer, probably an osteosarcoma. As a radiologist working in a children’s hospital, I regularly see x-ray, CT and MRI scans of patients with osteosarcomas. They account for a fraction of all primary bone cancers, and are most often diagnosed in adolescence and young adulthood. One unusual feature of the South African report is the location of the tumor – the leg and arm are much more common sites than the foot. Osteosarcomas arise from abnormal bone-producing cells. In fact, the name osteosarcoma comes from Greek roots meaning “bone” and “fleshy growth.” Osteosarcomas aren’t just found in humans. They represent the most common bone malignancy found in dogs and cats. In fact, osteosarcomas are more common in dogs than people, especially in large species such as greyhounds and great danes. Cancer has been around for much longer than 1.7 million years. In Indianapolis, our Children’s Museum features the fossilized skull of a Gorgosaurus, a relative of Tyrannosaurus rex which lived during the Cretaceous period about 70 million years ago. It shows clear evidence of a golf-ball-sized mass inside the skull cavity.
AN ANCIENT OSTEOSARCOMA
CANCER ISN’T A SINGLE DISEASE
BY RICHARD GUNDERMAN
Chancellor’s Professor of Medicine, Liberal Arts, and Philanthropy, Indiana University
Before addressing that question, let’s go back to the 1.7-million-year-old tumor. The researchers found the cancer in a metatarsal, one of the long bones of the foot found just behind the toes. The researchers examined the specimen with high-resolution x-rays, revealing the lesion in greater detail and producing a three-dimensional image, which revealed an “irregular spongy woven bone texture with a cauliflower-like external appearance.” In other words, the cells of the tumor had grown in a disorganized fashion and were ballooning out from the shaft of the bone – features of a malignancy. They concluded that it was a bone
One challenge in attempting to understand the causes of cancer is the fact that cancer is not a single disease. There are many different types of cancer, which can be categorized according to the organ in which they originate – lung cancer, colon cancer, breast cancer and so on. Better yet, they can be categorized by the type of tissue they represent. For example, carcinomas arise from epithelial or lining cells, sarcomas from connective cells, and leukemias from blood-forming cells. What we call cancer really represents a family of disorders, all of which can be lumped together because of a common feature – disrupted regulation of
Volume rendered image of the external morphology of the foot bone shows the extent of expansion of the primary bone cancer beyond the surface of the bone. | PHOTO FROM PATRICK RANDOLPH-QUINNEY (UCLAN)
cell growth. For example, genes that normally suppress cell growth may be damaged, leading to uncontrolled proliferation. An indication that all cancers are not the same is the fact that they have very different prognoses and treatments. Today evidence suggests that many cancers can be traced to environmental exposures, such as tobacco, dietary carcinogens, infections, and air and water pollution. It seems unlikely that tobacco or air pollution could have caused cancer millions of years ago, but it’s possible that some dietary and infectious agents may have been more common in the remote past.
CHROMOSOMES AND OXYGEN One of the first explanations for how cancer could result from chromosomal damage was provided by a medical school professor of mine at the University of Chicago, Janet Rowley, M.D. In the 1970s, Dr. Rowley showed that in many patients with a type of leukemia, CML, portions of chromosomes 9 and 22 had been exchanged, proving that changes in DNA could lead to cancer. Part of the blame for cancer may be placed on a rather unexpected culprit, a molecule without which human life would be utterly impossible – oxygen. Oxygen is necessary for our
cells to convert food to energy. This is one of the reasons that the human body is equipped with over 60,000 miles of blood vessels, which enable red blood cells to carry oxygen to each of our 75 trillion cells. But oxygen is not an entirely benign molecule. In fact, it is highly reactive and even toxic in high concentrations. And early in Earth’s history, oxygen levels began to rise dramatically, as plants capable of photosynthesis – a process that produces oxygen – proliferated. More oxygen permitted the development of multicellular organisms capable of transporting oxygen to all of their cells. Oxygen becomes problematic when superreactive forms of it are formed. For example, when ionizing radiation strikes a cell, it can form superoxides that react avidly with nearby molecules. When one of the nearby molecules is DNA, damage to genes occurs, producing mutations that can be carried from one generation of cells to another. In some cases, a transformation to cancer may result.
WILL CANCER ALWAYS BE WITH US? Another reason that cancer has persisted is the fact that it tends to be a disease of older organisms. Only 1 percent of the cancers diagnosed each year in the U.S. occur in children. So for most of our biological his-
tory, when life expectancy was shorter, hominids reproduced and died of other causes long before cancer had a chance to develop. In advanced countries today, mortality rates due to other diseases, such as infections, heart disease and stroke, have fallen so far that many more people are living to advanced ages, by which point the series of mutations necessary to induce cancer have had sufficient time to occur. In effect, rising cancer rates are in part a sign of general good health and longevity. Can we make cancer disappear? The fundamental problem with cancer cells is that they do not know when to stop growing and die, and as a result, they keep proliferating in an uncontrolled fashion. While this is highly injurious to the organism, the existence of genes that promote cell growth is obviously crucial for organisms to grow and survive in the first place. Consider an automobile. Just two weeks ago, the brakes on my car failed, a dangerous situation. We might wish that cars were built so that the brakes could never fail, but the only way to eliminate the possibility of brake failure would be to do away with the brake system altogether, a far more hazardous proposition. The same thing can be said about cancer. We might wish that we were built without genes that can contribute to the development of cancer, but normal growth and development – and yes, even death – might not be possible without them. When it comes to life, we must take the bad as well as the good, though this is not to say that we cannot make strides in preventing and curing cancer. The finding of cancer in the bone of a 1.7-million-year-old human relative isn’t just a biological oddity – it is a reminder of what it means to be both alive and human. Life is fraught with hazards. Thriving biologically (and biographically) does not mean eliminating all risks but managing the ones we can, both to reduce harm and promote a full life.
POWER OF PINK | FRIDAY, OCTOBER 14, 2016 | 19
Fighting an upstream battle
New Albany woman beats breast cancer twice, joins other survivors for support
BY TARA SCHMELZ
For the News and Tribune
W
ith her pink paddle in hand and her 17 other paddler BBFs — best breast friends — on board, Gina Kaufman Robinson rows against the current in the Ohio for her cause, twice a week. The now 59-year-old New Albany resident is a twice survivor of breast cancer and her rowing upstream is an easy trek compared to her path to remission. “I keep busy. I decided that I’m still here, and I’m going to live life to the fullest,” Robinson said matter-of-factly.
CANCER DIAGNOSIS It all started in the winter of 2009. Robinson’s regular mammogram came back abnormal and the biopsy wasn’t good — she had stage 1 breast cancer. Just two days after Christmas, Robinson went in for a lumpectomy — a process to remove just the cancer portion of her right breast. The doctor told the then-52-year-old that they weren’t able to get “clean margins” and needed to do a second lumpectomy. She went back in for the same procedure in January. Again, the doctor said the margins weren’t clean. “I was to the point of we’re having a mastectomy. I was to the point of where I wanted this out of my body right now,” Robinson said. Robinson made the decision to remove both her breasts, in hopes of preventing cancer from returning to either of her breasts. She called the surgeon and told the scheduler of the change from the removal of one
Gina Robinson paddles against the Ohio River with 17 of her BBF’s. | STAFF PHOTO BY TYLER STEWART
to two breasts. She was told it would be no problem.
CLERICAL ERROR When she showed up for pre-op work two days prior to the surgery, she found out the scheduler messed up, and she was set for the removal of just one breast. If she wanted both gone, she’d have to wait until the next available appointment — months later. “I said fine, just take the right one off! I was so mad!” Robinson recalled. Afterward, she had reconstruction of her right breast and had terrible pain afterward that wouldn’t subside. The reconstruction site had gotten infected and the work done had to be removed. Her husband, Dan, said it was a close call for Gina. “Her white blood cell count was up to the point of death,”
Dan recalled. “That was so her along her journey. scary.” While meeting with the sur- LIFE’S BALANCE geon to talk about options for “I decided cancer wasn’t gothe right breast, the doctor discovered cancer in the left ing to consume me. You have to have a sense of humor. There breast, the one that were bad days that should have been I cried, but you removed in the first have to try to keep surgery but hadn’t smiling,” she said. been due to a cleriBut in all of this, cal error. It was also Robinson said she in stage 1. realized life is Due to the speshort. She decidcific form of breast ed to make more cancer she had, time for family and Robinson did not friends. So, she need radiation or left her job that rechemotherapy if quired long hours the breast was removed. She had the — Gina Kaufman Robinson and weekend work and found one with second breast renights and weekmoved and decided ends off. to forego reconstruction. That gave her time for things “I have a matching set now and I’m fine with it!” Robinson such as Gilda’s Club, a local support group for those affected said, with a chuckle. Humor, she said, has helped by cancer.
“
“There were bad days that I cried, but you have to try to keep smiling”
“I wasn’t sure I wanted to be in a support group, but it’s not like that. We cry together. We laugh together. We have a good time together,” Robinson said. “That’s where I feel like I got my strength was being around others who have been through it.” That group led her to other survivor group events, such as Pink Pilates in New Albany, which is filled with breast cancer fighters and survivors. She also races with her Dragon Boat team, the Derby City Dragons. They are part of more than 100 breast cancer survivor dragon boat teams around the world who meet at various locations to compete, according to derbycitydragons.org. Robinson said all these groups have introduced her to people who can really understand what she has gone SEE ROBINSON, PAGE 22
20 | FRIDAY, OCTOBER 14, 2016 | POWER OF PINK
The woman with a plan
BY DANIELLE GRADY
danielle.grady@newsandtribune.com
B
ekki Jo Schneider thought over her options. She was older — in her 60s. Her doctor had just told her that there were irregular cells in her right breast. She could start chemotherapy, wait for more information or get a unilateral mastectomy. Schneider decided on the mastectomy. The next step was telling her family. First, Schneider would talk to her children. Then, she’d tell her grandchildren. Finally, she would inform her business partners. No one else needed to know, she thought. Schneider may have had breast cancer, but grieving wasn’t necessary. All she needed was a plan. That’s the way she is with everything. She might have 20 things to do at work every week, but the part owner and operator of the Derby Dinner Playhouse will simply
Derby Dinner owner faces cancer with a unique outlook
write them out and cut — not check — them off as she accomplishes them — watching her list physically shorten all the while. She also owns a journal that she fills up and replaces with a new one every five years. This half-decade’s edition is midnight blue with silver stars and a moon. It contains lists of things that bring her joy, important dates and her precepts: the rules she lives by. In the back, she keeps more information on her daily life. Schneider started journaling in college to keep herself on track with her goals. Now, it helps as she navigates rehearsals and mentor sessions, but also, when things get dark. “I think having life plans — that are flexible — but life plans, give you that guideline to fall on when the bad things happen,” she said. For Schneider, that wasn’t necessarily her 2008 brush with cancer. In a five-year period, her mother, sister and dad died — her whole family besides her children and their families. But Schneider’s blue book was always there. It came to her aid again in 2015, when her cancer returned — more aggressive than before.
THE SECOND ACT This time, Schneider’s doctor wasn’t giving her the option. She SEE SCHNEIDER, PAGE 21
Bekki Jo Schneider’ cancer returned in 2015. She continued her role as part owner and operator of Derby Dinner Playhouse while undergoing chemotherapy. | PHOTO BY JASON HICKS
®
Advantage
POWER OF PINK | FRIDAY, OCTOBER 14, 2016 | 21
Bekki Jo Schneider helped Derby Dinner Playhouse make 2015 its best year of the 42 years it has been open. | PHOTO BY JASON HICKS
SCHNEIDER: Part owner never missed a day of work during chemo CONTINUED FROM PAGE 20
had to undergo chemotherapy. It would mean 12 weeks of treatment, hair loss and taking off work at inconvenient times. Schneider reacted the same way as the first time: She made a plan. This round, she’d tell more people than her family and business partners. The cast of the play she was directing needed to know, too. Not because Schneider wanted pity, but because
“this is business,” she said. The cast had to realize that Schneider was good during chemo, but not so much the third day after. On that day, they’d have to help out a little more. Lee Buckholz, one of Schneider’s business partners, said he and his other partner gladly helped whenever Schneider needed it. “She’s a remarkably strong individual,” and she handled cancer with grace, he said.
Schneider worked everything around her sickness: her hectic work schedule and vacations with her family. She didn’t miss a day of either, she said — even if it meant flying home from one family trip to make a chemo session only to return to the same spot three days later for a vacation with more of her family. As a result, Schneider’s grandchildren felt reassured and her playhouse thrived instead of suf-
fered. In 2015, Derby Dinner had its best year ever. It’s been open 42.
A CURTAIN NOT YET CLOSED Schneider knows her cancer might return. She doesn’t think it’s ever gone. But she’s not going to worry about it. That’s her doctor’s job, she said. “It’s a division of labor here,” she said. “If I have to take on his job, I can’t get mine done.” Schneider has a business-like
philosophy when it comes to her cancer. She doesn’t call her experience with it a battle like so many do. “I think it’s just another part of my life, and it has to fit into my schedule,” she said. But Schneider said she knows cancer is different for everybody. Some people don’t have the resources she does or the supportive family. It’s luck, she said. Luck, and having a plan.
22 | FRIDAY, OCTOBER 14, 2016 | POWER OF PINK
Gina Robinson readies her paddle before embarking on a Derby City Dragons’ rowing practice trip. | STAFF PHOTO BY TYLER STEWART
ROBINSON: Survivor celebrated five years of remission this summer CONTINUED FROM PAGE 19
through. She calls those friends her “BBF — best breast friends,” a play on the term best friends forever. But in addition to her BBFs, Robinson said she could not have fought her battles without the support of friends and family, in-
cluding her husband of 25 years and their 22-yearold daughter, Sarah. “She’s been strong. It can get you down. You have to fight it,” Dan said. “You have two choices. Fight it or give up. To go through that, you have to be a strong person.” Robinson celebrated her 5-year remission point
CHEMO: MammaPrint test can help patients understand risk of recurrence CONTINUED FROM PAGE 11
The women were randomly selected, based on high or low clinical risk, or on high or low genomic risk. The women that had both low clinical and genomic risk did not receive chemotherapy and were not evaluated in the trial. The women with both high clinical and genomic risk all received chemotherapy in addition to endocrine therapy, and were also not evaluated in the trial. The women with discordant risk (i.e. high genomic risk but low clinical risk, or low genomic risk and high clinical risk) were all treated with endocrine therapy, but were randomized to either receive chemotherapy or to not receive chemotherapy. In the group of women with high clinical risk but low genomic risk who were treated with chemotherapy, there was only a 1.5 percent increase in the fiveyear survival rate, without the cancer spreading to another organ in the body, the authors reported. (95.9 percent in the chemotherapy group vs 94.4 percent in the no chemotherapy group). Since the five-year survival is very similar in both groups, it is still unclear who are the women that actually can truly be spared of chemotherapy. Similar results were seen in the group of women with low clinical risk but high genomic risk (i.e. the fiveyear survival rate was very similar between the patients randomized to chemotherapy or not).
BRINGING ALL THE INFORMATION TOGETHER So what does this mean for our patients in the clinic? Let us consider two hypothetical clinical scenarios. Patient 1 is a 55-year-old woman with a 1.5 centimeter tumor that is ER+, lowgrade, low proliferative rate with 0 of 3 sentinel lymph nodes, or nodes to which the tumor is most likely to have spread. Proliferative rate refers to the rate of growth of cells within the tumor; less than six percent is low, and greater than 10 percent is high. Based on these clinical-pathologic features of her tumor, she is considered
to have low clinical risk. According to results from the MINDACT trial, her clinical risk would trump her genomic risk, therefore, getting a MammaPrint test would be a waste of time and money. Patient 2 is a 55-yearold woman with a 3.0 cm tumor that is ER+, highgrade, intermediate proliferative rate, with 2 to 5 positive sentinel lymph nodes. The patient is adamant about not receiving chemotherapy. Based on the clinical-pathologic features of her tumor, she is considered to have high clinical risk, and chemotherapy followed by endocrine therapy would be the standard of care recommendation. If her MammaPrint test returns as low genomic risk, we could counsel the patient about her risk of distant metastasis without chemotherapy and breathe a sigh of relief if she had low genomic risk. She would certainly benefit from endocrine therapy, a daily, oral medication, for five to 10 years to reduce her risk of distant recurrence, or cancer that has spread, or metastasized. It is not clear, however, whether she would be in the 1.5 percent of patients who might have benefited from chemotherapy but did not receive it, or in the group of patients who were spared the toxicity of chemotherapy based on the MINDACT trial. These cases illustrate the complexity of clinical decision making in an era when we have a growing amount of data about the biology of each patient’s cancer. The MammaPrint test as used in the MINDACT trial suggests but does not predict a patient’s benefit from chemotherapy. It is merely a prognostic tool that tells us that the biology of the tumor matters. We already knew this. For this reason, we believe the MammaPrint test is another tool which may help patients understand their risk of recurrence better. It is important that patients continue to have active discussions with their physicians about treatment options based on these gene panel tests in an effort to achieve personalized care.
on her second diagnosis this summer, graduating her to only needing to be checked by the doctor once a year. “This cancer? It’s a wake-up call. I wasn’t always this patient,” Robinson said. “They say to take time to smell the roses. I enjoy the small things now. I take the time.”
POWER OF PINK | FRIDAY, OCTOBER 14, 2016 | 23
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