Finding Trials, Paving the Way for Others and Advocating for Yourself

Brooke Cole, 41, of Sanford, Maine, participates in a clinical trial studying a breast cancer vaccine for HER2-positive disease. Brooke did this Q&A  for Breast Cancer Clinical Trials Matter to You with our Digital Media Specialist Josh Fernandez to discuss her reasons for participating, traveling long distance for treatment and more.

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Q: When were you diagnosed with breast cancer? 

Brooke: I was diagnosed in November 2011. Following testing, I learned I had stage III hormone receptor- and HER2-positive breast cancer.

Q: How did you discover the clinical trial in which you’re currently enrolled? 

Brooke: I found the clinical trial myself by searching Clinicaltrials.gov.

Q: What is the trial studying?

Brooke: It’s a randomized phase II trial studying a vaccine for patients with HER2-positive breast cancer (NCT00524277). I started it in May 2013, and will finish in May 2018.

Q: What are the treatments and tests are involved in the clinical trial?

Brooke: I traveled from my home in Maine to Baltimore, MD for one day to enroll, get blood work and meet with the trial oncologist. Once accepted into the trial, I traveled to Baltimore every 28 days for the first six appointments. I would have two injections, get more blood work done, and stay to be observed for two-three hours. I then return to the hospital two days later to report any side effects to my trial nurse.

After the sixth appointment, I returned every six months for four visits. I’d stay for three days each time. I am now being followed up with phone calls and questionnaires from my trial nurse.

Q: What factors did you consider while you were making your decision to participate?

Brooke:  The most important factors I considered were the cost and the time I’d have to spend being away from my husband and small children.

Q:  In a 2014 article in our newsletter, Insight, you mention that part of the reason you wanted to do this was to help future generations. Can you elaborate on that?   

Brooke: Cancer is not going anywhere until a cure is found. The way to find a cure is clinical trials. The women who participated in the clinical trials for Herceptin years ago paved the way for HER2-positive patients like me. Did those women know at the time the significance of their participation? Probably not. But I am beyond and forever grateful that they did participate, because Herceptin has saved lives.

I will probably never know if the breast cancer trial vaccines I have received are the next big discovery for preventing or treating breast cancer. I can only hope my participation and the participation of others leads to a breast cancer cure for those who will be diagnosed in the future. Continue reading

Mistaken Signs Really Paget Disease: Christina Ihfe

Written By Robin Warshaw, Contributing Writer
Reviewed By Anees B. Chagpar, MD, MSc, MPH
IhfeThe rash on Christina Ihfe’s left nipple was as stubborn as it was painful. Her doctor diagnosed it as a fungal infection and recommended a variety of creams and medicines over 6 months. Still, the rash wasn’t healing.

Christina, then 33, had a busy job selling data equipment. Her work involved lots of cross-country traveling. The rash caused extremely sharp pain that interfered with her job and she was fired for missing so much time. Two weeks later, to figure out what the rash was, Christina’s doctor sent her for a nipple biopsy.

The biopsy surgeon told her she had Paget disease, without really explaining what that meant. “When they tell you it’s a disease and they’re not using the ‘C’ word, it doesn’t sound so bad,” Christina says.

She looked up Paget disease online. “I then started asking questions, [and freaked out] a little bit,” she says. She lives in Windsor, Colorado, a town with about 20,000 residents. “Nobody around here had even heard of it.”

A Rare Diagnosis

Paget disease of the breast, sometimes called Paget’s disease, is a rare form of breast cancer. It affects the nipple skin and, often, the areola, the darker area around the nipple.

It may cause the nipple to flatten, and itching, redness, yellow discharge or flaking or crusting of the skin on the nipple. As in Christina’s situation, Paget disease symptoms can be mistaken for benign skin problems, which delays correct diagnosis.

In Paget disease, breast cancer cells travel from a tumor in the breast into the skin. About 1 to 4 percent of all breast cancers involve Paget disease. How it develops is not clearly understood. Other types of Paget disease occur elsewhere and are not related.

Christina was diagnosed with stage III, hormone receptor-negative, HER2-positive breast cancer. Because she had large breasts and she could not have reconstruction to match that size, she decided to have a double mastectomy and reconstruction with implants so that her breasts would be equal in size, although smaller.

“That was another hard thing to take, knowing I could never be what I was,” she says.

Treatment Problems

After surgery, Christina had 15 rounds of chemotherapy and treatment with trastuzumab [Herceptin], a HER2 targeted therapy. At the same time, she received leuprolide (Lupron) to suppress ovarian function.

She had joint pain in her hips, knees and shoulders but couldn’t tell which medicine was causing it. “It was so painful I wasn’t able to go up and down stairs in my house,” she says.

An infection in her surgical drains resulted in removal of her left breast implant. Her plastic surgeon said Christina would have to delay further reconstruction until after her 32 radiation sessions. In all, it took 8 surgeries to complete her reconstruction.

Christina’s experience was tough on her 13-year-old son, who was accustomed to her being active. “It was quite a difficult time for him,” she says, “although he was always helpful.” She also gained support from her boyfriend, who was “the driver, the listener, the everything.”

Looking Ahead

While struggling with the impact of treatment, Christina was unable to work. She collected unemployment compensation for a short time, then used her savings, which dwindled quickly. When her doctors said she couldn’t work for some time, she applied for disability benefits but was denied. Two years later, she’s still trying to get a hearing to appeal her case.

She looked for emotional support locally but felt out of place in a breast cancer support group comprised of well-meaning but older women. Christina found LBBC online and became interested in sharing its resources with younger women in her area.

She attended LBBC’s Young Advocate training and stays connected with others she met there. “Whatever kind of day you’re having, they understand,” she says. She appreciated hearing about work, insurance and finances at the training from Triage Cancer and wants to include those issues in her advocacy efforts.

Christina now focuses on survivorship – her own and that of other young women. She brings LBBC materials to local events and talks to people. Her message, she says, is for young women to listen to their bodies and be heard.

“For 6 months, I knew something wasn’t right and I kept going until I got an answer,” she says. “You have to be responsible to take care of yourself.”


This article was supported by the Grant or Cooperative Agreement Number 1 U58 DP005403, funded by the Centers for Disease Control and Prevention. Its contents are solely the responsibility of the authors and do not necessarily represent the official views of the Centers for Disease Control and Prevention or the Department of Health and Human Services.

Navigating for Herself and Others: Sarah Iwanski

Written By Robin Warshaw, Contributing Writer

Sarah Iwanski, of Pooler, Georgia, is proud of her reputation as a squeaky wheel. “I squeak a lot until people hear me,” she says.

That skill has served her well since early 2013, shortly after her second child was born. Sarah, who has a genetic blood disorder known as hereditary hemorrhagic telangiectasia, or HHT, was sent for a chest scan. Her doctors wanted to make sure the pregnancy hadn’t caused HHT-related lung problems.

The test showed her lungs were fine. The radiologist noted one lymph node was barely enlarged and told her it was nothing to worry about. Sarah, who was 29 and breast-feeding an infant, then went to her obstetrician/gynecologist. She was sent for an ultrasound that found the node was probably benign.

Still, Sarah was not satisfied. Because she was a medical technologist at a local hospital, she consulted an oncologist she knew. He didn’t think the node was a problem, either, but agreed to send her for a biopsy. It showed what no doctor had detected: Sarah had stage IIIA breast cancer. The disease was in her milk ducts but hadn’t formed a tumor that could be felt, especially in a nursing mother’s breast.

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“If I [had not questioned] my healthcare providers and advocate[d] for myself, then I probably would not be alive now,” says Sarah. “I have a medical background and worked in a hospital. Women without that experience and without confidence to challenge their doctors are at a severe disadvantage.”

Joining Clinical Trials

Sarah was diagnosed with hormone receptor-negative, HER2-positive breast cancer. She had a mastectomy, chemotherapy, trastuzumab (Herceptin) for a year and 30 rounds of radiation. She also set out to find clinical trials for further treatment because there are no long-term treatments for the type of disease she has. “The more clinical trials I can find, the more [I feel] I’m actively doing [something] to stick around,” she says.

She thought a vaccine therapy trial could benefit her, so searched online at breastcancertrials.org and clinicaltrials.org.

Vaccine therapies are treatments that stimulate the immune system to destroy cancer cells.

After finishing trastuzumab and radiation, and while undergoing reconstructive surgeries, Sarah joined a trial for a vaccine that might work against HER2. The trial site was in Virginia, an 8-hour drive from her home. She made the trip for an initial exam and then 12 more times over a 3-month period, to receive the vaccine.

Because it was a phase 1 clinical trial, everyone in it received the vaccine. The treatment ingredients had been separately tested through phase 3 trials. Each time she got the vaccine “it made me feel like I had the flu for a day,” she says. The trial has not yet reported results.

The trial covered costs for the vaccine and related lab work. Her final visit was not covered, and was out-of-network for her insurance, so she paid about $1,000-$1,500 for that. She had help with hotel expenses from an American Cancer Society program.

She participated in other clinical trials as well. Earlier, while receiving trastuzumab, Sarah was in a study testing heart medicine in women taking trastuzumab, which may cause heart problems. Neither she nor the researchers know whether she received a medicine or placebo, an inactive substance. “I will never know until years from now what I got, but I didn’t have heart damage (from treatment),” Sarah says.

She and her family also participated in a study of genetic factors related to breast cancer in women younger than 40 when diagnosed. The study, which is still open, collects blood samples from young women living anywhere in the U.S., as well as from their siblings and parents.

Helping Other Georgia Women

image2Sarah has lymphedema from surgery, range-of-motion problems from radiation scarring and neuropathy from chemotherapy. Spurred by her squeaky-wheel nature and her own experiences, she became passionate about survivorship concerns.

She felt support was missing outside of hospital networks in Georgia and met other survivors who agreed with her. “We needed an outlet to not sit in a hospital and talk about being sick, but to have fun with women who understood what we were experiencing,” she says.

With a few other women, she co-founded Surviving Sisters, a nonprofit focused on nine underserved counties in coastal Georgia. The organization has peer navigators, a website with a directory of support resources and a private Facebook group. The group works with rural hospitals to connect survivors with services and holds social activities, such as picnics, beach days and retreats.

Because of her ongoing side effects and medical needs, Sarah could not return to her previous job and receives disability benefits. She became a certified patient navigator and volunteers helping others get through breast cancer treatment. She also serves as treasurer of Surviving Sisters.

“I loved my old job, but I look at it as breast cancer was for a reason. There has to be something I can do with it,” she says. “Survivorship is a big need.”


This article was supported by the Grant or Cooperative Agreement Number 1 U58 DP005403, funded by the Centers for Disease Control and Prevention. Its contents are solely the responsibility of the authors and do not necessarily represent the official views of the Centers for Disease Control and Prevention or the Department of Health and Human Services.

Facing a Breast Cancer Few Know About: Patrice Starks

Written By Robin Warshaw, Contributing Writer
Reviewed By Minetta C. Liu, MD

On the day she was diagnosed with inflammatory breast cancer, also known as IBC, Patrice Starks, of Royal Palm Beach, Florida, had never heard of the disease.

Like many people, she thought all breast cancer formed as a lump that could be felt by touch or seen on a mammogram. Having just turned 41 years old, Patrice had her first mammogram a few months before and was told all was fine. When her left breast began to hurt and swell, she thought she had an infection, like the one she experienced when breastfeeding her daughter.

Finding out the real source of her breast discomfort “was completely shocking,” Patrice says – especially the aggressive nature of the type she had.

“One of the things that troubled me most was the lack of knowledge on my part – and in the world – about IBC. Even most of the doctors I see don’t know much about it,” she says.

Patrice Starks

Taking Action

IBC often makes no lump. The cancer cells block lymph vessels, which makes the breast swollen and red.  Affected breasts may feel warm or heavy, look bruised, or have skin ridges or pits, like an orange. Only 5 percent or fewer of all breast cancers in the U.S. are diagnosed as IBC. It is staged as stage III or more.

Because symptoms resemble other medical conditions, such as skin rashes or mastitis, a common breast infection, diagnosis may be delayed. A timely diagnosis of IBC is important because breast-related changes and discomfort may develop quickly.

Patrice was diagnosed with stage III, estrogen receptor-negative, progesterone receptor-negative, HER2-positive disease. She received her diagnosis on a Monday, saw an oncologist on Tuesday, then spent the rest of the week being readied for chemotherapy, which started the following week.

“You don’t have time to figure out your life,” she says.

She was working 50 hours or more per week, having just been promoted to a deputy supervisor job for Florida’s juvenile justice programs. Scheduled to go on a business trip that week, she called her boss and cancelled the trip right after getting her diagnosis.

“I had to work on making sure I became healthy enough to remain a wife, remain a mother, remain a co-worker,” she says. “My job description went from working for the state of Florida to working for Patrice.”

She was especially concerned about how her diagnosis would affect her young children: a 20-month-old daughter and 3-year-old son, who has autism and doesn’t speak.

“He’s very perceptive in understanding emotions, so I told the two of them that Mommy’s sick and she has a boo-boo.” Her son responded by putting his hand on her breast. “I said, ‘Yes, Mommy has a boo-boo.’”

When her hair began to fall out from chemotherapy, her husband shaved her head. Their daughter sat in Patrice’s lap, fascinated by the dropping hair, as their son ran around, laughing. “It was fine,” she says. “They don’t understand cancer, and I’m glad.”

Coping With Fatigue

Patrice had chemotherapy, trastuzumab (Herceptin) and then a mastectomy and radiation. She has experienced a lot of fatigue since treatment began. She can be having a conversation, then wake up three hours later, having fallen asleep without knowing it.

She gets up with the children and prepares them for day care. Her husband drives them while Patrice grabs a nap. Her mother, who is retired, helps with the laundry, drives Patrice to appointments and errands, and assists when the kids are home. Patrice bathes her daughter and son because “I didn’t want to change their routine. I wanted to still be their mother.”

She hopes the end of radiation treatment will lessen her tiredness. Her healthcare team advised her to walk. “They said any bit of exercise will give you more energy.”

Before breast cancer, she exercised twice a week and could walk a mile in 15 or 20 minutes. Recently, for a fundraising relay, she walked 2 miles in 2.5 hours. When she woke up the next day, she stayed awake for only a short time, and then slept another 6 to 8 hours more.

“You don’t even realize how tired you are until it hits you,” she says. When she has energy in the evenings, she puts the children in their stroller and walks about a mile in the family’s neighborhood.

Spreading the Word

Patrice has been on a personal campaign to tell more people about IBC. When her doctor’s office asked if she would talk with a woman who had just been diagnosed, she agreed immediately. “I want as many people to know as much about this as possible,” she says.

As an African-American, she is also concerned about the lack of awareness about IBC she sees among African-Americans, who are more likely to be diagnosed with the disease at a younger age than white women. All women should follow appropriate screening guidelines.

“I tell all of my friends, you have to do your monthly checks of your breast. I realized there were some changes in my breast as it was growing and growing, but I didn’t take the time from work and go to the doctor like I should have,” Patrice says.

Now she has a message for others: “Be sure you go to the doctor if there’s an issue.”

PrintThis article was supported by the Grant or Cooperative Agreement Number 1 U58 DP005403, funded by the Centers for Disease Control and Prevention. Its contents are solely the responsibility of the authors and do not necessarily represent the official views of the Centers for Disease Control and Prevention or the Department of Health and Human Services.

The Whole You: Lessons Learned After Moving from Nurse to Patient

Best-selling author Hollye Jacobs, RN, MS, MSW, blogs about three lessons she learned after she was diagnosed with breast cancer. Join us for our Annual Fall Conference, part of Wellness Weekend in Denver, CO this September 18-20 to meet Ms. Jacobs, to hear her speak and get a free copy of The Silver Lining Companion Guide in your conference goodie bag at registration for the event. 

As a healthy, happy, vegan-eating, marathon-running, 39-year-old young mother with absolutely no family history of breast cancer, being diagnosed with the disease in 2010 literally shattered my world. As a health care professional, I very quickly moved from the side of the hospital bed into the hospital bed.  This transition from nurse to patient taught me profound life lessons.

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Lesson #1: Honor the feelings and let them out.

Prior to my experience with breast cancer, I was a grin-and-bear it kind of girl who was reluctant to share any feeling other than joy. However, once ‘Roid Rage (the intense feelings of anger brought on by pre-chemotherapy steroids) and Chemo-Sobby (tears at the drop of a hat brought on by the chemotherapy flowing through my veins), and the Freight Train of Fatigue (courtesy of the rads of radiation beamed into my body) entered my life, I had no choice but to let all of my feelings out. I was too exhausted to muster the energy to make them look “pretty.” And you know what? Expressing feelings, all feelings, happens to feel good. Really good. Though I no longer have ‘Roid Rage, Chemo-Sobby or the Freight Train of Fatigue (thank goodness!), I continue to openly express my feelings. And it still feels good! No, actually, it feels great! Continue reading

The Whole You: Meditation, Yoga and Breast Cancer

In this post for our Wellness Weekend series, The Whole You, Ayanna Kalasunas writes about how meditation and yoga helped her after she learned she had metastatic breast cancer. Understand how cancer impacts you physically, emotionally and spiritually during Wellness Weekend, taking place September 18-20 in Denver, CO.

Let’s face it – hearing “you have cancer” is one of the scariest moments of anyone’s life.  A metastatic breast cancer diagnosis two and a half years ago on the day I was set to start chemo was downright earth-shattering.  I, like many others, asked myself “how the hell am I supposed to handle this?” Having battled depression and anxiety in the past, I was truly concerned about the coping mechanisms I would need. I felt lost, angry, afraid and hopeless.

Then I thought about my mother. She too had been diagnosed metastatic after a stage II battle seven years earlier. She maintained a zest for life and continued to be the life of the party despite various bouts of chemo, radiation and multiple surgeries. She had cancer and I was aware of that but she was so much more than her disease.  My now husband once commented about her saying “I honestly forget that she is sick. Not in a bad way…she is just so fun and happy all the time.” Thinking about this reminded me that I could do it, too.

I was also very lucky to have a few close friends that used meditation and yoga as part of their regular routines. Part of their support as caregivers was offering information and resources regarding meditation, mindfulness, acupuncture and other complimentary therapies to my medical treatments, which I continue to pick up along this journey. Each one has grounded me and brought me to a life that is filled with hope, positive thinking and empowerment.

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I did not morph into this person overnight. I read a few articles here and there, followed some inspiring people on social media, went to a yoga class with a friend here and there and spent a few Sundays super-souling on my sofa with a cup of coffee. I tried some mediation challenges and apps and slowly have found a sense of power in each of these moments.  I learned that I am in fact in complete control. Cancer is in my body so yes, it is real, but I am not my circumstances. Continue reading

Why I Became The Choosy Chick

In anticipation of our August 12 webinar on environmental health, Health Educator Margot White blogs about why she founded The Choosy Chick.

I have always believed in the benefit of leading a healthy lifestyle, but becoming a mom inspired me to turn it up a notch.  Like most parents, I wanted to provide my children with a healthy foundation and protect them from chemicals that did not belong in their bodies.  After my first son was born I began to realize I was only scratching the surface.  I had a lot to learn about food additives, dyes, artificial flavors and sweeteners, preservatives and chemicals with unpronounceable names.   The more I learned, the more I distrusted the well-known brands that were a major part of our diet.  My kids even picked up on my new habit.  Imagine my embarrassment when my 6 year old blurted out at a birthday party, “Hey Mom, there’s high fructose corn syrup in these fruit snacks!”

By the time my second and third sons came along, I began to learn about the chemicals not just in foods, but in cleaning and personal care products. I became more suspicious about toxins in skincare products when my son became ill during the application of one of those Halloween face painting kits.  His throat started to burn and he vomited white foam.  When I looked at the back of the product label, I noticed the warning to avoid using certain colors near the eyes or mouth.  But wait – this was a FACIAL makeup kit!  How could it possibly create this kind of reaction?mwhiteheadshot2

All along I was experiencing some unexplained rashes, and developed Raynaud’s syndrome.  My doctor started to watch me closely for Lupus, among other autoimmune diseases.  During that same period several close friends and family members were diagnosed with cancer.  I became concerned for the health of my family and myself. I became a mom on a mission committed to reducing our exposure to toxins in foods and household products. I started to investigate the ingredients in diaper creams, lotions, and baby shampoo and again, found good reason to distrust the brands I once thought were safe. I had already discovered that my own makeup and personal care products were loaded with toxic chemicals that are linked to a variety of serious health concerns. Continue reading