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.

Up in the Air Over Treatment: DeAnna Chenoweth

Written by Robin Warshaw, Contributing Writer

2015Chenoweth-DeAnna_mediumWhen you hear DeAnna Chenoweth lives in Miami, it’s reasonable to think she could find excellent cancer care at the large hospitals or centers near her home. That’s understandable to assume until you learn she lives in Miami, Oklahoma – not Miami, Florida. Living in a small town or rural area can make finding breast cancer care challenging.

There was a cancer center about 45 minutes away from DeAnna. “That was where most people went for treatment,” she says. At the time of her breast cancer diagnosis, however, the center and its hospital, in Joplin, Missouri, were shut down from severe tornado damage.

DeAnna, a sonographer at a small local hospital, was determined to locate breast cancer specialists – experts more often found in larger hospitals and cancer centers.

In her small town, DeAnna felt “everybody’s treated with the same recipe,” she says. She wanted to be sure her doctors would give a young woman the appropriate treatment, knew the latest research and would talk with her about it. It was important to her to find a team of providers she could trust and develop a relationship with throughout her experience. She also wanted access to all treatment options.

Long-distance treatment

DeAnna began searching for care. Diagnosed at age 41 with stage IIB hormone receptor-positive and HER2-positive disease, she first saw a breast surgeon 90 miles away, in Tulsa. She left that office feeling displeased with the uncaring attitude she encountered. “I didn’t like the way they treated me or the other patients being seen that day,” she says.

The other surgeon she could see was not in her health insurance network, so hercosts for care would be much higher. A Tulsa cancer center also was not covered, her insurance company told her, but a related location near Chicago, about 600 miles away, was in-network.

She decided to make the trips to Chicago for treatment because she couldn’t afford out-of-network costs at the closer facility. So, instead of driving 90 miles for care, DeAnna drove 90 miles, then got on an airplane and flew for every treatment or procedure. The center in Chicago covered her flights because she could not get in-network coverage at their Tulsa hospital.

Flying to another city for care saved her money over out-of-network costs. “It’s crazy, but it’s the game you have to play,” she says. “When you’re talking about these hospital bills, that difference of even 10 percent makes a huge difference.”

As a Native American of Cherokee descent, DeAnna also received help with co-pays from the Indian Health Service (IHS). She now picks up most of her ongoing medicines, with no co-pays, directly from a nearby IHS facility.

Traveling for treatment was rigorous. Since her 20-year marriage ended shortly before her diagnosis, DeAnna was a single parent, raising a 12-year-old and 16-year-old twins, plus had a full-time job. “I felt like the ringmaster,” she says. “I asked myself, how do I keep all these things going?”

Creating support

Some of DeAnna’s co-workers donated vacation or sick days to supplement hers. A large bake sale and Zumbathon event raised funds for her expenses.

Now 44, DeAnna thinks the number of affected young women living near her is unusual. She joined a breast cancer support group for young women when a friend of hers set it up. Her friend works in a Joplin mammography center. After 6 months, the group had about 40 members. They meet online and in person.

“I think I’m the oldest,” DeAnna says. One other woman is single. Most work, a few are at home with children.

Members have varying diagnoses and are at different points in their care. DeAnna recalls helping one 32-year-old woman who was about to have a mastectomy. “I showed her my drains and let her touch them. I said, “This is what you’re getting ready to do. Don’t be afraid.’”

When a member posted online about having her final chemotherapy session that day, another member dropped in and sat with her.

The group holds evening and daytime meet-ups, to let people attend when they can. They’re planning a weekend “slumber party” getaway to Branson,Missouri.

Having the group, says DeAnna, “is nice, because in my situation, I didn’t want to burden the kids.” She appreciates knowing other women affected by breast cancer who share her viewpoint and help each other.

“Some ladies will say, ‘My husband just doesn’t understand.’ And we say, ‘You don’t have to be all fuzzy and cupcakes here.’”

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.

I Know Who I am: Patricia Voelker

Written by Erin, Rowley, Writer and Content Coordinator

2015Voelker-Patricia_mediumAs a former pastor in a church whose members were largely gay and lesbian, Patricia Voelker has counseled couples who have faced discrimination in different areas of life, including health care.

Her advice to at least one couple: “Get a new doctor.”

In 2013, Patricia, a now 74-year-old Lexington, South Carolina resident, had to deal with two breast cancer diagnoses – hers, and her daughter’s, who was diagnosed a few months before Patricia. In the past, Patricia has encountered healthcare professionals who were insensitive to, or ill-informed about the gay community. But as a lesbian woman in treatment for breast cancer, she says she hasn’t experienced discrimination from her cancer care team. Any problems she’s had with them have been strictly medical.

Patricia only came out to herself as a lesbian at age 39. Though she is open about her sexuality, (“I know who I am and I’m fine with who I am,” she says), it’s not something she declares when meeting a new doctor. It didn’t really come up while talking with her cancer care team. This is due, in part, to her single relationship status: She didn’t have to explain a same-sex partner at appointments. Her therapist knows about her sexual orientation, as does her nurse practitioner, who Patricia has been going to for years.

Her advice for other LGBT people with breast cancer is the same advice she’d give to straight people with breast cancer: Make sure you have doctors you trust, because ultimately, you have to be your own best advocate.

“Make sure you’ve got a good relationship with [healthcare professionals],” she said. “If you don’t, don’t feel bad about asking for another opinion or for changing to somebody else.”

Patricia says that being open and willing to talk about her sexuality is what feels right to her, but she knows that can come with risks for some people.

“I can’t guarantee you that you won’t lose a job, or you won’t lose a friend, or you won’t lose a family member,” she said. “All I can say is I’m out and it works for me.”

Patricia doesn’t have any plans to start dating, but she says breast cancer shouldn’t stop others from doing so. Neither she nor her daughter, nor anybody else, Patricia says, did anything to bring the cancer on themselves, so there should be no sense of shame associated with the disease.

“[Cancer] might bother somebody else enough that they would not want to be involved with you, but that would be their problem,” she says.

Today, she and her daughter are both doing well. After having a lumpectomy followed by radiation, Patricia sees her nurse practitioner every 3 months and is on daily hormonal therapy to treat the hormone receptor-positive breast cancer.

She says she wanted to share her story to show what a wide spectrum of people there are in the breast cancer community – and even in the smaller, LGBT breast cancer community.

Young Doctor, Unexpected Diagnosis: Breck McCarty

Written By Robin Warshaw, Contributing Writer

2015McCarty-Breck_mediumAfter finishing her family medicine residency at age 29, Breck McCarty felt “as if I had been going to school forever.”

That was about to change, as she and her husband-to-be prepared for the next step in their careers: moving from South Dakota to join a medical practice in a small Wyoming town.

When she felt a breast lump, Breck let it go for a few weeks. “It persisted, so I saw a surgeon who was one of our preceptors [teachers] in our training and requested that I get a biopsy.” He told her she was young and he didn’t think it was cancer, but would biopsy it anyway.

“He came to my house to deliver the news,” Breck says.

The new doctor was diagnosed with stage IIA breast cancer. She had a mastectomy just days before moving to Wyoming.

Pregnancy planning

At first, she didn’t think about how treatment might affect her fertility. Then a friend, also a family doctor, asked her about it. “I would not have even thought of it if she hadn’t mentioned it,” Breck says. “I was so overwhelmed.”

She had no children and wanted them in the future. She learned it was important to have fertility preservation, storing embryos or eggs before chemotherapy, to avoid damage. Fertile Hope, now LIVESTRONG Fertility Services, helped Breck get discounted rates for fertility preservation services. She had eggs taken, then embryos created from them and the resulting embryos frozen.

After initial breast cancer treatment, Breck received tamoxifen because her disease was hormone receptor-positive. Tamoxifen cannot be taken while pregnant. She worried whether taking it for 5 years ( 10 years is now recommended) might be too long to wait for pregnancy. She looked for research, joined online groups and talked with other women about her concerns.

“My oncologist was very science- and data-oriented and he did not have scientific information or adequate data to help me,” she says.

After almost 3 years of tamoxifen, she decided to stop and try to get pregnant. She had to wait 3 months for the medicine to leave her body before starting the embryo implantation process. She became pregnant with twins, lost one, but the other did well. Jacob was born in April 2011.

“I chose not to breastfeed and went back on tamoxifen the night I had him,” says Breck.

Second diagnosis

The family moved again, to a larger town and new practice. In 2013, Breck felt a painful nodule on her mastectomy side. “I really wasn’t that concerned, other than it was new.”

She promptly went to a radiologist, who advised a CT scan. Later that day, he showed her and her husband worrisome areas on her liver. A biopsy confirmed she had a metastasis: that the breast cancer had spread to her liver.

“Being a doctor and knowing the statistics, I thought this was about the worst news I could receive. I didn’t anticipate ever getting my life back after that,” she says.

She was referred to an oncologist in another city who specializes in young women. They met a week later, which helped.

“I left her office thinking I would get some semblance of my life back. Having her tell me she has many women living many years with metastatic breast cancer, knowing she was actively seeing women who had lived several years, gave me some hope,” recalls Breck.

She went back on chemotherapy, which shrunk some of the liver tumors, and trastuzumab (Herceptin) for HER2-positive disease. Later, she was switched to a new anti-HER2 medicine, ado-trastuzumab emtansine (Kadcyla), when it received FDA approval. Her uterus and ovaries were surgically removed and she began taking an aromatase inhibitor.

Breck says she found more support after her metastatic diagnosis than the first time. After recurrence, she met another young woman affected by breast cancer and they became close friends. There are no local support groups, but she reaches out to area young women who are diagnosed.

“As a physician, my experience is widely known in the community. All my patients are aware – I never hid anything that was going on,” she says. “Some people come to me because of it.”

Breck has also found – and given – help through Casting for Recovery, other organizations and an international Facebook group for women with metastatic breast cancer. “I try to be there for support and encouraging words,” she says.

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.

Thriving, Despite Almost 2 Decades of Breast Cancer: Sherry Lawson

Written By Erin Rowley, Writer and Content Coordinator

2015Lawson-Sherry_mediumGraduation is a proud time in a woman’s life. But for Sherry Lawson it was also a stressful time. In 1996, two weeks before she was set to graduate with a Master of Social Work degree, she found a lump on her right breast. The day after the ceremony, she had a mammogram done. That led to a diagnosis of metastatic breast cancer, cancer that travels to another part of the body – in this case, her bones. Cancer was found in her ribs as well as her breast.

The timing couldn’t have been worse. Sherry had just graduated; her partner had just started a new business. The couple had a 2-year-old son and was thinking of having another child.

Sherry’s stress was increased by the fact that, as an out lesbian woman in a long-term relationship, she sometimes felt alienated by healthcare providers.

“We had to out ourselves each visit. It’s uncomfortable and it sets you apart,” she said.

Over the almost two decades that she’s had breast cancer, Sherry, now 59, has been thrilled to see her fellow Americans become more accepting of gay and lesbian people — the cultural landscape, she says, was much less friendly 20 years ago. But for Sherry, staying in the closet wasn’t an option. This was partly because she had decided shortly before her diagnosis that she wasn’t going to hide her sexuality from anybody, but also because her partner came to her appointments to support her.

Though she doesn’t have any “horror stories,” she says healthcare providers often wouldn’t acknowledge her partner, directing all information at her instead. Sherry would sometimes see them acting warmly toward others, only to notice their tone change when they talked to Sherry.

Sometimes, she says, she felt like she was no longer “Ms. Lawson in room 204,” but “the gay woman in room 204.”

She also felt different and separated from other women with breast cancer — if there were other lesbians in the support groups she attended, they weren’t out about it.

“Yes, we had breast cancer and yes, we were females, but it would have been so much nicer for me if I could have connected with a lesbian who was going through breast cancer as well,” she says.

The stress of maintaining a relationship while dealing with cancer is experienced by straight and gay couples alike. It strained the relationship between Sherry and her partner. The pair eventually split up, but the support that her partner provided while Sherry was going through treatment still means the world to her.

Sherry says both the person who has cancer and his or her partner face many difficulties, which can lead to ugly behavior. It’s important for both people to be understanding of what the other person is going through. She says partners of people who have breast cancer do the tough job of having to constantly be supportive, while receiving little support themselves for what they’re going through. She’s not sure she could do it if she was in the other person’s shoes.

Sherry had a quadruple heart bypass in 2009 and was diagnosed with a new breast cancer in 2011. That, along with lymphedema, swelling that develops in tissues under the skin of the hand, arm, breast or torso as a result of some breast cancer treatment, slowed her down and led her to retire in 2013.

Despite the many challenges she’s faced, Sherry says dealing with breast cancer has made her a stronger person. It’s taught her the importance of forgiveness, loving herself and using what she’s learned to help others. She’s also learned to ask for, and accept, help from others, and she’s realized just how many people in her life care about her.

Her answer when asked if she’s thriving, in spite of cancer?

“You better believe it.”

Body Image and Dating After Breast Cancer: Stephanie Joseph

Written By Josh Fernandez, Digital Media Specialist

2015Joseph-Stephanie_mediumStephanie Joseph, 50, tells her doctors everything they need to know to help her maintain her health. When she was diagnosed with stage IIA, HER2-positive breast cancer in 2010, she applied this personal rule to her cancer care team by sharing her sexual orientation with them.

“The oncologist, radiologist, breast surgeon, plastic surgeon and nurses—I don’t think there was anyone on my care team who didn’t know I was a lesbian,” the Washington, D.C. area resident says.

Studies suggest that being overweight, drinking alcohol, not having children, not breast feeding and smoking may increase a woman’s risk of developing breast cancer. Lesbian and bisexual women are more likely to have some of these risk factors, which in turn may increase the risk of developing breast cancer.

Stephanie says she had some of those risk factors, which is why she thought it was important to talk about her sexual orientation when she brought up her full health history.

“It’s part of my care; it’s the overall picture of who I am and where I’ve been,” she says. “This disease was going to affect me a little differently because of who I am.”

Getting Help During and After Treatment

Stephanie’s oncologist told her that she needed a mastectomy of her right breast, followed by treatment with chemotherapy and the targeted therapy trastuzumab (Herceptin).

Her breast surgeon recommended she have someone help her the first week after surgery, while she was recovering.

“I told him I didn’t have a choice—I wasn’t married; I didn’t have a girlfriend and my family wouldn’t be able to help,” Stephanie recalls.

As she worried about the first week of recovery, Stephanie remembered a support program her friend with brain cancer used in the early 1990s. She contacted the Mautner Project, now part of Whitman-Walker Health in Washington, D.C., an organization that helped lesbians, bisexual women and transgender people through advocacy, education, primary medical care and support services. A Mautner volunteer came to Stephanie’s home every day of the week after her surgery. The volunteer helped her with household chores and made sure she rested and didn’t strain herself. Mautner volunteers also helped get her groceries on a weekly basis and drive her to and from the hospital for treatment.

“They cleaned for me, landscaped, put furniture together—if they couldn’t do something, they’d let me know,” Stephanie remembers. “I don’t know what I would have done without them.”

Stephanie sought help for her emotional needs as well. Before she finished breast cancer treatment in 2011, Stephanie began seeing a therapist. that matched her personality. “For me, it’s really important that I click with my therapist, my oncologist, primary care doctor, podiatrist—any healthcare provider,” Stephanie says. “If someone is taking care of you, I think it’s important you feel comfortable with that person, especially when you are dealing with breast cancer.”

Body Image and Dating After Treatment

One of the biggest issues Stephanie and her therapist worked on was Stephanie’s body image concerns after surgery.

In addition to mastectomy, Stephanie had breast reduction surgery on her opposite breast. She was really concerned about how a partner would view her and did not date until she finished taking trastuzumab. She considered getting breast reconstruction.

“I was going to have more surgery, and then I asked myself an important question: Who am I doing this for?” Stephanie recalls.

She asked herself if she wanted reconstruction because she was ashamed of the way she looked, or because she worried nobody would find her attractive. Stephanie says that after enough time and therapy, she realized her breasts do not define her. When she looks at her chest, she now sees the tissue from after her mastectomy as a battle scar.

“I’m almost proud of it in some ways, that I am resilient, and that scar is a sign of that,” Stephanie says.

Stephanie decided not to have breast reconstruction. She will continue to date until she finds the right partner for her.

“If I’m going to be alone for the rest of my life, it’s not going to be because I have one breast,” she says. “It’s going to be because I didn’t meet the right person. I’m convinced of that.”

Speaking Up and Speaking Out: Meghan Malley

Written by Robin Warshaw, Contributing Writer

2015Malley-Meghan_mediumIf she hadn’t been a young woman, Meghan Malley believes, her concerns about breast pain and breast changes would have been investigated more carefully. That realization has fueled her commitment to help other young women.

Meghan had a noncancerous breast tumor removed when she was 21. For years after, her doctor said pain she had in the same breast was nothing serious. At 27, that breast developed dense tissue. Meghan worried because her family has a history of cancer, including breast cancer.

She was denied a mammogram at first due to being younger than guidelines recommend. After she received the test, she was told she had fibrocystic or dense breasts.

Meghan and her husband, who live in Bloomfield Hills, Michigan, wanted to start a family. She began taking medicine to increase ovulation and had breast pain again. A breast ultrasound showed increased bloodflow compared to tests conducted the previous year. The doctor thought the change was caused by the fertility medicine and, again, told her not to worry.

She objected because she had been on the medicine for only a month. “I demanded that somebody follow up.”

Finding Care

A breast surgeon examined her, found swollen lymph nodes and did an immediate biopsy. Meghan had stage IV, or metastatic, breast cancer. She was 29. The disease was lobular, a type not easily detected on mammograms.

After considering her options, she chose a Comprehensive Cancer Center in Detroit for treatment. Meghan, who is receiving ongoing treatment, now sees herself as a partner with her oncologist in her care.

She also decided to expand her advocacy efforts. “I was an advocate for myself at the doctor’s and that failed me,” she says. “There are still a lot of things we need to do better—screening for young women, (detection in) dense breasts, inclusion of metastatic women at events….It just takes one person to speak up.”

From Passion to Action

With help from a cancer center social worker, Meghan organized a wellness support group for women in their 40s and younger. Like Meghan, many who join do not feel comfortable in groups with mostly older women.

She had tried attending a group for young women with breast cancer, but she didn’t return. As the only woman there with metastatic disease, “they looked at me like their worst nightmare,” she says.

The monthly wellness group is open to young women with any cancer type or stage. “It’s nice to have people who can understand where you’re coming from. They have some of the same pains, hurts and dilemmas in life,” Meghan says.

Now 32 and a full-time physical therapist, she enjoys being a professional caregiver for people with neurological conditions. She says her experience “helped me become a better clinician. It gives me a greater appreciation of what [my patients] are going through, and the trials and tribulations of living life with what is, most of the time, an incurable disease.”

On weekends, she takes photographs as a side business. “Photography has been a big emotional help. Behind the lens, I don’t feel like a patient,” she says.

Meghan participates in breast cancer events, won an award for her advocacy and appears in several LBBC videos on young women’s issues.

“I feel like we all can try and make a difference,” she says. “I don’t have a choice about having this disease for the rest of my life. If I have to go through this, I want to at least have a positive impact.”

Staying in Balance

Meghan’s network of friends and family gives her strength. She and her husband were high school sweethearts. He has been “amazingly supportive” as she dealt with the disease and the “guilt and sadness…all these things you don’t expect to think about when you’re 29.”

“He reassures me we can get through anything,” she says.

They have busy, full lives. “We may do more now, instead of putting it off. It’s given us a better appreciation for each other.”

PrintThis article was supported by Cooperative Agreement Number DP11-1111 from 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.