Managing Difficult Anxiety: Liz Marshall Metcalfe

Written by Robin Warshaw, Contributing Writer

liz-marshall-metcalfe-profile-image-1On and off since high school, Liz Marshall Metcalfe has experienced fearful, worried thoughts and feelings. She had anxiety that often focused on health and physical symptoms. “I’d get a twinge or tightness in my chest and would think I had a heart attack,” says Liz, who lives in Kenmore, New York. “It was very irrational.”

Shortly after the anxiety began, Liz’s mother developed pain, dizziness and weight loss that doctors could not link to a cause. She was later diagnosed with primary amyloidosis, a rare disease in which protein deposits form that the body can’t break down. She died when Liz was 18. The following year, Liz’s father was treated for laryngeal cancer.

In college, Liz sometimes took prescription medicines for the anxiety but she didn’t like using them. “Taking medication for anxiety felt sort of like I was failing,” she says. “I did my best to avoid it, to varying degrees of success.”

Over the years, she tried cognitive behavioral therapy – a type of talk therapy that focuses on specific problems and finding ways to solve them– and tried other complementary therapies.  Those approaches helped for a while, but she still had cycles of anxiety.

When she was 36, Liz received a breast cancer diagnosis. She had stage II, hormone receptor-positive, HER2-negative, node-positive disease, with DCIS in the same breast. That diagnosis “was all my worst fears coming true,” Liz says. It “just threw my anxiety into complete overdrive.”

When Worry Takes Over

Feeling anxious after a breast cancer diagnosis is understandable. Young women may worry about test results, treatment choices, body and fertility changes, or how a diagnosis might affect work, relationships and children. They also may feel tension or dread without a specific reason. This distress can be temporary but sometimes becomes intense and doesn’t go away.

For Liz, anxiety about side effects took the greatest emotional toll. “With chemo, you’re feeling things that you’ve never felt before,” she says, “and you don’t know what’s happening next.” She was exhausted, nauseated and her knuckles and fingernails changed color. A herpes infection in her esophagus, caused by chemotherapy, created a burning feeling in her chest and back. She needed to have an endoscopy, in which doctors inserted a scope into her throat. This added to her feeling overwhelmed by treatment and its effects.


During chemotherapy Liz became anxious about leaving home. Sitting alone when her husband wasn’t there would cause her to have upsetting thoughts. “It was a fear of the unknown or a random occurrence,” she says. “My brain can be my worst enemy.” She worried about going to her university job and having fearful feelings there. One day, while shopping in a store, Liz felt panicked and that she had to leave as soon as she could.

At the start of chemotherapy, her oncologist gave her an anti-anxiety medicine for nausea and sleeping problems. The doctor said she should also use it for anxiety as needed.

She went for walks, did yoga and meditation, and used deep breathing techniques to calm herself. She even tried adult coloring books. “People have been throwing them at me,” she says, with a laugh. She talked with a psychotherapist at her cancer center who said Liz was doing everything the therapist would advise.

She also was in a clinical trial studying the use of a guided imagery relaxation recording, a technique in which a person is guided to imagine a positive scene, when she felt anxious. “I think it helped to a point,” says Liz, “but I needed more than that to deal with what I was dealing with.”liz-marshall-metcalfe-profile-image-2

Finding Help

Finally, she talked with her doctor about her intense feelings. On her next-to-last chemotherapy round, she was prescribed a light dose of an antidepressant that also treats anxiety. She started feeling better soon after and is still taking it several months later.

“My mind has felt so much more at ease…and I’ve made peace with needing some extra help with my anxiety as I navigate Cancerland,” Liz says. Talking with friends and people in online breast cancer groups has helped, too. She no longer thinks taking medicine is a sign of defeat. “As my doctors have told me, there’s no reason why I shouldn’t use any tool at my disposal to help me through.”

Liz describes herself as having been “pretty calm” when dealing with surgery she had to get after chemotherapy. She heard her pathology results without having an anxiety surge. And after finishing radiation therapy, she plans to get back to yoga too. Next up for Liz: hormonal therapy.

“I’m focused more on looking ahead now,” she says.


Visit LBBC.ORG to learn more about anxiety and depression in young women.

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

Metastatic Diagnosis Provides Teachable Moments: Catalina Tamayo

Written By Robin Warshaw, Contributing Writer

Although she was a nurse, Catalina Tamayo admits she didn’t really understand what it meant when she was diagnosed with HER2-positive metastatic breast cancer at age 31. So she’s not surprised that some of her co-workers don’t understand either.

“When I say I was diagnosed four years ago as stage IV, they say, ‘Well, you’re cured now, right? Because you look fine,’” says Catalina, who lives in Petaluma, California with her 9-year-old son. “I’m constantly having to explain to my fellow nurses and doctors (if they’re not in oncology) what it is to have metastatic disease.”

Outside the medical profession, more people don’t get it. They ask when her chemotherapy will end. “I have to educate them that I’m always going to be getting some kind of treatment. That if I stop, then the cancer will grow and I’ll die faster.”

tamayo edited.jpg

After diagnosis, Catalina’s oncologist urged her to join a phase I clinical trial at a hospital in nearby San Francisco. The trial gave her a standard chemotherapy medicine but added a new medicine under study, which she took as a pill. She also received trastuzumab (Herceptin).

During 6 months of weekly trial treatment, she developed severe nerve pain from the chemotherapy. Her scans showed no evidence of disease. “I told the doctor I need a break,” says Catalina. “I was thinking about my quality of life.” She left the trial, switched to other chemotherapy and stayed on trastuzumab.

Navigating Relationships

Catalina’s son had just begun kindergarten when she was diagnosed. “As long as he’s had memories, he’s only remembered me with cancer,” she says.

These days, he doesn’t want to talk about her breast cancer. He gets sad when she can’t go on school trips like other parents because she has doctors’ appointments. He asks why he can’t have a sibling, although he understands she is unable to have more children because of ongoing treatment.

Catalina and her son are very close. She encourages him to do things with other people, but he resists. “I don’t know if it’s a fear of me not being here,” she says. “I’m trying to get him to be more independent.”

Her family lives 2 hours away. Before breast cancer, she drove to see them, but treatment, work and financial strain made that too hard. “My family doesn’t drive out here because they’re really poor and can’t afford the gas,” says Catalina.

She’s also lost connection with some people she once considered friends. “When I was first diagnosed, I asked a friend to take me to chemo. She said, ‘I already made a hair appointment for that day.’”

Catalina attended LBBC’s Annual Conference for Women Living with Metastatic Breast Cancer in 2015 and other conferences. She finds support in online groups for young women with metastatic disease. “It’s kind of a sisterhood,” she says, where she can talk about worries and frustrations, ask questions and share suggestions. “We all help each other.”

A New Job

Most of Catalina’s medical bills were covered while she was in the clinical trial. After switching treatment, her health insurance from work paid part, but out-of-pocket and co-insurance costs created medical debt. She changed jobs, now pays her own health insurance premiums and has fought with the insurer about wrong charges and coverage denials.

Catalina was hesitant to talk about her diagnosis at her new job as a medical-surgical nurse. Often assigned to post-mastectomy and other cancer cases, she gradually opened up about her experiences to patients and co-workers. Telling her story in this setting inspired her to work in chemotherapy treatment. She’s now waiting for her employer to approve funding so she can take the classes and training she needs to become a certified oncology registered nurse

“I feel like because I know what it’s like to have cancer, I have a better understanding of what people are going through,” she says. “I can better empathize with them.”


Learn more about clinical trials for metastatic breast cancer.

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.

Through a Child’s Eyes: Cheryl Gordon

Written by Robin Warshaw, Contributing Writer

Women who are diagnosed with breast cancer and have young children may worry more about how the experience will affect their kids than themselves.

Cheryl Gordon, 41 of Kirkland, Washington, understands that fear from both sides. She was 5 years old when her mother went through treatment for inflammatory breast cancer (IBC) and died. When Cheryl, a university teaching associate in education, was diagnosed with stage IIb breast cancer, her oldest child was also 5.

Gordon 1 edited.jpg

Robin: Before your diagnosis, were you concerned about your family health history?

Cheryl: I was told there was no genetic component to IBC. I’m not convinced of that anymore, but my whole life I was told that [by family and a few doctors].

My mother was the only one in her family with breast cancer. She was diagnosed around 1980, when she was 31. I started having mammograms at 27 and they were always negative. I was diagnosed at 39, in 2014.

I think it was always in the back of my mind that this would happen. It’s one of those things you have to push aside. I couldn’t go through every day being afraid and waiting to be diagnosed. But, certainly, when I was diagnosed, I had the sense of, “Oh, of course!”…because I always felt I would probably have cancer.

Robin: When you were diagnosed, did you immediately realize that your son was the same age you were when your own mother was diagnosed?

Cheryl: Yes, and I think that was the hardest thing for me. Going through diagnosis, surgery and treatment, I felt I was living it through my 5-year-old eyes, watching my mother die, and as a mother with cancer. I know what it is like to have your mother die when you are young and I’m terrified that my children will also have to experience that pain.

Robin: Who told you your mother had cancer? What was it like?

Cheryl: I have an older sister and a younger brother, so he was only a baby. I remember my dad sitting my sister and I down and talking to us about it. And I remember being scared. My sister kept telling me, “It’ll be okay.”

I was understanding it on a 5-year-old level: Yes, mom is really sick but she was still doing normal, everyday things. She went through chemo, so her hair fell out. We thought her wigs were funny, so we would play with them.

A lot of family would come and visit. She would be too tired, so would rest a lot but in a family space. We would play nearby. She would lay on the floor because her joints hurt and the cold floor made them feel better.

Robin: Did you know about your mother’s treatment?

Cheryl: I’m not sure how clear my parents were about what was going on. She was in clinical trials and, with some of the medicines, her emotions would be all over the place. I have distinct memories of her having huge tantrums.

I don’t think I had any understanding of just how sick she was until she went to the hospital. My dad told me she was so sick she had to be closer to the doctors all the time. We went to see her in the hospital and she died a few days later.

Robin: What were you feeling?

Cheryl: I remember other kids thought it was really scary. To lose your parent, to other kids, that made us the weird kids.

Breast cancer was so taboo then. It wasn’t really talked about. Our teachers in elementary school tried to help, but they made it so much worse. I just wanted to be normal. I wanted, more than anything else, to be like every other kid in the class.

On Mother’s Day, we had to make cards. I remember thinking, “What do I do with my card? I have no one to give it to!” My dad tells the story that I asked him and he said, “Well, you can give it to me.” And I did. Every year.

Robin: How did you tell your sons (ages 2 and 5) about your diagnosis?

Cheryl: My husband and I decided to wait to tell our kids until we really knew what was going on. So I did all the testing, had an MRI and then met with my cancer team. After that, we talked to our kids individually. We said I had a “special sickness” in me and the doctors were going to take it out.

My older son had surgery the year before, with a cast afterwards, so I said I would have surgery and would have bandages. He could understand that because he had experienced it.

We talked about chemo as a “special medicine,” not the same as the Tylenol they take, that would make sure everything was gone. We explained that my hair would fall out and I would be very tired. I showed them my port, so they could touch it.

During this time, I heard my 5-year-old telling his friends, “You have to be gentle with my mom. She has this special medicine and her hair is going to fall out. Isn’t that funny? She’s not going to have any hair.”

Robin: How did your kids handle what went on during treatment?

Cheryl: My older son had a lot of anxiety around my surgery and chemo. He had a hard time because I looked so different, I was so tired and there were so many people in our house, helping. During chemo, I always wore a hat around them both. It scared them to see me without hair.

For my younger son, radiation was really hard. I think it was because I was gone every day for a couple hours. He was super clingy and would cry. He’s now 4 and still struggles with it. He still would rather be at home with me than anywhere else.

Robin: What were your feelings about that?

I had a lot of guilt that I brought all this fear, worry and sickness into our house. Even though I obviously did not want cancer, I had to look at my kids and see how scared they were.


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.



Breastfeeding After Mastectomy: Katie Benson

Written By Robin Warshaw, Contributing Writer

20160525 Katie Benson 1.jpgAs a teenager, Katie Benson was told she would have trouble getting pregnant. She had endometriosis, a condition in which cells from the lining of the uterus travel and grow elsewhere. Endometriosis causes pain, cramping and, often, infertility.

“The doctor told me if I didn’t get pregnant by 30, it wouldn’t happen,” she says.

Fast-forward to Katie at age 31, living in Winterville, North Carolina. She and her husband had been trying for a pregnancy, with no success.

Then a pain in her breast sent Katie to the doctor. Testing showed she had ductal carcinoma in situ, or DCIS, in her left breast. Although noninvasive, DCIS can become invasive breast cancer.

The DCIS grew from 3 centimeters at diagnosis to 6 centimeters when she had surgery three weeks later. Her doctor recommended a single mastectomy due to the size and location of the tumor. She had no other treatment.

Afterwards, her first question was, “Am I cleared to get pregnant?” Her surgeon and oncologist told her to go for it.

Pregnancy Challenges

Four months later, Katie was pregnant. “When I actually saw the little home test [showing she was pregnant], it was such a shock!” she says.

The next shock was even greater. At her first ultrasound, she looked at the screen and saw two rib cages. She was having twins.

Everything went smoothly until week 34 of the usual 40-week pregnancy. Lab tests showed Katie had preeclampsia, a complication of pregnancy that causes high blood pressure. Often, women with preeclampsia are forced to deliver the baby early. She also had HELLP syndrome, a dangerous condition in pregnancy that can cause stroke and death.

Katie was immediately hospitalized. When she realized the early delivery meant the babies would be born on the one-year anniversary of her DCIS diagnosis, she begged doctors to delay. “I was very upset,” she says. “I thought they [the twins] would be marked by cancer.”

The birth was not delayed and went safely for mother and infants, a girl and boy delivered by Caesarean section. As they recovered in the hospital, there was much more to think about. Katie wanted to breastfeed. But because of her mastectomy, she faced another challenge: Two babies. One breast.

Even women with two breasts find it challenging to nurse twins. Each baby needs to be fed from 7 to 12 times a day, depending on age, which can be hard on the mother’s breasts. Her one breast was going to have to work hard.

20160525 Katie Benson 2

Adapting to Breastfeeding

Before she knew she was having twins, Katie worried about how to breastfeed with only one breast. In general, women with two breasts alternate sides during feedings, to reduce wear-and-tear on the nipples and help both breasts to keep producing milk.

Katie’s concern multiplied when she learned there would be two babies. Then a good friend reassured her. No one could expect her to breastfeed two babies perfectly. “Just do the best you can,” her friend said. Those words comforted Katie.

She rented a hospital-grade pump to get as much milk from her one breast as possible. The babies started on three-quarters breast milk and one-quarter formula.

Even with the better pump it wasn’t easy. “For one thing, it hurt like nothing else because everything had to come from that nipple,” Katie says. She struggled with the awkwardness of being right-handed and feeding only from the right breast. Because she and her husband worked opposite shifts, she often had one baby at her breast and one in her lap, with a bottle.

She went back to work when the babies were 7 weeks old, but pumped there as well as at home. She was determined to give the babies the health benefits of her breast milk, in part because she felt guilty about them having been born early. Breastfeeding, she says, was “something I [could] provide for them.’”

Sorting It Out

Katie, now 34, remembers the stress she felt about breastfeeding and how she accepted what was possible. Instead of aiming for the “exclusively breastfeeding” standard that many women feel pressured to achieve, Katie told people she was “inclusively breastfeeding.” That phrase, to her, avoided “all the strife” that nursing can pose for new moms. Even for those with two breasts.

“Breastfeeding is so rocked with all these emotions. The nice thing about breastfeeding after mastectomy is…I wanted to give it my best, but [knew], no matter what, I’m gonna have to do formula,” she says.

The twins are now 2 years old and thriving. As time passed, Katie began to see the timing of their birth and her 1-year “cancerversary” not as a bad sign, but as a way of showing things could become better.

“It was incredible that I had never gotten pregnant before, but that after this diagnosis I did,” she says. “I prayed for a miracle and I got two.”

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.

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.


“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 and

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.