#mybodytude: Redefining Beauty After Diagnosis and Treatment

Tonie Jones, panelist for our July 14 Breast Cancer 360 program,  blogs about redefining beauty for #mybodytude. Read other posts in the mybodytude photo diary series.

After she began treatment for metastatic breast cancer, Hear My Voice Outreach Volunteer Tonie Jones forced herself to rediscover her body’s strength and beauty. The esthetician chronicles her “bodytude” from before diagnosis, after and beyond in this photo diary for the #mybodytude campaign.

Go to Instagram and share your selfie after a breast cancer diagnosis – use #mybodytude and you’ll have the chance to win a Visa gift card!

Visit LBBC.ORG to learn more about this selfie contest and campaign.

Tonie 1

My name is Tonie. At the age of 43 I had started a new career as an Esthetician and Makeup Artist. I was finally living my dream. I was also thrilled that I had finally gotten back down to a size 10 in jeans. Little did I know I was thin because I was sick. Four months after this picture was taken I was diagnosed with Stage IV Metastatic Breast Cancer. #mybodytude #breastcancer #bodyimage #baldisbeautiful #bodypositivity #dontignorestageiv #cancersucks #bcsm #breastcancerawareness #metastaticbreastcancer

Tonie 2

I was scared of so much. I was scared of how cancer would change my looks. I was scared of how my clients would react to me as I began to lose my hair and eyebrows. But, mostly I was scared of dying and leaving my three daughters without a mother. I had to fight and, I had to live. #mybodytude #breastcancer #bodyimage #baldisbeautiful #bodypositivity #dontignorestageiv #cancersucks #bcsm #breastcancerawareness #metastaticbreastcancer

Tonie 3

Man, did my makeup skills come in handy once the hair was gone. I did a lot of wigs and head wraps to hide my diagnosis at work from clients. But, when I would get home and wash it all off I had to face the reality of my life. The image in the mirror minus the makeup and wigs was hard to swallow. It was like watching myself disappear slowly. No hair, no lashes, no eyebrows and no facial expressions. I had become a shell of the person I once was. #mybodytude #breastcancer #bodyimage #baldisbeautiful #bodypositivity #dontignorestageiv #cancersucks #bcsm #breastcancerawareness #metastaticbreastcancer

Tonie 4

As my hair began to sprout up I faced the challenge of losing my breast. In August 2014, I had a double mastectomy without reconstruction. Talk about changes to your #mybodytude. After, losing so much of myself I physically I had to dig deep emotionally to find myself again. #mybodytude #breastcancer #bodyimage #baldisbeautiful #bodypositivity #dontignorestageiv #cancersucks #bcsm #breastcancerawareness #metastaticbreastcancer

Tonie 5

This picture was taken at my fist LBBC conference for MBC. This was the first time I was in room with other women who had the same body challenges that I had. It was liberating to look across the room and see others who had just grown their hair back, had just lost their hair and other beautiful women who were breastless. It was the first time in a long time that I had felt beautiful and not embarrassed about my body in really long time. #mybodytude #breastcancer #bodyimage #baldisbeautiful #bodypositivity #dontignorestageiv #cancersucks #bcsm #breastcancerawareness #metastaticbreastcancer

Tonie 6

This is me today! On July 15th, it will be two years since chemo ended. I’m not cured but I am stable. I am grateful for everyday that comes. The brows are thinner, I am back to wearing my wigs and extensions, Although, I work out pretty regularly I am 25lbs heavier than I was when I was diagnosed. Everyday, I find an issue with my body. I hate summers and tank tops. It’s so hard to work that out with bras and prosthesis. I begin my journey of reconstruction in October. All that being said life is to precious to really worry too much about the extra pounds, and stunted hair growth. I look in the mirror and I see me. Beautiful, strong, courageous me. That’s my #mybodytude. #breastcancer #bodyimage #baldisbeautiful #bodypositivity #dontignorestageiv #cancersucks #bcsm #breastcancerawareness #metastaticbreastcancer

Share your bodytude after breast cancer on Instagram with #mybodytude! Follow these instructions for the chance to win a gift card for joining the campaign.

See what others are posting to #mybodytude on Instagram.

Get more information and hear more of Tonie’s story during our free program on Thursday, July 14, Love, Sex and Relationships: Body Acceptance After Diagnosis.


Tonie Jones is an ethetician in the Denver, CO area known as The Brow Snob. She was diagnosed with metastatic breast cancer in 2014. Follow her on Instagram: brow_snob.

#mybodytude: Physical Changes and Clothes Shopping After Stage IV

Bald Ballerina and Hear My Voice: Metastatic Breast Cancer Outreach Volunteer Maggie Kudirka’s #mybodytude post on her body image and clothing style changes after a metastatic breast cancer diagnosis. Read other posts in the mybodytude photo diary series.

 

Your attitude toward your body and how you express it may change after a breast cancer diagnosis and treatment. In this photo diary, Bald Ballerina Maggie Kudirka discusses how treatment for metastatic breast cancer changed her approach to clothes shopping and her overall “bodytude”.

Read Maggie’s photo diary and share your bodytude about breast cancer and body image on Instagram! Use #mybodytude and you’ll have the chance to win a Visa gift card!

Visit LBBC.ORG to learn more about this selfie contest and campaign.

1st picture

I’m Maggie, also known as the Bald Ballerina, diagnosed at age 23 with metastatic breast cancer. I was a thin but curvy dancer with a full bust – far from the small-breasted ideal ballerina shape. I often wished my breasts were much, much smaller. It would make fitting into costumes and finding clothes that fit much easier. #mybodytude #breastcancer #bodyimage #metastaticbreastcancer #terminalbreastcancer

2nd Picture

Before I was diagnosed, I wore bright, colorful clothes; there were very few neutrals in my closet. I don’t know if it was because I was more carefree or if it was because I had to wear black leotards in ballet class. #mybodytude #breastcancer #bodyimage #metastaticbreastcancer #terminalbreastcancer

3rd Picture Photo Credit Lucas Chilczuk

One of the challenges of being a dancer with a full bust is keeping your chest from becoming a distraction. You don’t want people watching your bust go up and down during a jumping combination or checking out your cleavage when you bend forward. So I had to find good, supportive bras and then find leotards that covered up straps. (Photo Credit: Lucas Chilczuk) #mybodytude #breastcancer #bodyimage #metastaticbreastcancer #terminalbreastcancer

4th Picture

The morning after my double mastectomy was one of the happiest days of my life. The source of my cancer was gone and I finally had the body I always wanted – no reconstruction for me! My surgeon Dr Neil Friedman told me that was my silver lining. My smile tells the whole story. #mybodytude #breastcancer #bodyimage #metastaticbreastcancer #terminalbreastcancer

5th Picture. Photo Credit Andrew Holtz

Since I no longer needed a bra, I could wear any kind of leotard – spaghetti straps, low back, one shoulder, etc. I loved the freedom this offered me. Later that year, I worked with one of my favorite choreographers on a new piece. It was a relief that I did not need to worry about how supportive the costume would be. Photo credit Andrew Holtz #mybodytude #breastcancer #bodyimage #metastaticbreastcancer #terminalbreastcancer

6th Picture

Cancer raised my awareness of the toxic chemicals that are ubiquitous in our environment, not only in our food and household items, but also in the fibers used to make our clothing. I now make an effort to purchase clothes made from organic, sustainable fibers that are undyed or dyed using non-toxic natural dyes. As a result, my color palette has become more muted and neutral. I appreciate the subtle shades of undyed natural fibers like wool, linen, and cotton and I like that no toxic chemicals were used to produce or dye the fibers. #mybodytude #breastcancer #bodyimage #metastaticbreastcancer #terminalbreastcancer

Share your bodytude after breast cancer on Instagram with #mybodytude! Follow these instructions for the chance to win a gift card for joining the campaign.

Learn more about body image, dating and relationships during our free program on Thursday, July 14, Love, Sex and Relationships: Body Acceptance After Diagnosis.


Maggie Kudirka, known on social media as the Bald Ballerina, was diagnosed with stage IV breast cancer in 2014 at age 23.  She was a member of the Joffrey Concert Group in New York City before the diagnosis put her dancing career on hold. Following surgery, Maggie went back in the studio to work on regaining her strength, stamina and technique. She hopes to return to dancing in New York City again. Learn more about Maggie on her website, baldballerina.org, and follow her on Instagram: @baldballerina.

mybodytude: Losing Your Hair as a Hairstylist

Hair stylist Allyson Lynch shares a photo diary on hair loss, body image and breast cancer for our blog and Instagram campaign, #mybodytude

A reality of breast cancer: it not only changes your body, but also your bodytude (the attitude you have toward your body and how you express your attidue to life), too! Allyson Lynch kicks off our #mybodytude Campaign with her story about hair loss as a stylist.

Read Allyson’s photo diary and share your bodytude about breast cancer and body image on Instagram! Use #mybodytude and you’ll have the chance to win a Visa gift card!

Visit LBBC.ORG to learn more about this selfie contest and campaign.

Allyson 1

My name is Allyson and this is 26 year old me. All smiles after growing my hair long for a few years and finally mastering my own blowout. Haha. Unbeknownst to me that would all soon change. I’m here to tell a little part of my story and showing what #mybodytude was like losing your hair as a hairstylist.

Allyson 2

My biggest fear was seeing giant clumps of hair falling out in my hands, so, instead of waiting for the inevitable I wanted to take control. I had a head shaving party right before my first treatment and some of my closest friends and family shaved their heads with me. Having that support was one of the biggest gifts I received. It was hard to see the hair go that I had just spent so much time growing out but in a weird way it was freeing, I kinda felt bad ass like G.I. Jane.

Allyson 3

After a while I totally embraced the bare head, it was awesome and wigs were way too hot, especially when you were having a hot flash. Yea, I could have rocked that baldness 24/7 but what got me the most was all the other hair – eyebrows, eyelashes, nose hair! I did what I could with makeup when I felt up to all that. Being called “fella” in public a few times did not help with #mybodytude at this point.

Allyson 4

As my hair grew back “old man style” – pretty much there was hair on all sides and the top of my head had bald spots for so long. I still refused to wear wigs for longer than a few hours, even though I collected quite a few because my hair stylist side got really excited for the options. But until my hair started to grow in without any super visable bald spot I just continued to shave my head up until a couple months after treatment ended.

Allyson 5

And this is me today at 28 years old, just about a year and a half post treatment. I’ve taken the weird growing back stages in stride, experimenting and having fun with my colors and cuts. I’m loving my long pixie-hawk I started to sport earlier this year although I miss the ease of not having to do a thing with it. Cancer taught me how to say “screw it” and that small philosophy helps keep #mybodytude more positive. Life’s short, its ok if your hair is too.

Share your bodytude after breast cancer on Instagram with #mybodytude! Follow these instructions for the chance to win a gift card for joining the campaign.

Discover more insight and tips around body changes, dating and relationships during our free program on Thursday, July 14, Love, Sex and Relationships: Body Acceptance After Diagnosis.


Allyson Lynch is a hairstylist who  lives and works in suburban Philadelphia. She was diagnosed with breast cancer in April 2014. She later learned she was a carrier of the BRCA 1 gene mutation. Follow her on Instagram at @horror_cosmic.

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.

Brooke Cole_clinical trials blog q&a.jpg

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.

image1

“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.