Facing a Breast Cancer Few Know About: Patrice Starks

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

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

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

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

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

Patrice Starks

Taking Action

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

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

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

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

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

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

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

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

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

Coping With Fatigue

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

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

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

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

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

Spreading the Word

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

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

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

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

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

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

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

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

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

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

The Whole You: Meditation, Yoga and Breast Cancer

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

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

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

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

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

Why I Became The Choosy Chick

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

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

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

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

Listening to Your Inner Voice, Speaking Up to Address Your Fears

Contributor Joanne Hampton blogs about the importance of speaking up about your concerns and sharing them with your healthcare provider.

I moved from New York to Florida 6 years ago and on a recent visit to NY I was compelled to visit my oncologist. I was diagnosed with breast cancer at the age of 33. My children were 2 and 5 at the time, the ages where mommy isn’t allowed to be sick. I didn’t know anyone who had breast cancer. I was so alone and scared. I didn’t know what any of it meant or what to expect. This was 11 years ago when I felt it was shameful to say breast cancer and the internet offered little information. What I did know was I had two beautiful children who needed their mom.

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Joanne Hampton with her oncologist, Dr. Buchholtz.

I put my life in the hands of my oncologist, Dr. Michael Buchholtz. He took me into his office for over an hour and explained as much as he could to me. Looking back, I remember the sweet tone of his voice and his kind and positive words. He made it easy for me to understand what was going to happen and what to expect. I realized I wasn’t alone and I wasn’t so afraid. He gave me that. I knew he wasn’t going to give up on me and I was going to be ok. I don’t know how else to explain it except to say I could feel his heart, as strange as that may sound.

If you have gone through chemotherapy, or if you haven’t, it’s a place we visit so often for treatment, blood work, follow up, shots, and if I have forgotten anything else, I’ll just blame it on chemobrain. In an odd way, the treatment center becomes almost like a second home, but a positive is you’re on a first name basis with almost everyone in the office. I remember one day when I was having an especially rough time, Liz, one of the nurses, was kind enough to go out to her car and brought me a CD of soothing music and some headphones. It was small gestures and support like this that made a difficult experience a little more bearable.

Finally, treatment, surgeries, and radiation were over, and I was a few months out when I felt that I heard a whisper. This whisper gave me the feeling that something was wrong and I wasn’t going to see my children grow up. I shared this feeling with a friend who said that after the scare and all I had been through, it was a normal fear to have. Family members felt it was time for me to close the book on cancer, put it behind me and move on. All this seemed reasonable. I had been through a lot. It was normal to be afraid, and it was over so I should be moving on.

But the whisper continued. Was it my own fears? Was it intuition? Or was it a message from a higher place warning me? Honestly, that is what I felt–that someone up there was trying to tell me something. You can imagine how crazy I sounded when I told people, and trust me it was only a select few.

When it came time for me to return to my oncologist for a checkup, all tests showed I was perfectly fine. Before he left the room Dr. Buchholtz looked at me and asked how I was feeling. I paused and I thought, well, he might put me on some loony meds, but I had to tell him about my concerns. I said, “This might be crazy, but I am having this feeling that something is still wrong and I am going to die young.”

He looked into my eyes and told me I was not crazy. I wish I could remember the exact words he used, because it was beautiful. He told me about a new test that I qualified for. He explained it was a genetic test for the BRCA1 and BRCA2 gene mutation. He had me sit with one of the nurses and go over my family history of cancer. He took my blood and sent it on to be tested. It turned out I was positive for the BRCA1 mutation. With this mutation, the percentage of possible recurrence is about 87%. I was also found to be triple negative which means a recurrence would bring about a much more aggressive cancer.

In life, I believe if we all look back we have people that I like to refer to as angels. They are put in our path for a purpose – whether they held our hand or were our source of strength when we needed it most. Dr. Buchholtz was the only one who listened to me and from the very beginning. He touched my heart in a way that I needed most. I’m not just grateful –I love this man with his beautiful soul and heart of gold, and I can’t thank him enough for taking care of me the way he did.

I am so glad I had the strength to speak up and voice my concerns. So please, do not be afraid or embarrassed because asking questions and listening to your instinct is not silly or dumb. It could save your life. It did for me.

Joanne Hampton is a mom of two, a breast cancer survivor, community advocate and Public Relations and Marketing Director for Breast Investigators.

The Whole You: Is it Hot in Here?

Flashback Friday: Randi Rentz’s summer 2015 post from our blogging series, The Whole You, which focuses on a side effect that impacts a number of women in treatment for breast cancer– menopause. Get tips for coping with menopausal symptoms during our Twitter Chat on February 24, 2016, Heated Topic: Menopausal Symptoms and You.

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Ah, summertime. Long, sunny days. Outdoor cookouts. Lounging by the pool.

Say what??? Make that: Long, sweaty days. Internal cook-offs. Lunging for the pool.

Summer can be difficult if you’re in the midst of perimenopause or menopause. Geez! I first experienced menopausal experiences while receiving chemo. It got worse once I went on  tamoxifen. I also had to have a hysterectomy, which totally threw me for a loop. That procedure, of course, put me in permanent SCREAMING and KICKING menopause.

For those of you who have experienced menopause – naturally occurring or induced by cancer treatment – you know exactly what I mean when I say that hot flashes absolutely STINK!! Not only do they rock your world in a moment’s notice with absolutely no warning, but they (at least mine) are all consuming and utterly UNCOMFORTABLE! Well, let me be more specific: the truth of the matter is that my mind is a wasteland of emptiness during which I am at a complete and total loss of words when a hot flash comes on. They so overwhelm me.

Irritability, mood swings, sudden burst of crying. They’re all part of this new phase in my life. I am now menopause symptomatic (a.k.a. Itchy, Bitchy, Sweaty, Sleepy, Bloated, Forgetful and Psycho).

The number one symptom for me: hot flashes, cold flashes and night sweats. Now, these aren’t the sweats of relaxation you’d feel in a sauna, or the rewarding ones indicating you’ve just exercised This is more like: OMG, I’m on F%$#ing fire.  Call 9-1-1….Nooow! Continue reading

A Refreshing, Calm Morning with a Community of Support

Marcia Pinkstaff blogs about her experience with breast cancer, Yoga on the Steps and the importance of community.

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Almost 3 years ago, my life changed forever when I heard those awful words, “You have stage III invasive ductal carcinoma breast cancer.” Breast cancer? Stage III? How is that even possible? Those are the immediate thoughts that raced through my mind. Will I survive? What will life be like after?

I’m excited to tell you that in addition to advances in research and care, which have made early-stage breast cancer, mostly curable, there are also many exceptional programs to help you get your life back after diagnosis. Living Beyond Breast Cancer offers many of these programs including webinars, seminars, a conference, and my personal favorite Yoga on the Steps. LBBC has an amazing team that wants to help you navigate life after diagnosis.

Many organizations raise money for treatments and to deal with the health aspect, but there are so many additional challenges that a survivor must face including financial and mental health issues. The stress of having cancer and what’s to come can overtake you if you let it. LBBC is here to help you face these outlying issues and treat the whole person, mind and body.

I attended my first Yoga on the Steps in Denver, about a year after my diagnosis. At that time, I had finished chemo, a double mastectomy and radiation. I also had the opportunity to share my story, which can also be therapeutic, or at least it was for me. At that point, I still looked like a survivor and didn’t feel like myself, but participating in an event with such a wonderful group of people as the sun comes up is not only refreshing and calming, but a fun way to start your day.

I hope that you will join us for Yoga on the Steps in Kansas City and/or Denver. I would love to meet you and hear your story. And if you’re new to yoga or LBBC, I’d love for you to join us for this inspiring outdoor event. Yoga is a great way to not just help you physically deal with some of the new obstacles through stretching and even just getting some exercise, but also helps to relax you…something that is just as important.

Someone asked me the other day if cancer defines me. I thought it was an odd question. I responded “no.” Cancer doesn’t define me. It’s a part of who I am now and has changed me, but I get to decide what defines me. Cancer is just one of the many things that have shaped my life. You never know if and when you might here those words, “you have cancer”, and I hope you don’t. If you ever do, you will be appreciative of organizations like LBBC and the sense of community that they bring.

Cancer is a lonely disease. Surrounding yourself with others who have been there gives you something that you can’t get from your friends and family who haven’t been there. No matter how much someone loves you and thinks they know what you’re going through, they cannot possibly understand. I love all of those who tried, but I know even with family members who had cancer, I never fully comprehended what the journey was like until I lived it. Please join me in supporting this wonderful organization that gives so much back to the community.

Marcia Pinkstaff is an independent representative and star leader at Silpada Designs Jewelry and a stage III breast cancer survivor.