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.”

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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.

#mybodytude: How Physical Activity Helps Me Cope With Metastatic Disease

Hear My Voice: Metastatic Breast Cancer Outreach Volunteer April Hines put together this #mybodytude photo diary on stage IV disease, exercise and body image. Read other posts in the mybodytude photo diary series.

After she began treatment for stage IV breast cancer, April Hines discovered that exercise played an important role in helping her cope mentally and physically with the disease and treatment side effects. She shares her story and #mybodytude philosophy in this #MetsMonday photo diary.

Join April and others on Instagram – snap a selfie and use the hashtag #mybodytude for the chance to win a Visa gift card!

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

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I’m April Hines, and I’ve been living with metastatic breast cancer since January 2016. This a photo of me on day of the 2014 Grateful Gobbler Walk here in Chattanooga, Tennessee. This selfie represents #mybodytude after completing treatment for my initial diagnosis; I was grateful to able to walk for long distances after finally rebuilding endurance. Staying active is really, really important to me. It’s why physical activity is the focus of my #mybodytude photo diary. #breastcancer #MetsMonday #stageivneedsmore #dontignorestageiv #breastcancerawareness #stompoutbc #metastaticbc #bcmets #cancer #cancersupport #bodyimage #selfesteem #wellness #bodypositivity #bodypositive #thisismbc

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My husband (left) is paddle boarding in this picture. I’m kayaking because I’m not very good on the paddle board. I love kayaking and do it all the time. #mybodytude #breastcancer #MetsMonday #stageivneedsmore #dontignorestageiv #breastcancerawareness #stompoutbc #metastaticbc #bcmets #cancer #cancersupport #bodyimage #selfesteem #wellness #bodypositivity #bodypositive #thisismbc

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The real cool thing about kayaking is that it’s very beneficial for me. I sometimes have lower back pain because of the metastasis to my bones. But once I’m in the water and kayaking, my back doesn’t hurt at all. Kayaking is good for people with mets because you get a lot of reward out of it, and it’s not hard on you physically. It’s great for #mybodytude. #breastcancer #MetsMonday #stageivneedsmore #dontignorestageiv #breastcancerawareness #stompoutbc #metastaticbc #bcmets #cancer #cancersupport #bodyimage #selfesteem #wellness #bodypositivity #bodypositive #thisismbc

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This is a selfie of my husband and I at the summit of Walnut Mountain, hiking the Appalachian Trail. I love hiking. My husband helps me stay active and is very supportive of helping me stay moving to improve #mybodytude. It’s important to have partners and caregivers who can help motivate you to stay active and feel safe while doing it. #breastcancer #MetsMonday #stageivneedsmore #dontignorestageiv #breastcancerawareness #stompoutbc #metastaticbc #bcmets #cancer #cancersupport #bodyimage #selfesteem #wellness #bodypositivity #bodypositive #thisismbc

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Terra, my husband and me. Terra is such a good dog. Dogs are great equalizers when you’re living with a disease like metastatic breast cancer. Terra motivates me because physical activity is important for her, too. It doesn’t matter how hard or great my day’s been – she always has the same enthusiasm for walking. If I have a bad day, her enthusiasm helps me get outside and moving, which helps my #mybodytude. #breastcancer #MetsMonday #stageivneedsmore #dontignorestageiv #breastcancerawareness #stompoutbc #metastaticbc #bcmets #cancer #cancersupport #bodyimage #selfesteem #wellness #bodypositivity #bodypositive #thisismbc

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I use different apps like BeachBody and the programs that come with it (specifically, I use #piyo) to maintain an exercise schedule. Moving my body through these activities really helps me cope with the emotional, mental and physical impacts of metastatic breast cancer. Symptoms and side effects of metastatic breast cancer and treatment can make it hard to stay active. But if you can find an activity that works for you, you’ll get major emotional and physical benefits. Staying on a routine has helped me cope with the side effects of treatment so well for so long. Being as physically well as I’ve been gives me a piece of control to thrive as much as I can. #breastcancer #MetsMonday #stageivneedsmore #dontignorestageiv #breastcancerawareness #stompoutbc #metastaticbc #bcmets #cancer #cancersupport #bodyimage #selfesteem #wellness #bodypositivity #bodypositive #thisismbc

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 personal stories during our free program on Thursday, July 14, Love, Sex and Relationships: Body Acceptance After Diagnosis.


April Hines was originally diagnosed with stage IIB breast cancer in October 2012. She was later diagnosed with stage IV breast cancer on January 22, 2016. When she and her husband are not fighting breast cancer, they’re taking care of their dog, hiking and kayaking near their home in the Chattanooga, TN, area, and spending as much time as possible with their two nieces and nephew. Follow April on Instagram: @owlchicksr948

#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.

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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.

Encouraging, Educating and Empowering By Sharing My Metastatic Breast Cancer Story

Update, June 21, 2016: Sarita Joy Jordan passed away on June 19, 2016. Beloved by so many, she was a member of Living Beyond Breast Cancer’s 2015 inaugural Hear My Voice: Metastatic Breast Cancer Outreach Program, and, prior to that served on LBBC’s Breast Cancer Helpline and volunteered at many LBBC programs. Sarita spoke frequently to those in her local Philadelphia community including the media, medical students, and the general public. She used social media to reach a broader community through blogs and a Facebook page she created. An information seeker by nature, Sarita attended many national and local conferences gathering knowledge that she then shared with others.

The LBBC staff wanted to reshare this blog post Sarita wrote last year for the Beyond The Breast Campaign. It provides a sense of what a remarkable person she was and how she lived her life with joy and commitment. We will miss her.


Sarita Joy Jordan

In December 2005, I attended my first educational conference about breast cancer. The topic was about fertility in young women while going through a breast cancer diagnosis and treatment. I remember it like it was yesterday. I sat there and just listened to all that was going on around me. I had just had chemotherapy treatment that week and wasn’t feeling 100%.

There was a guest speaker who told her story. Her journey through breast cancer was incredible. Through all the surgeries and treatments she endured displayed an insurmountable amount of strength. I remember sitting there thinking, “I don’t have a story like that, WOW!” I had just started my journey and was in a fog as to what living beyond breast cancer should look like because I was a “newbie” in the fight.

11935020_10207730658931621_429639499760256324_nAs I continued on my path, growing through each step of the process, I began to think maybe I do have a story. There are so many things that go on that are ‘not so pretty in pink’, that no one prepared me for. At each conference I attended, trying to figure out my new normal, I learned something new to add to my zest for life. Somewhere in this process I began to blog from time to time and shared my story with almost toanybody who would listen. I didn’t want anyone to have to experience the depression, fear, anger, loss friendships due to their inability to cope, and loneliness. These are the things that all cancer patients go through behind closed doors. Eventually I was able to retire from my job and define my purpose and eagerness to help others by becoming a breast cancer advocate. I learned how to tell my story to encourage, educate and empower others to fight through a breast cancer diagnosis.

SO, I was asked, why do I tell my story? Honestly, I had to think: Why do I tell my story? There are several reasons. I choose to share my story so that others don’t feel they are alone. I tell my story because I am an African-American and my community needs to be able to relate to the messenger. I tell my story because I was stage I at my initial diagnosis and now LIVING with stage IV. I tell my story because I will celebrate 10 years of survival this month and I know this gives other women hope. I tell my story because I’ve learned that little money is spent on research for metastatic breast cancer and I’m running out of time to have my voice heard. This is why I am so grateful to be a Hear My Voice Outreach Volunteer with LBBC: to participate in community events and advocacy for metastatic disease. I tell my story for those that are no longer able to tell theirs.

12002748_10207917950653797_566816831184771998_nLastly, I tell my story for my children. They will always be able to access who their mom is as a person who truly cares, as a survivor, as a fighter, as a friend, as an advocate and someone who has used her own journey to try to save lives. In closing, I realize I do have a story. Each and every on of us does. Sharing is caring!

Every Minute Matters: Enrolling in Studies While Living With Metastatic Breast Cancer

Camille Scheel is a Living Beyond Breast Cancer Hear My Voice Outreach Volunteer and author of Camp Chemo: Postcards Home from Metastatic Breast Cancer. For Breast Cancer Clinical Trials Matter to You, Camille shares her experience participating in a clinical trial for PARP Inhibitors.

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Two months ago, I was literally jumping up and down with joy. I learned I had been accepted into a clinical trial! It’s what I’d been wanting for such a long time. More than a year ago I heard about the trial and switched oncologists hoping to get into this very trial.

The trial is for a class of drugs called PARP Inhibitors. These drugs work for individuals with BRCA mutations. Years ago I started reading about PARP Inhibitors, and knowing I was BRCA positive, I thought this drug would work for me. When I first tried to get into the trial I didn’t fit the criteria. The problem was I’d received too many cytotoxic treatments already. More than a year later, my oncologist told me the criteria had changed, and now I qualified for the EMBRACA study and the drug I’m taking is Talazoparib.  This is a phase III clinical trial of a PARP Inhibitor. Phase III means the drug has already been studied in humans for safety, efficacy, and now is being compared to existing treatments.

My geneticist was the first to tell me about PARP Inhibitors. So I started Googling them. Truth be told it kind of became stalking – I was seeking any information I could about PARP Inhibitors, including trials. When I learned from ClinicalTrials.gov that an oncologist in my practice was involved in a PARP study, I switched oncologists in hopes of getting into the trial. When I didn’t qualify based on the number of cytotoxins I’d already received, I was so upset. But a year later, the study investigators were not getting enough enrollment, which made them loosen up their criteria, allowing me to qualify.

This is my first clinical trial and so far the study drug is working for me. My disease is stable. The side effects are minimal compared with other MBC treatments I’ve received. Given the chance to participate in another trial, I would do so in a heartbeat. Even if I were randomized to the control (standard of care) group, I’d still participate because it’s so important for studies to be completed in a timely manner in order to get treatments to the market faster. Living with mets, we don’t have much time, so every minute matters. Continue reading

The Bridge

Karyn Williams participated in Writing the Journey, our writing workshop series for people affected by breast cancer. “The Bridge” is a poem she wrote for the workshop.

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I crossed the bridge,
Into a new land.
The technicians said to me,
“We need to do this again,
Sorry.”
Stomach lurches,
Mouth goes dry,
Fear.

So, the Facts
And then, the Plan.
And off we go over the bridge,
Down the rabbit hole,
Into For Ever Land,
Cancerland.
Where nothing is the same.

Chemo, radiation,
medicines and machines,
Hair loss, fatigue,
Blood tests and scans,
Through the maze of alternatives.
Never sure,
No cure,
This is me
Now and for ever.
“I can’t go back to yesterday”, said Alice,
“Because I was a different person then.*

*from Alice in Wonderland, by Robert Louis Stevenson


Karyn Williams, 59, is a mother of four children and has two grandchildren (and another on the way). She lives in Australia with her loving husband. Karyn was diagnosed with early-stage breast cancer in 2008. In 2014, she learned she had metastatic breast cancer in her lungs, liver, brain and spine. Karyn has been pleased to find support through online communities like those offered through Living Beyond Breast Cancer.