#Stage4Lifer: Men Get Metastatic Breast Cancer, Too

Men have breasts, too, and they can get metastatic breast cancer. Roger Grates shared his story with our friends at the Male Breast Cancer Coalition in August. He wrote this follow-up for the #Stage4Lifer campaign.

Roger-Grates41_750W.jpgI have battled male breast cancer three times over the last 18 years.  When I finished my last radiation treatment six months ago, I was told by my oncologist the cancer had metastasized to my lung.  Facing a more imminent mortality was my first challenge. The new normal of living with oxygen, exhaustion and depression is difficult.

My second challenge was to work with my oncologist on a treatment plan.  Shortly after I started Lupron, the initial treatment, I developed atrial fibrillation. Since Lupron cannot be taken with any anti-arrhythmic drug, we were back to square one.  My doctor prescribed Faslodex and Ibrance, a new regimen that has proven to slow the progress of metastatic breast cancer.  Fortunately, the University of Michigan has an oncology/cardiology program to work with patients like me and I have been successfully treated for the atrial fibrillation.

Accessing the drug Ibrance presented the third challenge.  The drug costs $10,000.00 per month.  Since the FDA said Ibrance is for postmenopausal women, my insurance company denied payment.  The University of Michigan stepped forward and helped me get financial support from Pfizer and eventually from my insurance company.

Accessing all available resources is so important.  My wife has been a diligent caregiver as well as constantly researching the Internet for other resources.  When she discovered and contacted the Male Breast Cancer Coalition, they stepped forward immediately to offer support.  Thankfully, our family and friends have surrounded us with emotional support, which helps us get through each day.

 

You’ve heard Roger’s voice. Raise yours with #Stage4Lifer.

 

If you’re a man diagnosed with breast cancer, check out these resources:

Male Breast Cancer Coalition website.

Breast Cancer inFocus: Breast Cancer in Men

 

#Stage4Lifer: “I Am Not What Happened to Me”

Stage IV, or metastatic, breast cancer is breast cancer that has spread beyond the breast to other parts of the body. For #Stage4Lifer, Hear My Voice Volunteer April Hines reflects on her diagnosis with the disease and how it’s changed her life.

“I am not what happened to me. I am what I choose to become.”
-Carl Jung

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April and her husband at Abram’s Falls on the Appalachian Trail. It’s one of the places they hiked for their honeymoon.

Originally diagnosed with early stage breast cancer in 2012 at age 31, I endured every treatment available to me (surgery, chemotherapy, radiation and hormonal therapy; then later ovarian suppression and an aromatase inhibitor). After it all ended, I thought myself to be cancer-free. I moved on to choosing what I dreamed my life would become: getting married to the love of my life in October 2015, spending my honeymoon climbing mountains and planning for the future overall.

Shortly after returning home, I went in for a routine exam at my primary care physician’s office. The end result of this routine exam and everything that came after it  was this: getting diagnosed with metastatic breast cancer (MBC) in January 2016. I now have breast cancer in my bones and liver.

I think the most important lesson I’ve learned thus far is that there is no right way to cope. The impact of learning you have metastatic breast cancer doesn’t stop affecting you on the day you learn the news. It takes time to work through the grieving process.

I can tell you that it’s not advisable to Google statistics. And, it’s okay to have the same expectation for your family and friends. I choose to spend my life creating amazing moments and not focusing on how many celebrations I might have left.

After absorbing my reality – there is no cure for metastatic breast cancer – and having my world turned upside down, I felt terribly alone. I felt that I’d failed my loved ones; that somehow people would think that I did something wrong. I found there were people in my life that weren’t able to handle my diagnosis – people who are no longer in my life. While I threw myself into advocacy educating the public on my disease, I found that others weren’t comfortable hearing my truth. I finally realized that it’s not my job to make someone feel better about this disease. This isn’t a pretty pink ribbon and we don’t have to romanticize our stories to make others feel better. I try to ask my friends that are uncomfortable hearing about this disease to remember that it’s even more difficult to live with it, especially with no support.

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April and her husband enjoying her mom’s chicken noodle soup on the day she was diagnosed with stage IV breast cancer. She says, “If our parents hadn’t helped us out that day and the days that followed, I’m not sure how we would’ve managed.”

There are days where I’m enveloped with the “what if” thoughts. I am reminded by those who’ve been going through this for a while that it takes time to work through the grieving process. Some days I feel “normal” and can focus on advocacy work. Other times, stress means I need to step away from social media and advocacy for a period of time. I’ve found it important to repeat psychiatrist Carl Jung’s quote to myself over and over. It’s important that I remember that I’m still me; this is just me learning to live with metastatic breast cancer.

If there can be anything positive about this diagnosis, it’s the support. The silver linings are friendships with all the wonderful women and men who are MBC patients and those I’ve met through nonprofit organizations such as Living Beyond Breast Cancer, METAvivor and MET UP. Today there are so many social media connections that can be made globally on platforms such as Facebook, Twitter and Instagram.

When I first posted that I had been diagnosed with metastatic breast cancer in a breast cancer support group on Facebook, someone pointed me to online groups for MBC. Through those support groups, I found out about Living Beyond Breast Cancer’s Thriving Together Metastatic Breast Cancer Conference and thankfully my husband and I were able to attend in April 2016.

I can’t tell you in words how incredibly powerful it was to make these connections with people in the same situation as us. We celebrate each other’s victories as they’re our own victories, and we suffer the defeats the same way –  together.

And, I believe one day we’ll achieve what I feel is the ultimate dream – better treatment options and improved quality of life for metastatic cancer patients, turning this terminal disease into a chronic condition. Until then, in the words of Dylan Thomas, “I’ll not go gently into the night; I’ll rage against the dying of the light.”

You’ve heard April’s voice. Raise your voice with #Stage4Lifer.

See April takeover our Instagram account @livingbeyondbc this Wednesday, September 26!


April Hines was originally diagnosed with stage IIB breast cancer in January 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 dogs, hiking and kayaking near their home in the Chattanooga, Tennessee, area, and spending as much time as possible with their two nieces and nephew.

Stage4Lifer: Navigating Life After Hearing “You Have Metastatic Breast Cancer”

For #Stage4Lifer, Hear My Voice Volunteer Katy McRae reflects on her journey from diagnosis with metastatic breast cancer to the present.

img_4764It happened on a normal afternoon in mid-August 2009, when I got a call at work from my oncologist’s office. The call was to inform me that my blood results from a regular check-up were suspicious and might indicate a return of the breast cancer that had plagued me 4 1/2 years earlier. I groped for a chair while trying to assimilate what the person on the other end of the phone told me. I tried to suppress the sensation of dread that overpowered my body.

I listened in disbelief but understood what I had to do. I had my orders: undergo a PET scan to establish if I had had a recurrence. Within a few days I had a call from my oncologist to confirm that I had, indeed, metastatic breast cancer (MBC) in my bones.

My immediate reaction was one of power, “OK, how do I cure this? What do we need to do? Should I have a bone marrow transplant?” My doctor repeated on three occasions, while I babbled on, that MBC is an incurable disease.

I was completed horrified and deflated and realized with mounting dread that my life from this moment would never again be the same. Deep in my being I realized that this was always a possibility (About 20% to 30% of people first diagnosed with early-stage breast cancer will develop metastatic disease) but I made a conscious decision after my primary cancer treatment not to dwell on that fact.

I am a pro-active person so the idea of not being able to “cure/fight” this disease was harrowing to contemplate. I felt isolated in my misery and it wasn’t until I talked with an LBBC Breast Cancer Helpline Volunteer that I saw a glimmer of hope for my future. I realized that, even though I would never again be cancer-free, I might be able to have some time to still enjoy life.

Through the 2016 Hear My Voice: Metastatic Breast Cancer Outreach Volunteer Program, I have met some powerful women (and one man) who suffer from MBC and they are truly inspiring to the newly-diagnosed.

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Over the course of the following months I tried to reconcile my idea of what life had been to how it was going to be, and knew that for me to be happy I had to rely solely on my own resources. This was something that only I could do. The best medical care was available to me and that was a first and crucial fact that was apparent – my body would be taken care of; my spirit would be mine to manage.

Being diagnosed with MBC is like being thrown overseas to a country whose language you do not speak.I quickly learned that for my survival and some sense of ownership of my own body I would need to educate myself in the language and science of this hostile place. I relied, of course, on my oncologist’s advice but I also did my own research.

I had originally been ER/PR-positive when diagnosed with early-stage breast cancer in 2005 but I did not respond well to the aromatase inhibitor treatment that I was on in the beginning of my treatment with MBC. I chose to have a bone biopsy and learned that I was in fact HER2-positive – a curse and a blessing. A curse because it is a very aggressive cancer and a blessing because in recent years, there has been much progress in developing great targeted therapies that are quite successful in slowing the progression of this type of cancer.

I developed a strategy over time that has worked well for me. I can say that I am truly happy and enjoying life. I changed how I look at life. I don’t do the “what if, why me?” thing. It is what it is; the world owes me nothing and thinking that it does creates only self-pity and negativity, so I don’t go there. I have learned to actively change my train of thought when the dream of a cancer-free existence floats into my brain. The big picture has been replaced by being in, and relishing, the present moment.

I have been to my children’s weddings and multiple graduations. I have enjoyed since my diagnosis seven Christmases, birthdays, hundreds of beautiful walks, visits to see my family and friends, and all the wonderful events that are a part of everyday life. At some point in the acceptance of my new reality I sensed that cancer now lives with ME, whereas, in the early days, I lived with IT.

I feel truly blessed to have had the gift of the last few years. I am beyond the “average” survival time for MBC and feel that I am exactly where I am supposed to be, that I am somehow “connected”. Life is good!!!

 

You heard Katy’s voice. Raise yours! Join the #Stage4Lifer campaign.


Katy McRae has lived and worked in many countries, including Ireland, England, Saudi Arabia, Germany and the United States. She and her husband Steve began their last relocation 8 years ago, when they came from Germany to live in Frederick, Maryland. Her favorite things to do are hosting her kids (anytime, anywhere), crafting (especially knitting and felting), being outside (walking or cycling), reading, traveling, raising awareness and funding for MBC, and debating (“Anyone, any time, over anything – I’m Irish!” Katy says.)

Stage4Lifer: Stories That Get to the Heart of Living With Metastatic Breast Cancer

Catherine L. Ormerod, MSS, MLSP, discusses our new #Stage4Lifer campaign and its importance as we head into Breast Cancer Awareness Month.

 

Hear Their Voices. Raise Yours.

Over the next five days we will introduce you to an amazing group of women and men who will share their experiences living with metastatic breast cancer in our campaign, #Stage4Lifer. These women and men are members of our 2016 Hear My Voice program and work with us to help increase awareness of what Stage 4 breast cancer is and how it’s different.

They will be sharing stories that get to the heart of living with Stage 4 breast cancer – a breast cancer that very few understand and has no cure. They will share how Stage 4 disease has and has not changed them, challenged them, and why they have chosen to educate others by speaking their truths.

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Catherine Ormerod with 2015 Hear My Voice Volunteers Ishiuan Hargrove, Sarita Jordan and Adrian McClenney at our 2015 metastatic breast cancer conference. Ishiuan, Sarita and Adrian passed away this year.

The name of this social media campaign is #Stage4Lifer. Admittedly a provocative title, it is a name inspired by a young Texas mother named Holley Kitchen, who created a simple, yet powerful video about how her breast cancer was different than early-stage breast cancer. She told people she would never be cured; instead she would live with the disease the best she could. That video went viral and her story educated and inspired hundreds of thousands. Holley called herself a cancer lifer. Holley died from Stage 4 breast cancer last year.

In honor of the approximate 155,000 American women and men living with Stage 4 breast cancer and the many more who have passed, we want to continue what Holley started and share more stories and deepen the understanding.

Here’s how you can help. From September 26 – 30, we will be sharing personal stories, facts and figures to help educate the public about Stage 4 breast cancer. Please share your story on Facebook, Twitter and Instagram using #Stage4Lifer. Share and retweet our messages with others. Share the stories and facts, especially with those who believe breast cancer has a cure – it surely does not.

We cannot lead a campaign on the stories of those living with Stage 4 breast cancer, without recognizing the many incredible people who have passed away from this disease. We dedicate this campaign to members of our Hear My Voice program, who passed away this past year from metastatic breast cancer:

Adrian McClenney, Beth Montavlo, Heidi Dunnigan, Ishiuan Hargrove, Jean Burns, Jill Cohen, Jill Tyson, Marcia Taylor, Sarita Jordan.

We carry on the work they began. Join us by educating others, understanding and working toward a cure.

Learn more about #Stage4Lifer on LBBC.ORG.

Catherine L. Ormerod is the vice president of programs and partnerships at Living Beyond Breast Cancer.

 

Where Strangers Become Family: Learning and Connecting at an LBBC Conference

Attending a conference is a great way for to get the unique medical information you seek for specific types of breast cancer, while connecting with people from across the country who share your concerns. Young Advocate Jennifer Stringer Staggs shares her experiencing attend our 2014 fall conference. It’s not too late to attend this year’s conference; walk-ups are welcomed onsite!

Jennifer Stringer Staggs.jpgWhen I was diagnosed with breast cancer at 29 years old, I did a lot of internet investigating to find out as much as I could about breast cancer in young women. I came across a website called LBBC.ORG, which brought me to know and love Living Beyond Breast Cancer.

I found so much information at my fingertips and almost every question I had was answered. I started hitting road blocks when I found myself wanting to know more about the type of breast cancer I was diagnosed with – triple-negative breast cancer. At the time, triple-negative breast cancer did not have a lot of new info or research and I felt as if I was at a dead end.

I then started advertisements for LBBC’s annual fall conference on the organization’s website and Facebook page, and I thought it sounded really informative and possibly a great way for me to meet other survivors. One thing that stuck out the most to me was the fact that they had certain panels for people diagnosed with triple-negative disease. LBBC’s Young Women’s Initiative also offered a program called Young Advocates, which was taking place at the conference. Living in a smaller town there were not many other young women that were facing breast cancer with me. I felt so alone and it seemed as if I was going through it all alone. I did not want anyone else in my town to ever feel alone, and since there was not a strong young voice I wanted to be that voice.

When I found out it was in Philadelphia, I almost gave up as quickly as I found it; I live in Oregon, and traveling wouldn’t be easy. That’s when I found out there were travel grants and you could room with fellow participants for the duration of the conference. So I decided to go out on a limb and apply to be a Young Advocate so that I could make a difference.

I was still really nervous to travel across country alone, during my chemotherapy to a conference where I knew nobody. That’s when I met another young woman via Facebook who had breast cancer, and was only a town away. I convinced her to come with me and apply to be a Young Advocate, so we could go at cancer head first together.

Jennifer Stringer Staggs

Before the conference, I never went anywhere without wearing either a hat or wig. I was self conscious about being bald and people seeing me and judging me. I did not want to feel that way at the LBBC conference, so I went out and got a henna tattoo on my head so at the conference I could be brave and give much-needed smiles. It felt so freeing being able to walk about and not feel judged; instead many women there asked to hug me or told me I looked beautiful. My first day there, I teared up so many times just from meeting and talking with all of the nice and accepting people. Nobody cared what you looked like or about your background or demographics. Everyone was a big family and just supported each other, and strangers quickly became family.

The most powerful thing to happen to me at the conference was during the lunch break. A speaker asked attendees to stand up by how many years out they were from diagnosis. Seeing that in person moved me beyond what I could have ever expected and gave me so much hope. There were women like me who stood up because they were still going through treatment, and then there were women who were 20+ years from diagnosis, who not only stood up, but they stood up shouting and dancing with joy. So many happy tears happened at that moment.

A few tips I have for any newcomers to the conference:

  • Ask lots of questions and take notes
  • If breakout session speakers have slides available, take them so you can look back on the info
  • Go up to every exhibit booth, and don’t be afraid to reach out and sign up for some goodies
  • Go up to strangers and turn them into family; you never know when someone may be in need of a hug
  • Go out of your comfort zone – the conference is a place where you won’t be judged
  • Bring a camera  or use your camera phone and take lots and lots of pictures so whenever you feel down, you can look back to your family with Living Beyond Breast Cancer
  • Keep in touch with the people you meet at the conference and bring tissue!

 

Walk-ups are welcomed onsite for the 2016 Living Beyond Breast Cancer Conference: Individual Treatments, Shared Experiences! Learn more about the event at http://lbbc.org/2016conference

Her Name is Gladys

Trip (Katie) Griffith is a participant of Writing the Journey, an online writing workshop for women affected by breast cancer led by experienced facilitator, author, poetry therapist and breast cancer survivor, Alysa Cummings. The poem below was written for the workshop. Read the other poems we published by Trip,“Normal Has No Place” and “How to Interact With a Bald Person”.

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When I arrived in this strange place called CancerLand,
I tried to make sense of things:
Legions of women marched, brave soldiers ready for battle,
“Survivor” printed across their reconstructed breasts.
Billboards shouted “Fight Cancer” with pink boxing gloves.
Obituaries announced, “She lost her battle with cancer”.
Visualization was supposed to help me somehow win this war.

I tried to get with the program-
White knights slaying dragons,
Soldiers vanquishing the enemy,
Sledgehammers crushing rocks.
None of the images rang true.
How could I fight something that was part of me?
Was the solution to visualize killing me too?

After surgery my pathology boiled down to this:
Slow growing cells trying to break out, not yet successful.
Surgeons removed all they could find.
Chemo and radiation would kill anything remaining.
My prognosis was good.
My visualization still sucked.

Then Gladys appeared in my mind’s eye –
An older lady, lost and confused, almost helpless,
Shuffling along, leaning on her walker,
A loaded  bazooka, tied to the rails,
Could she even lift it, take aim and fire?
Should I shoot first, a preemptive strike?

I approach slowly;
Gladys smiles, eyes twinkling,
“I just want to rest. I want to go home. Do you have any chocolate?”
I guide her to a beautiful room, attend to her every need.
She spends her days watching The Price Is Right,
Yelling her bids, shaking her fists,
A beautiful glass jar full of chocolate close at hand.
The bazooka is forgotten, hidden behind the door.

I told my oncologist about my cancer named Gladys,
Tottering along, potentially lethal, unlikely to act.
He laughed out loud at the images in my head,
He was still grinning when he left me in my hospital bed.


Trip (Katie) Griffith is a stay-at-home mom to three teenagers and enjoys writing, painting, gardening, kayaking and just being outside. She was diagnosed with stage IIB ER/PR-positive, HER2-negative breast cancer in 2013. After surgery, chemo and radiation, she is currently dancing with N.E.D. (no evidence of disease). Her online connections to other people with breast cancer, including those through the LBBC writing course, Writing the Journey, have been an essential part of her support system since the day she heard the words “you have breast cancer.” 

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.

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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.

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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