Stage4Lifer: Men Get Metastatic Breast Cancer, Too

According to the National Cancer Institute, breast cancer in men is often diagnosed at later stages. LBBC’s digital media specialist Josh Fernandez interviewed Hear My Voice Volunteer Carl (Mac) Holmes and his wife, advocate Robin Holmes, to talk about their experience with diagnosis, raising awareness and more for #Stage4Lifer.


Mac, you had been diagnosed with early-stage breast cancer in 2012. When and how did you learn you had stage IV breast cancer?

Mac: During a regular check up with Oncologist he noticed my tumor numbers were trending up and ordered a scan. We waited on the results of the scan and that same day he told me my breast cancer had returned and it was now in my spine.


How did the two of you learn what metastatic breast cancer meant? What resources were helpful in distinguishing the differences between early-stage and metastatic breast disease?

Mac: Mostly the internet. Sites of organizations like Living Beyond Breast Cancer, Metastatic Breast Cancer Alliance and the Male Breast Cancer Coalition.

Robin: I attended as many conferences as possible, including LBBC’s conference for metastatic patients and caregivers. Many of the conferences are Webcast for patients with metastatic disease and provided by major cancer centers like Dana Farber. I have been amazed with the access we have to some of the top metastatic researchers and oncologists. Information is power and believe me, this is a very complicated disease and there are many treatment options.

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What did you both do for yourselves to help process the news of this diagnosis?

Mac: I think I am still processing the diagnosis and I will soon be hitting my second-year metastatic anniversary. Unlike early stage breast cancer where you have an end date of treatment, MBC treatment never ends and is always changing as the cancer is outsmarting the drugs.

Talking to other metastatic men and women is helpful. Attending the LBBC Thriving Together conference and Hear My Voice Training felt very empowering. Becoming involved in the metastatic community has helped me see how others are coping with the unknown.

For me, I had to figure how out to take the process from “I have a disease that will most likely kill me,” to, “How can I stay alive to enjoy my family and watch my children marry and have children of their own?”

just-robinRobin: No one can prepare you for the onslaught of emotions you will fell when finding out a loved one has just learned he or she has a terminal illness. After leaving the MD’s office, all we heard was, “I am sorry to tell you, but your cancer has returned and there is no cure.”

After allowing myself to digest the horrible news, I slowly began to process the new reality. I went from a flight mode of crawling in bed and crying – when Mac wasn’t around – to the fight mode. I wanted to seek out the latest in research and possible standard care options.

The biggest job in helping Mac transition to living with metastatic disease was to help him accept his new normal. This meant, for example, going from someone who weight lifted, to a person who should not lift more than 25 pounds. This has been no easy task and we continue to get into arguments when I catch him over-doing it. I encourage to accept his new normal of fatigue and take a nap when needed.

I save my energy for what I have learned to call, “The Big Events”: scans, MD appointments where treatment plans are discussed, chemo and other medical-related situations. I realize if I wasn’t doing these things, that means either Mac is gone, or my advocacy work for better treatments is working. Working hard for the second to be true.

Mac, what were some of the ways Robin, your family and friends helped you as you transitioned to being a #Stage4Lifer?

Mac: I am lucky to have a big support system. My friends understand I am dealing with a deadly disease, but have been a great source of support and encouragement. My wife and family are everything to me. As a pilot I was away traveling and working most of the time. For many years I flew for both the Air Force Guard and FedEx. Now I am able to spend quality time with my family. Every day is a good day.

Robin, how has your approach as a caregiver changed, if at all, since Mac’s become a #Stage4Lifer?

Robin: My approach to being a caregiver really has not changed, but the fact is this job is not temporary, which takes rethinking for your life. You plan events based on his quarterly scans. It can seem overwhelming at first because of the fear of the unknown. Just the thought of losing my husband is still not something I really want to face head-on. But I also know the reality of this disease.

You learn not to sweat the small stuff and discover what is really important in life. We have learned to enjoy each day we have on this earth together.
You are both advocates who help raise awareness of the experiences of men diagnosed with breast cancer. How does being a #Stage4Lifer impact that experience?

Mac: Breast cancer is thought to be a disease that only affects women. I had heard men could get it, but it was very rare. I had no idea that about 2,600 men get diagnosed in the U.S. every year. It is rare when compared to the much higher numbers to women. However, over the course of ten years that is over 26,000 men who have had to deal with a disease that is thought to be a women-only disease.

Why is pink the color when men get the disease, too. That kind of marketing and branding is misleading the public and researchers. When attending medical conferences, the researchers refer to it as a female disease. The research is geared towards women.

When I learned more men die of metastatic breast cancer then testicular cancer, I knew more advocacy work was needed. We need to better understand why men and other groups are having higher recurrences. The disparities in higher death rate is not exclusive to men. It includes young women, women under age 40 and the African-American community.

Robin: Male breast cancer advocacy includes getting men included into clinical trials. Fighting insurance companies for turning men down for new chemotherapy because the label says you have to be post-menopausal.

The most important work we have to do for both early-stage and metastatic male breast cancer is to discover the differences. We assume treatment should be the same, but men and women are not the same. I believe precision medicine and combination therapy could be the future hope for men with metastatic disease.

I want to go to a medical conference without hearing scientists refer to breast cancer as a female disease. How will ever find better treatments for both men and women if scientists won’t accept that this disease is not only affecting women?

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How has being a #Stage4Lifer changed your approach to advocacy?

Mac: I am much more open about my disease to both men and women. I realized how little research funding goes towards MBC and not much has changed for both men and women with stage IV breast cancer. The focus of prevention research completely ignores too many groups, and my advocacy is to close the gap and save lives.

I am supporting organizations that are doing a better job educating the public on MBC and men dealing with early-stage or MBC. I then tell them to attend LBBC’s metastatic conference. It is very important to learn as much as you can about your disease. I also tell the men, I mentor, that women with metastatic cancer and organizations like METUP and METAvivor are great sources of support and motivation. 

Robin: My advocacy has gotten louder. When I found out how little money funds metastatic breast cancer, I was furious. I began to understand why we have not improved the death rates for both men and women for years. My advocacy moved from being centered around men, to focusing on all people with MBC.

Robin, what’s the biggest piece of advice you’d share with caregivers of someone who’s recently become a #Stage4Lifer?

Robin: Allow yourself time to grieve. Seek support via friends, family or a counselor if needed. Call the Block Foundation. They send, free of charge, two very good books about battling a terminal disease. One for the caregiver and one with great information, in general. They will also connect you with a long-term MBC survivor to give you the hope and encouragement to seek out care at top cancer centers. Mac’s mentor has been living with MBC for over 22 years.

Get involved. Support organizations that are helping us get the needed MBC research funding from The National Cancer Institute and the Department of Defense, which also funds breast cancer research. Get loud on social media and educate your friends.


Mac, how can a man who’s new to being a #Stage4Lifer get info and support to help meet his unique needs?

Mac and Robin at Conference.jpgMac: The Male Breast Cancer Coalition has been great. They have a list of oncologists from various cancer centers that are very interested in treating men with metastatic breast cancer. They keep us up to date with the little research that is focused on male breast cancer through social media and a newsletter.

Is there anything else either of you would like to share about being a #Stage4Lifer or caregiver?

Mac: MBC patients need hope. Our hope will require a different approach to treating breast cancer through funded metastatic research. We need innovative researchers willing to take risks, we need the FDA to allow compassionate use of drugs, we need researchers to be willing to share data, and we also need patient advocates to be part of the process.

Robin: Remember being a caregiver is a gift. You get to give more of yourself to others. You will never look back with regrets, but with memories of time you had with the person you love.

You heard Mac’s and Robin’s voices. Share yours via #Stage4Lifer.

Looking resources of support for men with breast cancer? Check out:

Male Breast Cancer Coalition website

Breast Cancer inFocus: Breast Cancer in Men


#Stage4Lifer: Believing in Yourself

Catherine Brennan Williams, on the importance of  #Stage4Lifer self-advocacy and advocacy for MBC needs. 


As young women, we are taught to listen to our healthcare providers and trust their judgment. We don’t want to be rude or question our doctors, yet when something doesn’t feel right, it’s imperative that we listen to ourselves. We need to know our bodies and act quickly when we think something is wrong because young women can and do get breast cancer.

I know this all too well because my very first mammogram at the age of 40 revealed breast cancer and I learned shortly after, that it had also metastasized to my bones and liver. I was still young and healthy, I thought, yet now I had a frightening new reality: metastatic breast cancer, for which there is no cure.

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A friend of my sister who also has MBC gave me some very good advice right after my diagnosis – you have to be your own advocate. This seems so obvious, yet for me it hadn’t been. I remember thinking to myself—whatever happens, I don’t want this to happen to anyone else. I need to DO SOMETHING. I would do everything I could to be a part of my own healthcare team, advocate for myself, and even advocate for others.

This realization led me on a path to self-advocacy. Advocating for yourself is, in my opinion, the most important type of advocacy. If we are not working with our healthcare team, participating in major decisions as an educated person who is current on the latest research, trends, and clinical trials, then who is? Our oncologists treat hundreds of patients and we are all very different. What works for me, might not work for others and vice versa. Keeping track of your own treatment and side effects, writing questions in a notebook for your next doctor visit, and saving copies of your medical records are all integral to advocating for yourself and being a member of your own care team.

I was fortunate enough to meet a metastatic patient advocate who introduced me to the world of patient advocacy—advocating for others, the community, for researchers, and organizations. She encouraged me to apply for Living Beyond Breast Cancer’s Hear My Voice: Metastatic Breast Cancer Program. This training introduced me to other advocates, types of advocacy, and the many opportunities available for patient advocates. I had lost my career because of my diagnosis, so being able to channel my energy into something I was truly passionate about was like a new lease on life. I was able to bring my professional skills to the table and utilize my experience to help end this disease.

With some training and a new focus, I gained confidence to approach various organizations to work together on advocacy projects. This month, I am organizing the first-ever tent for MBC education at the Susan G. Komen Race for the Cure in San Francisco. This partnership will help educate the public and raise much-needed awareness about Stage IV breast cancer— a diagnosis many people, even other survivors, are uninformed about.

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I am working with newly diagnosed women through my local support group—something that’s extremely important as I know the isolation and sadness that this diagnosis brings. My support group, established over 8 years ago for metastatic women diagnosed at age 45 or under, was there for me when no one else could truly understand my situation. I learned so much from them—about treatments and disease-related information—but also about living my life to the fullest, no matter how much time I have left. I remember meeting Jane, a woman who had been living with my exact diagnosis for almost 10 years. It was truly life-changing for me. She was working and very active, riding road bikes on the weekends for 50-75 miles at a time! As an active person, this was exciting. I knew that I had to keep doing the things I loved and that they may even help my prognosis. Because of these women, I began to feel that I still had a life to live—and it could even be a great one.

Other advocacy efforts I’ve become involved in include chairing the breast cancer team for the California Dialogue on Cancer, a CDC sponsored program aimed at reducing incidence rates and deaths from cancer in the state. I got involved with this program through a friend and when no one was willing to chair the team, I volunteered. A lot of advocacy is just being willing to take on responsibilities and take initiative when it’s needed.

I am also joining the advisory board of the MBC patient-advocate organization, METUP. METUP was founded by two Hear My Voice graduates from the 2015 class They saw the need for a group whose sole purpose is to end MBC through direct action. We partner with other organizations on events, like the upcoming Stage IV Stampede in Washington DC with METAvivor, to advocate for federal legislation increasing metastatic cancer research funding and challenge the status quo in the breast cancer community. MET UP knows that a cure will not be found until major changes happen in the research and legislative arenas. The number of women and men who die from breast cancer each year has not changed significantly in over 30 years. Something needs to be done, and MET UP is working on it.

Advocacy has become a big part of my life in a short amount of time. It has opened doors for me to take part in ground-breaking research, given me a platform to advocate for myself and others, and most importantly, it has given me personal fulfillment in a time when I needed it for survival. All it took was believing in myself.

Catherine is from the San Francisco Bay Area, where she lives with her husband, Chico, and their two miniature schnauzers, Coco and Charlie. She loves books, traveling, cooking & eating (She says, “I never met a pizza I didn’t like!”), the Oregon Ducks, and outdoor adventures. This year she’s training to hike Rim to Rim in the Grand Canyon and surf in Mexico! After a couple of life-changing experiences last year that helped her deal with her diagnosis, she adopted a new motto: We never have another chance at today.

#Stage4Lifer: Finding Support from People Like Me


I’m not sure I can say that I found support; rather it found me.  When I was diagnosed with breast cancer, I had just started working on the telemetry floor of Bethesda North Hospital and at the time, had absolutely no idea that this was to be one of the greatest sources of support – it was. Even three days before I had my mastectomy, a handful of the nurses and I walked in a breast cancer walk (and have done it every year since). there always seemed to be support around the corner after my initial (Stage III) diagnosis. It seems like during those first years after diagnosis there was always someone to offer support in some form or fashion.

However, The day I got the “official” news that the cancer had metastasized is a different story – I felt like I was on one of those rides at an amusement park where the “bottom drops out” – I often wondered if I had imagined it, but cards and letters seemed to stop – it was as if no one knew what to do or say now that there was no end in site to treatment and they certainly didn’t understand the diagnosis. I couldn’t even seem to get answers out of my oncologists office as to what my life would be like. So I did what everyone does – I turned to Google to find my answers.
It was then that I found LBBC and spoke with an LBBC volunteer – the thing that I was craving at that time was someone who knew and understood exactly what I was dealing with – I don’t remember her name, but we discussed the changes in her life after diagnosis and what I might be able to expect in my own.
I tend to be what I call “self contained” – support groups and the like have never been my ‘cup of tea’ – I have always felt my coping skills were good enough, but having a diagnosis like MBC really opened my eyes to the need for contact with “people like me” – someone who understood without my having to explain myself – that became my motivation to approach a local breast center to start a support group specifically for Stage IV patients – our needs are different, are concerns are different – pink ribbons are often isolating for us – but what combats that isolation is contact with other with this nasty disease – I have found a couple groups on Facebook as well, even that minimal contact can be amazing and the difference between isolation and feeling conne

#Stage4Lifer: Enacting Change with Advocacy for Metastatic Disease

Judit Saunders is a 2016 Hear My Voice: Metastatic Breast Cancer Outreach Volunteer. Judit’s post for #Stage4Lifer describes her journey and thoughts on advocacy for stage 4 breast cancer.


Judit (middle) on her way to the METUP die-in and vigil that took place after Thriving Together: Conference on Metastatic Breast Cancer.

After I was diagnosed with metastatic breast cancer (MBC), I knew sitting around wallowing in my own self-pity wouldn’t benefit anyone, including myself. So I started to wonder how I could share my story and possibly change the landscape of this disease. In particular, I realized a real need for advocacy, especially for young women diagnosed with MBC.

As I started researching anything and everything I possibly could about my disease, I quickly realized that there had to be a change in shift in pertinence to our mentality about not only this disease but how we treated it. I also became acutely aware as to how my quality of life seemed to intertwine directly with what I was doing to help others…others also afflicted by this disease and this deep yearning to enact change.

MBC Advocacy has become almost like a calling to me at this point. I was a registered nurse working in pediatrics prior to my metastatic diagnosis. In all senses it was my dream career, and my life was as I had envisioned it to be. I was married and simply going through life with plans to start a family when I received the diagnosis. Sadly, all the dreams that I assumed would materialize into reality, such as having children, abruptly came to a halt and I had to accept the very fact that all the sure things in my life would all become a big, fat question mark. I think this self-realization as to who I always knew I would be suddenly garnered a complete change of shift.

I started blogging about my experience, and then I developed a public Facebook page, which then led me to create a public Twitter profile, which helped me to network with others. Suddenly, I felt like I had a purpose again. I was the girl who didn’t even have Facebook prior to this diagnosis! Now I was suddenly using FB as a tool to both educate others, while also telling my story in hopes of helping other young women in a similar situation to see that it was still possible to be a productive member of society, and that there was still a life after a metastatic diagnosis.

Advocacy work provided me with opportunities that I never would have gotten to experience had I not dove into this world. I have had the opportunity to become a Living Beyond Breast Cancer Hear My Voice Advocate, which took me to Philadelphia for LBBC’s MBC conference and allowed me to meet other MBC advocates, which further fueled my fire to help.

The thing with this type of advocacy is it empowers patients, but at the same time it rips your heart out with emotion. This is because all the amazingly strong men and women I met with MBC were all essentially dying. Everyone at this conference was living on limited time with this proverbial clock ticking away. We are all driven to help simply because it suddenly becomes so much more than about ourselves. It becomes about all our friends. The very people we know and share our lives with. These are the people that I would desperately love to pluck off this terminal cancer ship, and place on solid ground. Advocacy in the metastatic setting is the only way I can hope for a future. If I don’t fight for my life, and the lives for those I care for deeply, then who will?

From Philadelphia, advocacy took me to Toronto, where I got the opportunity to further advocate for medicinal cannabis thanks to a great organization geared towards young women with MBC: Rethink Breast Cancer. This was yet another topic that was never on my radar prior to MBC. I had never even tried cannabis in my life and yet there I was speaking passionately, and publicly, about a topic that I felt had merits for other individuals diagnosed with cancer. That was my driving force. If it had such a positive impact on my life, then I felt it was my duty to inform others of this so that they could legally access cannabis to help them through their cancer experience.

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Judit took part in a Facebook Live discussion about medical cannabis with ReThink Breast Cancer.

So there I was speaking in front of others, on a live Facebook feed that generated over 20,000 views! Advocating passionately had allowed me to do things that I never would have done before.

Advocating has its moments of elation, especially when you know you’ve made a positive impact, but it also consumes you. This is deeply personal and I have invested not only my time, the single most valued aspect of my life, but I have done this because we have a deadline. A deadline that looms heavily over all of us. The clock is ticking, and every year over 45,000 men and women die in North America alone from MBC. This is a pandemic that will not change unless we stand up, advocate, and become those persistent, inpatient, and kindly demanding voices.

I do this wholeheartedly because, without a cure, the death rate will continue to climb, and our voices will go from screams to muffled sounds until we are no longer heard. I refuse to sit back and allow our voices to become silenced. We are here, and we demand to be heard.


You’ve heard Judit’s voice. Raise yours. Join #Stage4Lifer and share your MBC experience on Twitter and Instagram.

 Judit Saunders was diagnosed with locally advanced breast cancer at the age of 26. In 2014, age the age of 28, she learned she had metastatic breast cancer. She’s now 30 with mets to the bones and brain. Judit is a registered nurse (on disability now, but once a nurse always a nurse), married to the most supportive hubby she could ask for, lover of HOT climates, beaches and travel! She loves painting, pottery, blogging, optimism and focusing on research and everything/anything MBC-related.

#Stage4Lifer Wanda Lewis: Educating About Metastasis And Living Life to The Fullest

Our #Stage4Lifer Campaign blog series continues! Hear My Voice Outreach Volunteer Wanda Lewis wants to educate you about what “metastatic” means and how it’s impacted her life. She also wants you to know that she’s living life to the fullest.

You watched Wanda tell her story. Share yours. Join #Stage4Lifer on Twitter and Instagram.

#Stage4Lifer: How I Live With Stage 4 Breast Cancer

There are many emotional and physical side effects of metastatic breast cancer and its treatmentsRead Judy Erdahl’s #Stage4Lifer post below about how she lives each day with this diagnosis. (And follow Judy today, Wednesday, September 29, as she takes over our Instagram account, @livingbeyondbc!)

I have an odd life.  I live with metastatic breast cancer (MBC). A disease, which the American Cancer Society states, has a five-year survival rate. I’ve never followed the norm however, and I’ve been living with MBC for 5 ½ years.

I was originally diagnosed with stage Ia invasive lobular breast cancer when I was 43. I went in for my 5-year check up, sure that I had followed all the rules and would now be free from breast cancer forever.  I’d already survived another cancer scare in my early 30s. I could certainly do this. Apparently, I must be good at “doing cancer” because cancer was not done with me. Breast cancer cells had circulated through my blood stream and taken up residence in my bones. I now had metastatic breast cancer.

People ask me all the time how I live with this disease. There is constant fear, uncertainty and grief, and those are just the emotional side effects. The physical toll is indescribable.

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This technological world we live in is amazing in the connections and support it allows us to find. But, when you connect with others who have MBC they die. A lot. And it’s overwhelmingly sad.  Yet, we keep connecting with each other. We’re brave that way. We open our hearts and share the fear, the pain, the almost unspeakable worries and questions that come with holding hands with our mortality:

  •  How do we tell the ones who love us yet more bad news when a treatment fails or a scan shows progression?
  • What do we tell our children?  How much can and should they know? How do we leave a legacy that matters?
  • How can we handle the friends and family who leave because loving and caring for someone with MBC is a long, tough, and emotionally devastating haul?
  • How do we live with the emotional maelstrom that MBC brings?

I can only answer how I live with it. There is no right way. You just have to find what works for you and on some days nothing will.

I look at living with MBC as being similar to practicing yoga.  Tree pose is something most people are familiar with.  It’s all about balance and non-judgement. You can’t compare how you’re doing it with how someone else is. You find what works for you. And when you do stumble, and you will; let go of judging yourself. Breathe and try again.

It’s also about staying present. The days I live in the past I find myself depressed.  I should have done this or that. What if I had had less stress in my life?  Would cancer still have come?  Then there are the days of anxiety and panic about the future.  How bad will this get?  How debilitating will this disease ultimately become? Will I still be able to live with some dignity or will MBC strip it all from me?  What if I can’t handle the pain?  So much fear and anxiety.  I’ve learned the safest place to live is right in the present. At this moment, and with this breath, I’m ok.  I’m handing the pain, I’m living, and I’m ok.

The other thing I try is gratitude.  I am not saying that I’m thankful for cancer. Cancer sucks. I’m not saying that a positive attitude is going to make everything better.  Happy, positive people die just the same as people who aren’t positive. I am saying that there is much in my life I’ve lost control over, but the one thing I do still control is my attitude. I make a choice to find things to be grateful for.  It helps me cope.

Some days I am struggling to find anything to be thankful for because basically, it all stinks.  I look in the mirror and wonder where on earth I’ve gone and who is the person looking back?  My hair has come and gone a few times, my breasts are different, my skin is different, I gain weight, I loose weight, and on and on.

I have no consistency with my body or even my day to day life most of the time.  Cancer ends up controlling more then I’d like, no matter how hard I try to keep in control. So, the one thing I can choose is my attitude and I’ve chosen to be grateful.

This isn’t to say that some days I don’t find myself wallowing in self-pity, or anger or frustration.  I’m human.  I feel it all and it’s all valid. But I’ve learned that when I’m at my lowest and darkest if I can find one tiny thing to be grateful for,  it becomes the thread of hope that pulls me back to finding balance.

You’ve read Judy’s story. Share yours with #Stage4Lifer on Twitter and Instagram.

See Judy’s Instagram Takeover.

 Judy Erdahl has been living with cancer for over 20 years. Judy spent much of her adult life serving families as a licensed parent educator. When Judy’s third round with cancer forced her to retire she turned her energies towards writing and educating others about the real world of stage IV breast cancer.  She has shared her story with audiences large and small and is a passionate advocate of metastatic breast cancer research and education. Judy is a co-founder of “Team Judy” which raises money to support metastatic breast cancer research at the Masonic Cancer Center, University of Minnesota. She is a Hear My Voice Advocate for Living Beyond Breast Cancer and a breast cancer research reviewer for the Department of Defense Medical Research Program. (CDMRP) Judy shares her story of living with metastatic disease to encourage others to learn to live each day with gratitude, compassion and hope.  You can find her at

#Stage4Lifer, In Treatment for Life: What “Pretty Normal” Looks Like


Hear My Voice Advocate and Camp Chemo Author Camille Scheel shares what “pretty normal” looks like as a #Stage4Lifer in the EMBRACA clinical trial.

SEPTEMBER 6, 2016: Waiting for test results is never easy, yet it’s a fact of life with metastatic breast cancer. Today,  I’m going to the clinic for blood work. Specifically, to make sure my platelet, white and red counts are at acceptable levels. The requirements are extra stringent because I’m on the EMBRACA clinical trial.  Over the five months I’ve been on this trial, there have been times where my numbers have not cooperated. Now if they aren’t in line even just one more time, I’ll be disqualified from the study.  As I write, I’m not sure what my numbers will reveal later today.

The thought of ending this clinical trial makes me so nervous. Knowing I was randomized to receive the study drug, I’ve been so happy to be on this trial. This medication is keeping my cancer stable. The best part is, it’s doing so with almost no side effects. My energy, strength and digestive system are the best they’ve been since before I was diagnosed with metastatic breast cancer.  But like most things with this disease, I’m not in control. There’s no way to cheat on a blood test. Yet, if I could, honestly, I would. Having a life that feels pretty normal is something I won’t easily give up.

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What does “pretty normal” mean for me? It means I’m able to eat most anything I want without mouth sores or abnormal weight gain. These days I rarely need an afternoon nap to maintain my energy levels.  I’m even able to move my body for my household chores without getting sore. Not everyone who enrolls in a clinical trial has such an improved quality of life, but for me it’s been a nice surprise.

Early on in my metastatic journey I thought clinical trials were only for people with no other FDA approved medications left. While it’s true some early phase trials do seek patients who have run out of treatments, many more trials are geared to people who are still healthy enough to have other options. We always need other options because metastatic breast cancer eventually outwits even the best of medications.

Treatment for life means always looking ahead to the next treatment. Sometimes this means asking my oncologist about existing FDA approved drugs, and sometimes it means researching existing clinical trials. is one way to do this, but talking with other patients and your oncologist is key to finding one that’s right for you. Okay, deep breath – going in for my blood work now!

AFTERNOON: Just returned from the oncology clinic. My numbers are good! I can stay on the study! Next week will be another set of blood work, so soon, I’ll be right back to where I was earlier today worrying about my test results. But for the next seven days, I’ll do my best to relax.

The study I’m on, EMBRACA, is still seeking participants. It’s a bit of a needle in a haystack situation. Patients must have the BRCA genetic mutation, an area of metastasis large enough to follow, and free of many other major medical issues.  If you or someone you know wants to learn more about this study, visit for more information. Many other studies are seeking patients. It would be tragic to lose medical research for lack of participants.

Being part of medical research has improved my quality of life. Together, we can make a difference that will help not only ourselves, but future generations.

Watch Camille talk about clinicial trials and treatment for MBC:

You’ve heard Camille’s voice. Raise yours. Join #Stage4Lifer on social media.

Camille Scheel is author of Camp Chemo: Postcards Home from Metastatic Breast Cancer, published in October 2015. The book is based on her Caringbridge blog. In February, 2016 she partici-pated in reviews of breast cancer research in Washington, DC for the Department of Defense Congressional Funded Medical Research Program. Camille was diagnosed with ER+ BRCA2+ Stage III Breast Cancer in 2007 and bone metastasis in 2012. She lives with her husband Wade (a potter and painter), daughter Vivian (15, a musical theater actress), son Jackson (9, a gamer), Siamese cat, ShuShu and a darling little 5.5 pound Chihuahua, Lupita.

Stage4Lifer: Artifacts of Generational Caregiving and Metastatic Cancer

For #Stage4Lifer, Hear My Voice Volunteer Felicia Johnson blogs about her family history with cancer, and going from caregiver to the one needing care after a metastatic diagnosis.


feliciaThe initial shock of being diagnosed with metastatic breast cancer closed down my mind. I heard the words my surgeon said, “You have metastatic breast cancer”. It was as if I placed my hand on a hot pot without wearing an oven mitt. I left my doctor’s office trying to assimilate the information she had given me. I digress just for one moment to paint a picture.  I understood the word “cancer”.

You see, I have lived within the boundaries of three generations of cancer.  I did not experience childhood like most girls. There was no excitement about playing with dolls. There were no pajama parties.  I did not dream of my first date and kiss. Why? At the age of 14, I experienced my first role as a caregiver.  My sister was diagnosed with brain cancer at nine years old in 1974. I was responsible for visiting her along with my parents to play and comfort her as best I knew how. Unfortunately, she succumbed to the disease.

At that point, my cancer-related skill box was open for training. The cancer continued to grow and affect the women in my family like an uncontrollable weed. There have been a total of eleven women diagnosed with breast cancer in my family. It was vicious, mean and came in the form of metastatic breast cancer. At the age of 15, I was sitting in the hospital waiting for my mother to come out of breast surgery. Before I knew it, I was attending cancer-related doctor’s appointments for my aunts, sisters and cousins who had been diagnosed with breast cancer. As the years passed by, I learned how to listen, take notes and ask important questions.

What I did not realize was the depth of what it meant to be a caregiver. It was not like today. There are services that support families taking care of terminally ill loved ones. I had on the job training. It started with a diagnosis. Next, I moved to family and psychosocial concerns, surgeries, palliative care, and hospice. Was all that training to be wasted? No, you see, I was diagnosed with metastatic breast cancer in 2003.

As a mentioned earlier, I understood the word “cancer”. It was the descriptive adjective “Metastatic” attached to cancer that tossed me into moving traffic. That word silenced my mind like the darkness of a midnight moon. I did not know what to say to my doctor. I was pushed suddenly and uncontrollably on to a cancer conveyer belt. It took control of my life. However, there was also new a challenge; I was the patient. My family and friends were now taking care of me.

My body started to melt down with every imaginable side effect. I was the one whose biological machine revolted against the toxicity of chemo. I was the one going through the harshness of side effects. I was the one who could not walk more than three steps without needing to rest. . I was the one faced with the meaning of cancer and excruciating  pain. My list could go on for ten pages, but I will stop here. Yes, I was dragged inside the cocoon of metastatic breast cancer.  But I had a secret weapon. The outer shell of my silk cocoon was woven with my family and faith. My family had the care giving experience and faith to help bring me through. In closing, I continue to utilize all the caregiving skills I gained from my generational teachers. And when I think about the word N.E.D.  I say the following:

N: Navigating my way through each day because it is a blessing.

E: Even though I don’t have a diamond ring, my life is priceless. I am going to share it with my family, friends and others.

D: Don’t know about tomorrow. But, I can sing about today. I have danced in the cancer caregiving ring for more than thirty years. No matter what the outcome, faith is my main dance partner. And that’s my artifact of generational care giving.


You’ve heard Felicia’s voice. Raise yours. Join #Stage4Lifer on Instagram and Twitter.

Felicia Johnson has been living with metastatic breast cancer since 2003. The complexity of cancer has taught her to take a holistic approach to fighting it through education, medical science, faith and nutrition. Breast cancer has led her to become proactive in sharing about breast health. She serves as a breast cancer leader at a faith-based organization. She is also a cancer buddy at a major healthcare facility in Philadelphia. She enjoys learning about breast cancer research and new treatments options. In her free time, she likes writing and spending time with her family. She believes, “My purpose is to help others with their breast cancer battle.”

#Stage4Lifer: A Plane No One Wants to Board

Hear My Voice Volunteer Kristi Stone, on being her own healthcare advocate, educating others and enjoying life to the fullest. Join the #Stage4Lifer campaign with Kristi!


I am one of the faces of metastatic breast cancer. I’m Kristi Stone,  a 46-year-old wife and mother of two daughters. Describing what MBC is like is akin to waiting in line to board a plane that no one wants to board. I was diagnosed at age 44, on Christmas Day, 2014, with de novo (or initial diagnosis with) metastatic, or stage 4, breast cancer that spread to my bones, neck to knees, and innumerable lesions in my liver.  Being told treatment would not likely work and that I had about 30 days to live, was the biggest shock of my life. I received the news in such a cold, heartless manner at an emergency room, by a doctor who simply gave the news and then just walked away.

I researched and found an oncologist, sure that the doctor at the ER had to be wrong. I wish that had been the news I got,  but my initial  diagnosis was correct. My new oncologist told me the same thing. I ran out of that office, fell into some sticker bushes crying as hard as I ever have. I went home and tried to gather my thoughts. I went to see my oncologist and asked if we could at least try treatment. We decided to try. I’m very thankful that I did!

I was barely able to walk. I was using a wheelchair most of the time, because I had become so weak. I’ve felt better with every month I’ve been on the prescribed oral chemo. The treatment has been very effective for me. I have three brain mets,  but they are very small and stay controlled.

I enjoy life as much as possible, finding joy in the simplest things. I try to help others through my advocacy work, reminding folks that a metastatic breast cancer diagnosis can happen to anyone, at any age, even if you live a healthy lifestyle. And that research is our best weapon against it.

My goal is to live with MBC the best I can, continuing a quality life as long as possible. My priorities are spending time with family and friends and pushing for more research for this deadly breast cancer, so that this disease stops claiming thousands of lives a year. I want out of this line, and I don’t want to board that MBC plane. I don’t want to see anyone else have to get on either.

In the meantime,  I will enjoy each day I’m fortunate enough to have, and have the time of my life at every opportunity! Living, laughing and loving.


You heard Kristi’s voice. Raise yours. Join #Stage4Lifer on Twitter and Instagram.

Stage4Lifer: Menopause and MBC at Age 40 – The Journey I Didn’t Choose

Young people can be diagnosed with metastatic breast cancer. For Stage4Lifer, Dionna Koval writes about learning she had metastasis to her bones at age 42.


I had my first mammogram on my 40th birthday and continued to do them each year after that. In April 2014, months after my annual mammogram, I just finished moving into a new home and started having pain under my right breast. I thought I pulled a muscle from moving and ignored the pain. By the next day the pain was so unbearable that I couldn’t breathe.

My mother finally convinced me to go to the emergency room. Once there they did a series of tests, including a CT scan. By mistake the tech did the scan higher up on my breast; thank God she did because that’s how my lump was found – along with 3 broken ribs. My last mammogram was done in September of the prior year so I wasn’t that worried but in the back of my head I kept thinking what if. I was sent to do another mammogram and ultrasound. It was then that the radiologist told me he was positive it was cancer without even doing a biopsy. I had the biopsy done, and the wait for the results drove me nuts. Sure enough on April 25 I was told I had breast cancer.

Hearing the words, “You have cancer,” at 42 was like a punch in the gut, especially since I had my mammograms regularly. My life came to a halt. I have a son and am divorced. I wondered how I was I going to get through all this. Little did I know, I hadn’t even heard the worst news.


By that Monday I was contemplating whether I was getting a single or double mastectomy. Before I could make a decision, my surgeon called to tell me that we weren’t doing the surgery anymore; my doctors learned that the cancer had progressed to my bones – I was officially diagnosed with stage IV breast cancer. Once again I was devastated. Many thoughts ran through my head. I thought my diagnosis meant I was going to die soon.

I met with my oncologist the following Monday and couldn’t even hear what she was saying. It was tough for me to wrap my head around all of the terms being used and the news overall. The type of cancer I have is ER/PR-positive. My healthcare team and I decided upon a treatment plan and I started that day. It consists of three injections of Faslodex and Lupron. Here I am, in my early 40s, and put straight into menopause. I was told my cancer would respond best to this treatment, and I’ve been on it for the last 2 years.

At the beginning of my journey, I realized that I didn’t even know a lot about this cancer and neither did my family and friends. Why is it that something this serious was never talked about? How could I have lived without knowing more about MBC? Now that I have this diagnosis, how long do I have left? This cancer will eventually kill me but I’m not ready for that. I need answers, I need a cure! I’m living my life as I always have done but with more of a mission, if that makes sense. Since I don’t have the answers I need or want I will not let anything stop me from enjoying time with my son, family, and friends.

Looking back to the beginning of my nightmare, I can’t imagine doing any of this alone. I learned a lot about myself and people that I thought were friends. My biggest support system has been my parents. I live with them now because there are times I need help. I feel secure and safe knowing I have them in my corner.

My biggest fear is dying soon and not seeing my son graduate from high school, start college, get married, have children. I’m sure I’m not the only one who feels this way. I’m there for every milestone my son has. I don’t care how sick I am or how much I’m hurting – I will never miss time with him.

This journey was not one I would ever have chosen but this journey has made me stronger than ever. This journey allowed me to meet other strong women like myself. This journey will help me educate women who don’t know what MBC is. This journey motivates me to raise my voice for for those that need to understand our need for a cure. I might not be able to change the world as quickly as I’d like, but I will make a change. I plan on saving my own life, to be there for and with my son. This journey has not taken the fight out of me. I will live my life with determination, purpose and most of all love. Negativity doesn’t belong in my life and “no, I can’t” isn’t something I say. This journey may have chosen me but I will make this journey the best one yet!

You heard Dionna’s voice. Raise yours. Join #Stage4Lifer on social media.

Dionna Koval is 44 years old and was diagnosed with breast cancer on April 25, 2014. She later learned she had stage IV disease that spread to her bones. She’s lived with the disease for more than two years. She completed LBBC’s Hear My Voice: Metastatic Breast Cancer Outreach Volunteer Program training this past April. When she’s not educating others about MBC, she enjoys spending time with her 14-year-old son, family and friends.