Get [empowered] with us. (Part 1)

In 1991, Living Beyond Breast Cancer was formed when Marisa C. Weiss, MD, a radiation oncologist, held a conference with the help of some of her patients. Their goal was to provide a safe space where women could gain accurate and easy-to-understand breast cancer information from medical experts, while finding and connecting with each other.

Margaux Jacks (nee Garbowski) is the daughter of one of those patients.  This is the first of her two-part story for the Living Beyond Breast Cancer 25th Anniversary Blog Series.

 

mom-dad-meIt was 1980, and I was four when my parents sat me down at our kitchen table in our ranch home in the suburbs of Philadelphia to have a talk. While I can’t recall everything that was said, one detail that would impact my life in ways I could never imagine at such a young age was when my parents brought up the “c word.” In that moment, my life changed in a profound way. Ahead of me would be a mix of highs and lows, so many sweet moments, and yet so many other terrifying ones. Whether we liked it or not, we were in for the roller coaster ride that is a cancer diagnosis.

At the age of four, I didn’t ask about my Mom, Nancy S. Garbowski, living or dying. And I was unaware that Mom could die. I knew she was going to the hospital, and hospitals made people better, right? She would be ok, the doctors would fix her, that’s what doctors do. I drew her a card to take to the hospital, on construction paper, with pretty flowers and signed it with love.

I can’t imagine what was going through my Mom’s mind. She always seemed so calm about it with me. She must have been so scared, as her Mom had died of metastatic breast cancer when she was four; her Mom was just the young age of 31. Was history going to repeat itself?

mom and meWhen she came home, I saw her scar from the amputation. In my little voice, I called it the train tracks. It was one long red line about one-half to one-inch thick in sections that went from the center of her chest all the way into her armpit. It had equally thick cross lines, same red that gave it the train track look. She smiled at my observation. I’m guessing she enjoyed my innocence.

Mom healed and life went on. She didn’t talk about cancer with me. When the next one came, I was a few years older, and understood more. When Mom was not feeling well, we would hunker down as a family — helping each other with all the routine chores of life, while making sure Mom was as comfortable as possible. While Mom, Dad and I bonded in such a profound way, there were also consequences, as it was stressful to be the main support for someone. Plus, I could not relate to how she was feeling. I could not provide any support in the huge decisions she faced with her treatment. My Dad shouldered a lot when it came to being there for my Mom.

We handled it together as a family. Her cancer allowed us an opportunity to share many intimate experiences, many girls would not share with their Mom at that age. During chemo I would help her walk outside and together we would blow clumps of her hair into the wind. As the locks of her hair would carry through the air, we would make a wish. I can recall the twinkle in her eyes. She was so proud to have given me life, even as hers was ending.

I held the family secret for years. I never told anyone, not a friend, not a neighbor. Finally, one day sitting with one of my best friends playing cards in our cabin at sleep away camp, I said it: “My Mom has cancer.” It felt so weird to utter the words — to see her reaction, her understanding of the seriousness of something like this. And that was it. I didn’t speak of it again for quite some time. It felt awkward to reveal something that was deeply private.

My Mom kept it mostly private too. I’m not sure how she processed all that she was enduring. But then she met someone who would help her in ways none of us imagined.


25th Anniversary Mark

Nancy didn’t know it, but she and a small group of fellow patients were about to help in the creation of something that would forever change the way women diagnosed with breast cancer could access trustable information and connect with a community they could depend on. Margaux’s story concludes with the second part of her blog which will be published later this week.

Get [talking] with us. (Part 2)

This is the second of a two-part blog written by Living Beyond Breast Cancer supporter, Mark Plamondon. Mark’s story is one of many LBBC will be sharing with you in 2016 as we recognize 25 years of service to those impacted by breast cancer. Mark told the first part of his story earlier this week.

Lee’s breast cancer was back. It had metastasized to her bones, liver and brain. We were faced with both the knowledge of how she would in all probability die and the statistics to determine how long we had left together.  The luxury we had when first married and starting our family of measuring time in months and years had been replaced by increments of weeks and days. No matter how hard I tried, it was impossible to stop the voice in my head that kept asking “when.” Treatments began and ended.  We had good days.  We had bad days. We laughed and we cried. We felt connected.  We sometimes felt alone.

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Remember, this was during the mid-90s. People whose lives were being changed by life-threatening illnesses didn’t have access to the many resources we have today. People had to create them or as in our case, find them through circumstance and luck.  We learned about Living Beyond Breast Cancer from Lee’s radiation oncologist, Marisa Weiss. Marisa had started LBBC just a few years before for women to connect with each other to find information and to get support.

“It’s strange.  So much of that time is committed to memory for me, as clear as snapshots in an album. Yet, I can’t recall any one particular moment or conversation Lee and I had that cemented our commitment to Living Beyond Breast Cancer.”

It’s strange.  So much of that time is committed to memory for me, as clear as snapshots in an album. Yet, I can’t recall any one particular moment or conversation Lee and I had that cemented our commitment to Living Beyond Breast Cancer.  If I had to guess, I’d say it just happened over a period of time. We came to depend on LBBC, for the support we received and equally important for the support we were able to give. As I mentioned earlier, Lee was a great communicator. There are lots of good communicators out there, people who make answers to questions about complex issues and concepts easier to understand. But there are far fewer who actually take the time to listen to the question first. That was Lee. So it’s easy to understand why she found herself drawn to an LBBC resource that continues to this day.

In 1997 the Survivors’ Helpline launched nationally, but back then it was a local phone line. It was staffed, a few hours a week, by volunteer women diagnosed with breast cancer for women diagnosed with breast cancer. It was a place where callers could find someone else similar in age or stage of diagnosis.  It gave women the chance to learn they weren’t alone and that what they were feeling was valid and real and important.  That it was OK to talk about it.  To communicate.  As a volunteer, Lee found a purpose in helping others. It gave her the chance to use cancer instead of it using her.  It helped her assign meaning to it. I supported her and the passion she had for the service because it was contagious. She advocated for it, pushed it, helped grow it. She remained passionately committed to it until the day she passed away.

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Less than a year after she was gone, I got a call from LBBC’s executive director Jean Sachs.  A young man, who’d just lost his own wife to breast cancer, had called the Survivors’ Helpline.  He was distraught, mourning a loss he was unable to accept or understand. I was asked to call him.  I agreed.

When I did, we began our conversation learning more about each other. He was younger than me.  Not a huge difference but enough that we were at different places in our lives. He was without children and I had two young boys. Grief was an emotion we both were dealing with, but in very different ways. Yet we immediately felt a camaraderie. Regardless of our differences, we were connected by something that was both horrible and profound and it made me appreciate even more Lee’s passion to communicate with someone who shared an experience that had changed their lives in an unimaginable way. I’d been asked to make a call to help a stranger in need.  But somehow, it was helping me.  It felt RIGHT.

My relationship with LBBC has only grown stronger since then. I served on the Board for 10 years.  I’ve worked on numerous projects where my marketing experience was put to use, including expanding the Survivors’ Helpline and establishing it as a core LBBC program. It’s been amazing watching LBBC grow from a local organization helping those in the greater Philadelphia metro to a major player in the nonprofit arena, that helped over 500,000 people in need last year alone.  The Survivors’ Helpline is now called the Breast Cancer Helpline. This toll-free service receives thousands of calls every year from people across the country and even offers the option to chat online if it’s preferred.  People attend LBBC conferences from every state and even other countries.  Yet the more things change, the more they remain the same.  LBBC constantly exceeds expectations.  Each and every member of the staff is an embodiment of the LBBC mission and their desire to connect those in need to trusted information and a community of support is a passion that spills over into everything they do. They are committed, they want to help and they are great at it.

Before I sign off, I’d like to leave you with this.  What I’ve shared with you just happens to be the way Lee and I attempted to cope with the hand we were dealt. It’s just one story, one to include with millions and millions of others. But it was our story and now it’s my story and for that reason I hold it close.

Being diagnosed with breast cancer is tough. Caring for someone with breast cancer is tough. There isn’t a right way to deal with it or a wrong way.  How a person copes can differ in ways really big and really small. It’s important that I recognize that you must find a way through it that works best for you and you do the same for me. I would never suggest there’s one way that’s better than another.

But, I will say this. Talking about what’s happening in your life with someone is better than not talking. The Breast Cancer Helpline is staffed by people who can provide advice, and insight and hope. Callers aren’t only women with breast cancer. Diagnosed men have used the service, too.  So have caregivers, friends, lovers and spouses.  People just like you, who given the chance can share whatever is on their mind with someone who completely gets it.

You don’t have to go through this alone. There are people who can help if you take the first step.  Call the Breast Cancer Helpline.  They helped Lee.  They helped me.  I’m confident they can help you, too.  They may even be able to make things a little more RIGHT in your life.

Exclamation point.


25th Anniversary Mark

The Breast Cancer Helpline is a service provided by LBBC. Helpline calls are answered live Monday – Friday from 9 a.m. to 9 p.m. ET. At all other times, just leave a message; calls are returned within 24 hours and often much sooner. Online chat is also available. Both are free and confidential.

If you have an LBBC story you would like to share as part of our 25th Anniversary Blog Series, contact Kevin Gianotto by emailing kevin@lbbc.org.

Thoughts on Triple-Negative Breast Cancer: Natalie Gamble

We’re launching a three-part Q&A series beginning today, Triple-Negative Breast Cancer Awareness Day, featuring blog contributor Natalie Gamble. Learn more about TNBC during our live Web stream, Triple-Negative Breast Cancer 360: Waiting for the Future, taking place today, March 3 at 6 p.m. ET.

 

20160303 Natalie GambleLiving with triple-negative breast cancer sometimes feels like you’re walking on a tight rope. That’s at least how Natalie Gamble, 44, of Denver, Colorado describes her initial feelings after she finished chemotherapy.

Unlike estrogen receptor-positive breast cancer, progesterone receptor-positive breast cancer and HER2-positive disease, no targeted therapies exist for TNBC. Although chemotherapy has been shown to be the most effective treatment, people like Natalie sometimes feel overwhelmed dealing with the uncertainty and the lack of access to a targeted therapy.

“Once I finished chemotherapy, I felt like I was left to deal with these feelings by myself,” Natalie says. “Feelings you don’t necessarily have unless you have triple-negative breast cancer.”

In this Q&A with Digital Media Specialist Josh Fernandez, Natalie discusses fear of recurrence, support for TNBC and more.

Josh: Fear of recurrence is a significant concern for people with early-stage triple-negative breast cancer. How do you manage these fears in your day-to-day life?
Natalie:  Writing has been a big help. I write a lot – poetry, blog posts, short stories – to try to get my mind off this diagnosis. Meditation has also been a huge help. It keeps me calm and in a positive frame of mind.

I’m about to participate in a study through the Rocky Mountain Cancer Centers called “Valued Living for Survivors”. It’s a study where, with a group, you learn how to manage your feelings after completing treatment. I heard about it and thought dealing with this stress in a group forum would help.

Josh: Could you share with our readers some tips on how they can get support for TNBC?
Natalie: Different approaches work for different people. The Internet was really helpful to me, but you have to be careful – not all information is created equally. The information and stories I found on social media and the Web were sometimes very disheartening and scary.

When I was doing research and Googling, websites like LBBC.ORG and MyBCTeam were so helpful. MyBCTeam, which is like a breast cancer social media, let’s you tell your story to others affected by breast cancer. When I’m having a really bad day, I hop on and ask question, look for input from my peers or just vent about my day in an update.

Another activity that’s been helpful for me is therapeutic gardening with a bonsai tree. Denver Botanic Gardens and Rocky Mountain Cancer Centers offer a program for people with cancer, where you use sheers and gardening techniques to care for the tree and almost illustrate your cancer journey as you trim and shape the tree. At the end of the program, you get to take your tree home. And you’re with others who’ve experienced cancer, so you’re not alone.

Josh: On TNBC Awareness Day what are one or two important takeaways for readers to know about triple-negative breast cancer?
Natalie:
It’s not a death sentence. Someone living with this diagnosis is always going to have in the back of her mind that the cancer might come back one day. I have that thought from time-to-time.

If you’ve just finished treatment or are years beyond, try to reflect on how far you’ve come.  Hold on to good memories, anything that can help you believe you can overcome the fear. It’s not over just because there’s no targeted therapy. You can get through treatment, get through the fear. You can do it.

 

Watch Triple-Negative Breast Cancer 360: Waiting for the Future live at 6 p.m. ET


 

Natalie L. Gamble is a happily married mother of four and grandmother of one from Denver, Colorado. Diagnosed with triple negative breast cancer in May 2014, she spends most of her time writing short stories and poetry, or enjoying her role as a stay-at-home mother and grandmother.

Get [talking] with us. [Part 1]

In 2016, Living Beyond Breast Cancer is recognizing 25 years of service to those impacted by breast cancer. Throughout the year, we’ll be featuring not only the stories of the women and men who have turned to LBBC for help, but also the stories of individuals whose commitment to the work we do have made an indelible impact on furthering our mission of connecting people to trusted information and a community of support. 

Mark Plamondon is one of those people.

You know that feeling you get when things in your life are RIGHT?  Not the kind of right when you answer a question correctly or still make it to work on time even though traffic was horrible. I’m talking about the kind of right when life is RIGHT.  All caps.  Maybe an exclamation point, too, for emphasis.  If you’re like me, you’ve probably come to find out that the times RIGHT happens are few and far between.  But they do happen.  For me, one of them was my wife, Lee.  When I was with Lee, things were RIGHT. Exclamation point.

We met while working at the same advertising agency, where we were introduced to each other through a mutual friend.  Lee was fun and smart, had a great laugh and was a fantastic communicator.

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“Lee was fun and smart, had a great laugh and was a fantastic communicator.”

She could talk to anyone about anything all while making them feel like they were the only person in the room with her.  It made her great at what she did professionally.  More importantly, it made her great to be around personally. People gravitated to her, myself included. Amazingly, the courage needed to ask her out on a date returned later when I asked her to marry me.  Lucky for me she said “yes.” Both times. And off we went.

In 1994, Lee was nursing our second son when she noticed something that made her uneasy. A visit to her doctor led to a series of tests which led to the news she had breast cancer.

My 34-year-old wife, the mother of my two young boys, had been diagnosed with early-stage breast cancer.

We were told Lee’s best option, at the time, was chemotherapy. So that’s what we did.  We hoped for the best, of course. She was young and healthy but for the breast cancer. Which tests indicated was early-stage. So, you can imagine our shock two years later when it was discovered that the cancer in Lee’s breast had metastasized.  To her bones. And liver. And brain.

My 36-year-old wife, the mother of my two young boys, had been diagnosed with stage IV breast cancer.

Earlier, I shared with you that Lee was a communicator. What made her so amazing at it professionally (her marketing jobs) and personally (everything else) was an understanding of its power.  She was amazed, even dumbfounded at the lack of anything she found to be of value to help her make sense of her diagnosis and what she could expect.  And then she found Living Beyond Breast Cancer.


 

25th Anniversary Mark

Be sure to to read the second part of Mark’s blog to learn how Lee used the power of communicating to help establish a core LBBC program and inspire Mark to use his experience to help LBBC grow in ways neither of them expected.

If you missed it, here’s the first blog in this series: Get […..] With Us: Celebrating 25 Years of Living Beyond Breast Cancer by LBBC CEO   Jean Sachs, MSS, MLSP

Hello Menopause. Nice to meet You.

In anticipation of our Feb. 24 Twitter Chat –and Valentine’s Day– we’re reblogging a post from Hear My Voice Outreach Volunteer Mandi Hudson. A version of this post appeared on Mandi’s blog, Darn Good Lemonade. It was reblogged with permission by the author.

When you are faced with cancer decisions, there are certain levels of expectations: surgery, chemo, maybe radiation. One of the unexpected bits is that hormone receptive cancers change a lot. If you were on birth control that could get shoved out the door. Your menstrual cycles end up all wacky and then there is menopause. Menopause from chemo, menopause from removing your ovaries, menopause like symptoms from taking medications like Tamoxifen.

Mandi Hudson
They also don’t warn you that along with everything your body has gone through and changes in learning to love your body that is left at the end of treatment (or during the never-ending ups and downs of metastatic treatment)… blocking your estrogen impacts your intimacy. Things change down there that you just don’t expect. I have dived into various ways to be a wife in her 30’s that is physically close to her husband, but it is a part of life that you just don’t prep for emotionally. There are different ways to improve the situation, although I sometimes just wish I could bathe in pools and pools of estrogen.

There are a variety of ways to create intimacy in your relationship. Being close. Holding each other. Finding what works for you and what works for your partner. Communication is key. Kissing is fun. 

Enjoy my blog post: 

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This isn’t my first brush with menopause. I did a temporary version when I was in chemo, my doctors expected it to be temporary since I was under 35. I have electronic access to my medical records and labs, so when new ones go up I get an email. I didn’t realize my oncologist had ordered a test to check on my menopausal state (measuring estrogen). The results look like I was still pretty pre-menopausal – I guess a 30 would have been extra-super-duper pre-menopausal:

  

Needless to say, the last minute check that my ovaries were still working before my surgery suggested that they were.

Tamoxifen also gave me every side effect they could list related to menopause, so it will be interesting to compare the two in the upcoming future (blocking estrogen vs. complete lack of estrogen… hmmm). Of course we were intentionally putting me into menopause. So I guess that makes it a little different.

The surgery I officially had was a “unilateral salpingo oophorectomy.” This means they removed my ovaries and fallopian tubes from both sides. My oncologist and OBGYN at Huntsman felt like a full hysterectomy was an unnecessary risk – and now that I had surgery I am glad it wasn’t a bigger surgery. I am surgeried out.

While we waited for me to go into the operation room we did one last final wave goodbye to my ovaries. Mike was not present just yet, since he needed a root canal and ended up having to get it while I was in pre-op (teeth grinding at night from stress is dangerous to your teeth folks). Apparently I wasn’t supposed to have my blue hat just yet (they took it off when they saw our photo brigade). I was hiding my bedhead. I had showered the night before and rolled out of bed to head to the hospital. Plus it gives the extra “surgery chic” look.

I did not feel amazing right after surgery. I wasn’t about to hop on any stages, sing, do jazz hands or any of those things I normally avoid after surgery anyway. I warned them my nausea can be a tough one, but they seemed to keep it under control while I was at the hospital.

We got me home and I went to bed for awhile. I eventually woke up and relocated to the living room for a bit. Everything was making me nauseous. Water. Looking sideways. I kept carefully hobbling to the glass doors (holding a pillow around my belly) and poking my head out into the cold gulping for air. I took my anti-nausea medications and after I ate dinner (my friend’s dropped off my favorite ramen soup) and it all just came up. Gross. I complained to my mom in true grown up style and she explained that my digestive system was probably still paralyzed post operation.

The first couple of days I started to wonder when menopause was going to kick in. I felt fine. Hot flashes hadn’t started back up since I had stopped Tamoxifen. Emotions felt ok. I was wondering if everything was magically going to be easy. Two days after surgery I remembered I still had a uterus and that I was going to have a final cycle. FIRE SALE! Oy. I think that is about when my body realized estrogen was gone. Today I discovered I lost a $50 bill that Mike had left for me on the counter. This started with me searching the house fervently super pissed off that I lost it (and grouching at Mike for having left it out when I couldn’t put it away in my purse) and ended with me in huge tears and sobbing that I had lost it (with Mike comforting me and talking me down from my hormone induced craze) – I still haven’t found it but, oh goody, menopause… I found you!

 Chat with Mandi and a panel of experts and advocates to get tips for coping with menopausal symptoms.

We Deserve to Be Heard: Making an Impact for Metastatic Breast Cancer

Jean Burns reflects on her experience in our 2015 Hear My Voice: Metastatic Breast Cancer Outreach Volunteer Program. Raise your voice and break the silence – apply to the 2016 program today.

A diagnosis of metastatic, or stage IV, breast cancer (MBC) in December 2013 left me reeling.  I was stage IV right out of the gate – de novo. I hadn’t seen that coming and I felt I had lost all control over my life. I would be in treatments for as long as I lived (median survival after an MBC diagnosis is 3 years – a statistic that has not significantly improved in more than 20 years.)

As most do, I turned to the Internet and researched everything I could find about MBC and what to expect. Once I had educated myself, I still felt this overwhelming sense of impotence.  I joined Facebook groups and reached out to MBC organizations to figure out how to cope. These provided me with both a sense of community and reminded me that I was not alone in this.  So many were in my same boat and had such great experiences and information to share.  I spent many hours on the Living Beyond Breast Cancer (LBBC) site, as it had so many resources that were useful and informative.

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Jean Burns (right) with fellow Hear My Voice Volunteer Maura Bivens. 

I also signed up to go to LBBC’s Annual Conference for Women Living With Metastatic Breast Cancer held in Philadelphia in April 2015, because it sounded like a promising way to network with MBC healthcare professionals, patients, and advocates. I applied for the Hear My Voice: Metastatic Breast Cancer Outreach Program because I felt like this would be a chance for me to turn the feeling of impotence into something powerful and make an impact. The HMV program was new in 2015 and it promised the opportunity to get involved with promoting greater awareness around MBC, impact research funding for MBC, and generally put the reins back in my hands, so I felt I was doing something productive about my disease.

I participated in the day-long training for the HMV advocates the Friday before the conference.  It really provided a good foundation for what we wanted to do as a group. There were great brainstorming sessions and I soon realized that this group of advocates was a powerhouse that would have an important impact.

We learned how to leverage our current skills (are you a good communicator, a whiz at Twitter, can you review research grants, etc.?) to advocate for MBC patients. Everyone had a niche and everyone fit into a role of some type. Each role was equally important, too.  The exchange of ideas and information was breathtaking and gave me new energy and a sense of hope and inspiration.  Some people attended a “die-in” at the end of the conference to physically represent the 113 people that die of MBC each day in the U.S.  It was a powerful and poignant message.

I got to work right away after the conference and training. For me, I knew I wanted to blog about having cancer and how it impacted my life.  I started my blog, mylittlepinkmonkey.wordpress.com, as a way to communicate with people about the impact of MBC on me and my family.

I also was interviewed on the iHeartRadio show with Melanie Young – Fearless Fabulous You to discuss the impact of an MBC diagnosis and did a local television interview as well for our ABC affiliate, KMGH-TV Channel 7 in Denver, Colorado.  The interview I did for Channel 7 can be seen here . I participated in each interview with the hope of explaining MBC and focusing on the need for more research funding for stage IV breast cancer. Friends held a fundraiser among friends and family and we were able to raise approximately $15,000 for METAvivor to use toward MBC research grants – all 100% of the funds. I wrote to my state senators and representatives asking them to support better funding and the National Institutes of Health bill to inject much-needed monies toward researching disease.

The 2015 HMV group continued to meet via telephone conferences throughout the year, and it was amazing to hear what the different members were doing. Starting yoga programs, contacting various breast cancer organizations to discuss MBC and request better focus on MBC patients, coordinating another die-in in Washington, D.C. on October 13th (MBC Awareness Day), sitting on Department of Defense committees about research funding, and so much more.

My takeaway after being an HMV volunteer – there is no reason to let an MBC diagnosis steal your sense of empowerment.  If you are looking for a way to take back some control and contribute toward making MBC a chronic condition and one that will hopefully be cured in the future, sign up to be an HMV volunteer.  Your participation will only continue to help bring awareness to MBC and if we all work together to have a voice, that voice will be heard by the larger breast cancer community. We deserve to be heard – but we have to take the laboring oar ourselves. This is our lives at stake, and being an HMV volunteer is one way to stand up and let the world know how important your life is.


 

Jean is a 49-year-old wife and mother of 2 boys (14 and 10) who works in the legal department of a large healthcare IT company handling their intellectual property matters. A Colorado native who loves hiking and enjoys the serenity of nature. Jean enjoys watching her boys play sports and her husband coach!

 

Let’s Talk Breast Reconstruction With Susan Ryan: Reconstruction Crash Course and Speaking With Providers

Susan Ryan talks about navigating breast reconstruction options and the factors she considered when making decisions. Join us Wednesday, February 17 to listen to Susan and a panel of others who have considered reconstructive surgery discuss their experiences in our free webinar, Let’s Talk: Making Breast Reconstruction Decisions.

 

“It is crucial to find doctors who will listen to your thoughts, needs and feelings. Why? Because a cancer diagnosis pulls the rug out from underneath our feet. We need to exercise some control over some decisions.”

The quote comes from Susan Ryan’s e-book, Cancer Is Not My Boss – Today or Tomorrow, a pre- and post-mastectomy resource for people diagnosed with breast cancer who have also experienced child abuse. Susan wrote those words not only as a clinical psychologist, but also as a woman who understands those feelings.

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After her own diagnosis in 2012, Susan ensured she asked the right questions and felt comfortable with her doctors as she navigated diagnosis and treatment. This was especially important to her when it came to making decisions about breast reconstruction.

In the first blog post of the Let’s Talk Breast Reconstruction Series, Susan tells Living Beyond Breast Cancer’s Digital Media Specialist, Josh Fernandez, about her crash course in breast reconstruction, including talking with providers, understanding her options and empowering others.

Josh: Why did you decide to get immediate breast reconstruction?

Susan: My plastic surgeon Dr. Matthew Becker was available to operate on me after my breasts were removed.

I thought I could return back to my life more quickly because there would be less surgeries vs other reconstructive surgeries. I had a great sex life before cancer and wanted it to continue after breast reconstruction. Cancer would take away my breasts, but it was not going to ruin my marriage or my sex life.

I thought I would look more natural which would be less upsetting to those around me including me.

Josh: You got tissue expanders with silicone implants. How did you decide on that option?

Susan: I consulted with Jane Brannon of Komen of Knoxville and she was extremely helpful. She gave me a crash course on breast reconstruction. She told me that the Dr. Matthew Becker is known as the “magician in the community.”

She told me that there were other options out there, but since I like to work out it might change the way my body works, i.e. abs would not be as strong, or if they took the dorsal muscle, swimming might weaken on one side. Since I like to swim, bike and run, implants seemed like a good fit for my lifestyle. Implants offered fewer surgeries than the other methods, which was a big plus. I also found out that they do not leak.

Josh: How did you feel about communicating your concerns about reconstruction with your provider(s)?

Susan: Communication with Dr. Becker was awesome. He listened. He was not rude. He answered my long list of questions at each visit. He gave me eye contact and smiled at me.

He only wanted to create the breasts that I wanted. He was never critical of my body nor did he ever try to sell me on more procedures or products. I told him I wanted as close to what I had before and that is what he gave me.

He was responsive when I had issues. He saw me right before he had to catch a flight to California when I had called that morning about by chest being red. He put me on antibiotics right away. He called me later to tell me to go to the hospital when he thought my labs looked off and he was right. He called throughout the weekend to check on me. I had a leaky expander in Sept of 2012 (he replaced it in 3 days, a staph infection in November of 2012 and capsular contracture. A compassionate doctor makes a huge difference.

Josh: In addition to your practice, writing and volunteering at events, you’re also an LBBC Breast Cancer Helpline Volunteer. What’s the biggest piece of advice you give to callers concerned about making breast reconstruction decisions?

Susan: Being comfortable with your doc is so important. Research shows that usually a patient’s immune system gets stronger with a good bond between doctor and patient, we recover faster when we go through an illness and/or complications. I encourage women to be open with their doctors. If there are any issues that are bothering them, it’s a great idea to put them on the table. It’s very important that when she is done with surgeries she has the size breasts that she wanted and not just what her surgeon thinks looks good.

Josh: What other important point would you like our readers to know about making decisions around reconstruction?

Susan: The choices belong to you. Breast reconstruction can be a time for transformation. It can be a time to go smaller or bigger or stay the same size. There are many choices out there. It can be the chance to never have saggy breasts again. In spite of the fact that I thought I looked a bit like Frankenstein post-mastectomy, it changed dramatically within six months. I went from not caring who saw my chest to wanting privacy because my chest began to look like I had breasts again. I tell newly diagnosed women that my breasts are beautiful. That when a doctor has to examine me, he or she always tells me how great they look. More importantly, I feel good when I look in the mirror. I see a woman who survived not only child abuse but breast cancer.


 

Susan Ryan is a clinical psychologist who helps people work through trauma. She was diagnosed with breast cancer in 2012. Cancer taught her very quickly that her self-care needed improvement. At the time of her diagnosis, there seemed to be very little written about specific techniques for people with cancer to psychologically cope, especially if they’ve had a history of child abuse. This motivated her to write an e-book on Amazon, Cancer Does Not Own Me – Today or Tomorrow, as a resource for those working through trauma in addition to a cancer diagnosis. When she’s not working or competing in 5K races, Susan volunteers in her community for mental health events and for LBBC’s Breast Cancer Helpline.

Get helpful insight on breast reconstruction during our free February webinar. Register now for Let’s Talk: Making Breast Reconstruction Decisions.