TNBC Aware: Education and Support Through Virtual Community

Today, March 3, marks Triple-Negative Breast Awareness Day. LBBC is marking the day with a Twitter Chat and an . Jennifer Stringer Staggs kicks of our series with a post about being newly diagnosed with triple-negative breast cancer, worrying about her daughter and sister, and finding support and community online. 

 

When my provider told me that I had triple-negative breast cancer, I was overwhelmed. Before learning my diagnosis, I Googled the different kinds and triple negative scared me the most. I read a lot about this type of breast cancer, and was told a lot of things that scared me. For example, I heard that if I had triple-negative that my chances of survival would be less than if it was hormone-sensitive, and that there was more of a chance it was genetic and could be passed on to my children.

My provider gave me a lot of information, but I found the best information going on Facebook and finding breast cancer forums. Diagnosed at age 29, I did not want to go to a local support group that had a huge age gap. It was a lot easier for me to get information and support online because everyone there either wanted the same information or already went through it. It felt more like a sisterhood in the forums. Nobody judged the questions I had and they were able to tell me what to expect from the treatments I was about to receive.

I got some of the best information going to Living Beyond Breast Cancer’s Fall Conference. I listened to professionals explain what triple-negative meant and what kind of treatments and side effects to expect. They also had an expert speaking about young women going through all of this and what to expect from “chemopause” and changes in your sex drive. I learned so much information there that none of my doctors covered.

Having triple-negative breast cancer made me very concerned for my daughter and my sisters and their kids. I worry they could still get cancer, even though I tested negative for the BRCA gene. I don’t want any of them to have to go through what I have had to endure. Continue reading

You are not alone.

A metastatic breast cancer diagnosis can be overwhelming.  But no one needs to face it alone.  In 2014, Lesley Glenn attended LBBC’s Annual Conference for Women Living with Metastatic Breast Cancer after learning of her diagnosis. Lesley, a wife, mom, daughter, friend, artist, blogger and metastatic breast cancer “thriver”  is an arts integration specialist with Students Pursuing Literacy through Art Together (SPLAT), an initiative that she created for the City of Long Beach’s Afterschool WRAP programs. This year, she is training to summit 14,500 feet on Mount Whitney for her 50th birthday. And, she “loves her life.” This is her story.

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Lesley Glenn

My name is Lesley Glenn, and I am a metastatic breast cancer “thriver.”  I call myself a “thriver” instead of a “survivor” because I choose daily to flourish and prosper in my life despite cancer.  I was first diagnosed with stage IIB ER/PR-positive, HER2-negative breast cancer in November 2012.  What words are there to describe this life changing event?   Jolted, rocked and rattled are just a few.  However, I resolved in my mind that I could give 8 months of my life to treatment, because at that time, this is how long my doctors told me it would take to “beat” this.  And I was in it for the fight.

It never crossed my mind that they might find other suspicious “spots” in my body, and when they did, I was still committed to my 8-month plan.  However, chemo took its toll on me in the first 8 weeks of treatment, and I found myself spending a good portion of a month in the hospital, with a life-threatening case of sepsis.  It was at this very low point that I knew something was not right, and after getting out of the hospital, I stopped all future chemo treatments and demanded a second opinion.  Through the course of what I call serendipity, I was led to a team of amazing doctors at Kenneth Norris Cancer Center at USC, who offered a treatment plan that nurtured my whole person, body and soul, back to health.  It was during this time that I was diagnosed with metastatic disease – meaning the breast cancer had spread to another area of my body, in my case the bones in my right shoulder.  My 8-month plan was now erased with what could be a life-long condition.  The learning curve got a little more confusing.

“Allow yourself to feel every emotion that comes your way, knowing that you are not alone in the journey and there are others who are going through the same thing.”

I no longer fit in with the women who had stages I-III of the disease, and sometimes felt like the “elephant in the room” when it came to sharing my experience with others whose breast cancer had not progressed to metastatic. While starting to make sense of my stage IV diagnosis, I found an online group called Club BC Mets, which was created specifically for women with metastatic breast cancer.   As part of this group I began a dialogue with others who shared the same journey as me, most of whom were further along in their diagnosis, and had been thriving for years with metastatic disease.  It was here that I learned about LBBC’s Annual Conference for Women Living with Metastatic Breast Cancer in Philadelphia.  I read up on it and thought it might be good for me to be with other women, women who understood what I was experiencing.

At first, considering the costs involved I didn’t think I could attend. But then, I happened upon their travel grant and fee waiver program and decided to apply.  LBBC has made the process to apply for this financial assistance so easy, and within just a couple weeks I was given both the travel grant and fee waiver. I went back to my online support group, asked if anyone else was attending and if so, if anyone was looking for a roommate.  This was my introduction to Jill, who was the moderator of the group.  She was also attending on a travel grant, and we decided to room together in Philadelphia for the conference.

I flew into Philadelphia very late the Friday night before the conference was to begin, excited, nervous and a little apprehensive.  When I got to my room, Jill had already checked in. She graciously greeted me and we talked for a few hours before calling it a night.  Saturday morning came, and we made our way downstairs for the start of the conference.  It was at that moment as I entered the main conference area that I started to feel very overwhelmed.  I was catapulted into a sea of women, who were all at different stages of metastatic disease.  I remember taking a deep breath, and giving myself a mental pep talk…”You can do this, Lesley.”   But then, seeing all the other women around me led to the following thought:  Did any of us really want to be here?  Because this is not the kind of conference one might typically say “HEY, I want to attend this!”

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Attendees at last year’s conference enjoy a moment of fun.

Yet, we were all there for a purpose – to know we were not alone.   As the day unfolded, as providence would have it, I met several women who also felt the same way I did: overwhelmed and just a tad guilty. Guilty because we were a percentage of those with METS who are called oligometastatic, or those having 5 or less areas of metastatic disease.  Having these women to dialogue with was an encouragement. However, what was more inspirational were the women who were 5, 10, 15 years in, who cheered us on and made us feel normal.  As if there was or is a normal with cancer.  My roommate Jill was literally my Godsend for the weekend.  Every thought, every question, every time I wanted to hide, she gently pulled me up and helped me to make sense of all it.   While I took away lots of meaningful information from the LBBC Mets Conference, it was the relationships that were forged that made the difference for me in my first year attending.

“You are not alone in the journey and there are others who are going through the same thing.”

One year has gone by, and I have grown so much in my quest to thrive with mets.  I believe that if I were to attend again this coming year, I would be more prepared as to what to expect, and what I would be looking to get out of the conference.  If I were to encourage first timers, my best piece of advice is “Expect everything, expect nothing.  Allow yourself to feel every emotion that comes your way, knowing that you are not alone in the journey and there are others who are going through the same thing.  Don’t be afraid to ask questions and give yourself mini time-outs for when you feel overwhelmed.  But mostly, know that this tribe of women are all on your side, willing and excited to cheer you on through your journey with mets and beyond.

 

This year, you can connect with other women at LBBC’s Annual Conference for Women Living with Metastatic Breast Cancer.  The event takes place April 11 – 12 at the Loews Philadelphia Hotel and travel grants and fee waivers are available for those who qualify.  To learn more, visit LBBC.org or call (855) 807-6386.

A Symbol of Strength, Connection and Hope

Dear Friends,

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Last year we embarked on a process to refresh and re-imagine our look. Nearly two thousand of you responded to our survey and shared your thoughts. We used your feedback as the foundation for this important work and we’re excited to share our new logo with you.

 

“This new logo is a symbol of what many of you told us you appreciate most about Living Beyond Breast Cancer: strength, connection and hope.”

This new logo is a symbol of what many of you told us you appreciate most about Living Beyond Breast Cancer: strength, connection and hope. We hope you like it.

 

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On behalf of all of us at LBBC, thank you. Please let us know what you think.

Warmly,


Jean Sachs
Chief Executive Officer
Living Beyond Breast Cancer
354 West Lancaster Ave, Suite 224
Haverford, PA 19041
(610) 645-4567

Toll-free Breast Cancer Helpline: (888) 753-LBBC (5222)

   

Growing Initiatives for Metastatic Disease and LGB People Diagnosed with Breast Cancer

Catherine-Ormerod 1Catherine L. Ormerod, MSS, MLSP, LBBC’s Vice President of Programs and Partnerships, blogs about new resources and programs we developed for people living with metastatic breast cancer and LGB people affected by the disease.

This month, LBBC introduces two new initiatives to provide our brand of trusted information and support to two underserved populations in the breast cancer community: people living with metastatic breast cancer (MBC) and lesbian, gay and bisexual people diagnosed with breast cancer.

LBBC’s Hear My Voice Outreach Program will train 25 individuals from around the country and who are living with metastatic disease to connect others with resources, information and support for coping with stage IV breast cancer. Original LBBC research, confirmed by subsequent surveys, revealed that those living with MBC feel isolated, misunderstood and often unaware of programs and resources tailored to their experience. Other studies show that participation in peer outreach programs improves emotional health and well-being.

I see the power of connection at every one of LBBC’s conferences and thus I am very excited to begin the Hear My Voice Outreach Program at LBBC’s Annual Conference for Women Living with Metastatic Breast Cancer in April. We have already received many applications for the first Hear My Voice, so we know we have tapped into a large, unmet need.

Our second initiative centers on original content we developed to assist lesbian, gay and bisexual people living with breast cancer get the quality of care they need and deserve. For many, coming out to members of their healthcare team can be difficult or scary. The guide, which is the first of its kind for people with breast cancer, provides information, support and resources to help make having these conversations easier. Continue reading

My Fear of Breast Cancer Recurrence (A Poem)

EliseBourneBusbyThe fear of recurrence, or fear of cancer coming back, is one of the most common worries among people affected by breast cancer. Elise Bourne-Busby, EdD, wrote this poem about her own fear of recurrence in anticipation of our free January webinar on this topic.

The fear that cancer may invade my body again
Keeps recurring daily in my brain,
I must change my habits, if I want to stay healthy
Good health is not cheap, I must re-assign my money,
Good nutrition first, eat only the best
Fresh fruits and vegetables, get plenty of rest,
No candy and soda, drink water every day
I am what I eat, and for this I must pay,
My immune system is the core of my being
My body is designed to do the Self–Healing,
I must treat my body kindly, I must help the process
Exercise a little more, eat a little less,
My doctors will treat me, but I must keep the appointment
Get frequent health checks, even though inconvenient,
I must not be scared to ask my doctors any question
They are the experts, I pay for this information,
I must not be afraid to say I don’t understand
I must always, always get a second opinion,
I need my health, so I must remember
To ask my doctors for my health numbers,
Show me my glucose, cholesterol and blood pressure
And when I go home I’ll take my waist measure,
My good health is not only important, it’s mandatory
I must fire my doctors if necessary,
But I am not perfect, I do not always rest
Sometimes I eat junk food, and make my life a mess,
So I have to stay strong, and talk to myself daily
Nurture the core of my being, to balance spirit, mind and body,
I must invest in good health, fear is not an option
I must take care of me, that’s the only solution.

Elise Bourne-Busby, EdD, is a 15-year breast cancer survivor, and is a Reach to Recovery volunteer for the American Cancer Society. She is one of the founding members and chairperson of the group More Than Friends, which gives Sharing and Caring baskets to cancer patients undergoing treatment, provides transportation, makes home and hospital visits and assists the uninsured and under-insured with information to solve medication needs and financial issues.

The fear of recurrence doesn’t have to run your life. Join us on Thursday, January 29, at noon ET, for our fear of reccurence webinar, to learn about practical tools to help you manage your fears.

Celebrating My Five Year Milestone

Surgery Day: Tiffany just before her double mastectomy.

Surgery Day: Tiffany just before her double mastectomy.

LBBC blogger and friend Tiffany Mannino is back, but this time, instead of sharing one of her entries from her self-titled letters ‘Beautifully Broken: Letters From a Girl/Woman/Human in Progress’ penned to her unborn daughter Lola during her breast cancer journey, she’s here to share what being 5 years out from her cancer diagnosis means to her and what she’s learned in the process…

Three weeks ago, I celebrated my five year survivor anniversary. Whether or not the medical world would allow me to call myself ‘cured’, December 16th was an absolutely incredible day and a milestone I will never forget. They say it takes a village to raise a child, but I as reflect on the last five years of my life, I believe that it also takes a village to raise a cancer survivor.  I will never forget when it first hit me that I had my very own village. May 2010…my first Race for the Cure as a survivor. Our Breastfix at Tiffany’s team of more than twenty came together on a very cold, May morning. I was freezing and SO weak from chemo, but I crossed that finish line with tears in my eyes and incredible joy in my heart.  I can’t ever remember a time feeling more loved and supported.

Today: Celebrating where life has taken her.

Today: Celebrating where life has taken her.

I can’t believe that moment was almost five years ago. In some ways it seems like yesterday and in other ways it seems like a lifetime ago.  Of course, me being me, I have taken a lot of time to reflect on what I’ve learned and how I have grown from this experience.  In some ways, my post cancer journey has been more difficult than being in ‘battle mode’.  Having cancer changed the course of my life and although I was unbelievably thankful that God healed me, I also had to ask, “Ok. I’m alive. Now what?” I was in my late thirties, divorced, unable to bear children, and completely lost.  Several years later, I’m still trying to figure it all out, but the greatest thing I have learned is that I am so blessed because although I may not know where my life is headed, I have a village. I have family, friends, neighbors, co-workers, students, parents, doctors, yogis, trainers, fellow survivor sisters, bloggers, and even former boyfriends who love and support me no matter what.

Continue reading

Hear My Voice: From Doctor to Patient, a Journey into Mets World

kelly headshot fall 2014Our December Hear My Voice blogger is Kelly Shanahan, MD, who writes about her shift from being a healthcare provider to being the person receiving health care for bone metastasis.  

I used to think the hardest thing I’d ever done was survive medical school and a 4-year ob-gyn residency at Temple University Hospital when the program was in chaos and we were short five (out of 20) residents. Then I was diagnosed with stage IIB breast cancer in 2008. Then the hardest thing I’d ever done was telling my not quite nine-year-old daughter I had cancer. “Mommy, are you going to die?” was her first question and my answer was “Yes, I’m going to die someday, and so is the cat and so is the dog, but I’m NOT going to die from breast cancer – I’m going to kick cancer’s ass!” Following treatment, I thought, in my arrogant doctor mode, that I was done. I beat the disease, I was a survivor! HA!

While walking upstairs one day in July 2013, I sneezed and immediately developed searing back pain. I ignored the pain, and when it didn’t improve, sought help from a massage therapist and my chiropractor. It didn’t get better and I figured I must have herniated a disc. I’d get an MRI eventually, and maybe one of those inversion tables would fix it. I was a busy gynecologist and I didn’t have time for any herniated disc or chronic back pain.

In a supreme twist of irony, I began subleasing my office to an oncologist one day a week. While dropping off supplies on the day he was there, he noticed me limping. “What’s wrong”, he asked. ”Oh, I think I herniated a disc”, I answered. He looked at me, and said, “You’ve had breast cancer. You need an MRI and a PET scan.” Yeah, yeah, I thought, I’ll get around to it when I have time.

I finally scheduled the MRI and PET for November 14, 2013. Not done with irony, this is my birthday. I figured after the PET scan, I’d go home and go out for a nice dinner with my husband and our daughter, 2 weeks shy of her own 15th birthday.

I had turned my phone off for the tests. First was the MRI, then the PET. Being a doctor who sends lots of patients to the imaging facility where I had the tests done, I knew I could review the results with the radiologist, confirm the herniated disc I just knew I had, stop at Costco on the way home and buy an inversion table and I’d be good as new in no time. HA again. When I went to my car after the PET, there was a message from the oncologist I sublease my office to; I had listed him as my doctor. “Kelly, call me, here’s my cell number” was the message. In that instant I knew I had metastatic disease. I went back into the imaging facility and went to see how bad it was: it was in every bone in my body. Glancing at my scans, my skeleton looked like Swiss cheese. Continue reading